FOSTERING HOME AND COMMUNITY-BASED CARE FOR TECHNOLOGY-DEPENDENT CHILDREN Report of the Task Force On Technology-Dependent Children APRIL 7, 1988 C EH11699] publ fh W REPORT TO CONGRESS AND THE SECRETARY by the Task Force on Long-Term Health Care Policies U.S. Department of Heath and Human Services Order from Superintendent of Documents U.S. Government Printing Office Washington, DC 20402 April 7, 1987 REPORT ON TECHNOLOGY-DEPENDENT CHILDREN APPENDIX - BOOK 2 Table of Contents APPENDIX F Task Force Agenda's APPENDIX G Compilation of Technology-Dependent Children Definitions by Task Force Members APPENDIX H Alternative Methods of Identifying Technology-Dependent Children APPENDIX I Task Force Members Statement of Consensus APPENDIX J Task Force Barrier and Recommendation Working Papers APPENDIX K Witness Testimony Submitted to Task Force APPENDIX F TASK FORCE AGENDA'S STOUFFER CONCOURSE HOTEL CRYSTAL CITY (ARLINGTON), VA TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN AGENDA THURSDAY, DECEMBER 4, 1986 8:00 A.M. Continental Breakfast - Roanoke (Lobby) 9:00 A.M. Introduction of Task Force Members Robert G. Kettrick, M.D., Chairman 9:15 A.M. Welcome/Introductory Remarks Otis R. Bowen, M.D., Secretary, DHHS william L. Roper, M.D., Administrator, HCFA 9:30 A.M. Introduction of Staff Bill Pickens, Executive Director 9:40 A.M. Introduction of Representative Tauke Julie Beckett, Vice-chairman 9:45 A.M. The Congressional Perspective/Role of Legislation Representative Tom Tauke, 2nd Dist., Iowa 10:05 A.M. Break Reports on the State of the Art 10:20 A.M. Office of Technology Assessment Study on Technology-Dependent Children Judy Wagner, Project Director 10:45 A.M. The Role of the Medicaid Home and Community-Based Waiver Program Robert Wren, Director, Office of Coverage Policy, HCFA 11:05 A.M. Evaluation of the Medicaid Home and Community-Based Waiver Program: Status Report Gerald Adler, Project Director, HCFA 11:25 A.M. Study of Model Waiver Programs Serving Chronically Ill Children: Findings and Recommendations Bill Christoffel, Project Director, PHS 11:45 A.M. Question Period for Panel Members 12:15 P.M. Luncheon - Charleston I (Plaza) 1:30 2:15 3:15 4:00 5:30 6:30 Technology-Dependent Children: Perspectives on the Transfer from Hospital to Home P.M. Coordination of Services and Quality Home Care: Overview of Title V Programs Merle McPherson, M.D., Chief Habilitative Services Branch, Division of Maternal and Child Health, PHS P.M. The Provider Perspective: Slide Presentation Robert G. Kettrick, M.D., Chairman P.M. Three Families' Experiences P.M. Break P.M. Reception - Mt. Vernon (First Floor) P.M. Dinner - Monticello (First Floor) Remarks by Sarah Rosenbaum, Children's Defense Fund - Equity for Chronically Ill Children: Issues before the Task Force FRIDAY, DECEMBER 5, 1986 8:00 9:00 9:05 9:30 10:00 A.M. Continental Breakfast - Roanoke (Lobby) A.M. Call to Order, Introduction of Dr. Carolyne K. Davis Robert G. Kettrick, M.D., Chairman A.M. Home Care Alternatives for Technology-Dependent Children: Overview of Progress in the Early Eighties Carolyne K. Davis, National and International Health Care Advisor, Ernst & Whinney New Directions in Health Care Financing: Implications for Technology-Dependent Children A.M. Status Report on the Secretary's Study on Catastrophic Illness Charlene Quinn, Executive Director A.M. Financing Home Care: New Public/Private Coverage Options Harriette Fox, President Fox Associates, Washington, D.C. 11:00 A.M. Break 11:15 A.M. Discussion of Task Force Business Robert G. Kettrick, M.D., Chairing Travel Arrangements and Reimbursement Lillian Lehnert, HCFA Goals and Objectives Approach to Report Future Task Force Meetings 1:00 P.M. Adjournment TORRANCE MARRIOTT TORRANCE, CALIFORNIA TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN AGENDA THURSDAY, MARCH 5, 1987 8:00 A.M. 9:00 A.M. 11:00 A.M. 11:15 A.M. 12:15 P.M. Breakfast - South Bay Room Panel - Private Insurance and Technology-Dependent Children: Access, Innovation, and the Role of State and Federal Regulation Michael A. Calogero, Consultant, Utilization Review, Blue Cross and Blue Shield Association Jan Roughan, RN, BSN, Product Manager, Case Management Services, Equicor-Equitable Corporation Edward A. Oppenheimer, M.D., Physician Coordinator, Pilot Home Care Program, L.A. Medical Center, Kaiser Permanente accompanied by Bob Essink, Director, Enrollment and Group Relations, Kaiser Permanente Joe Wozniak, Security Pacific National Bank, Vice Chairman, L.A. Employers' Health Care Coalition Break Financial and Service Gaps: Realities for Families Monica Loose Jones, Santa Barbara, California Major Stephen Hull, USAF, San Bernadino, California Nancy Yanez, San Dimas, California Luncheon - South Bay Room 10 1:30 P.M. 2:30 P.M. 2:45 P.M. 4:00 P.M. 4:30 P.M. 6:00 P.M. 7:00 P.M. Toward Improving the Quality of Life for Technology-Dependent Children and Adolescents: The Experience at Rancho Los Amigos Medical Center Donna Barras, M.D., Pediatric Department William S. Prentice, RN, BSN, Respiratory Nurse Specialist Break Panel - Coordinating Services for Technology-Dependent Children: Roles of Public Schools, Developmental Disabilities Programs, and State Protection and Advocacy Agencies Carol Inman, Deputy Assistant Secretary for Special Education and Rehabilitative Services, U.S. Department of Education accompanied by Dr. Virginia McDonald, Director HOPE Infant Program, San Diego County Office of Education Pat Del Monico, Executive Director, Harbor Development Disabilities Foundation, Inc., Torrance, California Michael Kluk, Staff Attorney, California Protection and Advocacy Agency Task Force Business Meeting - Discussion of Ground Rules for Reaching Concensus on Definitions and Report Outline Robert G. Kettrick, MD, Chairman Break Reception - South Bay Room Dinner - Remarks on Computer Technology for Children with Special Needs Alan Brightman, Manager, Special Education, Apple Computer Corporation 11 FRIDAY, MARCH 6, 1987 8:00 A.M. 9:00 A.M. 11:00 A.M. 11:15 A.M. 1:00 P.M. Breakfast - South Bay Room Task Force Business Meeting - Reaching Concensus on Definitions Robert G. Kettrick, MD, Chairman Break Other Task Force Business: Goals and Objectives; Review of Proposed Approach to Report; Agendas for Future Task Force Meetings Robert G. Kettrick, MD, Chairman Adjournment (UNLESS OTHERWISE NOTED, ALL SESSIONS WILL BE HELD IN SALON E.) 12 NATIONAL CLAIRON HOTEL (Formerly - Quality Inn Pentagon City) 300 Army Navy Drive Arlington, Virginia AGENDA WEDNESDAY, MAY 6, 1987 8:00 A.M. Breakfast - Arlington North Room TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN (Task Force Members Only) TASK FORCE MEETING IN COMMONWEALTH AUDITORIUM 9:00 A.M. 9:50 A.M. 10:40 A.M. 11:00 A.M. 12:00 P.M. Ms. Beverly Johnson Association for the Care of Children's Health Ms. Karen Shannon Sick Kids Need Involved People (SKIP) Q's and A's by Task Force Members Dr. Arthur Kohrman American Academy of Pediatrics Juanita Fleming, Ph.D. American Nurses Association Q's and A's by Task Force Members Break Terry Penniman, Executive Director American Health Care Association Dr. Moritz Ziegler American Society for Parenteral and Enteral Nutrition Q's and A's by Task Force members Lunch - Arlington North Room 13 (15 (15 (20 (15 (15 (20 (15 (15 (20 Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) (Task Force Members Only) 1:30 P.M. 2:40 P.M. 3:50 P.M. Ms. Pat Sealing, RN, MS National Association of Children's Hospitals Dr. Arnold Paltzker Western Association of Children's Hospitals Mr. Dan Lerman Ms. Bonnie Jellen American Hospital Association Q's and A's by Task Force Members Mr. Val Halamandaris National Association for Home Care Mr. Mel Martin American Association for Respiratory Care Mr. Harold Leitz Mr. Jim Retel National Association of Medical Equipment Suppliers Q's and A's by Task Force Members Dr. Dennis Matthews Children's Hospital of Denver (March of Dimes) Margie Mills American Federation of Home Health Agencies Q's and A's by Task Force Members DINNER ON YOUR OWN 14 (15 (15 (15 (25 (15 (15 (15 (25 (15 (15 (20 Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) THURSDAY, MAY 7, 8:00 A.M. 9:00 A.M. 9:50 A.M. 10:40 A.M. 11:00 A.M. 11:50 A.M. 12:05 P.M. 1987 Breakfast - Monroe Room TO BE ANNOUNCED Group Health Association of Ms. Blue Cross/Blue Shield Association Q's and A's by Task Force Members Mr. Health Insurance Association of Mr. Willis Goldbeck, President Washington Business Group on Q's and A's by Task Force Members America Maxine H. Langer Dan Thomas America Health Break Dr. Jean Elder, Assistant Secretary (Task Force Members Only) (15 (15 (20 (15 (15 (20 Department of Health & Human Services Human Development Services Colonel Jimmy D. Helton CHAMPUS Office of Civilian Health and Medical Program Q's and A's by Task Force Members Dr. Institute for Child Health Policy P.M. Pierce Task Force Business (15 (15 (20 (15 Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Minutes) Review and Comments on Chapter I and II of the Task Force Report. 15 - July Task Force Business Meeting (Shoreham, Washington, D.C.) - structure of Task Force Meeting. - barriers and recommendations to date. - identify areas that lack information on Technology-Dependent Children. - September Task Force Meeting (Chicago) - proposed date change from September 10 and 11 to September 24 and 25. 16 SHOREHAM HOTEL 2500 Calvert Street, N.W. Washington, D.C. Task Force on Technology-Dependent Children AGENDA Thursday, July 9, 1987 7:30 A.M. BREAKFAST FORUM ROOM 8:30 A.M. Components of Appropriate Care A. Subgroup 1 - CAUCUS ROOM (1) Areas of responsibility, Definition of Appropriate Care, Case Management, Respite, Alternatives, and Networking. (2) Members, Hutchins (Group Leader), Anderson, Hawkes, Johnson, Jurkoic, Thrasher, (Staff - Lynn). B. Subgroup 2 - DIRECTOR'S ROOM (1) Areas of responsibility, Definition of Appropriate Care, Research, Prevention, Access to Care, and Developmental Care (Education). (2) Members, Holland (Group Leader), Cohen, Grote, Elder, Nomura, Abbey, (Staff - Nancy) . C. Subgroup 3 - SENATE ROOM (1) Areas of responsibility, Definition of Appropriate Care, Professional Standards, Equipment Standards, Care Giver Training, and Psychosocial. (2) Members, Freedman (Group Leader), Beckett, Kettrick, Grode, Womack, Bellor, (Staff - Chuck) 12:30 P.M. LUNCH FORUM ROOM 1:30 P.M. Appropriate Care Subgroup Reports (Group Leaders have 20 minutes each.) CONGRESSIONAL ROOM 2:30 P.M. Consensus Development on Components of Appropriate Care. 6:00 P.M. DINNER ON YOUR OWN. 17 Friday, July 7:30 A.M. 8:30 A.M. 12:30 P.M. 1:30 P.M. 2:30 P.M. 6:30 P.M. 10, 1987 BREAKFAST FORUM ROOM Financing A. Subgroup 1- CAUCUS ROOM (1) Area of responsibility, Public, Private, Joint Public/Private Financing. (2) Members, Grode (Group Leader), Beckett, Cohen, Bellor, Hutchins, Johnson, Jurkoic, Nomura, Holland, (Staff - Nancy and Chuck). B. Subgroup 2 - DIRECTOR'S ROOM (1) Area of responsibility, Public, Private, Joint Public/Private Financing. (2) Members, Abbey (Group Leader), Anderson, Grote, Kettrick, Elder, Hawkes, Thrasher, Freedman, Womack, (Staff - Lynn and Bill) LUNCH FORUM ROOM Financing Subgroup Reports (Group Leaders have 30 minutes each.) CONGRESSIONAL ROOM Consensus Development on Financing. DINNER ON YOUR OWN 18 NEW AGENDA NEW AGENDA TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN Ramada Executive House 71 East Wacker Drive Chicago, Illinois September 22 - 23, 1987 NEW AGENDA THE CHARGE OF THE TASK FORCE IS TO: Oo IDENTIFY BARRIERS THAT PREVENT THE PROVISION OF APPROPRIATE CARE IN A HOME OR COMMUNITY SETTING TO MEET THE SPECIAL NEEDS OF TECHNOLOGY-DEPENDENT CHILDREN; AND 0 RECOMMEND CHANGES IN THE PROVISION AND FINANCING OF HEALTH CARE IN PRIVATE AND PUBLIC HEALTH CARE PROGRAMS, INCLUDING APPROPRIATE JOINT PUBLIC INITIATIVES, IN ORDER TO PROVIDE HOME AND COMMUNITY-BASED ALTERNATIVES TO THE INSTITUTIONALIZATION OF TECHNOLOGY-DEPENDENT CHILDREN. Tuesday, September 22 7:30 A.M. 9:00 A.M. Breakfast Wabash Room Subgroup I Chagall Room Appropriate Care - Case Management, Respite, Developmental/Education Service, Access and Alternatives. Kettrick (Chairman), Nomura, Freedman, Anderson, Hutchins, Beckett and Gidley. Subgroup II Miro Room Related Components - Networking, Prevention, Research, Professional and Equipment Standards, Care Giver Training Psychosocial, Political, Information, Legal/Philosoplical. 19 -2- Tuesday, September 22 - Continuation Cohen (Chairman), Holland, Elder, Grote, Bellor, Womack and Price. Subgroup III Carmak Room Finance - Public/Private, Coverage, Payments, Eligibility. Grode (Chairman), Abbey, Jurkoic, Thrasher, Johnson, Hawkes and Squire. 12:00 P.M. Lunch Wabash Room 1:30 P.M. Task Force Members Proposals and Recommendations - 4:30 P.M. Recess 5:00 P.M. Working Dinner Chicago Room Continuation of Proposals and Recommendations 8:30 P.M. Recess Wednesday, September 23 7:30 P.M. Breakfast Wabash Room 9:00 A.M. Consensus Development on Proposals and Recommendations. - Chicago Room 1:00 P.M. Adjournment 20 Thursday, 8:00 10:00 10:30 11:00 11:30 12:15 A.M. P.M. P.M. P.M. P.M. P.M. TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN Shoreham Hotel 2500 Calvert Street, N.W. Washington, D.C. 20201 December 3-4, 1987 December 3 Breakfast (Caucus Room) General Meeting (Executive Room) Dr. Norman Fost University of Wisconsin - Madison Department of Pediatrics: Mr. Don Muse Congressional Budget Office Mr. Andy Schneider House Commerce and Energy Committee Ms. Christy Ferguson L.A., Senator Chafee Mr. Robert Wren Health Care Financing Administration Lunch (Caucus Room) PROPOSAL PRESENTATIONS BY TASK FORCE MEMBERS George Grode Steve Freedman/Fred Abbey Joseph Jurkoic/Gene Thrasher Vince Hutchins Recess DINNER ON YOUR OWN 21 Friday, December 4, 1987 8:00 A.M. Breakfast (Embassy Room) CHAPTER REVIEW AND APPROVAL General Meeting (New Lease Room) 9:00 A.M. Chapter 5 Services (Nancy Gidley) 9:300 A.M. Chapter 3 Access (Nancy Gidley) 10:00 A.M. Chapter 7 Information (Lynn Squire) 10:30 A.M. Chapter 10 Political (Lynn Squire) 11:00 A.M. Chapter 8 Quality/Standards (Charles Price) 12:15 P.M. Lunch (Embassy Room) 1:30 P.M. Task Force Business - Chapter 1 and 2 Approval - Writing, Printing, and Publishing of Report. (Deadlines) 2:30 P.M. Adjournment 22 Thursday, 8:00 9:30 5:00 6:00 TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN A.M. A.M. Belleview Biltmore Hotel 25 Belleview Boulevard Clearwater, Florida (813) 442-6171 January 28-29, 1988 AGENDA January 28 Continental Breakfast (Founder Room) General Session (Belaire Room) Review and Approval of Chapter 4-10 LUNCH (West Lounge) Continuation of Review Break Review and Recommendations for Chapters on Financial, Family Support, and Development/Educational Services Recess Dinner (Founder Room) 23 Friday, 8:00 9:30 12:00 1:30 January 29 A.M. A.M P.M. P.M. P.M. Continental Breakfast (Founder Room) General Session (Belaire Room) Continuation Review and approval of Financial, Family Support and Developmental/Educational Services. LUNCH (Founder Room) Unfinished Business Adjournment 24 APPENDIX G COMPILATION OF TECHNOLOGY-DEPENDENT CHILDREN CHILDREN DEFINITIONS BY TASK FORCE MEMBERS 25 26 DEFINITIONS - "TECHNOLOGY DEPENDENT" The following is a compliation of definitions submitted by Task Force members: Technology-Dependent Children 1. A technology-dependent child: + Requires a particular medical device to compensate for the loss of use of a body function; and Requires substantial and complex daily nursing care to avert death or further disability. Using this definition, a technology-dependent child might: + Be dependent on a ventilator at least part of each day; or Require prolonged intravenous nutrition or drug therapy; or Have a daily dependence on other device-based respiratory or nutritional support, including trach tube care, suctioning, oxygen support or tube feeding; or 27 (Note: Have other long-term requirements for extraordinary levels of nursing or monitoring in conjunction with a medical device. This is the OTA definition, supported by Messrs. Grote and Bellor) Ms. Anderson would modify the OTA definition by deemphasizing the need for skilled nursing (e.g., registered nurses) by the following: 2. 3. A technology-dependent child: + Must be constantly assessed and monitored and have skilled care - either specific equipment or techniques - readily available; A technology-dependent child is one whose condition is a long-term, chronic disability and who: gp Requires expensive medical technology equipment either in a hospital or alternate setting; Requires skilled medical care on a routine basis; Requires a level of care below acute hospital care but can be maintained in the home or other ambulatory setting. Below the age of----. (Abbey) 28 4. A technology-dependent child: + Has a severe, chronic ongoing medical problem; + Requires assistive devices to maintain life support, the absence of which would endangered their lives or significantly worsen their condition. + Is dependent on high-tech equipment; + Requires skilled personnel over a sustained period lasting longer than ----; + Requires care more costly than usual routine hospital or home care. (Dr. Cohen) A technology-dependent child is one who is dependent on the special care and life-supporting equipment usually available only in the institutional setting, the use of which is necessary to sustain live. (Dr. Nomura) A technology-dependent child is one who has a chronic health-related condition and whose survival and quality of life is dependent upon medical technology whether it be mechanical, biological or technical." (Dr. Jurkoic) A technology-dependent child: + Is less than 21 years of age; + Has a chronic medical condition requiring 29 10. continual treatment as well as evaluation and planning usually provided in an institution offering 24 hour medical/nursing care; + Has a treatment regimen that can be clearly described and taught to family members and is relatively stable over time. + Has medical, psychosocial and familial needs that can be appropriately met in an non-insitutional setting. (Dr. Freedman) A technology-dependent child is: + Under 18 years of age, + Dependent on life support systems and/or skilled nursing care. (Ms. Grote) A technology-dependent child is one who requires a mechanical medical device to sustain life. (Ms. Hawkes) One task force member suggested that the definition should be viewed in larger context - to include all children with: + significant long-term illnesses; and + chronic disabling conditions. He suggested that this population would total an estimated 15% of the total population of children. 30 The member suggested that program development limited to technology dependent children would not be cost-effective. 11. A technology-dependent child: + Is under 21 years of age; + Requires full or part time use of sophisticated medical equipment; + Requires substantial skilled nursing care to avoid death or further disability; + Requires inpatient hospital care in the absence of home or community-based care. (Thrasher) 12. A technology-dependent child is: + dependent on technologically sophisticated medical equipment or devices for life support, other than leg or arm prostheses. (Elder) 13. A technology-dependent child: + Is under 21 years of age; + Has lost the use of body functions; + Requires the use or availability of sophisticated medical equipment to sustain life; + Requires continuous ambulatory peritoneal dialysis or hemodialysis. (Womack). 31 14. A technology-dependent child: + Is under 21 years of age; + Requires constant or daily use of a medical device to compensate for the loss of a life sustaining body function, or; + Requires constant monitoring by a person other than the child for whom the device is prescribed. (Johnson) 32 Special Needs Special needs include medical devices, nursing care and psychosocial care. (Bellor) Special needs include: + Medical devices, + Technical care necessary to operate devices, + Professional training and monitoring of care givers in providing technical, nursing and personal care, and + Support services for care givers. (Grode) A formal managed care program. (Abbey) The unique requirements of each child for specific services and equipment to sustain and enrich the child's life. (Nomura) Those medically necessary services or technological requirements peculiar to a specific diagnosis or medical condition. (Jurkoic) 33 Care to help children achieve their full potential for functioning in society. Special needs may include health care, educational, psychosocial and assistance with activities of daily living. (Hutchins) Special needs are conditions which require continuing use of or access to medical equipment and/or services on a full or part-time basis due to a specific medical condition; and Physical, environmental, geographical and/or socioeconomic factors which interfere with a person's access to necessary health services and equipment. (Thrasher) 34. 8. Special needs are those particular adaptions required by technology-dependent children to: + Maintain life support, + Provide an enviornment conducive to growth and emotional development, + Stimulate learning, and + Maintain them in the least restrictive environment. (Elder) 9. Special needs are those requirements which a technology-dependent child has for appropriate medical equipment and services as prescribed by a physician. (Johnson) 35 Appropriate Care Appropriate Care is: + The technical care necessary to effectively operate devices and perform services needed to sustain life and avoid further disability; Professional training and monitoring of care-givers in providing technical, nursing and personal care; Support services necessary to enable care-givers to provide continuous, consistent and competent care. (Grode) Appropriate care is care that: + Does not attempt to duplicate an institutional setting; Less costly, in the short term, than institutional care; Is planned by a formal managed care program to meet specific needs of individual children; Includes a separate quality of care system to ensure the program works effectively. (Abbey) 36 3. Appropriate care is: + Services and equipment necessary to sustain life in the home or community setting; + Services and equipment are safe, readily available, reliable, of good quality and user-friendly to caregivers. + at least equal in quality to the care provided in the institution and must be cost-effective. (Nomura) Appropriate care is diagnosis and severity specific medical care provided to an individual with a diagnosed illness or condition and which would be recognized as accepted medical practice by most health care providers. (Jurkoic) Appropriate care is a comprehensive set of individual, family and community-oriented services: + Individual services might include surgical, medical, nursing, case management, early identification and screening, counseling, etc. 37 + Family services might include affordable health insurance, transportation, respite care, housing adaptation, parent to parent support, parent training, etc. + Community services might include public advocacy, quality assurance, interagency coordination, support services not covered by health insurance. (Hutchins) Appropriate care is health care of the level and frequency which will cause the patient's condition to stabilize or improve while reducing the incidence of adverse outcomes from the disease process or the treatment itself. (Thrasher) Appropriate care is the type and amount of specialized personal care required by technology-dependent children to: + Maintain life support, + Provide an enviornment conducive to growth and emotional development, + Stimulate learning, and + Maintain them in the least restrictive setting. (Elder) 38 8. Appropriate care is care that: + Assures that necessary medical devices are properly selected and operated; + Maintains the stable or improving condition of the child. (Johnson) 39 Working Definition of Technology-Dependent Children In the definitions of technology-dependent children provided by members of the task force, the two most common elements were: A technology-dependent child: + Requires a medical device to sustain life (13 out of 15); + Requires skilled nursing care on a routine, daily basis (8 out of 15); o Medical Device + It is clear that the majority of task force members providing definitions feel that dependence on a medical device should be a requirement for defining the population. + The "medical device" referred to should be "expensive," "necessary to sustain life" and normally provided only in an institution. Also implicit in the definition is that required need be on a daily basis. 40 It has also been suggested that the task force should not attempt to provide a list of what constitutes a "expensive," "lifesaving" medical device since such a list could eliminate an otherwise eligible child as new technology emerges. Skilled Nursing Care One member suggested that "skilled care" be substituted for "skilled nursing care" to provide more flexibility in delivery of services. Use of the former language would allow for reimbursemnt of appropriately trained personnel other than registered nurses to provide necessary care. In this same vein, one member suggested that the treatment regimen should be one that can be clearly described and taught to family care givers. Use of the requirement for "skilled care" instead of "skilled nursing care" seems appropriate, e.g., if a non-professional family care giver can be taught to provide skilled care, other non-professionals can be taught to provide these services. 41 Use of appropriately trained non-professionals may: + Increase the availability of service personnel, critical in those areas where a shortage of professions exists or where they are totally unavailable, and + Be more cost-efficient. Of those members who mentioned an age of eligibility, one recommended setting "an age limit," one recommended the age limit be children below age 18 and four recommended below age 21. [For purposes of Medicaid eligibility, the age limit is 18. Private insurers eligibility requirements range from 18 to below age 22 (i.e., eligibility ceases on the beneficiary's 22 birthday) For purposes of P.L. 94-142, "Education of the Handicapped Act," eligibility is from birth to 21.] Working from this base, we have developed a proposed working definition for consideration by the task force. 42 PROPOSED WORKING DEFINITION TECHNOLOGY-DEPENDENT CHILDREN "A technology-dependent child: + Has a long-term chronic disability; + Is 21 years old or under; + Requires daily use of a medical device to sustain life; + Requires daily, ongoing skilled care or monitoring. 43 44 APPENDIX H ALTERNATIVE METHODS OF IDENTIFYING TECHNOLOGY-DEPENDENT CHILDREN 45 ALTERNATIVE METHODS OF IDENTIFYING TECHNOLOGY-DEPENDENT CHILDREN: RECENT RECOMMENDATION Technology-Dependent Children: A Technical Memorandum, Office of Technology Assessment, U.S. Congress, Draft, November 7, 1986; pp. 1-3 and 1-4. "For the purposes of this report...the technology-dependent child population is defined as that group of children who are characterized by the use of a particular medical device that compensates for the loss of use of a body function and who require substantial and complex daily nursing care to avert death or further disability. Specifically, this report considers four separate populations that might be consider to be technology-dependent: I. Children dependent at least part of each day on ventilators; II. Children requiring prolonged intravenous nutrition or drug therapy; III. Children with daily dependence on other device-based respiratory or nutritional support, including children requiring tracheostomy tube care, suctioning, oxygen support, or tube feeding; 46 IV. Other children with long-term requirements for extraordinary levels of nursing or monitoring in conjunction with a medical device. This group can include infants requiring apnea monitors, and often resuscitation, as a consequence of sleep disorders; a proportion of children with diabetes, chronic kidney failure, hemophilia, or other chronic diseases; and children with multiple medical problems who require intense monitoring and medical care as consequence of the quantity of drugs, devices, and therapy they require. "Alternatives to hospitalization for Medical Technology Dependent Children Act of 1986", Report of the Senate Committee on Labor and Human Resources, Report No. 99-306, May 21, 1981. "Medical Technology Dependent Child, Section [2213.] 2313. For purposes of this title, the term "medical technology dependent child" means an individual under the age of 21 who has medical condition (specified by the Secretary in regulations) which would require inpatient hospital services in the absence of home or community-based care, and who is dependent upon medical technology in order to avoid death or serious injury." (p. 10) 47 "The Committee has determined that there are a number of children, who because of injury or congenital disorder, find themselves dependent on advanced medical technology for an extended period of time. In addition to injury-causing accidents, a variety of diseases or birth defects can lead to such dependency. These conditions include cancer, osteomyelitis, neurological trauma, progressive neurological disease, and cardiac and pulmonary disorders. Such children may require advanced technology therapies such as mechanical ventilators, or long-term intravenous nutrition or drug therapy." (p. 6) Catastrophic Illness Expenses: Report to the President, U.S. Department of Health and Human Services, November, 1986, pp. 15-16. "The most useful definition of Catastrophic Illness...is a measure that allows us to identify illness costs which can be borne by individuals and families without having to significantly change their life style or drastically modify their expectations of living standards in the future. Such a definition allows appropriate comparisons across individuals and groups and captures, at the same 48 time, an intuitive sense of catastrophe. Will the financial implications of an illness, for example, use up savings that had been set aside for the children's college education? Will a catastrophic illness financially devastate the patient and family for the rest of their lives? A simple percentage of income threshold is not satisfactory because, for extremely low-income populations, it would define as catastrophic the expense levels associated with routine and normally budgetable health care costs, including typical premium payments for comprehensive health insurance. The problem of low income is different from the problem of health care expense coverage, and is appropriately dealt with by different public policies. The most appropriate definition of catastrophic expenses, therefore, sets a dollar amount below which no expense level is considered catastrophic, however low the family's income. A percentage of income figure is then added to that amount to yield the threshold above which expenditures are considered catastrophic. 49 APPENDIX I TASK FORCE MEMBERS STATEMENT OF CONSENSUS 51 STATEMENT OF CONSENSUS The following has been prepared for your review to verify staff's understanding of agreement reached at the July Task Force meeting, in preparation for development of a statement of consensus. Components of Appropriate Care It was agreed that the following are components of appropriate care: Case Management Respite Care Developmental/Educational Services Case Management with a specified case manager is a component of appropriate care. On a range of 1 to 5, case management is rated a number 1 priority. "Service coordination" is the term the Task Force will use for this function. Service Coordination is defined as a process that: Promotes the effective and efficient organization and utilization of medical, social, educational and other resources to achieve or maintain the maximum potential of the child in the most appropriate, least restrictive environment. Is community-based and family-centered and provides a single service coordinator for each patient and family. Emphasizes comprehensiveness of services and continuity of care. Involves active advocacy on behalf of the child. Is characterized by excellent communication among providers, payors, the child, family and community. Ensures a multidisciplinary team planning process that includes the family and is reviewed regularly and on an "as needed" basis. Includes quality care assurances and appropriate monitoring/evaluation mechanisms. Case Manager: It was agreed that a case manager (service coordinator) should be a single individual with responsibilities for coordinating all services. 52 No consensus was reached on whether or not the service coordinator could be affiliated with (employed by) a third-party payor. There was some concern over possible conflict of interest, bureaucratic mind-set, etc. It is unclear in the transcript if consensus was reached on whether or not a service coordinator should or should not have a specific professional background. Case Manager - Functions To provide a starting point for the Task Force in delineating the functions of a service coordinator, the following is offered. This "list" was developed using various sources, including discussions by the Task Force. Ideally, a service coordinator should: Assist the family to assume their own service coordination, with appropriate support, as soon as feasible. Have clear, up-to-date information on availability of funding sources: State and Federal programs, availability and limits of private health insurance; voluntary organizations. Participate in discharge planning and transfer/follow-up to next appropriate level of care. With the family - coordinate community-based medical, psychosocial, social and educational evaluation and planning services. Arrange care coordination in accordance with the plan of care. Monitor and evaluate all phases of the individual plan of treatment. Be a prudent shopper (purchaser?) for multiple services and devices from many different vendors. Assure consistent quality assurance of those services delivered to the child. Assure continuity of care. The Task Force agreed that a service coordinator need not perform all functions, but could delegate some of the functions to other agencies, individuals, etc. 53 Respite Respite is a component of appropriate care and on a scale of 1 - 5, a number 1 priority. Respite is a service to the family in their care-giving role that provides temporary relief on a planned or unanticipated basis. Respite may take place in-home, out-of-home or in another facility. Provision for respite is part of the care plan. Respite caregiver qualifications depend on the kinds and complexity of care needed by the child. Developmental/Educational Developmental /Educational services are a component of appropriate care. The goals of developmental services is to foster the maximum social and educational development of technology-dependent children and to mainstream where possible. Developmental/Educational services should be "setting independent," i.e., appropriate services should be provided in whatever setting the child is at any given time. Developmental/educational services should be planned specific to each child's capability and potential. Access Access was not identified as a component of appropriate care. The Task Force agreed that Access to appropriate care, across the continuum, should be an entitlement for all technology-dependent children as defined by the Task Force. 54 Alternatives Alternatives are not a component of appropriate care, however, appropriate care can be provided only when alternatives are available. Alternatives should be viewed along a continuum with the focus on family-centered, community-based care, recognizing that the underlying goal is placement for the child in the least restrictive environment. The continuum should include: family, foster homes, adoptive homes, specialized day care, group homes, skilled nursing facilities, rehabilitation hospitals, hospitals, step-down units and hospice. Use of more than one alternative care setting at a time may be appropriate. The family home is not always the most appropriate setting for a technology-dependent child. Regulatory and reimbursement mechanisms must recognize the legitimacy of the full continuum of alternatives. The Task Force would encourage public/private coalitions to survey/review the existance of facilities that make up the continuum of care in their communities. Networking Networking is not a component of appropriate care but is a adjunct necessary to facilitate the provision of appropriate care. Networking is: An activity that provides access to a broad range of resources, services, sharing and ideas through informtion exchange facilitated by a variety of means both formal and informal. Networking facilitates the provision of quality services through communication/coordination/interaction among a broad range of organizations, agencies and individuals in the public, voluntary and private sectors, beginning in the community. 55 Prevention Prevention is not a component of appropriate care. Consensus was reached that the Task Force would make a general statement supporting prevention/health promotion, i.e., adequate, appropriate, early maternity services, early childhood services, accident prevention, etc. Research Research is not a component of appropriate care but certain research is linked to the provision of appropriate care. The Task Force should develop a statement in support of relevant research such as research on prevention; epidemilogical and physiological research; research on the development of new therapies and the efficacy of therapies; research on delivery systems and policy, etc. The statement should include recommendations on the transfer of technology from the lab, to the clinical setting, to the community. Professional Standards It appears that consensus was reached that the Task Force will support the provision of "professional" care by non-professionals whose competency has been certified by licensed personnel. There was no consensus on the development of standards for discharge and supervision of non-hospital care, e.g., who should develop them or how quality care in the home could be assured. Equipment Standards There was consensus that quality standards for both equipment and service of equipment were needed. Dr. Kettrick and Mr. Womack will review the options for establishing such standards and discuss them at the September meeting. 56 58 APPENDIX J TASK FORCE BARRIER AND RECOMMENDATION WORKING PAPERS 59 NOTE TO TASK FORCE MEMBERS The following compilation of barriers and recommendations are taken from a review of all materials received by the Task Force, including testimony - both oral and written, letters and other related documents. Please note that, where available, recommendations are listed under the barrier (identified by lower case letters). Where recommendations were offered, but no specific barrier identified, they are listed under related barriers. 60 RELATED COMPONENTS Subgroup 2 Professional /Equipment Standards Care-giver/Professional Training Networking/Information Psychosocial Research Prevention Political Ethical Page StandardS....cccceecerteertrersctrstracessssscsnnsscsss 1 Training. ceeeeeeeeeeeecccscscscsososocsssssasososssssssssocessl Equipment... cceeeeeeseeseceeecsssssosscsssssssssccscsocscssb NetWOrKing.ooeeeeeeoeeeeeeeeooooosssssssssssscscscscceed Psychosocial. .ceeeeeeeeeesoeesoccososssassssscsssncsasell RESEArCh. cit iiiteiieeeeeeeeeenososesscsccssnssssnnsssssl? Prevention... cece eeeeeeseeeeeesesssessssssssnsesessesld Political, Legal, Bureaucratic, Ethical....c¢ceeeeee.lb Other Professional ISSUES ....ceceeececsscoscscocssocssasl8 61 RELATED COMPONENTS Subgroup 2 Professional/Equipment Standards Care-giver/Professional Training Networking/Information Psychosocial Research Prevention Political Ethical STANDARDS - BARRIERS 1. Lack of nationally recognized and implemented minimal safety and performance standards for care at home. (AFHHA, Davis, McPherson, Matthews, OTA, Cohen, Kohrman, Williams, WACH) a. Federal government should require States to develop standards in conjunction with state and national organizations representing home health providers and families of "high-tech" children. (AFHHA) Shared responsibility for development of standards, accreditation by Feds, professional groups, parent organizations, etc. (Davis, Kohrman) Appropriate role for Feds to bring private sector interest groups together to articulate professional standards. (McPherson) Regionalized systems should include a qualified home discharge team and should implement post-discharge monitoring. (Workshop) Establish safeguards against abuse and inappropriate utilization. (Workshop) Establish standards and/or regulations to insure against cost inefficiency for all services provided. (Workshop) Lack of accountability for quality of care, appropriate utilization and cost effectiveness. (ANA, Workshop) Lack of definition and documentation of case management procedures and standards. (Duggar, OTA) 62 RELATED COMPONENTS Subgroup 2 STANDARDS - BARRIERS 4. Lack of licensing or certification for homemaker/home health aides working with this population. (SoCal Kaiser) Need for a system to monitor and control egquipment/device safety. (McPherson) a. Inaugurate monitored competitive bidding for equipment and provision of services. (Workshop) b. Develop standards and monitoring system to oversee quality and cost of equipment, supplies, patient selection criteria, program development and assessment. (Cohen, Kohrman) Lack of generally recognized QA mechanism in DME. (NAMES, Travenol) (See EQUIPMENT - page 6) 63 RELATED COMPONENTS Subgroup 2 TRAINING - BARRIERS 1. Lack of appropriate training and education, including professionals, paraprofessionals, families. (Workshop, AHA, p.5.. Williams, ACCH, AHCA, AHA, SoCal Kaiser, Travenol, Kohrman) a. Expand role of voluntary organizations as providers of education and family support. (SOF, Voluntary) b. Incorporate principles of care for children with disabilities into training curricula. (Workshop) Cc. Develop and supervise an education program for health workers as a major function of the tertiary centers in regional systems. (Workshop) d. Sponsor continuing education courses aimed at professional and paraprofessional personnel. (Workshop) e. Authorize manpower training grants to professionals in appropriate specialties with priority placed on those with training in home care administration and services. (AHA) f. Professional education at the pre-service and in-service levels to focus on changing attitudes of professionals, building skills in communication, enhancing understanding of child development and family dynamics. (ACCH) g. Hospital staff education should be directed towards sharing responsibility with the parent in whatever way is compatible with the best medical care for the patient. (Workshop) h. Training to enhance appreciation for interdisciplinary input. (ACCH) i. Training to prepare professionals for providing care in the community (home) and for assisting parents to obtain such care. (ACCH, p.4, Howard, SOF) J. Programs to build skills of parents to work collaboratively with professionals [e.g., Collaboration among Parents and (Health) Professionals (CAPP) program out of the Federation of Children with Special Needs]. (ACCH, p.4, Workshop) 64 RELATED COMPONENTS Subgroup 2 TRAINING - BARRIERS k. Provide mechanisms in hospitals to encourage parents in providing the care they wish to provide, e.g., "Care by Parent Units" in hospitals. This allows for full parent participation in care, offers some reasonable limit of liability for hospital, creates a transition between hospital and home and reduces some of the costs for care. (ACCH, p.5, Workshop) Expand Title V MCH block grants to provide a companion program to be administered by state programs for children with special needs to provide ongoing case management, service coordination and financial assistance. (AHA) Provide more Federally sponsored and funded caregiver and professional training programs for highly specialized services. (Cohen) Require families to pass home care aide course. (Howard) Increase education of physicians and other health care professionals about the complex needs of technology-dependent children and families. Continue research and demonstrations on the cost effectiveness of care at home. Widely disseminate the findings to insurors so that community-based and home care options can be incorporated into their plans. (AHA) Unavailability of trained personnel for home care. (AHA; Goodwin; Davis; Lane, Kohrman, OTA, NACHRI) de. Authorize manpower training grants to professionals in appropriate specialties for this population with priority placed on those with training in home care administration and services. (AHA) Development of minimal skills levels. (McPherson) Expand Title V MCH block grants to provide a companion program to be administered by state programs for children with special needs to provide ongoing case management, service coordination and financial assistance. (AHA) 65 RELATED COMPONENTS Subgroup 2 TRAINING - BARRIERS 3. Physicians reluctance to communicate with parents. (Goodwin) 4. Lack of professional staff knowledge of developmental processes. (AHCA) RELATED COMPONENTS Subgroup 2 EQUIPMENT - BARRIERS 1. Lack of minimal safety and performance standards for use of equipment at home. (McPherson, NAMES, Travenol, SoCal Kaiser) a. Inaugurate monitored competitive bidding for equipment and provision of services. (Workshop) b. Develop standards and monitoring system to oversee quality and cost of equipment, supplies, patient selection criteria, program development and assessment. (Cohen, Kohrman) Cc. Support JCAH development of accreditation standards for DME industry. (NAMES) Inconsistent, inadequate or difficulty in servicing and maintaining equipment. (Travenol, Cohen) a. Require DME suppliers to perform periodic preventative maintenance on home equipment according to manufacturers specifications to prevent malfunctions. (Travenol, Monahan) b. Support availability of 24 hour, 7 day system for suppliers to respond to urgent needs. (Travenol) Lack of equipment to adequately meet patient needs. (AHCA, Goodwin, Travenol) a. Set up central purchasing of equipment with loan or rental for this population. (Workshop) b. Contract with major firms (e.g., Sears) to develop a specialty catalog for non-Rx medical supplies. (Goodwin) Cc. Assure against creation of supply monopolies. Cohen) High supplier liability costs related to equipment reliability. (NAMES, NACHRI) Refusal of some manufacturers to accept liability for equipment modified for a child's use. (Kohrman) 67 RELATED COMPONENTS Subgroup 3 EQUIPMENT - BARRIERS 6. "Horrendous" paperwork associated with approval of DME for home care. (NAMES) a. Support prior approval mechanisms (reimbursement policies) that speed payment for DME. (NAMES, Travenol) Lack of reimbursement for paperwork associated with funding, verification of training, coordination of care activities performed by DME suppliers. (Travenol) 68 RELATED COMPONENTS Subgroup 2 NETWORKING - BARRIERS 1. Lack of support systems including psychosocial counseling, nutritional information, education resources, networking & respite, transportation, equipment loan, day care and babysitting, early intervention, access to community schools, including issues unique to rural areas. (CARE, p. 1; ACCH, p.7; a. McPherson; Goodwin, Lane, Workshop, Kohrman, Cohen) Financing agencies recognition of the need for (legitimacy of) services other than strictly "medical." (ACCH, Goodwin) Provide financial incentives to encourage development of innovative community support programs. (ACCH, p.7) Establish principle point of contact in States to coordinate information exchange on technology-dependent children. (Grode) Contract with major firms (e.g., Sears) to develop a specialty catalog for non-Rx medical supplies. (Goodwin) Set up central purchasing of equipment with loan or rental for this population. (Workshop) Expand role of voluntary organizations as providers of support and education. (SOF, Voluntary) of information on: Community services and sources of support for families; (ACCH, Goodwin, Workshop) Ways to finance services; (ACCH,Goodwin, Workshop) Child's medical condition in terminology understandable to non-professionals. (ACCH, p.6) Available funding sources, notably the Medicaid waiver program. (Goodwin, NACHRI, Dugger) 69 RELATED COMPONENTS Subgroup 2 NETWORKING - BARRIERS f. Publicize waiver program more aggressively. (Dugger) Toll-free telephone information systems to provide accurate and current "community specific" information to parents and professionals. (ACCH, Goodwin) Family libraries or parent information centers, special collections in public libraries, frequently updated directories in physicians' offices and clinics. Development of networking for parents. (ACCH,p.6;Goodwin) Develop clearinghouse for resource materials. (Workshop, NAMES) Establish principally point of contact in States to coordinate information exchange on technology-dependent children. (Grode) Lack of public unawareness of problems of disabled. (Workshop) a. b. Form groups to increase public awareness. Make government officials and third party payer executives aware of the cost and humane benefits resulting from a system of community care. Parent's groups should be formed to keep parents aware of their rights. Develop a national clearinghouse with local community outlets. Develop liaison with community school systems to allow for tutoring and entry (mainstreaming where possible.) Expand Title V MCH block grants to provide a companion program to be administered by state programs for children with special needs to provide ongoing case management, service coordination and financial assistance. (AHA) 70 RELATED COMPONENTS Subgroup 2 NETWORKING (Con't) g. Continue research and demonstrations on the cost effectiveness of home health care alternatives. Widely disseminate the findings to insurers so they may incorporate community-based and home care options into their plans. (AHA)p.1ll) Expand and strengthen Medicaid preventive health services especially prenatal care and delivery for eligible pregnant women. (p.1ll) 71 RELATED COMPONENTS Subgroup 2 PSYCHOSOCIAL - BARRIERS 1. 6. Lack of information on community services and sources of support for families; a. Develop clearinghouse for resource materials. (NAMES, Workshop) b. Toll-free telephone information systems to provide accurate and current "community specific" information to parents and professionals. Cc. Family libraries or parent information centers, special collections in public libraries, frequently updated directories in physicians' offices and clinics. d. Development of mechanisms for putting parents in touch with other "experienced" parents. (ACCH, p.6) Lack of community support services, including respite, support groups, day care and babysitting, networking, psycbosocial counseling, etc. (CARE, ACCH, McPherson, Goodwin, Lane, Workshop, Kohrman, Cohen) a. Develop a national clearinghouse of resource material. (Workshop) Inability of some families to provide home care adequate for technology-dependent children, e.g., single parents, working couples, poor living conditions. (Thrasher) Stress created by instability and inconsistency in medical, social management, in financing and in lengthy, frustrating negotiation for services. (OTA, NACHRI) Loss of privacy and disruption of norml sleep patterns and other activities. (Travenol) Lack of respite care options increases caretaker exhaustion, problems with other sibling. (NACHRI) a. Recognition by financing agencies of the need for services other than strictly "medical." Financing incentives to encourage development of innovative community support programs. (ACCH, p.7) (Discussion by Subgroup 1 - RESPITE) 72 RELATED COMPONENTS Subgroup 2 RESEARCH - BARRIERS Need basic biomedical research. (McPherson) Need information on factors which could improve pregnancy outcomes. (Workshop) a. Support continued research of NIH and elsewhere directed at prevention of birth defects, reduction of infant morbidity and mortality and reduction of environmental hazards. (Kohrman) Research on impact on families. (McPherson, Kohrman, NACHRI) a. Multiple-center resource research. Research on what is "best care" for these children. (Kettrick, NACHRI, Kohrman) Lack of necessary epidemiologic and demographic data to develop appropriate programs for technology-dependent children. (Workshop) Research on treatment interventions to measure outcomes. (Workshop, Monahan) Inadequate recordkeeping of State/local costs and program data hampers analysis. (Beckett, Dugger. Research to determine effective methods for education of professionals and for patient education. Workshop) Review past experience of national programs requiring complex medical technology to identify problems in the programs and identify solutions. (Workshop) a. Continue research and demonstrations on the cost effectiveness of home health care alternatives. Widely disseminate the findings to insurers so they may incorporate community-based and home care options into their plans. (AHA)p.1ll) b. Include children and young adults in demonstration projects and studies of catastrophic insurance coverage conducted by the Federal government. (NACHRI) 73 RESEARCH RELATED COMPONENTS Subgroup 1 - BARRIERS Joint public/private demonstrations to address issues of: + multi-level hospital and institutional care systems, + outpatient vs. inpatient, _G cost benefit of different kinds of case’ management and, + development of trust funds to finance long-term care of disabled children. (Kohrman) Support further studies which: =~ ~ + examine technology support services in home care, + develop common data sets for national in-home monitoring, + determine health outcomes that may be related to in-home mechanical ventilation; + outline distribution and availability of home ventilators, and + collect data on home ventilator safety-related costs and charges. (Monahan) Develop program exchange for State-based programs through HCFA or NGA survey. (Grode) (Note: done by IHPP and distributed to TF 6/87) Analyze feasibility and cost consequences of establishing home care benefit for technology-dependent children as an optional benefit under Medicaid. 74 RELATED COMPONENTS Subgroup 2 PREVENTION - BARRIERS 1. Lack of funding for prevention activities at all levels of government. (SOF, "Medicaid" a. Mandate Medicaid coverage for pregnant women and children under age six whose incomes are below the Federal poverty level. (NACHRI, p.l.) b. Require all employers to provide minimum health benefits including prenatal care. (Bellor, NACHRI) Cc. Expand and strengthen Medicaid preventive health services especially prenatal care and delivery for eligible pregnant women. (p.ll) d. Require WIC program to continue provision of nutritional supplies to technology-dependent children after the age of five. (AFHHA) 75 RELATED COMPONENTS POLITICAL, LEGAL, BUREAUCRATIC - BARRIERS 1. Lack of national policy commitment to needs of children. (Kohrman, NAMES) a. Create body at Federal and State levels to coordinate care for special needs children. (Cohen) b. National workshop sponsored by HCFA and HRSA to obtain consensus on case management standards. (Dugger) Cc. MCH should convene a national consensus conference to develop model plans for alternative care options for adoption by State MCH agencies. Government/State reluctance to replace charitable care with government benefits - fear of "woodwork effect." (SOF, NACHRI, Voluntary) Insecurity of continued public and private financing sources makes future planning problematic for States. (Kettrick) a. Develop coordinated public/private funding combinations for long term care of high cost technology-dependent children. (Calogero) b. Examine proposals for cost-sharing as sliding payment scales under Medicaid to allow middle and upper class families to buy-into Medicaid long-term care benefits. (Fox) Cc. Establish State level insurance pools for individuals and those unable to obtain reasonably priced insurance. (Bellor, NACHRI) d. Modify Medicaid EPSDT program and increase federal funding to support inpatient, outpatient, and home care of technology-dependent children. (Johnson, SOF, "Medicaid") e. Enact State-financed or regional catastrophic coverage expense programs. (Fox, NACHRI) f. Establish Federal entitlement program to assist families with catastrophic unmet costs. (NACHRI) 76 POLITICAL, LEGAL, BUREAUCRATIC - BARRIERS 10. g. Encourage States to require health insurors to provide home care in lieu of hospital care in all policies. (NACHRI) h. Experiment with group insurance pools not based on employment - e.g., based on school-age children. (Freedman) i. Amend Medicaid to provide incentives for States to enact mandatory high-risk catastrophic insurance pools. (Fox) J. HHS should facilitate freedom-of-choice waiver application process to enable States to use capitation contracts for risk pools. (Fox) k. Implement Public/private initiatives to support/fund development of transitional care facilities and other home-like units. (NACHRI, Prentiss) Unavailability of information on State financed and waiver programs, especially regarding issue of cost shifting (reluctance of States to publicize). (Beckett, SOF, Dugger) Federal Medicaid rules for waivers are complex and difficult to understand and implement. Insufficient and conflicting information. (OTA, NACHRI) a. Streamline Medicaid waiver process. (NACHRI) b. Require Medicaid-CCS coordination of Medicaid waivers serving chronically ill children. (Dugger) Age restrictions in State and Federal eligibility for programs. (Beckett) Lack of coordination among involved public agencies at Federal and State levels. (Cohen) Inadequate record keeping of State/local cost and program data hampers analysis. (Beckett, SOF, Duggar) Overselling by advocates of cost-effectiveness as basis for providing home-based services limits current program flexibility. (OTA) CHAMPUS - DOD's restrictive interpretation of the programs prohibition against coverage for "custodial care" excludes most technology dependent children from home care services. (Hawkes) 77 POLITICAL, LEGAL, BUREAUCRATIC - BARRIERS 11. 12. 13. 14. 15. 16. 17. Massive paperwork and delays involved in preauthorization of CHAMPUS benefit, Medicaid waivers. (Hawkes, NACHRI, Calogero, SOF, "Medicaid") Federal requirements for Federally qualified HMOs for "basic health services" do not include shift nursing and DME. (Nomura) Impact of ERISA loophole. (Grode) ERISA restrictions on State insurance regulatory authority. (Fox) Failure of health care system to adapt to changes family structures. (Goldbeck) Reluctance to make intelligent investments in prevention, family planning, birth control, prenatal care. (GoldbecKO "Horrendous'" paperwork associated with approval of DMS for homecare. (NAMES) Miscellaneous Recommendations a. Under auspices of HHS, guidelines for home care of chronically ill children should be developed by consortium of organizations representing parents, physicians, providers, hospitals, HHAs and others. (Kohrman) b. Support Kennedy-Stark proposal for State-mandated high-risk pools. (Fox) Cc. Answer basic political, ethical and moral issues -- who should pay and who should benefit. (Johnson) d. Consider ethical issues surrounding extending life support of highly compromised infants. (Kohrman) e. Support National Governor's Association's current effort to increase health insurance coverage for a number of maternal and child health problems. f. Recognize legitimacy of patient advocacy movement. (Goldbeck) 78 RELATED COMPONENTS Subgroup 2 Other Professional Issues - BARRIERS 1. Medical malpractice liability issues creating a more expensive care system. (McPherson) a. Case management system that requires periodic review by care team. 79 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 Access Case Management Developmental /Educational Alternatives Respite Page ACCESS. creer setssersnssnssessnsssessesssnssesssssnseal Case Management... oeeeeeeccccssssssosscssssssssssseel Developmental/Educational.....ceeeeeeeeesesesessssl? Alternatives......... FE ReSPite. ieee eeeeseeseeseecsssasssoscsssssssssnssealbd 80 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 Access Case Management Developmental /Educational Alternatives Respite ACCESS - BARRIERS Age restrictions in Federal and State eligibility for programs. (Beckett) Inconsistent interpretation and administration of benefits under Medicaid. (Kluk) Limits in Medicaid related to eligibility and coverage for home care. Number of allowable home visits varies by state and is often inadequate. The rate of reimbursement in many states is below the cost of providing services. (Kluk; AFHHA, p.5) a. Require Medicaid programs to provide appropriate coverage of necessary home visits, including daily or around the clock care where it can be provided for less than institutional care. (AFHHA, p.5) Lack of Medicaid State plan flexibility or non-coverage of needed services, i.e., communication devices, specialized wheelchair adaptations, etc. (AHCA, p.5) Medicaid waiver rules are complex and difficult to understand and implement. Information is insufficient and often conflicting. (OTA, NACHRI) Massive paperwork and delays in preauthorization of Medicaid waivers. (NACHRI, Calogero, SOF, "Medicaid.") Not all poor children or pregnant women financially eligible for Medicaid. (Fox, SOF Medicaid) a. Mandate comprehensive expansion of Medicaid for poor or near poor. (Bellor, NACHRI, Beckett, SOF, "Medicaid," NACHRI) b. State mandated cost-effective risk pools should include uniform eligibility and public/private purchase options for high risk children. (Fox, Beckett, SOF) 81 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 10. 11. 12. 13. Cc. Examine proposals for cost-sharing as sliding payment scales under Medicaid to allow middle and upper class families to buy-in to Medicaid long-term care benefits, (Fox) Federal requirements for Federally-qualified HMOs for "basic health services," do not include shift nursing and DME. (Nomura) Low overall plan maximums, no catastrophic stop-loss coverage, recurring, pre-existing condition exclusions. (NACHRI, Grode, SOF, Fox) a. Comprehensive insurance, including catastrophic coverage for all special needs children. (Cohen, Kohrman) b. Allow employer deductions from tax for employee health insurance only if catastrophic protection is provided. (Bellor, NACHRI) Cc. Liberalize private insurance lifetime benefit maximums and out-of-picket spending limits. (Fox) d. Eliminate or restrict benefit waiting periods for pre-exising conditions. (Fox) Reliance on employment as key distribution vehicle for private HI results in large numbers of uninsured because of adverse selection factors. (Goldbeck) a. Follow insurance strategy that provides coverage through vehicles other than employment. (Goldbeck) Employer-based insurance system threatens loss of coverage, traps families into jobs. (Fox, NACHRI, Freedman) Lack of insurance or underinsurance for home care options for children of low and moderate income. (Fox, NACHRI) ERISA restrictions on State insurance regulatory authority. (Fox) 82 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. ERISA loophole permits self-insurers to escape mandated benefits. (Grode, Fox, Options) a. Focus attention on ERISA loophole. Employer practices leading to larger numbers of workers not provided health care coverage. (Thrasher) Prohibitively expensive deductible, co-payment and other out-of-pocket expenses, including remodeling, electricity, etc. (Travenol, NACHRI) CHAMPUS - inability to obtain accurate information from CHAMPUS on coverage. (Brennan) CHAMPUS - restrictive limits on what will be covered at home. (Brennan, Hawkes) $1,000 limit on CHAMPUS program for the handicapped benefits. (Hawkes) a. Expand financial limits and stop-loss coverage under CHAMPUS' Program-for-the-Handicapped. (SOF, CHAMPUS) CHAMPUS - difficulty in qualifying for HHC demonstration because of "level of care" restriction. (Hawkes) CHAMPUS - massive paperwork and delays involved in preauthorization of benefits. (Hawkes) Medicaid ineligibility for many beneficiaries of CHAMPUS. (HAWKES Insecurity of continued public/private financing sources makes future planning problematic for States. (Kettrick, NACHRI) Fragmented coverage of services, i.e., programs that will pay for certain services but not pay for monitoring necessary to determine the necessity for such services. (Kluk) Local payment sources lack of agreement with State-wide-policies. (Kluk) 83 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. Lack of professional and public awareness of availability of funding/services in public/private programs. (NACHRI, Beckett, SOF, Dugger) Reluctance on behalf of payment sources to accept responsibility for payment. (Kluk) Unavailability of payment for skilled nursing services in the home because of restrictions on the number of visits or interpretation by insurors that if parents can provide the care it must be custodial. (AHA,p.4., Hawkes) Lengthy/frustrating negotiation process often seen as demeaning/intimidating by families. (NACHRI) Massive paperwork and delays in preauthorization of Medicaid waivers and CHAMPUS benefits. (Hawkes, NACHRI, Calogero, SOF, '"Medicaid") Corporate attitudes, ie., "avoid paying claims," of insurance companies, Medicaid, other payers. (Grote, SOF, Medicaid, NAMES) Voluntary charitable organizations' role limited by budgetary, administrative and coordination short comings. (Grote, Beckett, SOF, "Voluntary." Lack of respite care. (CARE, p. 6; AFHHA, p.5; ACCH, p.7; AHA, p.4; AHCA, p.3; Goodwin; Lane, Workshop, NACHRI, Kohrman, Cohen) (See RESPITE - page 16) Limited availability of alternatives to acute hospital care or home care, i.e., foster homes, supervised apartments, group homes, pediatric SNFS, etc. (CARE, p. 7; Kluk, p.5; AFHHA, p.5; AHCA, p.3: Goodwin; WACH, Workshop, Cohen, NACHRI, Kohrman, Cohen, Fox, OTA, NACHRI, Jones, Hawkes) (See ALTERNATIVES - page 13) Lack of professionals to provide highly specialized services (actual and distributional shortages). Lane, Davis, Cohen, Kohrman, ANA, OTA, SoCal Kaiser, Travenol) 84 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 36. 37. 38. Need for appropriately trained personnel at all levels of care. (Workshop, AHA, p.5., Kohrman) (Discussed by Subgroup 2 - TRAINING) Shortage/unavailability of reliable HHAs in rural areas who can provide nursing, supplies, medical equipment. (Davis, Lane) Instability of HHA nursing staff. (Goodwin) a. HHAs should offer appropriate benefits, i.e., insurance, vacations, etc., to attract permanent, committed staff. (Goodwin, OTA, NACHRI) Utilize unemployed nurses living in rural areas, provide specialized training in managing chronic disease in children, permit them to work out of their homes. (Freedman) Regional co-op buying for equipment, supplies and some of the human services, such as nursing. (Freedman) Recognition by funding sources of the need for a level of care between acute and traditional long-term care. (AHCA, p. 6) Recognition by funding sources of the need for both short and long-term care and flexibility within various levels-of-care (AHCA, P.6) Recognize legitimacy of non-physicians to meet needs traditionally provided by family members who used to stay at home. (Goldbeck) Adopt multi-tiered institutional models to provide care: acute care facilities, transitional units and non-institutional alternatives. (Workshop) MCH should convene national consensus conference to develop a model plan for alternative care options for adoption by State MCH agencies. (NACHRI) 85 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 39. 40. 41. 42. 43. i. Joint public/private demonstrations to address issues of multi-level hospital and institutional care systems, outpatient vs. inpatient, cost benefit of different kinds of case management and development of trust funds to finance long-term care of disabled children. (Kohrman) J. Inadequate funding, coverage for appropriate settings. Lack of equipment to adequately meet patient needs. (AHCA; Goodwin, Kohrman, Holland, Travenol) (Discussed by Subgroup 2 - EQUIPMENT) Reluctance of school systems to admit technology-dependent children. (Lane) (See DEVELOPMENTAL BARRIERS - page 12) Lack of Federal and State guidelines on where the responsibility lies in the provision of and payment for services to a technology-dependent child in the school. (Inman, OTA, NACHRI) (See DEVELOPMENTAL BARRIERS - page 12) Poor coordination of health-related services in schools. (Inman, Cohen) (See DEVELOPMENTAL BARRIERS - page 12) Lack of coordination among involved public agencies and Federal and State levels. (Cohen) 86 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 ACCESS - BARRIERS 44. 45. Community resources are frequently: + + + Unskilled in handling immediate or short-term care of these children; Unwilling to consult with tertiary care centers when presented the need for giving emergency care, Unwilling to expend additional time and effort for care. (WACH) (Discussed by Subgroup 2 - NETWORKING) Lack of information on: + Community services and sources of support for families; Ways to finance services; Child's medical condition in terminology understandable to non-professionals. (ACCH; Goodwin) Available funding sources, notably the Medicaid waiver. (Goodwin, MACHRI, Dugger) (Discussed by Subgroup 2 - NETWORKING) 87 COMPONENTS OF APPROPRIATE CARE SUBGROUP 1 CASE MANAGEMENT - BARRIERS 1. Lack of an organized system capable of assuring coordination of services, communication among providers and continuity of care. (ANA, NACHRI, Williams, Davis, AHA, Lane, WACH, Workshop, Grote, Dugger, Roughan, Fox, Kohrman, Calogero, Cohen, Goldbeck) a. Encourage development throughout U.S. of regionalized comprehensive, information referral and care delivery systems based on SPRANS successes. (NACHRI) Provide case management through CCS. (Grote, NACHRI) Require CCH to case manage Medicaid waivers for chronically ill children. (Dugger) Create body at Federal and State levels to coordinate care for special needs children. (Cohen) All services should have regional coordination. Emphasis should be on the community-based component of the regional system. (Workshop) Funding must be found to develop regional systems beyond the initial MCH pilot projects. (Workshop) Public and private reimbursing agencies should participate in the development of the regional system. (Workshop) Provide case management through multidisciplinary, home care services, such as "Kids at Home National, Inc." (Grote) Expand extra-contractual case management programs to provide cost-effective alternatives to hospital care for certain specific chronic conditions. (Roughan, Fox, Kohrman) Earlier identification of high cost candidates for managed BC/BS voluntary are program. (Calogero) 88 APPROPRIATE CARE Subgroup 1 CASE MANAGEMENT - BARRIERS k. 1. Expand acceptance by insurers of meeting complex technology-dependent children's needs through multidisciplinary team approach. (NACHRI) Expand acceptance by payers of anticipatory planning and continuous case management. (Kohrman) Require under P.L.'s 94-142 and 99-157 a coordinated written plan between health providers and educational authority for providing health services in schools that need educational, developmental, medical needs. (Cohen, Inman) Expand Title V MCH block grants to provide a companion program to be administered by state programs for children with special needs which would provide ongoing case management, service coordination and financial assistance to families. Encourage private insurers to develop case management systems for chronically ill children with care coordinator involved in discharge planning and scheduling, transition to home and continued coordination of medical, nursing, equipment and psychosocial services, acquisition and family training and respite needs. Encourage expansion of the model regionalized systems (Title V MCH SPRANS projects). Encourage model regionalized systems which allow community resources to be tiered and better coordinated so that multiple levels of care are available. (AHA) Build the competency of primary and secondary care providers, particularly in areas distant from specialty centers. Develop financial incentives for providers which combine in-service education on the complex care needed by technology-dependent children. (ACCH,p.8) Tailor services to meet child's and family's needs. (Matthews) Case management system must be "user-friendly." (WACH) 89 COMPONENTS OF APPROPRIATE CARE Subgroup 1 CASE MANAGEMENT - BARRIERS u. Encourage regionalization of care begun through SPRANS projects (SOF, Kohrman, NACHRI) Vv. Maintain loose definition of case management to get broadest coverage from large self-insurers. (Goldbeck) We "Appropriate care" requires inclusion of services such as case management, home modification, respite care and other physical and emotional support services. (Goldbeck) X. Fund case management adequately as a separate component of care. (Cohen) v. Replace flat benefit limits with individually-tailored service care plans. (NACHRI) Z. Encourage development throughout U.S. of regionalized comprehensive, information referral and care delivery systems based on SPRANS successes. (NACHRI) Lack of efficiency in managing multiple sources of financing. (McPherson) a. A system to coordinate all sources to develop a benefit package. Need for coordination and communication between State agencies, schools, medical and related services. (Inman) Inadequate, inappropriate/insufficient discharge planning, family instruction, coordination of services/funding. (Kluk, Travenol, Kohrman) a. Include the following elements in planning: + Family involvement as early and as much as possible, (Matthews, Workshop) + Collaborative discharge planning that utilizes a multidisciplinary approach, + Alternatives to lengthy hospitalization, and + Reimbursement for home care services. (Matthwes) b. Full participation by parents and siblings in all processes of medical care. (Workshop) 90 COMPONENTS OF APPROPRIATE CARE Subgroup 1 CASE MANAGEMENT - BARRIERS 5. Poor coordination of health-related services in schools (Cohen, Inman) (See DEVELOPMENTAL - page 12) Lack of flexibility in interpretation of financial, qualifications for extra-contractual care by insurers, Medicaid, CHAMPUS, HMOs. (Nomura) Medical malpractice liability issues are creating a more expensive care system. (McPherson) a. Case management system that requires periodic review by care team. (McPherson) Absence of publicity in employer community about case management demonstrations and waiver program. (Goldbeck) 91 COMPONENTS OF APPROPRIATE CARE Subgroup 1 DEVELOPMENTAL - BARRIERS 1. Attitudes of professional staff who are medically competent but lack knowledge of developmental processes. (AHCA, Matthews) Lack of attention to developmental needs during early stressful period. (Kettrick) Lack of Federal/State guidelines on where the responsibility lies in the provision of and payment for services to a technology-dependent child in the school. (Inman, OTA, NACHRI) a. Use third-party payments to fund services in schools. (Cohen) Reluctance of school systems to admit technology-dependent children. (Lane) a. Address jointly by the educational and health care communities to develop collaborative models establishing a new, comprehensive system that meets the needs of this population. (Inman) b. Possible solution in Part B of the Education of the Handicapped Act - P.L. 99-457. (Inman) Poor coordination of health-related services in schools. (Cohen, Inman) a. Require under P.L.'s 94-142/99-157, a coordinated written plan between health providers and educational authority for providing health services in schools that meet educational, developmental, medical needs, (Cohen, Inman) 92 COMPONENTS OF APPROPRIATE CARE Subgroup 1 ALTERNATIVES - BARRIERS- 1. Limited availability of alternatives to acute hospital care or home care, i.e., foster homes, supervised apartments, group homes, pediatric SNFS, etc. (including managed home care for CHAMPUS families). (CARE, p. 7; Kluk, p.5; AFHHA, p.5; AHCA, p.3; McPherson; Davis; Goodwin; WACH; Williams, Workshop, Hawkes, Kohrman, Cohen, NACHRI) a. Encourage model regionalized systems which allow community resources to be tiered and better coordinated so that multiple levels of care are available. (AHA) b. MCH should convene a national consensus conference to develop model plans for alternative care options for adoption by State MCH agencies. (NACHRI) Cc. Permit specially trained non-professional persons to provide care under appropriate supervision. Advantage: More cost effective, reduces financial disincentives to development of alternates, extends professional labor pool and still provides safe, quality assured services. (CARE, p.7, Oppenheimer) d. Provide Federal funding and assistance to set up small group homes for the care of children abandoned by parents (AFHHA, P.5) e. Recognition by funding sources of the need for a level of care between acute and traditional long-term care. (AHCA, p. 6) f. Recognition by funding sources of the need for both short and long-term care and flexibility within various levels-of-care (AHCA, P.6) g. Development of pediatric transitional care facilities, short and long term medical foster care and community based group homes. (WACH) h. Reimbursement incentives to encourage appropriate home care. (Travenol) i. Encourage States to require health insurers to provide home care in lieu of hospital care in all policies. (NACHRI) 93 COMPONENTS OF APPROPRIATE CARE Subgroup 1 ALTERNATIVES - BARRIERS j. k. Replace flat benefit limits with individually-tailored service care plans. (NACHRI) Public and private initiatives must be implemented to support/fund development of transitional care facilities and other home-like units. (NACHRI, Prentiss) Lack of financial incentives for health care providers to change their focus from "inpatient hospitalization to home care." (Matthews) + RU Unskilled in handling immediate or short-term care of these children; Unwilling to consult with tertiary care centers when presented the need for giving emergency care, Unwilling to expend additional time and effort for care. (WACH) Alternative health care delivery systems must be vertically integrated into the traditional system of health care to assure economic survival. (Matthews) Diversification of services emerges through new product lines and delivery systems such as "Care by Parents" units, extended or palliative care units, twenty-three hour clinics, early discharge programs and hospital-based home health agencies. (Matthews) Continue CHAMPUS HHC demonstration for families of active duty personnel. (Hawkes) Include the following elements in planning: + Family involvement as early and as much as possible, (Matthews, Workshop) + Collaborative discharge planning that utilizes a multidisciplinary approach, + Alternatives to lengthy hospitalization, and + Reimbursement for home care services. (Matthews) Full participation by parents and siblings in all processes of medical care. (Workshop) Inadequate private insurance coverage for home health benefits, i.e., visit limits, exclusion of therapies, exclusions for disposable supplies. (SOF, Travenol) 94 COMPONENTS OF APPROPRIATE CARE Subgroup 1 ALTERNATIVES - BARRIERS 4. Stringent Medicaid gate-keeping mechanisms to control program costs. (SOF, Medicaid) 5. Secondary problems are arising as home health coverage becomes more acceptable, e.g., DRG's offer incentives to mandate home care and accelerate hospital discharge even for unprepared families, limiting choices. (OTA) 95 COMPONENTS OF APPROPRIATE CARE Subgroup 1 RESPITE - BARRIERS 1. Lack of respite care. (CARE, p. 6; AFHHA, p.5; ACCH, p.7; AHA, p.4; AHCA, p.3; Goodwin; Lane, ANA, Workshop, NACHRI, Kohrman, Cohen, Hawkes) a. b. Available on a planned and emergency basis, both in and out of the home through pediatric hospices. (CARE) Provide Federal funding and assistance to set up respite care programs (AFHHA, p. 5) Establishment of pediatric SNFs. (AHCA, P.3) Recognition (by funding sources) of the need for both short and long-term care and flexibility within various levels-of-care. (AHCA, P.6) "Appropriate care" requires inclusion of services such as case management, home modification, respite care and other physical and emotional support services. (Goldbeck) 96 FINANCE SUBGROUP 3 PUBLIC PUBLIC/PRIVATE PRIVATE CHAMPUS PUDLiC. ee eeeeeeececocscescsososcscsosososcscsscsosossscsessl PUD LiC/ Private... eeeeeeeeeeeeeceescscecsccscscocscccssb Private. ce eeeeeeeeeossososossossosscscscsosssosscsasscssccscesced CHAMPUS t «tc ee eeoesoocsosssssossssscsacssssossssscscsscscsell Additional RecommendationNS...c.ceceeeeeeceesccccscesssll 97 FINANCE SUBGROUP 3 Public Public/Private Private CHAMPUS PUBLIC - BARRIERS 1. Lack of system for coordinating funding responsibilities for direct services among public agencies at Federal and State levels. (Cohen, Kettrick) a. Coordination of payment sources, i.e. private insurers, family, Medicaid and others together with permitting provision of care by trained non-professionals. (CARE, p.6) b. Promote agency collaboration. (Matthews) Unavailability and/or inadequacy of Medicaid coverage. (Kluk, NACHRI; AFHHA, AHA, Fox, SOF, "Medicaid," Beckett) a. Amend Medicaid to provide incentives for States to enact mandatory high-risk catastrophic insurance pools. (Fox.) b. Develop State model risk pool bill with State insurance, MCH as participants with specified eligibility, premium benefits, cost and quality control, financing mechanisms. (Fox) Cc. HHS should facilitate freedom-of-choice waiver application process to enable States to use capitation contracts for risk pools. (Fox) d. Require employers to provide a minimum health benefit package for employees which includes prenatal care and coverage of children. (Bellor, NACHRI) e. Encourage States to require health insurers to provide home care in lieu of hospital care in all policies. (NACHRI) 98 FINANCE Subgroup 3 PUBLIC - BARRIERS f. Establish State level insurance pools for small employers; self-employed or seasonally-employed individuals; and, if actuarially feasible, the uninsurable population. (NACHRI) Establish State or regional catastrophic insurance pools to supplement the minimum private insurance policies. (Bellor, NACHRI) States should mandate availability of catastrophic coverage either individually or through risk pools. (Fox, NACHRI) State-mandated cost effective risk pools should include uniform eligibility and public/private options for high risk children. (Fox, Beckett, SOF) Recommend States require all employers who offer health insurance to offer a catastrophic coverage option. (Workshop) Support Kennedy-Stark proposal for State-mandated high-risk pool. (Fox) State risk pools for the high risk or uninsurable individual, (AHA) Support State innovation and initiative in such areas as loan guarantees, high-deductible catastrophic health insurance, flexibility in managing State Medicaid programs. (Workshop) Examine proposals for cost-sharing as sliding payment scales under Medicaid to allow middle and upper class families to buy-into Medicaid long-term care benefits. (Fox, AHA) Mandate Medicaid coverage for pregnant women and children under age six whose incomes are below the Federal poverty level. Require all insurors to cover pregnant women and children from birth. 99 FINANCE Subgroup 3 PUBLIC - BARRIERS q. aa. bb. Revise Medicaid to expand eligibility. (AHA, Bellor, NACHRI) Create a new category of benefits for children of parents not qualifying for Medicaid. (AFHHA) Provide that any savings to the states in the Medicaid program resulting from changes in the Medicare program be maintained within Medicaid. Eliminate state-to-state discrepancies in Medicaid eligibility and services. Mandate Medicaid coverage of unlimited home care where costs are less than institutional costs. (AFHHA) Increase the Medicaid Federal match to 90 percent for technology-dependent children (Cohen) Establish capitated payments through Medicaid to finance care for technology-dependent children. (Abbey) Address the need for adequate reimbursement for home visits for technology-dependent children. (AFHHA) Require Medicaid to cover supplies and equipment in the home that would be covered in an inpatient setting. (AFHHA) Finance care for technology-dependent children under Medicare, including catastrophic benefits. (Goldbeck) Encourage maximum coordinated participation by public/private sectors in designing a reimbursement system. Federal programs (Title XIX, V) take lead and provide model payment and delivery systems for private insurers including managed care organizations. (AHA) Encourage the debate of requiring catastrophic coverage for children for publicly and privately insured, with the government as the payer of last resort. (AHA) 100 FINANCE Subgroup 3 PUBLIC - BARRIERS cc. Provide tax credits to parents for medical expenses of maintaining technology-dependent children at home (AFHHA, p. 4-5) dd. Require that savings to Medicaid resulting from changes in Medicare be redirected within the Medicaid program. (Bellor/NACHRI) ee. Support National Governor's Association's current effort to increase health insurance coverage for a number of maternal and child health problems. (Goldbeck) Underutilization of Medicaid waiver program. (Williams) a. Streamline the Medicaid waiver process as an interim step, but consider recommending that home care for technology-dependent children be an optional benefit under Medicaid. (AHA,) b. Simplify Medicaid waiver process. (SoCal Kaiser, NACHRI) Cc. Reactivate "Katie Beckett" waiver board. (Beckett) d. Change the present Medicaid system to require all States to implement the Medicaid Title XIX waivers. (Matthews) e. Modify Medicaid EPSDT program and increase federal funding to support inpatient, outpatient and home care needs of technology-dependent children. (Johnson, SOF, '"Medicaid") Inconsistent interpretation and administration of benefits under Medicaid at local level. (Kluk) Fragmented coverage of services, i.e., programs that will pay for certain services but will not pay for monitoring necessary to determine the necessity for such services. (Kluk, p. 5) Inequity in coverage of home care. (WACH) 101 FINANCE Subgroup 3 PUBLIC - BARRIERS 7. Prior institutionalization requirements for eligibility for home care. (Dugger) 8. Restrictions on use of Federal dollars that limit buying the most cost-efficient care (e.g., requirement that RNs provide care vs. LPNs). (Kettrick) 9. Lack of funding for prevention activities at all levels of government, i.e., family planning, birth control, prenatal care. (SOF, "Medicaid," Goldbeck) 102 FINANCE Subgoup 3 PUBLIC/PRIVATE - BARRIERS 1. Inadequate funding mechanisms, coverage for appropriate settings, therapies, disposable supplies. (Kohrman, NACHRI, Cohen, Calogero, SOF, Travenol) a. Develop private/government arrangements such as employer tax credits, employer buy-ins, premium sharing to cover subsets of U.S. population. (Johnson, Fox, Kohrman) b. Develop coordinated public/private funding combinations for long-term care of high cost technology dependent children. (Calogero) Cc. Implement public/private initiatives to support/fund development of transitional care facilities and other home-like units. (NACHRI, Prentiss) d. Require employers to provide a minimum health benefit package for employees which includes prenatal care and coverage of children. (Bellor, NACHRI) Existance of ERISA loophole - freedom of self-ensurers to escape State-mandated benefits and obligatory participation in public/private financing plans. (Grode, Fox) The attitude of insurance companies, Medicaid and other payers to "avoid paying claims." (Grote, SOF, Medicaid, NAMES) Strict interpretation by insurers, Medicaid, CHAMPUS, HMOs of financial qualifications for extra-contractual care. (Nomura) Inability to plan for future needs resulting from insecurity of continued public and private financing. (Kettrick, NACHRI) Lack of adequate funding for facilities facing extraordinary expenses for care of technology-dependent children, i.e., durable medical equipment - ventilators, etc. (AHCA) 103 FINANCE Subgroup 3 PUBLIC/PRIVATE - BARRIERS 7. Lack of funding for facilities when a patient's private insurance, HMO or PPO benefits are exhausted, but the patient cannot be discharged from the facility. (AHCA) a. Recognize that adequate reimbursement is crucial to the development of successful alternatives. (Labor intensive care of head injured are estimated to be 400-500 percent higher than traditional nursing home care). (p.5) b. Develop regional centers to coordinate services across all payers, whether Medicaid, Crippled Children's Services, Blue Cross/Blue Shield, or private insurers Limited availability of a continuum of alternatives to acute hospital care or home care, i.e., foster homes, supervised apartments, group homes, pediatric SNFS, etc. (CARE, p. 7; Kluk, p.5; AFHHA, p.5; AHCA, p.3: Goodwin; WACH, Workshop, Cohen, NACHRI, Kohrman, Thrasher) a. Encourage model regionalized systems which allow community resources to be tiered and better coordinated so that multiple levels of care are available. (AHA) b. Provide Federal funding and assistance to set up small group homes for the care of children abandoned by parents (AFHHA, P.5) d. Funding sources should recognize the need for a level of care between acute and traditional long-term care. (AHCA, p. 6) e. Funding sources should recognize the need for both short and long-term care and flexibility within various levels-of-care (AHCA, P.6) Lack of/inadequacy of coverage for medical equipment and supplies, including servicing and preventative maintenance, under both private insurance and government programs. (AFHHA, SOF, Travenol, Monahan) 104 FINANCE Subgroup 3 PRIVATE - BARRIERS 1. Employer practices leading to larger numbers of workers not provided health care coverage. (Thrasher) a. Allow employer deductions from tax for employee health insurance only if catastrophic protection is provided. (Bellor, NACHRI) Reliance on employment as key distribution vehicle for private health insurance results in large numbers of uninsured because of adverse selection factors. (Goldbeck) a. Follow insurance strategy that provides coverage thru vehicles other than employment. (Goldbeck) b. Experiment with group insurance pools not based on employment, such as families of school children. (FREEDMAN) Denial of or delayed access to insurance coverage because of an existing high-risk condition. (NACHRI, Lane, Fox) Low overall plan maximums, no catastrophic stop-loss coverage, recurring, pre-existing condition exclusions. (NACHRI, SOF, Grode) Limits on coverage under private insurance and HMOs. (Kluk, p. 14; AFHHA; Lane; WACH) a. Support expansion of business and provider health care coalitions as partial solution to health insurance problem. (Goldbeck) b. Use single premium major medical health contract or other trust fund similar to structured settlements as model for developing individual financial plans for lump sum payment. (Based on bodily injury claims settlement model outlined by Dr. Jurkoic.) (Jurkoic, Freedman, Bellor, Kohrman) Cc. Employers should permit employees to withdraw money from pension funds or 401 (k) plans to cover unreimbursed health care costs. (Wozniak) d. Replace flat benefit limits with individually-tailored service care plans. (NACHRI) 105 FINANCE Subgroup 3 PRIVATE - BARRIERS e. k. Provide tax incentives to encourage the coverage of children and the use of catastrophic insurance pools. (AHA) Full tax deductions for health insurance to the self-employed and unincorporated business, as long as coverage includes catastrophic expenses. (Workshop) Adequately cover chronic care and care at home, regardless of whether the child is "homebound" or not. (ACCH) Recognize the comprehensive needs of children and their families and not be restricted to isolated and categorical physical needs. (ACCH) Recognize the necessity for financing supportive services for these children. (ACCH) Ensure equal access to care for all children across geographic boundaries. (ACCH) Protect and respect the dignity and integrity of families. (ACCH) Inflexibility of private insurance coverage. (Goodwin) A. Expand acceptance by insurers of meeting complex technology-dependent children's needs through multidisciplinary approach. (NACHRI) Expand acceptance by payers of anticipatory and continuous planning and case management. (Kohrman) Expand extra-contractual case management programs to provide cost-effective alternatives to hospital care for certain specific chronic conditions. (Roghan, Fox, Kohrman) Private insurance policies which require use of "over-trained" professionals to provide routine care. (Matthews) 106 FINANCE Subgroup 3 PRIVATE - BARRIERS 8. Lack of/inadequacy of funding for diversity of health care and community support services providers can offer, including respite, case management, support groups, transportation assistance, equipment loan, day care and babysitting, early intervention, pyschosocial services. (Workshop, ACCH, Hawkes) a. Recognition by financing agencies of the need for (legitimatcy of) services other than strictly "medical." 9. Absence of State and Federal regulations to define and mandate minimal home care benefits to be provided by private insurance. (WACH) 10. High expenses/lack of coverage for electricity, remodeling, telephone, transportation costs, deductibles, co-payment, etc., borne by families out-of-pocket. (Travenol, NACHRI) 11. High cost of DME and restrictions on where DME can be obtained. (Goodwin) a. Set up central purchasing of equipment with loan or rental. (Workshop) b. Inaugurate monitored competitive bidding for equipment and provision of services. (Workshop) 12. High supplier liability costs related to equipment reliability. (NAMES, NACHRI) 13. Reimbursement insecurities of providers and DME suppliers, including long third-party payment delays, "horrendous" paperwork, and lack of reimbursement for training and care coordination activities performed by suppliers. (NAMES, Travenol) a. Support prior approval (reimbursement policies) mechanisms that speed payment for DME. (NAMES, Travenol.) 107 FINANCE Subgroup 3 PRIVATE - BARRIERS b. Support reimbursement for equipment servicing. (Travenol, Monahan) 14. Limited resources of voluntary organizations. (Workshop) a. Provide financial incentives to encourage development of innovative community support programs. (ACCH, p.7) 108 FINANCE Subgroup 3 CHAMPUS - BARRIERS CHAMPUS - Restrictive regulations that limit funding for home care. CHAMPUS - DOD's restrictive interpretation of prohibition against coverage for "custodial care." CHAMPUS - Medicaid ineligibility for many CHAMPUS beneficiaries. (Hawkes) CHAMPUS - $1,000 limit on Program for the Handicapped. (Hawkes) a. Expand financial limits and stop-loss coverage under CHAMPUS Programs-for-the Handicapped. (SOF, CHAMPUS) 109 FINANCE SUBGROUP 3 ADDITIONAL RECOMMENDATIONS: a. Increase Federally-sponsored and funded care-giver and professional training programs for highly specialized services. (Cohen) Subsidize parents for providing home care. (Lane) Compensate family members providing home care for lost income opportunities. (Kohrman) Initiate voucher system of funding parent-managed home care. (Jones) Replace dependence on variable State Medicaid funding; develop incentives for better service distribution. (Cohen) 110 GAPS FINANCE SUBGROUP III Gaps in Private Health Insurance and Recommended Changes Identified in Task Force Survey of State Medicaid Directors July 1987 Exclusion of coverage for pre-existing conditions. (AK, GA, NC, ND, Or, UT) a. b. f. Expand Medicare to cover catastrophic illness in under-65 population. (OR< UT) Establish incentives for private catastrophic coverage. (NJ, OR, UT) Support national catastrophic health care plan. (SC) Support risk sharing among private companies. (GA) Support adoption by States of laws mandating coverage under parents' insurance of handicapped infants. (MO) Establish allowances for catastrophic chronic illness. (MA) Inadequate basic health coverage, including exclusion and/or limits on coverage of newborns, adoptees. (ca, MI, MO, NC, UT) ad. b. C. Support adoption by States of laws mandating coverage under parents' insurance of handicapped infants. Mandate minimum basic health insurance coverage. (CT) Update laws regulating the insurance industry. (UT) Discrimination in coverage against families with a member who requires costly care. (MI, NJ) ad. b. Support non-cancellation clauses in health insurance policies. (NJ) Mandate minimum basic health insurance coverage. (CT) 111 Low lifetime maximum benefits. (AK, CA, GA, MA, MI, NC, ND, OK, Or, VA, WA) a. b. Expand Medicare to cover catastrophic illness in under-65 population. (OR, UT) Establish incentives for private catastrophic coverage. (NJ, OR, UT) Support national catastrophic health care plan. (SC) Establish allowances for catastrophic chronic illness. (MA) annual deductibles. (SC) Expand Medicare to cover catastrophic illness in under-65 population. (OR, UT) Establish incentives for private catastrophic coverage. (NJ, OR, UT) Support national catastrophic health care plan. (SC) Establish allowances for catastrophic chronic illness. (MA) Inflexible and/or limited coverage of health services delivered in other-than hospital settings. (AL, a. b. ca, cr, IL, MI, MN, NC, NJ, OR, SC, UT, WA) Make home health coverage an option in private group and individual health plans. (CA, NC) Mandate home health coverage by private insurers. (MN) Implement consistent system of prospective prior approval for home health services. (MA) Mandate reimbursement for appropriate, cost-effective home and community-based services. (NV) Expand scope of covered services to include long-term care. (MA, NJ. MA) Clarify definition of "custodial care." (IL) 112 Limited coverage of skilled nursing hours and/or visits. (AK, MA, NJ, NM, NV, OR, SC, WA, WI) a. Implement consistent system of prospective prior approval for home health services. b. Mandate home health coverage by private insurers. (MN) Cc. Mandate reimbursement for appropriate, cost-effective home and community-based services. (NV) d. Establish allowances for catastrophic chronic illness. (MA) Limited coverage for DME. (AK, MA, MI, OK, OR, SC, WA, WI) a. Mandate reimbursement for appropriate, cost-effective home and community-based services. (NV) b. Establish allowances for catastrophic chronic illness. (MA) Cc. Expand scope of covered services to cover long-term care. (MA, NJ, WI) d. Update laws regulating the insurance industry. (UT) Inflexible, limited, or lack of coverage for community-based medical or support services, i.e., respite care, transportation, prescription drugs, non-prescription supplies, home renovations, counselling, therapies, transplants, feeding formulas, etc. (AK, CT, HI, MA, MI, NC, NM, OK, UT, WI) a. Mandate reimbursement for appropriate, cost-effective home and community-based services. (NV) b. Establish allowances for catastrophic chronic illness. (MA) Cc. Expand scope of covered services to include long-term care. (MA, NJ, WI) 113 10. 11. 12. 13. Inadequate long-term care and catastrophic illness coverage. (KY, TX) a. Expand Medicare to cover catastrophic illness in under-65 population. (OR, UT) b. Establish incentives for private catastrophic coverage. (NJ, OR, UT) Cc. Support national catastrophic health care plan. (SC) d. Support risk sharing among private companies. (GA) e. Establish allowances for catastrophic chronic illness. (MA) Inadequate information dissemination to families concerning coverage limitations. (MA, NJ) Inadequate mechanisms for transferring an individual from private insurance to Medicaid. (IL) Medicaid requirements that limit State flexibility to target non-waivered services specifically enough, i.e. respiratory care, TEFRA Sec. 134. (VA) ADDITIONAL RECOMMENDATIONS A. B. C. Adopt case management for the severely disabled. (MA) Provide tax incentives for families to case mange lump sum settlements. (GA, NJ) Establish birth defects registries in all States to aid in identifying technology-dependent infants. (NJ) 114 APPENDIX K WITNESS TESTIMONY SUBMITTED TO TASK FORCE 115 PRIVATE HEALTH INSURANCE COVERAGE OF CHRONICALLY ILL CHILDREN Prepared by Harriette B. Fox with Ruth Yoshpe Fox Health Policy Consultants 1140 Connecticut Avenue, N.W. Washington, D.C. 20036 For The National Center for Networking Community-Based Services Georgetown University Child Development Center March 1986 Prepared under a contract from the Division of Maternal and Child Health, Department of Health and Human Services. 116 Acknowledgements Very special thanks are due to the three reviewers of this report: Deborah J. Chollet, Research Associate, Employee Benefits Research Institute; Edward F. Lis, Director, I1linois Division of Services for Crippled Children; and Paul Newacheck, Assistant Professor, Institute for Health Policy Studies, University of California at San Francisco. Each reviewer offered several helpful comments and suggestions. We are particularly grateful to Paul Newacheck who analyzed the microdata tapes from the 1982 Health Insurance Supplement of the National Health Interview Survey. This assistance made it possible for us to develop Table 1, which shows health insurance coverage by the type of insurance for children under age 18, with and without limitation of activity. 117 INTRODUCTION Adequate health insurance coverage is critical for children with disabling chronic conditions. These children comprise a relatively small proportion of the child population, approximately four percent of all children. 1 Yet, their annual expenses for hospital and physician services alone have been estimated to range, on average, from $870 to $10,229, depending on the severity of their illness. These amounts contrast sharply with the typical healthy child's expenses for these services which have been estimated to be only about $270 a year.2 The purpose of this report is to present information on private health insurance patterns among chronically ill children. The report attempts to assess the extent to which children with special medical problems have = access to private coverage, and to evaluate the adequacy of that coverage for home care and various therapeutic services as well as for basic hospital and medical services. The report is divided into three sections: 0 the first examines available information on the level and cause of uninsurance among both chronically i11 children and children generally, 0 the second focuses on underinsurance for basic services and for ancillary health care, and 1 National Center for Health Statistics, unpublished data from the National Health Interview Survey, 1981. 2 Harriette B. Fox, "A Preliminary Analysis of Options to Improve Health Insurance Coverage for Chronically I11 and Disabled," report prepared for the Division of Maternal and Child Health, DHHS, Fox Health Policy Consultants, Washington, D.C., September 1984. (Inpatient hospital cost data for these estimates were based on average per diem charges in 1982, which were $284 for community hospitals and $602 for children's hospitals. By 1984, the average per diem Shares had risen to $411 for community hospitals and $774 for children's hcspitals. 118 ° the third suggests ways in which Crippled Children's Services (CCS) directors might participate in public and private sector policy decisions that could expand and improve private health insurance coverage for children with disabling chronic conditions. I. UNINSURANCE Children with special medical problems tend to have the same rate of health insurance coverage as other children, approximately 85 percent. They are, however, more likely to be insured through Medicaid or another publicly financed program. It appears also that children with moderate and severe disabilities have a greater likelihood than those with only moderate disabili- ties to lack coverage. Presumably like other children, chronically i11 chil- dren are most likely to be uninsured if they are poor, near poor, or Hispanic. Trend data indicate that insurance coverage for the child population generally has been decreasing since 1980 and that this phenomenon is likely to continue. A. Uninsurance Among Children With Special Medical Problems Little information is available on the health insurance coverage of chronically i11 children. Few national surveys collect data on both health status and insurance coverage for the child population. Moreover, even among the surveys that do include this information, the fact that chronically ill children are not oversampled makes developing reliable estimates of their insurance patterns difficult. An analysis of one national health insurance data set which categor- izes children by limitation of activity does suggest, though, that children with special medical problems are as likely as their healthier peers to have health insurance protection at any given time. What distinguishes these two groups of children is the source of their coverage, as Table 1 shows. Children with severe or even moderate activity limitations are more likely than other children to be covered under a public program and less 119 Table 1 HEALTH INSURANCE COVERAGE BY TYPE OF INSURANCE FOR CHILDREN UNDER AGE 18, WITH AND WITHOUT LIMITATION OF ACTIVITY, 1982 (Numbers in Thousands) Health Children Children Insurance Al Without With Children, Children, Children, Coverage! Children | Limitation Limitation | With LA-1 With LA-2 With LA-3 TOTAL 62,570 59,507 3,062 224 1,916 922 INSURED? 52,771 50,135 2,636 178 1,639 818 85.0% 85.0% 86.7% 82.5% 86.1% 89.1% Private 45,905 43,861 2,044 119 1,217 708 Insurance 73.9% 74.3% 67.1% 53.8% 63.8% 77.0% Medicaid 6,307 5,763 544 62 385 97 10.1% 9.7% 17.8% 27.8% 20.1% 10.6% Medicare 30% 22% 8* o* 4* 4* 0% 0% 1.0% 0% 2% 4% Other Public 361 259 51 11+ 32* 8* Programs 5% 4% 1.7% 4.9% 1.7% .9% 5 1,406 1,303 102 4* 65 32* Military 2.2% 2.2% 3.3% 2.0% 3.4% 3.5% UNINSURED 9,276 8,873 403 38+ 265 100 14.9% 15.0% 13.3% 17.5% 13.9% 10.9% * These numbers are less than 42,000 and, therefore, do not meet the standards of reliability established by the Division of Health Interview Surveys, National Center for Health Statistics. 1 For all categories, some interviewees responded "Do not know." The number of "unknowns" was different for each question. To adjust for this, the "unknowns" were excluded from each calculation. Percents were derived by dividing the number of positive responses for each category by the total number of children for whom information was known. 2 LA-1 includes severely limited persons who are unable to carry out their usual activity. (1) Pre-school children: jnability to take part in ordinary play with other children; (2) School-age children: inability 1 go to school. 3 LA-2 includes moderately limited persons who are restricted in the amount or kind of their usual activity. (1) Pre-school children: limited in the amount or kind of play with other children; e.g., need special rest periods; (2) School-age children: required to or needs to attend special classes; limited to certain types of schools or in school attendance; e.g., need special schools or cannot go to school full time 4 LA-3 includes mildly limited persons who are restricted but not in their usual activity. (1) Pre-school children: not classified in this category; (2) School-age children: not limited in going to school, but limited in participation in athletics or other extra-curricular activities. 5 The survey questions were not mutually exclusive. Therefore, the total number and percent of individual covered by each type of insurance is greater than the total number and percent of individuals reporting that they are insured. Source: Microdata tape from the National Health Interview Survey, Health Insurance Supplement, 1982. 120 likely to be insured under a private plan. Whereas only about 10 percent of children without limitation participate in the Medicaid program, about 20 percent of children with moderate limitations and 28 percent of children with severe limitations are enrolled in Medicaid at a given point_in time. On the other hand, 74 percent of healthy children have private health insurance coverage while only 64 percent of children with moderate limitations and 54 percent of those with severe limitations have such coverage. B. Uninsurance Among Children Generally 1. National Data More detailed data on the general population of children under age 18 show that in 1980 approximately 23 percent -- 15 million children -- were without health insurance protection for all or part of the year. As Table 2 _ shows, 14 percent were uninsured for part of the year and nine percent had no health insurance protection at all. The 77 percent of children with full year coverage included 67 percent who were privately insured and 10 percent who were covered by Medicaid. Children on Medicaid were somewhat more likely than those with private insurance to have coverage for only part of the year. Among Medicaid children the ratio of full-year to part-year coverage was 6.7 to 1, whereas for privately insured children the ratio was 9 to 1.4 This difference in 3 The finding from the 1982 National Health Insurance Interview Survey that activity limited children are less likely than other children to have private health insurance coverage is consistent with results based on the 1980 National Medical Care Utilization and Expenditure Survey. Whereas among children limited in activity, 60 percent had private insurance only and 18 percent had public coverage only, among those with no activity limitation, 69 percent had private coverage only and 14 percent were covered only under a public program. Paul W. Newacheck, "Utilization and Expenditures for Medical Care Services Provided to Children With Activity Limitations," paper prepared for the National Maternal Child Health Resource Center, July 1985. 4 Margo L. Rosenbach, Insurance Coverage and Ambulatory Medical Care of Low-Income Children: United States, 1980, National Medical Care Utilization and (Footnote Continued) 121 Table 2 INSURANCE COVERAGE OF CHILDREN UNDER AGE 18, ACCORDING TO POVERTY STATUS, 1980 acl Children Below Children At or Above A11 Children 150% of Poverty 150% of Poverty Health Number Percent Number Percent Number Percent Insurance Coverage in thousands distribution | in thousands distribution | in thousands distribution Total 63,871 100.0 16,846 100.0 47,026 100.0 No Insurance 5,740 9.0 2,695 16.0 3,045 6.5 Medicaid 10,855 17.0 7,726 45.9 3,129 6.7 Full Year 6,494 10.2 5,264 31.2 1,230 2.6 Part Year 973 1.5 515 3.1 458 1.0 With Private 3,388 5.3 1,947 11.6 1,441 3.1 Insurance Private Insurance 47,276 74.0 6,425 38.1 40,851 86.9 Full Year 42,532 66.6 5,011 29.7 37,521 79.8 Part Year 4,744 7.4 1,414 8.4 3,330 7.1 Source: National Medical Care Utilization and Ambulatory Medical Care of Low-Income Expenditure Survey.» Rosenbach, M. L. Children," United States, 1980, DHHS Pub. No. 85-20401. “Insurance Coverage and coverage continuity reflects the on-again, off-again nature of Medicaid status due to monthly fluctuations in a family's income and resources. Demographic differences between publicly and privately jnsured chil- dren in 1980 also were found. Medicaid coverage was far more common among blacks, children in the West, and those living in inner city neighborhoods. Private coverage predominated among whites, children in the North Central regions, and those living in the non-central sections of cities. Not surpris- ingly, the greatest variation was in family income: among insured children, the vast majority in non-poor families and the largest proportion in families between 100 and 200 percent of poverty had full-year coverage under a private plan, while poor children were most likely to have full-year coverage under Medicaid. Children without any form of health insurance protection presented. yet another profile. Those with the greatest likelihood of being uninsured were Hispanics and near poor children whose family incomes were between 100 and 200 percent of poverty. Children living in the South and West and in rural areas also were more likely than those in other regions and communities to lack coverage.’ Although employment status generally is associated with health insurance coverage for families, most uninsured children, in fact, have working parents. A 1977 analysis of always uninsured children revealed that while 16 percent of children from families in which the head was self-employed and 20 percent from families in which the head worked part-time were without health insurance protection, the majority of uninsured children had a parent (Footnote Continued) Expenditure Survey, Series C, Analytic Report No. 1, DHHS Pub. No. 85-20401, Washington, D.C., U.S. Government Printing Office, September 1985. 5 John A. Butler, et al., "Medical Care Use and Expenditure Among Children and Youth in the United States: Analysis of a National Probability Sample," Pediatrics, Vol. 76, No. 4, October 1985. (Data source is the National Medical Care Utilization and Expenditure Survey [NMCUES] 1980.) 123 working full-time.b A significant proportion of uninsured children, perhaps as many as 25 percent, have parents who themselves are insured under an employer-based plan.’ More than twice as many, however, have working parents who also are without coverage. Such children comprised about 20 percent of all Americans without coverage in 19808 and 59 percent of all uninsured children that year.’ Workers without health insurance coverage tend to be employed in certain industries and occupations. They work not only in fields character- ized by seasonal employment and self-employment, but in a variety of indus- tries ‘that generally require less education and technical skill. Persons employed in agriculture, construction, sales, repair services, personal services, entertainment, and recreation were at least twice as likely in 1977 to be uninsured as those employed in other fields such as manufacturing or transportation. 10 The likelihood of a worker being insured is related also to employer size. Though workers in manufacturing, communications, transportation, and wholesale trade in all instances are more likely to be covered by an employer group health plan, across all industries, the rate of coverage increases 6 National Center for Health Services Research and Health Care Technology, unpublished table on health insurance coverage of children under age 20. (Data source is the National Medical Care Expenditure Survey [NMCES] 1977.) 7 Katherine Swartz, "People Without Health Insurance: How Did Their Characteristics Change Between 1963 and 1983, and Why Has Their Number Increased Since 1980?" paper presented at the 1985 annual conference of the American Health Planning Association. Ms. Swartz reports that 29 percent of uninsured children have an insured parent. Presumably the vast majority of these parents are covered through their employer. (Data source is the Current Population Survey [CPS] of March 1980.) 8 Alan C. Monheit, et al., "The Employed Uninsured and the Role of Public Policy," Inquiry, Vol. 22, No. 4, Winter 1985. (Data source is NMCUES 1980.) 9 Based on an estimate of 5,812,000 uninsured children under age 19 in 1980, een; ed by the National Center for Health Statistics. (Data source is NMCUES 1980). 10 Monheit, et al., 1985. 124 substantially with the size of the firm. In 1579, 86 percent of workers in large firms (500 or more employees) had group health insurance provided by their employer, 77 percent of workers in medium-sized firms (100 to 499 employees) had such coverage, 65 percent of workers in small firms (25 to 99 employees) had such coverage and just 36 percent of workers in very small firms (fewer than 24 employees) had such coverage. ll Of course, workers in very small firms are much more likely to be covered under another policy. The proportion with health insurance coverage increases by about 27 percent when indirect coverage is included. 2 2. Recent National Trends Since 1980, both the number and proportion of children without health insurance have increased. In 1980, some 10.6 million children, 16.7 percent of the under age 19 population was uninsured. By 1984, the number of uninsured children had increased 19 percent, rising to 12.6 million or 19 percent of the population. 13 One cf the major factors accounting for the growth in uninsurance among children is their increased poverty rate. Between 1980 and 1984, the proportion of children living below the poverty level rose about 16 percent, from 18.5 percent to 21.4 percent of children. During that period, more than 1.6 million children joined the ranks of the poor. While the rate of Medicaid coverage among poor children did increase slightly, it did not keep pace with 1 The State of Small Business, Small Business Administration, Washington, BST Government Printing Office, 1985. (Data source is the CPS, May 1979. 12 13 Swartz, 1985 and preliminary analyses of 1984 data by the Office of the Assistant Secretary For Planning and Evaluation, DHHS. It is possible that the 1984 number of 12.6 million uninsured children under 19 is somewhat high. It seems plausible, however, because of Kathy Swartz's finding that 11.3 million children under 18 and 8.3 million between 18-24 were uninsured in 1984. (Data source is CPS, March 1980, 1982, 1983, and 1984.) Ibid. (Data source is CPS, May 1983.) 125 the increased rate of poverty. Thus, the overall number of poor children without Medicaid coverage grew by about 600,000.14 (See Table 3.) In addition, the rate of insurance coverage among non-poor children apparently has decreased as well. In 1980, about 64 percent of children were covered under an employer- or union-based plan. By 1984, the proportion of children covered under such policies had decreased slightly to about 61 per- cent. This represents a five percent drop in private group coverage during the four-year period, but it parallels almost exactly the decrease for the non-aged adult pcpulation as a whole. (See Table 4.) The primary reason for this decrease appears then not to be a trend away from employer-based coverage for dependents alone, !® but rather a lessen- ing of employer-based coverage in general, due to the changing composition of employment. (See Table 4.) Recent economic recessions have accelerated the. growth of service-industry employment relative to employment in manufacturing and other non-service industries. Because the rate of health benefit coverage is much lower in the service sector than in other, traditionally more union- ized and higher wage industries, the gradual reduction in the proportion of non-service industry jobs indicates a reduction in aggregate health insurance rates. This forebodes that, even with full economic recovery, pre-recession rates of employment coverage among employees and their dependents are not likely to be restored. 18 14 data. 15 Swartz, 1985. The proportion of uninsured children with an insured parent actually decreased somewhat between 1980 and 1983. (Data source is CPS, March 1980, 1982, and 1983.) 16 1985. CPS, March 1980, 1981, 1982, 1983, and 1984, published and unpublished "EBRI Issue Brief," Employee Benefits Research Institute, No. 44, July 126 Table 3 MEDICAID COVERAGE OF CHILDREN UNDER AGE 18 ACCORDING TO POVERTY STATUS, 1980-1984 Number and Number and Number and Percent Percent of Poor Number Percent of Children of Children 1 Children Enrolled of Children Enrolled in Medicaid Who Are Poor in Medicaid Year (in thousands) (in thousands) (in thousands) (in thousands) 1980 63,684 7,885 11,764 5,423 (12.4%) (18.5%) (46.1%) 1981 63,243 8,147 12,505 5,718 (12.9%) (19.8%) (45.7%) 1982 62,891 8,190 13,647 7,743 (13.0%) (21.7%) (56.7%) 1983 62,691 8,230 13,807 6,589 (13.1%) (22.0%) (47.7%) 1984 62,689 8,165 13,418 6,504 (13.0%) (21.4%) (48.5%) % Change’ (+4.8%) (+15.7%) (45.2%) 1 Poor children are defined as those in families whose incomes are below the federally established poverty level. 2 Based on percentages, not absolute numbers. Source: Current Population Surveys of March 1980, 1981, 1982, 1983, and 1984. Data published in Current Population Reports, Series P-60, and data provided by Bureau of Census staff. 127 Table 4 EMPLOYER- OR UNION-BASED GROUP HEALTH INSURANCE COVERAGE OF CHILDREN COMPARED TO THE POPULATION UNDER AGE 65, 1980-1984 Number and Percent Number and Percent Number and Percent of Group-Insured of Group-Insured of Group-Insured Population 0-64 Population 18-64 Children 0-17 Year (in thousands) (in thousands) (in thousands) 1980 135,453 94,773 40,680 (67.2%) (68.8%) (63.9%) 1981 134,836 94,942 39,894 (66.3%) (68.8%) (63.1%) 1982 133,476 94,520 38,955 (65.1%) (66.5%) (61.9%) 1983 132,437 94,297 38,141 (64.1%) (65.6%) (60.8%) 1984 132,374 94,318 38,055 (63.6%) (64.9%) (60.7%) % Change’ -5.4% 5.7% -5.0% Based on percentages, not absolute numbers. Source: Current Population Surveys of March 1980, 1981, 1982, 1983, and 1984. Data published in Current Population Reports, Series P-60. 128 3. State Data Concern about the uncompensated and forfeited care that is the consequence of uninsurance among children and others, has led many.states to establish special task forces or committees on medical indigency. These state committees have examined the extent of bad debt and charity care, the nature of medical indigency, and the adequacy of public private mechanisms to provide health care services and insurance coverage. Some of the task force reports provide information on uninsurance among children. As Table 5 shows, state estimates of the proportion of chil- dren without health insurance coverage average about 14 percent, and range from 7.5 percent in New York to 24.5 percent in New Mexico. For poor chil- dren, uninsurance rates are considerably higher: the average state estimate is 31 percent, with the lowest estimate in New York (11 percent) and the highest in Colorado (41 percent). The state reports indicate that, on average, children account for more than one-third of the uninsured population, and poor children account for a comparable proportion of the uninsured poor. II. UNDERINSURANCE No studies as yet have been conducted on the adequacy of private health insurance coverage for chronically i11 children. What is known about private health plans generally suggests, though, that the vast majority of privately insured disabled children have a broad range of benefits which include not only hospitalization, but physician services, drugs, laboratory services, and even many of the therapeutic services that such children require. Deductibles, copayments and other limitations, however, severely restrict the utility of these benefits for disabled children, leaving their families with substantial and, in some cases, devastating out-of-pocket expenses. 129 oel STATE TASK FORCE REPORT ESTIMATES OF INS COVERAGE AMONG CHILDREN, BY POVERTY STATUS Number Number and Number and and Percent Percent of Percent of the Percent of of Children Children Below Percent of Uninsured Poor Total Nusbey Children Who Who Are , Poverty Who Uninsured Who Population Who State Year of Children Are Uninsured Below Poverty Are Uninsured Are Children Are Children Arkansas 1979 659,829 N/A 154,400 N/A N/A N/A (23.41) Colorado 1983 1,257,570 N/A 239,653 98,605 41.0% (19.0%) (41.0%) Kentucky 1983 1,031,000 166,254 229,822 N/A 30.0% N/A (16.1%) (22.31) lowa 1983 783,000 N/A 93,997 N/A N/A N/A (12.01) Nebraska 1979 443,880 N/A 53,278 N/A N/A N/A (12.0%) New Mexico 1983 436,000 (106,820) 90,765 N/A 33.0% N/A (24.5%) (20.81) New York 1983 4,700,000 352,000 876,909 100,000 23.0% 25.0% (7.5%) (18.7%) (11.43) North Carolina 1983 1,598,508 214,200 285,944 84,733 32.0% 40.9% (13.41) (17.9%) (29.6%) Texas 1981 5,258,882 130,012 1,040,000 347,331 41.8% 47.8% (13.9%) (19.82) (33.4%) West Virginia 1983 $31,000 N/A 154,286 58,631 N/A N/A (29.1%) (38.0%) Wisconsin 1984 1,278,000 128,000 139,390 N/A 26.0% N/A (10.0%) (10.9%) Average % 14.2% 18.6% 30.9% 30.9% 39.73 1 level. 2 The state of lowa defined poverty as 150 percent of the federal poverty level. Colorado defined “children” as age 18 and under; Texas defined "children" as age 19 and under. Al) other states defined poverty as 100 percent of the federal poverty All other states defined “children® as age 17 and under. Source: Information obtained from state task force reports on uncompensated care and medical indigency, supplemented by telephone interviews with task force A. Major Health Care Services For families with disabled children the fact of being insured does not guarantee that medically necessary health care expenses will be covered. Many such families insured under a private plan do not have adequate protection even for basic hospital and medical services. The most extensive benefit packages under private insurance typically are provided through group policies.’ 1979 data from the Department of Health and Human Services show that 89 percent of privately insured chronically ill or disabled children have group policy coverage, the same proportion-as privately insured children generally. 8 The remaining 11 percent (6.6 percent of all children with special medical problems) who have individual insurance are likely to have "substandard" coverage. Carriers sometimes write these children insurance that provides standard benefits "rated up" to a higher premium leveP. Far more frequently, though, they write insurance with riders that exclude coverage for treatment of the child's specific pre-existing condition and any medical problems that might derive from it. These may be temporary or lifetime riders, depending on the type and severity of the child's diagnosis. !? No published reports have as yet been generated on the extent of underinsurance among disabled children who are privately insured. There have been several attempts, however, to examine the adequacy of protection in the general population. One such study? utilized a panel of experts to establish 17 According to one major study of underinsurance in 1977, from one-third to two-thirds of all nongroup enrollees are underinsured, although group enrollees, who constitute 90 percent of the insured population, are a substantial majority of the underinsured. Pamela J. Farley, "Who Are the Underinsured?", paper presented at the 1984 annual American Public Health Association meeting. 18 John Butler, et al. "Health Care Expenditures for Children With Chronic Disabilities," in James Perrin (ed.), The Constant Shadow: Childhood Chronic Illness in America, San Francisco: Jossey-Bass, Inc., 1985. 19 20 Stephen G. Sudovar and Patrice Hirsh Feinstein, National Health Insurance Issues: The Adequacy of Coverage, Roche Laboratories, 1979. Fox, 1984. 131 a minimum adequate level of coverage and, based on this standard, estimated the proportion of the population with sufficient protection for major health care services. Its findings for the privately insured were based on an analysis of employer-provided health insurance plans and did not include other group or individual policies. According to these findings: ° 89 percent of persons who are privately insured have adequate coverage for inpatient hospital services (standard is 15 covered days with 20 percent copayment, the assumption being that coverage fcr additional days would be picked up by a major medical policy); ° 39 percent of those with private coverage have sufficient protection for inpatient physician services (standard is 80 percent payment of the average fee charged for an inpatient visit); and ° 26 percent of the privately insured are adequately covered for physician office and home visits (standard is payment of 80 percent of the average fee charged by physician). The study also revealed significant differences across employer plans. In general, workers in smaller firms and those who are self-employed were found to enjoy the same high quality hospital coverage as those in large firms or government employment. Their coverage for inpatient and outpatient physician services, though, tends to be much less adequate. While, for example, 77 percent of government plan beneficiaries and 22 percent of large group plan beneficiaries have adequate coverage for nonhospital physician services, less than one percent of those insured through small firms or by an individual plan for the self-insured have such coverage. Significant variation in the extent of the individual's liability also surfaced. The study showed that half of all government health plan beneficiaries, a significantly larger proportion than any other group, have a sufficient stop-loss protection for annual out-of-pocket expenses. By 132 contrast, nearly all small group and self-employed policy holders, but consi- derably smaller proportions of the other groups, have sufficient catastrophic health expense protection. Surprisingly, for both plan features, beneficiaries of large group plans were least likely to meet the minimum adequate standard. This study was an attempt to assess the adequacy of coverage; its findings do not reflect the simple presence or absence of basic protection for hospital and physician services. Most employer plans, in fact, are thought to provide fairly good coverage for major health care services. The Employee Benefits Research Institute (EBRI) reports, for example, that 95 percent of all covered employees in 1977 had plans that covered physician office and home visits, but that 98 percent were subject to a deductible, copayment, or indi- vidual benefit maximum. 21 Such limitations apparently placed the majority of employee health plans below the minimum adequate standard set by the study panel. B. Other Health Care Services In addition to coverage for hospital, surgical, and physician care expenses, children with special medical problems require insurance protection against the cost of a variety of other health care services. These include occupational therapy, physical therapy, speech therapy, outpatient mental health treatment, and home care services as well as laboratory and X-ray services, prescription drugs, and medical supplies and equipment. Information on the scope and depth of these benefits, however, is limited. Available reports only address coverage of a subset of the ancillary health care services required by chronically ill or disabled children. 21 Deborah J. Chollet, Employer-Provided Health Benefits: Coverage, Provisions, and Policy Issues, Employee Benefits Research Institute, Washington, D.C., 1984. (The data in this report are drawn from two surveys of nonagricul- tural business establishments in the United States. One is the Battelle Survey which provides information on small businesses. The other is the Level of Benefits Survey conducted by the Bureau of Labor Statistics, which provides information on medium and large businesses.) 133 Moreover, even these benefit provisions usually are not discussed comprehen- sively in terms of their cost-sharing requirements and coverage restrictions. The typical employer health plan covers a number of specific health care costs other than inpatient and regular physician care. EBRI reports, as Table 6 shows, that in 1980 the great majority (over 90 percent) of plan participants had coverage for hospital outpatient care, mental health care, diagnostic X-ray and laboratory tests, and prescription drugs. Slightly more than half were covered for extended care in a nursing home. In addition, some, mostly persons covered through a larger firm, had protection for routine dental and vision care. Coverage for ancillary health care services, however, much more than for major health care services, is subject to specific benefit limitations. The EBRI tabulations show that whereas less than five percent of employer plam participants had an individual benefit maximum on hospital room and board and inpatient physician services, almost 45 percent had a specific maximum for treatment of mental or nervous disorders. 2? Analysis of employer plans by the Health Insurance Association of America (HIAA) reveals even more prevalent restrictions for mental health benefits: fully 95 percent of employees with such benefits were covered for an annual maximum benefit amount that was less than for other covered services. (Fifty-five percent had benefits at an annual amount less than $1,500.)23 The only other health care services for which benefit information is known are those seen as having the potential for containing insurance costs. The HIAA data show that about 45 percent of employees in 1980 had specially 22 1piq. 23 A Profile of Group Medical Expense Insurance in the United States, Health Insurance Association of America, Washington, D.C., 1980. (The data in this report are derived from a survey of 36 companies which provided information on about 22 million employees and accounted for 59 percent of the total group health insurance premiums written by insurance companies in the United States. The survey included information on self-funded plans with administrative services only or minimum premium plan arrangements.) 134 Table 6 PERCENT OF EMPLOYER GROUP HEALTH INSURANCE PLAN PARTICIPANTS COVERED FOR SELECTED HEALTH CARE EXPENSES, 1980 Health Care Expense Item Covered Not Covered Hospital Outpatient Care 99.5 0.5 Extended Care 62.5 37.5 Mental Health Care 97.5 2.5 Diagnostic X-Ray and Laboratory Tests 95.5 4.5 Prescription Drugs 99.5 0.5 Routine Dental Care 42.6 57.4 Routine Vision Care 15.9 84.1 Source: EBRI tabulations of the Battelle Survey of Employment-Related Benefits in Private Non-Farm Business Establishments in the United States and the 1980 Level of Benefits Survey (U.S. Department of Labor, Bureau of Labor Statistics). 135 designed coverage for the services of a home health care agency. Twelve percent of the employees had a policy that covered well-baby care for children under two years of age and six percent were covered under a policy that provided similar benefits for children of ages two to 15.24 To learn more about benefits for services that are not systematical- ly included in large surveys but are of particular importance to privately insured children with special medical problems, we conducted a survey of 60 employers. 2 Our findings are presented in Table 7. Although based on a small sample of relatively more prosperous firms, the results are consistent with other surveys regarding basic hospital, surgical, and medical benefits.20 We found that while five small companies offered no health insurance at all, the remaining 55 provided good basic coverage. One hundred percent of the firms providing health insurance benefits covered hospital, surgical, inpa- tient and outpatient physician, and X-ray and lab services; 94.5 percent covered medical equipment and supplies; and 91 percent covered prescription drugs. Coverage of the various nursing and therapeutic services, however, was more uneven. Benefits were more prevalent for mental health counseling, which was offered by 94.5 percent of the firms, and for visiting nursing services, physical therapy, speech therapy, and home health aide services, each of which was provided by 81 to 87 percent of the firms. Benefits gener- ally were less common for comprehensive home care, occupational therapy, and skilled nursing home. Comprehensive home care that includes a wide range of 24 25 A total of 60 small (0-100 employees), medium (101-500 employees), and large (more than 500 employees) firms were chosen by random sample from the Dunn and Bradstreet U.S. Business Directory and the Business Insurance Directory. While the use of these sources resulted in a skewing towards more prosperous firms, they are virtually the only sources listing small businesses. A ques- tionnaire was administered by telephone survey in which the director of employee benefits or similar administrator in each firm answered whether certain benefits were covered by the group policy of that firm. 26 Ibid. See, for example, the survey findings reported in Chollet, 1984. 136 Table 7 HEALTH INSURANCE BENEFITS BY SIZE OF FIRM AND TYPE OF INSURER Results of Independent Study SIZE OF FIRM TYPE OF INSURANCE TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS small MEDIUM LARGE INSURANCE INSURANCE (55) (17) (16) (22) (45) (10) 1. HOSPITAL 100% 100% 100% 100% 100% 100% (55) (17) (16) (22) (45) (10) COPAYMENT No Copayment 20.0% 12.0% 12.5% 31.8% 20.0% 20% (11) (2) (2) (7) (9) (2) Copayment 20% 80.0% 88.0% 87.5% 68.0% 80.0% 80.0% or less (44) (15) (14) (15) (36) (8) Copayment greater -- -- -- -- -- -- than 20% (0) (0) (0) (0) (0) (0) ANNUAL DAY LIMIT No Limit 92.7% 88.2% 87.5% 100.0% 91.1% 100.0% (51) (15) (14) (22) (41) (10) 150-365 Days 7.3% 11.8% 12.5%. -- 8.9% -- (4) (2) (2) (0) (4) 0 Fewer than 150 Days -- -- -- - -- -- (0) (0) (0) (0) (0) (0) 2. SURGICAL 100% 100% 100% 100% 100% 100% (55) (17) (16) (22) (45) (10) COPAYMENT No Copayment -- -- -— -- -- -- (0) (0) (0) (0) (0) (0) Copayment 20% 100% 100% 100% 100% 100% 100% or less (55) (17) (16) (22) (45) (10) Copayment greater -- -- -- -- -- -- than 20% (0) (0) (0) (0) (0) (0) 3. INPATIENT PHYSICIAN 100% 100% 100% 100% 100% 100% (55) (17) (16) (22) (45) (10) COPAYMENT No Copayment -- -- -- -- -- -- (0) (0) (0) (0) (0) (0) Copayment 20% 100% 100% 100% 100% 100% 100% or less (55) (17) (16) (22) (45) (10) Copayment greater -- -- -- -- -- we than 20% (0) (0) (0) (0) (0) (0) 137 Table 7 (Continued) SIZE OF FIRM TYPE OF INSURANCE TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS saat! mepIum LARGE INSURANCE INSURANCE (55) (17) (16) (22) (45) (10) 4. OUTPATIENT PHYSICIANS 100% 100% 100% 100% 100% 1002 VISITS (Office and Home) (55) (17) (16) (22) (45) (10) COPAYMENT No Copayment -- -- -- -- -- .. (0) (0) (0) (0) (0) (0) Copayment 20% 100% 100% 100% 100% 100% 100% of less (55) (17) (16) (22) (45) (10) Copayment greater -- -- - -- -e a than 20% (0) (0) (0) (0) (0) (0) DIAGNOSTIC SERVICES 29.1% 23.5% 43.7% 22.7% 35.6% -- ONLY (16) (4) (7) (5) (16) (0) CASE MANAGEMENT FOR 10.9% 11.8% 6.25% 13.6% 13.32 -- SPECIAL PROBLEMS (6) (2) (1) (3) (6) (0) 5. MEDICAL EQUIPMENT 94.5% 82.4% 100% 100% 93% 100% (52) (14) (16) (22) (42) (10) 6. MEDICAL SUPPLIES 94.5% 82.4% 100% 100% 93% 100% (52) (14) (16) (22) (42) (10) 7. X-RAY AND LAB 100% 1002 100% 100% 100% 100% (55) (17) (16) (22) (45) (10) 8. PRESCRIPTION. DRUGS 90.9% 70.6% 100% 100% 88.9% 100% (50) (12) (16) (22) (40) (10) 9. OCCUPATIONAL THERAPY 60.0% 64.7% 37.5% 72.7% 57.8% 70.0% (33) (11) (6) (16) (26) (7) COPAYMENT No Copayment 10.9% -- 12.5% 18.2% 11.1% 10.0% (6) (0) (2) (4) (5) (1) Copayment 20% 49.1% 64.7% 25.0% 54.5% 46.7% 60.0% or less (27) (11) (4) (12) (21) (6) Copayment greater -- -- -- -- -- -- than 20% (0) (0) (0) (0) (0) (0) 10. PHYSICAL THERAPY 87.3% 76.5% 81.32 100% 86.7% 90.0% (48) (13) (13) (22) (39) (9) COPAYMENT No Copayment 12.7% 5.9% 12.5% 18.2% 13.32 10.0% (7) (1) (2) (4) (6) (1) Copayment 20% 74.6% 70.6% 68.8% 81.8% 73.3% 90.0% or less (41) (12) (11) (18) (33) (9) Copayment greater -- -- -- - - - than 20% (0) (0) (0) (0) (0) (0) 138 Table 7 (Continued) SIZE OF FIRM TYPE OF INSURANCE TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS swat! meprum LARGE INSURANCE INSURANCE (55) (17) (16) (22) (45) (10) 11. SPEECH THERAPY 81.8% 64.7% 81.2% 100% 84.4% 80.0% (45) (11) (13) (22) (38) (8) COPAYMENT No Copayment 12.7% 5.9% 12.5% 18.2% 13.3% 10.0% (7) (1) (2) (4) (6) (1) Copayment 20% 69.1% 58.8% 68.7% 81.8% 71.1% 70.0% or less (38) (10) (11) (18) (32) (7) Copayment greater - -- -- i. .. -- than 20% (0) (0) (0) (0) (0) (0) 12. MENTAL HEALTH COUNSELING 94.5% 100% 93.7% 90.9% 95.5% 90.0% (52) (17) (15) (20) (43) (9) LIMITS ON PRACTITIONER MD Only 20.0% 17.6% 31.23 13.6% 20% 20.0% (11) (3) (5) (3) (9) (a MD or Psychologist. 70.9% 82.4% 62.5% 68.2% 73.3% 60.02 (39) (14) (10) (15) (33) (6) MD, Psychologist, or 3.6% -- -- 9.12 2.2% 10.0% Social Worker (2) (0) (0) (2) (1) (1) LIMITS ON REIMBURSEMENT Copayment 20% 27.3% 64.7% = 18.2% 28.9% 20.0% or less (15) (11) (0) (4) (13) (2) Copayment greater 40.0% 11.82 56.3% 68.83 13.3% 60.0% than 20% (22) (2) (9) (16) (6) (6) Flat Rate/Session 5.4% -- 6.2% 9.1% 2.2% 20.0% (3) (0) (1) (2) (1) (2) LIMITS ON NUMBER OF SESSIONS 20 or fewer/Year 10.9% 29.4% -- 6.32 22.7% 10.0% (6) (5) (0) (1) (5) (1) 21-52/Year 23.6% 11.8% 37.5% 22.7% 26.7% 10.0% (13) (2) (6) (5) (12) (1) OTHER LIMITS annual maximum 18.2% 17.5% 6.3% 27.3% 15.5% 30.0% (Average $1,000) (10) (3) (1) (6) (7) (3) lifetime maximum 7.3% 5.92 6.3% 9.1% 4.4% 20.0% (Average $10,000) (4) (1) (1) (2) (2) (2) episode maximum 1.8% -- 6.3% -- 2.2% -- (1) (0) (1) (0) (1) (0) other 12.7% 17.6% 6.3% 13.6% 15.5% -- (7) (3) (1) (3) (7) (0) 139 Table 7 (Continued) SIZE OF FIRM TYPE-OF INSURANCE TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS saat! MEDIUM LARGE INSURANCE INSURANCE. (55) (17) (16) (22) (45) (10) 13. HOME HEALTH AIDE 83.6% 52.9% 93.7% 100% 84.4% 80.0% (46) (9) (15) (22) (38) (8) COPAYMENT No Copayment 16.4% 5.9% 12.5% 27.3% 15.5% 20.0% (9) (1) (2) (6) (7) (2) Copayment 20% 67.3% 47.0% 81.2% 72.7% 68.9% 60.0% or less (37) (8) (13) (16) (31) (6) Copayment greater -- -- - -- -- -- than 20% (0) (0) (0) (0) (0) (0) LIMITS ON VISITS 30 visits 3.7% 5.9% 0.0% 4.5% 2.2% 10.0% (2) (1) (0) (1) (1) (1) 60 visits 14.5% 11.8% 12.5% 18.2% 17.8% -- (8) (2) (2) (4) (8) (0) = 90 visits 18.2% 11.82 25.0% 18.2% 13.3% 40.0% (10) (2) (4) (4) (6) (4) 120 visits 23.6% 11.8% 31.2% 27.3% 24.4% 20.0% (13) (2) (5) (6) (11) (2) “As Necessary" 23.6% 11.8% 25.0% 31.8% 26.7% 10.0% (13) (2) (4) (7) (12) (1) 14. HOME CARE (including 63.6% 47.1% 62.5% 77.3% 68.9% 40.0% occupational, speech, (35) (8) (10) (17) (31) (4) physical, respiratory therapy, and social work) COPAYMENT No Copayment 34.5% 11.8% 12.5% 50.0% 40.0% 20.0% (19) (2) (2) (11) (18) (2) Copayment 20% 29.1% 35.3% 50.0% 27.3% 28.9% 20.0% or less (16) (6) (8) (6) (13) (2) Copayment greater -- -- -- -- -- -e than 20% (0) (0) (0) (0) (0) (0) LIMITS ON VISITS 60 visits 5.5% -- -- 13.6% 2.2% 10.0% (3) (0) (0) (3) (1) (1) 90 visits 27.3% 17.7% 37.5% 27.3% 26.7% 10.0% (15) (3) (6) (6) (12) (1) 120 visits 16.4% 17.7% 18.7% 13.6% 24.4% 10.0% (9) (3) (3) (3) (11) (1) "As Necessary" 14.5% 11.8% 6.3% 22.8% 15.6% 10.0% (8) (2) (1) (5) (7) (1) 140 Table 7 (Continued) SIZE OF FIRM TYPE OF INSURANCE TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS sat! meDIuM LARGE INSURANCE INSURANCE (55) (17) (16) (22) (45) (10) 15. SKILLED NURSING HOME 27.3% 11.82 18.7% 45.4% 20.0% 60.0% (15) (2) (3) (10) (9) (6) COPAYMENT No Copayment 10.9% 5.9% -- 22.7% 8.9% 20.0% (6) (1) (0) (5) (4) (2) Copayment 20% 16.4% 5.9% 18.7% 22.7% 11.1% 40.0% or less (9) (1) (3) (5) (5) (4) Copayment greater -- -- fo. we a -e than 20% (0) (0) (0) (0) (0) (0) 16. VISITING NURSES 81.8% 70.6% 87.5% 86.4% 82.2% 80.0% (45) (12) (14) (19) (37) (8p COPAYMENT No Copayment 27.3% 23.5% 12.5% 40.1% 26.7% 30.0% (15) (4) (2) (9) (12) (3) Copayment 20% 54.5% 47.1% 75.0% 45.5% 55.6% 50.0% or less (30) (8) (12) (10) (25) (5) Copayment greater -- -- -- - -- -- than 20% (0) (0) (0) (0) (0) (0) 17. INDIVIDUAL BENEFITS 47.32% 29.43% 31.2% 72.7% 46.7% 50.0% MANAGEMENT (26) (5) (5) (16) (21) (5) 18. LIFETIME MAXIMUM 67.3% 52.9% 68.8% 86.4% 62.2% 90.0% BENEFITS (37) (9) (11) (19) (28) (9) $100,000 1.8% -- -- 4.5% 2.2% -- (1) (0) (0) (1) (1) (0) $250,000 3.6% -- -- 9.1% -- 20.0% (2) (0) (0) (2) (0) (2) $500,000 10.9% -- 25.0% 9.12 8.9% 20.0% (6) (0) (4) (4) (4) (2) $750,000 9.1% -- 12.5% 13.6% 11.1% -- (5) (0) (2) (3) (5) (0) $1,000,000 41.8% 52.9% 31.2% 40.9% 40.0% 50.0% (23) (9) (5) (9) (18) (5) No Maximum 32.7% 47.1% 31.2% 22.7% 37.8% 10.0% (18) (8) (5) (5) (17) (1) 141 Table 7 (Continued) SIZE OF FIRM TYPE OF INSURANCE : TOTAL TRADITIONAL SELF BENEFITS PROVIDED FIRMS smaLtl MEDIUM LARGE INSURANCE INSURANCE (55) (17) (16) (22) (45) (10) 19. ANNUAL OUT-OF-POCKET 80.0% 52.9% 81.3% 100% 75.6% 100% LIMIT (44) (9) (13) (22) (34) (10) $1,000 or less 25.5% 11.8% 25.0% 36.4% 24.53 30.0% (14) (2) (4) (8) (11) (3) $1,500 29.1% 23.5% 37.5% 27.3% 33.3% 10.0% (16) (4) (6) (6) (15) (1) $2,000 9.1% 11.8% 18.7% - 11.1% - (5) (2) (3) (0) (5) (0) $2,500 7.3% - - 18.2% 2.2 30.0% (4) (0) (0) (4) (1) (3) Other 9.1% 5.9% - 18.2% 4.83 30.0% (5) (1) (0) (4) (2) (3) None 20.0% 47.1% 18.7% - 24.4% —- (11) (8) (3) (0) (11) (0) PERCENT OF EMPLOYEES IN 100% 1.3% 6.7% 92.0% 60.63 39.4% EACH CATEGORY 1 2 Twenty-two small firms were surveyed; of those, only 17 offered group health insurance. Services rendered under individual benefits management usually are provided without copayment. This is because the benefit is designed for high-cost cases in which the out-of-pocket limit is reached early in the treatment and the insurer anticipates substantial overall savings. Source: Independent survey of employers conducted by Fox Health Policy Consultants in January and February of 1986. 142 home delivered services was offered by 64 percent of the firms. Occupational therapy was offered by 60 percent of the firms (many respondents explained that occupational therapy was covered under state workers' compensation programs). Skilled nursing home care was offered by only 27 percent. Differences in the scope of benefits appear to be associated with firm size. Large employers more frequently provided speech and physical therapy, home health aide services, visiting nurses services, home care, and nursing home care. They also were far more likely to limit annual out-of-pocket expenses. Large firms and self-insured firms of all sizes predictably exhi- bited greater interest in containing their health care expenditures. Their cost consciousness was most evident in their greater tendency to offer indivi- dual benefits management. The 47 percent of employers who told us they would make this benefit available included three-fourths of all large firms and one-half of those who are self-insured. Large and self-insured firms all had stop-loss provisions for plan participants, but many had less generous life- time maximum benefits than some small and medium firms. (Small firms were much more likely than other firms to have no lifetime benefit limit.) Copayments of 20 percent or less were almost always stipulated for hospital, surgical, outpatient physician visits, and prescription drugs. Many plans also imposed copayment requirements of 20 percent on occupational, physical, and speech therapy and on home health aide and visiting nursing services. For mental health therapy, the requirement usually was greater than 20 percent. The cumulative effect of these cost-sharing provisions for the families of children with special medical problems is obviously significant, especially for those whose plans have no limit on annual out-of-pocket expenses (20 percent of the total sample, and 47 percent of small firms). While most employers did not specify specific benefit limits on coverage for basic medical services, they frequently reported such limits for other services. Some ancillary services were likely to have visit limits in lieu of or, sometimes, in addition to copayment requirements. Home health aide, home care, visiting nurse, and skilled nursing home benefits typically 143 had visit or day limits, usually set between 60 or 120. Again, benefits were most restricted in the area of mental health: nearly one-third of the firms imposed visit limits in addition to copayment. C. TRENDS Recent years have seen substantial movement away from base plans with superimposed major medical benefits, toward comprehensive major medical plans. A large-scale survey of leading American employers, conducted by the Wyatt Company, shows that between 1980 and 1984 comprehensive plans increased by 66 percent, jumping from 35 percent to 58 percent of all employer group health plans.?’ In large part due to this shift, there has been a dramatic reduction in full payment for initial medical expenses. (Whereas the base plan structure typically requires no deductible or copayment and provides first dollar reimbursement for hospital and surgical expenses, comprehensive. plans usually require a deductible that applies to the first dollar of covered expense.) On the other hand, trend data reveal that since 1980 employer provi- sions for maximum lifetime benefits and out-of-pocket spending limitations have improved significantly, providing greater protection against expenses for high-cost chronic conditions. According to the Bureau of Labor Statistics, which surveys plans of medium and large firms, 37 percent of plan participants in 1984 had either unlimited lifetime benefits or a one million dollar life- time benefit maximum, while only 26 percent had this protection two years earlier. Similarly, the proportion of employees with a 1imit on their annual 27 1984 Group Benefits Survey: A Survey of Group Benefit Plans Covering Salaried Employees of U.S. Employers, The Wyatt Company, Washington, D.C., 1984. (The data are derived from a survey of more than a thousand employers from the Fortune lists of leading industrial companies, including agricultural and non- profit companies. Certain industrial classifications such as manufacturing and finance are over-represented in the sample, while other classifications such as service, transportation, and construction are under-represented. In addition, the survey includes more large than small companies.) 144 payouts for covered expenses (usually up to $1,000, $2,000 or $4,000) rose from 63 percent to 75 percent over the same two-year period.28 (See Table 8.) In addition, the depth of coverage for basic hospital, _surgical, and medical care has improved somewhat since 1980. Labor Department and Wyatt data show that more plans are reimbursing at the usual and customary rate rather than providing a fixed dollar amount. More plans also are offering either unlimited hospital days or up to 365 days of coverage per spell of illness. The same picture is supported by HIAA's study of new group health insurance which includes information on plans by small and very small firms. 2° The range of covered services appears to have expanded as well. According to Labor Department findings, there was a slight increase between 1980 and 1984 in the proportion of medium and large firms plans covering physician office visits and private duty nursing, and a dramatic jump in the, proportion covering dental and vision care. The most broad sweeping changes in employee health benefits, however, have been those aimed at controlling employer costs. Persistent growth in health care costs since 1980 has resulted in large increases in premium costs to employers. Many employers, particularly large ones, have responded by restructuring incentives in their health insurance plans. The most significant changes that have been introduced are: 28 "News," Bureau of Labor Statistics, U.S. Department of Labor, Washington, D.C., March 1985; and Bureau of Labor Statistics, unpublished tables. (The data are derived from the Bureau's annual survey of employee benefits in medium and large establishments employing at least 100 or 250 workers, depending upon the industry. The survey provides representative data for 20 million full-time employees.) 29 New Group Health Insurance, Health Insurance Association of America, Washington, D.C., 1985. (The data are derived from annual surveys of nearly 3,500 new employer group health insurance plans, covering an estimated 340,000 employees.) 30 Bureau of Labor Statistics, unpublished tables. 145 Table 8 PERCENTAGE OF EMPLOYER GROUP HEALTH PLAN PARTICIPANTS IN MEDIUM AND LARGE FIRMS BY OUT-OF-POCKET EXPENSE LIMITS AND MAXIMUM LIFETIME BENEFIT PROVISION, 1980-1984 Percent With Out-of-Pocket Percent Who Could Receive $1 Million Year Expense Limit or Unlimited Benefits 1980 55% N/A 1981 59 N/A 1982 63 26% (average = $339,184) 1983 71 30 (average = $393,680) 1984 75 37 (average = $486,113) Source: Bureau of Labor Statistics, U.S. Department of Labor, "News," June 1981, May 1983, May 1984, March 1985, and unpublished tables. 146 0 new and more flexible benefits for lower cost alternatives to hospitalization, 0 fuller coverage of services delivered by participating lower cost providers, and ° increased cost-sharing requirements. 1. Expanded Benefits for Lower Cost Hospital Alternatives Several industry surveys provide evidence of the sharp rise in cov- erage of services that have the potential for reducing hospital utilization, especially extended care facilities and home care. Labor Department data show that in the year between 1983 and 1984 alone, the number of employer group plan participants with extended care facility coverage increased seven percent, while the number with home care coverage rose by as much as 24 percent.31 This trend is substantiated by the Wyatt Company survey and also by HIAA data on new group plans. The home care benefit being offered now appears to be more compre- hensive than it once was. Home care previously had been defined primarily as a nursing or home health aide service. Today employers who are revising or first introducing this benefit frequently specify a laundry list of services that typically include those of an occupational therapist, physical therapist, speech therapist, respiratory therapist, and medical social worker. Tradi- tional limits on the total number of visits or amount of reimbursement may still remain, however, and, to insure cost savings, many employers require that the benefit be offered in lieu of hospitalization.>2 Ibid. 32 A survey of local Blue Cross-Blue Shield plans revealed that 90 of the responding plans had home care benefits and 50 percent of these stipulated that the benefit must be in lieu of hospitalization. Home Health Care Report Survey, Blue Cross and Blue Shield Association, Chicago, IT11inois, 1985. 147 Beyond the home care benefit, though, a significant proportion of employers are offering individual benefits management, a more flexible (non- specified) benefit that allows for reimbursement of a wide range of home and community-based services, provided that their total cost is less than hospi- talization. Under this provision, 24-hour nursing, medical transportation, home modification, and other services normally outstde the scope of the plan may be authorized. Virtually all of the larger carriers offer this kind of benefit, which may be variously called individual case management, large claims manage- ment, or medical care management, depending on the insurer.33 Of the 13 major health insurers that we interviewed, only four could tell us what proportion of the group health insurance plans they underwrote or managed contained the individual case management benefit. Lincoln National Insurance reported that the benefit is written into 100 percent of its plans. The Blue Cross/Blue Shield Association told us that 58 percent of the local plans responding to its survey provided this benefit. Prudential estimated that 20 percent of its plans had it, while Metropolitan Insurance, which is only just beginning to market individual benefits management, indicated that only five percent of its plans currently contain the benefit. Of course, these and other major health insurers all report that on a case-by-case basis, many employers will agree to the same type of flexible benefits arrangement even if it is not specified in their group benefit plan. The trend toward better nursing home and home care coverage is obviously a positive one for children with special medical problems. The growing popularity of individual benefits management is particularly 33 For & more complete discussion, see Fox, 1984. 34 We talked with health benefits personnel at Aetna Life and Casualty, the Allstate Insurance Group, the Blue Cross and Blue Shield Association, the CNA Insurance Company, Connecticut General Life Insurance Company, the Equitable Life Assurance Society, the John Hancock Insurance Group, the Lincoln National Insurance Corporation, the Metropolitan Insurance Corporation, the Mutual of Omaha Group, the Prudential Insurance Company of America, the Transamerica Insurance Group, and the Travelers Insurance Group. 148 significant for children dependent on sophisticated and costly medical tech- nologies. It enables many families, who otherwise would have had coverage only if their children were hospitalized, to obtain reimbursement for their children's care at home. The utility of this flexible benefit can be limited, however, by the extent of the insurer's maximum liability and the amount of reimbursement already provided under the policy. 2. Fuller Coverage of Services Delivered by Preferred Providers Concern about escalating health care costs also is leading a growing number of employers to contract either directly or indirectly (through insur- ers) with PPOs, preferred provider organizations. PPOs are organizations, usually comprised of both hospitals and physicians, that offer discounted services to employer and other health insurance plans in return for guaranteed prompt payment and the expectation of a larger pool of patients. Usually deductibles, copayments, or coverage limits are waived as an incentive for plan participants to obtain services, equipment, and products through the PPO. The pay-off to employers is either reduced fees or lower premium costs. PPOs are proliferating rapidly. They are being formed primarily by hospitals and Blue Cross/Blue Shield plans, but also by physicians, investors, and commercial insurers. The American Association of Preferred Provider Organizations conducted a survey in December 1984 that placed the number of persons eligible to use PPOs at 1.3 million. Another survey, conducted less than one year later, produced a conservative estimate of 5.75 million eligi- bles, suggesting more than a fourfold increase during the intervening period. Although their development thus far has been geographically uneven (44 percent of PPO eligibles are Californians), it appears that PPOs' spiraling growth will continue. PPOs are considered broadly attractive because, unlike health maintenance organizations, they retain fee-for-service medicine and opportuni- ties for patient freedom-of-choice.3> 35 Thomas Rice, et al., "The State of PPOs: Results from a National Survey," Health Affairs, Winter 1985. 149 No information as yet exists on the effect of preferred provider arrangements on families with chronically ill or disabled children. Survey results indicate that providers frequently are not being selected on the basis of cost-effectiveness; provider reputation and neighborhood location sometimes are more important criteria. A significant proportion of PPOs, in fact, are not selective at an, 36 To the extent that pediatric specialists and tertiary care hospitals are involved in PPOs, families of children with special médical problems should be able to benefit from their discounted services. Where this is not the case, however, these families may be excluded from reaping the savings available to other plan participants. 3. Increased Cost-Sharing Requirements The trend to greater cost-sharing with employees has been well docu- mented. To keep their own health benefit costs down, employers have been ing creasing the financial obligations on their employees by raising the employee cost of participating in the plan and by raising the employee cost of using covered services. An increasing number of employers no longer provide health insurance free to employees and their dependents. A comparison of the Wyatt Company survey of comprehensive major medical plans for 1980 and 1984 shows a 37 per- cent increase in the proportion of firms requiring contributions for employees and dependents’ coverage, and a 150 percent increase in the proportion requir- ing contributions for dependents’ coverage only. Whereas, in 1980, 52 percent of firms surveyed offered health benefits at no charge to employees, by 1984, only 39 percent of firms provided health benefits free.3’ Labor Department surveys also document the growth in employee contri- butions to premiums. Results show that 56 percent of employees in 1984 36 Ibid. Half of the PPOs are selective with regard to hospitals and just under one-fourth are selective with regard to physicians. 37 1984 Group Benefits Survey. 150 compared to 43 percent in 1980, paid part of the cost of their health insurance benefits. Moreover, according to the Labor Department data, employee annual contributions for family coverage, which had averaged $328 in 1982, were averaging $430 in 198438 Despite the resistance of unions, higher copayments and deductibles also have been playing an important role in the restructuring of employer health care benefits during the last several years. The Wyatt Company reports that between 1980 and 1984 the proportion of comprehensive major medical plans stipulating that participants must pay 10 or 20 percent of their hospital expenses increased 228 percent! During the same period, the proportion requir- ing a 10 or 20 percent copayment for non-hospital expenses also increased substantially, but only by 57 percent, suggesting a clear intention to discourage the use of costly inpatient services. With respect to deductibles, in 1984 only 21 percent of plans exempted any type of benefits from the deductible requirement. This is a dramatic drop from 51 percent of plans just four year earlier. Moreover, changes in the application of deductibles have been accompanied by significant increases in the deductible amount per person. Forty-three percent of plans were found to have deductibles higher than $100 in 1984, compared with only five percent of plans in 1980.3° Evidence from the Labor Department surveys reveals also that the proportion of health plan participants required to pay both an initial deductible and a percentage of subsequent hospital room charges increased from 19 percent in 1983 to 28 percent in 198440 Greater cost sharing requirements undoubtedly place a financial hardship on many families with chronically i11 handicapped children. The impact of new or increased premium contributions alone may not be very 38 Bureau of Labor Statistics, unpublished tables. 39 1984 Group Benefits Survey. 40 "News," Bureau of Labor Statistics, U.S. Department of Labor, Washington, D.C., March 1985. 151 significant. But the cumulative effect of larger copayments and deductibles is certain to raise these families' out-of-pocket expenses substantially. The intent of this kind of benefit restructuring is to reduce service utilization voluntarily, but families whose children have multiple medical problems do not have the option of eliminating hospital, physician, or other health care services. They will be forced to pay up to their out-of-pocket maximum -- unless limited family resources dictate that they forego essential care. III. CONCLUSIONS AND RECOMMENDED ACTIONS FOR STATE CRIPPLED CHILDREN'S SERVICES DIRECTORS From what limited data are available on the private health insurance coverage of chronically i11 or disabled children, or can be derived from more general insurance information, several key points emerge. 1. Approximately 13 percent of chronically i11 or disabled chil- dren at any given time are without health insurance protection. It appears that a large proportion of these children have parents who work in jobs that either do not provide benefits for dependents or do not provide group health benefits at all. Moreover, with employment shifts to sectors that have not traditionally offered health benefits, it is likely that an even larger proportion of these children will be without coverage in the future. 2. Children with special medical problems who are privately insured tend to have good coverage for inpatient hospital and physician services and slightly more variable coverage for out- patient physician services. For ancillary services -- such as mental health counseling, visiting nurses services, or speech therapy -- benefits may be provided but are generally subject to one or more specific limitations that usually do not apply to major health care services. 152 3. Employers' growing concern about escalating health care costs has led them to offer expanded and more flexible benefits for cost-effective services. As a result, more chronically ill or disabled children are likely to have a multi-service home care benefit, though, traditional limitations may still apply and the benefit may sometimes be offered only in lieu of hospitali- zation. Additionally, more handicapped children are likely to be able to participate in a program of individual benefits management under which various services normally outside the scope of the plan could be authorized, provided that they are less costly than hospital or other covered services. 4. Cost-sharing requirements, particularly for copayments and deductibles, are increasing for most privately insured indivi- duals. While cost-effective services, such as home care, are. sometimes exempted, the families of children with special medi- cal problems generally can expect to have higher out-of-pocket expenses for their children's care. ’ CCS directors, therefore, should plan to take an assertive role in promoting public and private initiatives that have the potential for expanding the availability of health insurance protection for uninsured children with special medical problems, and improving the scope of benefits for those whose coverage is good but still not adequate to their particular needs. Given that states are prohibited by federal law from requiring employers to provide health insurance benefits to their employees, there are two policy options that states interested in expanding coverage are most likely to consider. 41 The states' regulatory authority over employer health benefits plans was restricted as a result of the Federal Retirement Income Security Act of 1974 (ERISA). The act narrowed state jurisdiction over employee health benefits through its preemption provision. Several court cases have upheld that states may establish regulations governing the insurance industry, but may not mandate that employers offer health benfits plans. 153 0 One is a state-financed catastrophic expense program in which the state becomes the payer of last resort for persons who have incurred very substantial out-of-pocket medical expenses rela- tive to their income and otherwise would be finaneially devastated. ° The other is the state-mandated high risk pool in which the state requires insurers to establish a pool for the purpose of making reasonably priced comprehensive coverage available to individuals who otherwise would be considered "uninsurable" because of a prior existing chronic medical condition. *? The relative merits of these approaches were analyzed in a report that the author prepared for the federal Division of Maternal and Child Health (DMCH) entitled "A Preliminary Analysis of Options to Improve Health InsuranCe Coverage for Chronically 111 and Disabled Children. "*3 The conclusion of this report was that a greater number of children would be served under a high-risk pool arrangement than under a catastrophic health expense program. In addi- tion, a risk pool would be more financially beneficial to families, leaving them with a smaller amount of unpaid medical bills. CCS directors might want to encourage state policymakers to consider the high-risk pool concept. A risk pool would not have to focus on chronically i11 or disabled children alone. It could be structured to offer insurance to all high-risk individuals, all children, or simply all people without coverage. The special health insurance problems of handicapped children could be remedied 42 A strong and frequently made argument in support of these and similar public policy options is that chronically i11 individuals do not actually belong in the commercial insurance market. Once the on-going cost of care for a particular individual becomes a certainty rather than a probability, a subsi- dized health care financing program is more appropriate than a mechanism designed to spread risk. Subsidization for high-cost chronic illness, the argument goes, should be done explicitly, through the tax system, not explicitly, through cost shifting. 43 Fox, 1984. (Copies of the report may be obtained from the National Maternal and Child Health Clearinghouse.) 154 most effectively, however, if certain modifications were made to the basic risk-pool design. As suggested in the report to DMCH: # to contain costs and allow for flexible benefits, the pool could function as a prudent purchaser of care, contracting on a capitation basis with providers who can comply with prescribed cost-effective protocols; # to make insurance protection affordable for low- and moderate- income families, states could subsidize premiums on a sliding- scale basis; and 0 to make the pool's comprehensive benefit package available to children with inadequate group policy coverage, perhaps insurers could be required, at a parent's request, to contribute the premium value of the child's current policy plus some additional amount toward the high-risk pool premium. Since there also are many handicapped children who have exceptionally good private coverage but still do not have adequate protection for some of the services or types of care that they require, CCS directors should address needed benefit improvements for these children as well. They might want to meet with the major carriers in their respective states and with local business groups on health. CCS directors could play an important role in educating these organizations about the particular health care needs of children with various special medical problems. To the extent possible, they can stress the cost savings that can accrue as a result of appropriate benefits planning. Two types of cost-effective data could be presented. The first is information on the often substantial savings associated with home care and other benefits that can cut short or eliminate hospital or other institutional stays. This type of information is being collected by a number of CCS programs managing the care of technology-dependent children and by state Medicaid programs participating in the individual "Katie Beckett" and 2176 model waiver programs. Cost-effectiveness data also is being tabulated by Aetna Life and Casualty, The Equitable, and other insurers experimenting with case-managed 155 care for high-cost illness. Once the cost-saving potential of home care is understood, and an on-going relationship with insurers has been established, CCS staff no doubt will be called upon to provide essential consultation and case management services for individual patients. The second type of information concerns projected savings from appropriate preventive interventions that initially might result in new or additional costs to payers. The treatment of hemophilia is an excellent example about which much has been written. By offering extensive benefits for physical therapy and home infusion of blood products, payers may prevent the future costs that might be associated with joint replacement surgery. In addition to relying on national and private data sources, CCS directors should begin collecting their own state-specific data on the cost of care for various childhood conditions and the adequacy of private health insurance plans. This information could be used for making internal policy decisions regarding CCS coverage and eligibility as well as for educating the public and private sectors about critical coverage gaps. Public policy forums increasingly are taking up financing issues that are directly or indirectly related to the care of chronically ill chil- dren. States are considering a variety of policy options to extend and improve health insurance coverage of medically indigent and at-risk populations. The federal government has begun to examine the costs associated with alternative approaches to catastrophic health expense coverage. CCS directors, individu- ally and through their national association, now have an excellent opportunity to bring the special health insurance needs of chronically ill children into the policy debates. 156 American Academy of Pediatrics mle TESTIMONY BEFORE THE HEALTH CARE FINANCING ADMINISTRATION TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN PRESENTED BY Arthur Kohrman, M.D., F.A.A.P. May 6, 1987 Office of Government Liaison 1331 Pennsylvania Avenue, N.W. Suite 721 North Washington, D.C. 20004-1703 202-662-7460 / 800-336-5475 157 Executive Summary The American Academy of Pediatrics is very supportive of appropriate home care for technology assisted children. The goal of these programs should be the pro- vision of comprehensive, cost-effective health care within a nurturing home that maximizes the capabilities of the child and the family and minimizes the effects of the disability. The needs of the child and family must be the central focus of such a program. Current barriers to providing appropriate home care are numerous: inadequate funding; too few trained personnel to provide highly specialized services; une- ven distribution of services; lack of intermediate care facilities; insufficient case management and family support programs; no standards or guidelines for home care programs or program development and assessment. or Recommendations: I. Standards/guidelines should be developed by a consortium of organizations for: 1. home care providers and agencies; 2. program development and assessment; 3. patient selection criteria; and 4. equipment. II. Increase efforts to educate physicians and other health professionals about the complex needs of technology assisted children and their fami- lies. III. Improve programs to support families, including respite care. IV. Expand and improve case management services. V. Improve financing mechanism involving public and private sector programs. 158 Good morning. I am Arthur Kohrman, Professor and Associate Chairman, Department of Pediatrics at the University of Chicago and Director of La Rabida Children's Hospital and Research Center. I am here today on behalf of the American Academy of Pediatrics and want to thank you for the opportunity to address the complex issues surrounding home and community based care for technology assisted children. At the outset, I want to state the Academy is very supportive of appropriate home care for technology assisted and chronically ill children. There is no question that these children and their families can lead happier, more produc- tive lives when they care for their children at home. It must also be empha- sized that the most important consideration in providing home care for these children must be the child's best interest. The needs of the child and family must be the focus of our concern and debate. As such, the goal of home care programs should be the provision of comprehensive cost-effective health care within a nurturing home that maximizes the capabilities of the child and family and minimizes the effects of the disability. Successfully combining the benefits of home care with optimal medical treatment and community support is a challenge to parents, physicians, health care provi- ders, hospitals and communities. All must be firmly committed to the cause. Most of these children will be dependent, at least economically, for many years, if not forever. It is unreasonable and unfair to imagine that in some way they and their families will work themselves out of dependence. They will need out- side help for the costs of the complex human services, equipment and social organizations needed to insure their best growth and development. We must also realize that the problems these children and their families face are often not only perplexing, but somewhat difficult for society to acknowledge. These 159 children do not always fulfill the dominant image in our world of beautiful, mobile, well-proportioned, articulate human beings. They challenge our idealized sense of childhood and our joyful image of young children's lives. The psychological and social realities, combined with the relatively small num- bers of these children and the high costs for their care, together create a very dangerous situation. These children are exceptionally vulnerable to the vagaries of the political process, dependent as they are on state and federal funding and on fluctuations in market forces in the private insurance industry. Without a concerted voice before legislative bodies, there is a great risk that they will be forgotten and buffeted by the uncertainties of polities. Thus, the central concern of my message today is an appeal to insure that not only are programs for these children carefully thought through and put in place, but that this be done in a manner guaranteeing that promises made to them in childhood be fulfilled as they grow and become adult citizens. If our goal is to give chronically-ill children and their families the greatest opportunity for development and productivity, then the cruelest act would be to erect programs which deliver that promise now, but fail it later when public attention is turned to other concerns. Current barriers to providing quality home and community based care to tech- nology assisted children are numerous. Technology assisted children and their families have a complex set of needs which include medical, social and psycholo- gical services, access to appropriate ancillary therapies, availability of equipment, and location of competent long-term case management which can intelligently interact with the needs and desires of the child and the family as they grow and change. Services for these children and their families when available are presently very fragmented. The services which chronically-ill and 160 disabled children need most are also not traditionally paid for or provided by standard private insurance or governmental programs. Existing reimbursement systems are primarily oriented toward in-patient hospital care and focused on payment for physician services and procedures to the exclusion of essential non- physician support services. We are now only beginning to learn how to look out- side of institutions to the homes and communities where these children ought to and can reside. In addition there is a critical shortage of trained personnel to provide the highly specialized services these children need, a paucity of intermediate care and respite care facilities to assist with the transition and ongoing care of these children and no guidelines to standardize the quality of care being provided. Case management services and family support programs are also sorely in short supply. Recommendations The real challenge for pediatric home care is to make sense of a vast set of ideals and to encourage the best aspects of these intentions in order to carry programs into the future with greater certainty. In other words, we must question how to best approach the goal of designing and implementing programs that accommodate individual situations, and maintain, or improve, the quality of care and of life. In 1984 I developed a 10 point agenda for pediatric home care. Specifically, I recommended that we: 1. Examine and reexamine professional roles, attitudes and pressures. 2. Reexamine institutional roles and assumptions. 3. Examine and define the unit for pediatric home care. 161 4. Set standards for care that permit ingenuity, diversity and flexibility while ensuring the best possible outcome for each child. 5. Improve and simplify technology. 6. Work to form regional consortia of public, private university and commercial sectors. 7. Form coalitions between patients and their parents or caretakers and pro- fessionals. 8. Recognize the importance of political agendas. 9. Consider the ethical implications of home care. 10. Evaluate all we do. That agenda is still with us. The full text of my article is attached (Appendix I). In my testimony today I will highlight five of those recommendations with respect to those questions posed to the Academy by the task force. I. Standards There is a critical need to establish standards and guidelines for: 1) home care providers and agencies; 2) program development and assessment; 3) patient selection criteria; and 4) equipment. Such guidelines must be designed in the child's best interest yet, sufficiently flexible to adapt-to the diverse needs of this population. Age, disease, social class, location and access to resources are among the variables that the home care movement must accommodate. The challenge to planners and innovators of programs is to open opportunities for children in many different circumstances without sabotaging the possibilities for other children through their efforts. 162 II. In 1984 the Academy convened an ad hoc Task Force on Home Care of Chronically Ill Infants and Guidelines which issued guidelines for home care of Infants, Children and Adolescents with Chemical Diseases. In 1986, the Academy released guidelines for the transition of chronically ill and severely disabled children to the home and community. Both are appended to this statement, and may serve as the basis for more compre- hensive guidelines. (Appendix II and III.) Notably both underscore the need for comprehensive planning, care planning, education and training and coordination between the family, hospital and community. Guidelines should be developed by a consortium of organizations repre- senting parents, physicians, health care providers, hospitals, home health agencies, and others -- perhaps, convened under the auspices of DHHS. Although the industry itself must begin to develop standards for equipment and for market behavior, both to protect patients and families, as well as themselves for fears of fiscal abuse, it may be necessary for the appropriate governmental agencies to take the ini- tiative in standard-setting. One hopes that this can be done in con- junction with the many proven and competent agencies and companies in the private sector. The Academy would be interested in participating in such an effort. The Academy also believe these efforts should be initiated in the near future. Unless standards are soon established, we fear commercial interests will dominate at the expense of these children and their fami- lies. Reexamine Professional Roles, Attitudes and Training 163 III. To a great extent, the quality of home care depends on the help offered to the family. The quality of this help is, in turn, heavily influenced by the quality of professional and paraprofessional staff available to provide the services. Successful home care requires the elimination of any remaining attitudinal barriers that have led professionals, espe- cially physicians, to rely on hospital or institutional care as the easiest avenue for obtaining treatment for severely disabled children. At the same time, the counter-pressure to discharge prematurely these. children must be avoided. Health care professionals, including physicians, nurses, psychologists, and social workers, as well as special educators, should be aware of the negative impact of long-term hospitalization on the social and emotional development of children and also the strain the hospitalization places on family relationships. Professional and institutional roles need reexamination, as do old assumptions about what must or must not be done in hospitals. In addition, more attention needs to be focused on improved education and training for physicians and health care pro- fessionals to ensure they will be able to support the family and child in the most effective manner. Improved Family Support Programs There is an urgent need to improve support programs for families who care for technology assisted children. At a minimum these include increased access to respite care programs, as well as parent education and counseling, as necessary. We must maintain our respect for the families' other priorities throughout this process. These systems must permit a continuous renegotiation with the family and provide oppor- 164 IV. tunities to allow them to attend to their work, careers, recreation and other children. Improved Case Management The Academy strongly believes we need to more effectively incorporate into our home care programs a strengthened role for continuous, rational case management, either in the hands of well-informed and empowered parents or in conjunction with payers and providers who understand and support the concept of pediatric home care. The individual child with chronic illness and his family may use many services, be in contact with many agencies and need many forms of sup- port, from information about opportunities to financial counseling. There are great inefficiencies, opportunities lost and unnecessary costs incurred when the integration of the needs of the individual child is lacking. On the other hand, there may be costs not incurred which should be, if they are costs for services which will make the child more functional or the family less stressed; in those cases, the increased short-term tangible costs resulting from better integration must be measured against the long-term tangible and intangible costs to the child, family and society. In either case, there is a great need for systems of case management for the chronically-ill child. Here I speak not just of financial planning, only one (albeit important) part of the total.-plan for care and follow-up, but of a comprehensive, responsive, creative management plan. What distinguishes true case management from traditional "care plans" is the incorporation of continuous monitoring, quality assessment of services delivered, investigation of reasons for services not delivered, and constant revision of the plan in response to 165 the child's changing needs and developmental status and the family's resources, both financial and emotional. What is described is really only what all competent parents do for their children; in unstressed families with adequate resources and well children we don't usually even question that this sort of "case manage- ment" is logically the parents' assumed responsibility, and society only intervenes when some catastrophe of resource depletion or of family disintegration results in exposure of the child to serious risks which become evident to outsiders. The family of the chronically-ill child, however, is likely to be subject to constant material and emotional stress, with variations in that stress as circumstances change, acute illness intervenes, the child enters a new developmental stage, or some external event unbalances an already tenuous family system. The break- down of a care plan has tremendous costs -- to the family, the society, and especially to the child. Thus there is a need to establish for each child and each family a case management plan and to identify the coor- dinator or overseer of that plan carefully and deliberately. While the case manager may be, in many instances the well-trained and competent parent(s), the assumption cannot automatically be made that they will or can assume that role initially or without relief or intermittent or constant help. The financial impact of good case management is significant for many parties. Family resources can be stretched and applied where most effective, agency resources are better used and thus available for more children, and insurance payers and other fiscal guarantors can realize great savings (and thus, longer periods of financial support to families 166 to whom they have a fixed obligation). Private insurance payers and managed-care organizations should be prepared to pay for case management services: the overall savings will be great. Public agencies should also either provide or pay for well-conceived and well-run case manage- ment services: their limited funds will thereby be significantly extended. There are great opportunities for public-private sector collaborations in the application of case management services to the careful allocation and expenditure of funds for chronically-ill children. One can imagine several possible configurations for cooperative ventures, in which the goal is the best utilization of the combined public and private funds available for each child. These would require anticipatory planning of the projected long-term needs of the child, and conjoint commitment of each of the funding partners from the outset, rather than the situation which now occurs in so many instances, in which public funds are only used as the last resort, to "rescue" the child and family from the catastrophes threatened or precipitated by the exhaustion of private insurance. These often harmful disruptions need not occur. Anticipatory planning and good case management can help to avoid them, with obvious and important benefits, both financial and programmatic, to chronically- ill children, their families and the responsible payers. Improved Financing Mechanisms Unquestionably inadequate financing continues to be one of the major impediments to home and community based care. Clearly, this issue is part of the larger debate to improve insurance coverage for all children. The Academy is currently working with a number of child advo- 167 cacy and provider groups to develop a comprehensive proposal to finance children's catastrophic health care costs. Although these proposals are in draft stage, some of the principles guiding this discussion may be of significance to the task force. Any catastrophic insurance plan must: A. Support the development of well managed comprehensive, coordinated, community-based, personal systems of health care. B. Cover a broad array of child-specific health services rather than being limited to narrowly defined adult medical services. C. Contain costs through the case managed care and promotion of deli- very of care in the most cost-effective manner. D. Include participation from both the private and public sectors. E. Acknowledge the long-term dependence and needs of these children. Whether in the context of a more comprehensive catastrophic proposal, or in a more limited discussion, at a minimum we know that several changes to existing financing mechanisms are necessary to improve access to home care. These are: 1. Modification of Titles XVIII, Title XIX, Title V and private insurance to finance home and community based care. Currently, private insurers are selectively financing home care which, although an improvement over previous years, is insufficient. Incentives must be developed to facilitate routine, comprehensive 168 coverage by insurers for home care and the array of services required by these children. As noted previously, appropriately planned and managed, we believe this care can be cost-effective. Despite the Medicaid waiver for home care, few states have elected to provide this option. Nor have those which have chosen to offer the waiver necessarily used the monies to pay for home care. Given the legislative requirement that such services must be cost- effective, many states have used their monies to pay for case mana- gement as opposed to direct service delivery. Although case management is a critical component, it is clear the waiver monies are not always being used as intended. Nor can an assessment of state use of these funds be used to judge the potential cost- effectiveness of such programs in that they are not now generally integrated around regionalized, multi-tiered systems. It is important to emphasize also the importance of the Title V Maternal and Child Health programs in any discussion of the needs of technology assisted and chronically ill children. Whether these agencies' role should be expanded to finance additional services to these children as well as to buttress their role as the central locus for case management is a point in the debate around catastrophic insurance. Nevertheless Title V agencies are one place where there is convergence of interests both in the organization of services and in the financing opportunities and mechanisms. In addition, the Title V programs have a great deal of influence on the directions and inclinations of the private and philanthropic sec- tors. Where those three can work together, extremely effective 169 4, programs for chronically-ill children can be realized. I would hope that initiatives to bolster and encourage the role of the Title V state agencies will carry with them strong federal incentives to state legislatures and executives. Provision and payment for adequate outpatient and home care services, Appropriate payment for services delivered by physicians, nurses, psychologists, social workers, respiratory, occupational and physi- cal therapists, home helpers, case managers, as well as physicians and nurses, and all the professionals necessary to make home care successful. Compensation for lost income opportunities for family members. I also recommend you consider new efforts involving HCFA, the Department of Health and Human Services -- especially its Division of Maternal and Child Health -- and the private and philanthropic sectors in the deve- lopment of joint demonstration and research projects which will address a number of new issues, including: A. Multi-level hospital and institutional care systems: these should include traditional tertiary care, transitional hospital care, and home care or reasonable alternatives to home care, so that the chronically-ill and disabled child can, at any given time, be in the most appropriate, least restrictive, most supportive and nurturing and least costly environment. Out-patient vs. in-patient care: Demonstration projects should encourage shift of the locus of care into out-patient rather than 170 D. in-patient settings and allow the appropriate reimbursement of non- physicians who provide needed services as well as physicians. Different forms of case management and the outcomes and costs of each: Demonstration projects should begin to identify the systems which will best insure continuity of care for the child and family, the maintenance of family integrity, and containment of costs. Trust funds for the long-term care of our chronically-ill and disabled children. We should develop such trust funds, possibly as collaborations between the private, public and philanthropic sec- tors, in order that all of the payers may benefit from the time value of money invested against future payouts. The needs and exhaustion of personal resources of the families of chronically-ill children are no less inevitable than those of the elderly who through medicine, have a form of social insurance, not against the unexpected, but in anticipation of their needs. Because the aggregate time of dependency of the population (and thus the total burden) is less certain than in the case of the elderly, the actuarial assumptions to establish trust funds for these children will, at least at first, necessarily be less precise; these can be refined with accumulating experience and from further research. However, because the population at risk is small, the funds necessary to establish such trusts will be relatively small (compared to those for Medicare or for prudent reserves for private health insurers), and that degree of uncertainty should be tolerable in the early years. The advantages of establishing trust-like funds 171 for chronically-ill children are not limited to public sector. Pri- wate insurers will benefit from investing funds against already obligated payouts in order to capture the savings realizeable from the time-value of such investments. If the period of payout can additionally be extended by effective case management and utiliza- tion of facilities and services in the most cost-effective manner, the resulting savings will be large; some portion of them can be plowed back into the trust funds to reduce the amount of new capital needed to assure adequacy of future coverage for subsequent new recipients. The ultimate goal of all of us in medicine should be the elimination of the con- ditions, congenital malformations and diseases which disable children. This requires continuing basic research and the continued support of the programs of the National Institutes of Health and in the other branches of the federal government which are directed at the primary prevention of birth defects, reduc- tion of infant morbidity and mortality, and reduction of environmental hazards to the unborn and developing child. These should continue to have high priority. The task force also requested that the Academy address the liability issues -- whether or not these are of concern to the attending physician. Obviously, the answer is yes. As with other areas in the practice of medicine, professional liability is an issue. However, we would also suggest to you that with proper planning, coordination and case management, liability concerns can be minimized. Beyond physician liability, we are concerned about product liability and manu- facturer liability issues which may be limiting access to necessary technology. It is our understanding that some manufacturers are refusing to be responsible for equipment if even minimal modifications are required for a child's use. 172 Before closing, I must note there are several concerns that I and other propo- nents of home care share. These must be remembered as programs are developed and the pediatric home care movement is encouraged: First, we must never allow these programs to be driven by cost or potential cost-savings alone; that home care is, in fact, sometimes less costly than hospital care is fortunate. However, the major reason for children being at home is because it is a better place to be -- for growth and development, and for the wholeness of their families; second, we must not create programs which become "one-way streets"; that is, once home care is chosen for a child, that child should not then have difficulty re-entering any of the appropriate medical care or other institutions in which benefit might be obtained -- either on a short- or long-term basis -- as the child grows, or the family changes, or the disease or disability takes on new aspects; third, we must be constantly on guard against exploitive entreprenuerialism. Home care may be seen by some as an opportunity for great profit, particularly as in- patient hospital utilization drops and the hospital industry shrinks. Preparation of these children and families for home care and their successful maintenance in the home setting requires meticulous attention with a high degree of professional skill. This planning process is very costly, requiring exten- sive human resources. It is unlikely that pediatric home care, when properly executed, can be a fertile field for large profits. I am grateful for the opportunity to address the Task Force on this very impor- tant issue for pediatrics, for parents, for children, and for our society. I am encouraged by your concern and, with you, look forward to the time when we can guarantee that all children will have the same opportunities of growth, develop- ment, education and joy in their homes and families that we all wish for our own. Children's chronic illness, disability, or even dependency on complex 173 technology should not be barriers to that simple -- but profoundly important -- demonstration of the values of our society. The Academy is very supportive of your efforts and commends you for your thorough study of this issue to date. We look forward to reviewing the Task Force's deliberations and assisting your work as we continue our efforts to improve the provision of home care to technology assisted children. 174 STATEMENT OF THE AMERICAN FEDERATION OF HOME HEALTH AGENCIES TO THE TASK FORCE ON TECHNOLOGY DEPENDENT CHILDREN MAY 6, 1987 PRESENTED BY MARGIE B. MILLS PRESIDENT AND CHIEF OPERATIONS OFFICER ABC HOME HEALTH SERVICES, INC. BRUNSWICK, GEORGIA 175 My name is Margie Mills. I am presenting testimony here today on behalf of the American Federation of Home Health Agencies (AFHHA), of which I am a member of the Board of Directors. AFHHA is a national association representing Medicare-certified home health agencies throughout the country. Many of our members are currently providing services in the home to technology dependent children. I also serve as the Chairperson of the Home Health Crisis Committee. I have been a provider of home health services for eleven years. I am the President and Chief Operations Officer of ABC Home Health Services in Brunswick, Georgia. Thank you for this opportunity to present testimony to the Task Force on Technology Dependent Children. 176 Home health agencies today are caring in the hame for children who a few years ago would not have survived, or if by chance they did, would have had few options aside from continuous institutionalization. Hame health providers now deal with technology dependent children who have problems such as the following: o respiratory dependency requiring the use of oxygen tanks and ventil- ators o tracheostamies oO gastrostomies o patenteral and enteral nutrition, and hyperalimentation o hydrocephalic shunts 0 serious burns and decubiti o IV antibiotic therapy Oo AIDS Providing these services in the hame is indeed cost effective. To illustrate: caring for a ventilator dependent infant in a neonatal ICU can run as high as $40,000 a month in a Washington, D.C. area hospital, just for the cost of roam and board alone; a home health agency in the state of Maryland is providing the same level of service, with around-the-clock care, for less than $15,000 per month under the model waiver program. Increasingly we are able to provide high tech services but often find the hurdles we and the children's families face almost impossible to surmount, in the absence of programs such as the one in Maryland. I believe that the time has come for us to ask ourselves as a society if we want 177 these children to receive the health care they need. The fact is that many are not receiving the services necessary to sustain life, improve function, or gain health. Same children simply go without any care at all. And families who struggle to provide care are often reduced to poverty because of inadequate or non-existent reimbursement systems. In addition to the financial devastation, care of technology dependent children often takes a heavy emotional toll on parents and other family members. We know of cases where severely stressed parents have discontinued needed procedures, have not noticed as a child slipped into fatal complications, or have even expressed a desire to kill a sick child. Fathers unable to cope with the situation have abondoned their families. Without an adequate reimbursement system, there simply will not be adequate care. Although many hame health agencies do provide free care, there are limits to the amount an agency can provide without facing financial disaster. Let me illustrate the problems we encounter with a few cases. These demonstrate the type of care we can provide in the hame and the financial barriers we face in trying to do so. oO A nine year old with spina bifada and extreme clubbed feet had a hydro- cephalic shunt requiring constant monitoring and decubiti on the hips and legs which required sterile dressing changes. The boy burned his feet and was hospitalized for two weeks. The state Medicaid program covers only up to 50 visits per year, but in this case refused to cover anything. After hospitalization, the child was left without care; the mother was unable to cope with his problems and did nothing more than occasionally change the 178 boy's diapers. His decubiti and burns went untreated, leading to his death from septicemia three months after discharge from the hospital. An 18 year old military dependent was left a quadriplegic as a result of a diving accident. He needed daily skilled nursing visits for tracheostomy care, treatment of decubiti, and training in the use of a high tech wheelchair. CHAMPUS will pay only for up to three skilled nursing visits per week; this boy was unable to receive any care because his condition required daily visits. He was in effect too sick to receive hame health care in the eyes of CHAMPUS. The family has been reduced to poverty, and the youth has gone without outside medical assistance for the last two years. A five month old infant at risk of SIDS was discharged fram the hospital, needing an apnea monitor and weekly drawing of blood to determine if she was receiving a level of medication sufficient to stimulate her breathing and prevent death. The father took custody of the baby. His insurance policy, however, would not pay a dime towards her medical expenses. The insurance campany questioned whether the child was in fact his own, since the parents were not married. A totally dependent five year old boy suffering fram lukodystrophy, a muscle-destroying disease, needed suctioning and monthly monitoring of a feeding tube providing parenteral nutrition. This child required fifteen cases of formula per month at a cost of $150 to $180. The WIC program, which was supplying the nutritional materials, terminated provision when the boy reached his fifth birthday, in accordance with program policy. The hame health agency was forced to scramble after the needed supplies; eventually the health department found a way to pay for it. 179 These cases touch on the most serious barriers to the care of technology dependent children in the hame. These barriers are as follows: o Private insurance is inadequate; agencies experience everything from denial, often retroactive, of all care to major medical policies which force children to go without any care—conmpensated or otherwise—for a number of days or weeks in order to requalify for another benefit period. o The number of visits allowed by Medicaid programs in various states is inadequate; and the rate of reimbursement in many states is far below the cost of providing services, especially as longer visits are required to care for technology dependent children. o There is little or no coverage for medical equipment and supplies under either private insurance or government programs, an increasing problem in the care of technology dependent children. Oo Many parents are ill-trained to assume a role in the care of a child in the home. (With adequate training, almost every condition could be dealt with at home.) We are seeing more burn out of caregivers. And many of these parents are unaware of the resources available in the community to assist them in keeping their children at hame. We have a number of specific recammendations to help address these barriers— from relatively minor adjustments in existing programs to a proposal for a new benefit: (1) Require the WIC program to continue provision of nutritional supplies to technology dependent children after the age of five; 180 (2) Provide Federal funding and assistance in setting up: O respite care programs for parents burned out fram the sturggle of caring for their children at home o small group homes for the care of children abandoned by parents; this will be especially important as we see more infants with AIDS entering the system, in need of both medical care and emotional nurturing; (3) Development by the Federal government of minimum standards for Medicaid programs: 0 require provision of adequate visits, even daily services or around the clock care, where it can be provided at less than the cost of institutional care o address the need for greater compensation for visits of a longer duration required by technology dependent children 0 require states to pay for supplies and equipment in the hame that would otherwise be covered in an inpatient setting; (4) For children of parents not qualifying for Medicaid assistance, create a new category of benefit: o for a dependent of a person either fully or currently insured under Social Security o dependent under the age of 18 or with a disability beginning before 18 o meeting other requirements of Medicare home health coverage, such as homebound, medical necessity, and under a physician's plan of treatment 181 o provision of services available under Medicare home health benefit o private insurance primary payor; this benefit to pick up what private policy will not cover; (5) Provision of tax credits to parents for the medical expenses of maintaining technology dependent children in the home. As more children move into a home setting and we work to provide adequate services, it is essential that quality standards be developed. The Federal government should mandate that the states develop such standards in conjunction with state and national organizations representing hame health providers and with the families of children who have received high tech services in the home. In conclusion, let me sav: today, the Administration's policies encourage women to complete pregnancies, even though there may be indications that an infant will be born with birth defects, or though the mothers are in a group at risk of giving birth to low birthweight infants, the ones most prone to debilitating problems. A civilized nation cannot urge these women to complete their pregnancies and use all the technology at hand to save infants with problems in the weeks and months after birth, then turn the babies loose with- out the care needed to sustain the life we have taken such great pains to preserve. The Preamble to the U.S. Constitution states that two of the purposes of our Federal government are to "provide for the common defence" and to "promote 182 the general Welfare." What good does it do sick and disabled children to have the greatest defense system in the world protecting them if they die for lack of sorely needed nursing visits or nutritional formula? The Federal government has a responsibility to provide for the welfare of these most helpless of our fellow citizens by finding a way to ensure that they receive the health care that they need. We commend you for your efforts in this area and will assist in any way we can to help develop efficient systems for delivery of essential services to these children. 183 TASK FORCE ON TECHNOL OGY-DEPENDENT CHILDREN Dennis. Jd. Marryews Mo Jdntroduction Advances In technology, knowledge and skills have Increased the chances of survival for many children, especially premature Infants and children suf fering major catastrophic Illness or Injury (e.g., bronchopulmonary dysplasia, spinal cord Injury, traumatic brain Injury). The challenge facing health care today Is to optimize the outcome for these children and their familles. Until recently, these children, who are dependent on advanced medical technology for continued survival, generally required long term or permanent hospital ization. The advent of Improved technology and the emergence of special ized home care services has meant that some technological |ly-dependent children now can be cared for safely and cost effectively at home. Other factors contributing to this shift In setting for care are the Implementation of prospective payment systems, the rise in popularity of alternative del ivery systems, and the Inclusion of home care benefits In health Insurance plans. Hospitals are beginning to realize that al ter- native health care delivery systems must be vertically Integrated Into the traditional system of health care to assure thelr economic survival In the coming years. Diversification of services emerges through new product |ines and del Ivery systems such as "Care by Parent" units, extended or palliative care units, twenty-three hour clinics, early discharge programs, and hospital-based home health agencies. Definition Technol ogy-dependent children can be def ined as children dependent on mechanical ventilation, Intravenous therapy, continuous nasogastric feedings or tracheostomies for |ife support. This need may be Intermit- tent or long term In nature. It Is difficult to determine the exact number of children In Colorado that meet these criteria. The Children's Home Care currently manages approximately 40 children totally or partially ventilator dependent. We also manage approximately 125 children who require high technology services for support (e.g., home IV infusion therapy, photo therapy, hyperal imentation). These numbers have Increased tremendously In our and other home care agencies, particularly home Infusion therapy. Additional ly, there Is also an Increase In private duty nursing pri- marily to children suffering prematurity related problems and children with long term catastrophic illnesses or Injuries. Traditionally, these children would still be residing at hospital settings. Needs of this Population Hospital ized children with high technological needs and thelr families require that the following elements be Included In planning for thelr care: 184 Task Force « « 1. Family Involvement as early and as much as possible to support bonding, to move the family through the growing process, to decrease anxiety, to Increase parental confidence In the care of thelr_chlld, and to offer opportunities to regain control. 2. Collaborative discharge planning that utilizes a multidiscipl inary approach and encourages family participation In the development of the plan of care. 3. Alternatives to lengthy hospitalization. Families need viable options to reduce or prevent hospital ization for the care of thelr child. Appropriate level of support services must be provided. 4. Relmbursement for home care services. Banef Its of Home Care Services Lengthy hospital izations are traumatic for children and their families. Studies have documented an association between low birth weight Infants and disturbances In the parent-child relationship. These dlsturbances range from cases of child abuse and neglect, fallure to thrive and delay In attachment (Harmon and Culp, 1981). Separation of the child from Its family places the family unit in crisis as it attempts to cope with feel ings and concerns regarding the child's outcome while concurrently facing financial costs of care and disruption of dally routines (Blackburn, 1982). The hospital environment itself can place the Infant at risk, especially with secondary nosicomial Infections (Brooten, 1983). Home care services can offer these children options to hospital ization through the provision of cost-effective, highly technological services and support In the home setting. These services are cost-effective as demonstrated in the following cases In our service area: 1. Home phototherapy del Ivered at a charge of $85 per day as compared to $627 per day In a Level | nursery. 2. Intravenous antioblotic therapy provided to a four-day-old Infant for ten days at a cost of $3,765 as compared to hospital charges of $16,806. 3. Henry (1986), has demonstrated in a prospective study of the length and cost of hospital ization for Infants with bronchopulmonary dysplasia that a mean length of stay Is 60.5 days at a mean cost of $67,866. Private duty nursing care provided 24 hours a day In the home would cost approximately $456 per day compared to an average dally hospital charge of $1,122 for these Infants. 4. Home care services recently provided to an elght-month-old terminally Ill child who was ventilator dependent saved Medicaid an estimated $31,000. 185 Task Force « « « Dilemmas Despite the apparent advantages of home care services, thelr utilization Is affected by several factors. Health care providers need to be willing to change their focus from one of inpatient hospital ization to one of home care (Financial disincentives). Educational efforts need to be directed toward expanding the knowledge and scope of services available In home care. Home health agencies need to continue to demonstrate that qual ity care can be del ivered safely, effectively and economically in the home care setting. Rel mbursement Inconsistencies can drastically affect the use of home care services. Deductibles, percentages and |imits of coverage and service classifications differ from policy to policy. ‘insurance polli= cles frequently require the utilization of over-tralned professionals to provide routine care In order to meet reimbursement requirements. Insurance plans need to Include Incentives for clients to use home care serv ices. Once coverage Is assured, avallabllity of services become a key Issue. In may rural areas |ike Colorado and Wyoming, agencies may not have enough staff with high-technology pediatric expertise to respond to these clients! needs for services. Often rural communities are served only by community health nurses who must be general ists and frequently cannot meet the needs of these children. It Is indeed a challenge to the home health care administrator to be able to recruit and retain technological ly skilled pediatric nurses and support staff. Access to services may also be affected by the attitudes and information possessed by caseworkers. Often parents face innumerable obstacles in thelr search to determine specific service avallabll ity and qual ifica- tions and the process to receive services. Cllent advocacy and current know ledge of available resources Is essential If the assertive, persis- tent parent Is to be successful in obtaining the services needed. Services must be tallored to meet individual and family needs. Nursing care alone will not support the ventilator-dependent child at home. Reimbursement and availability of educational, psychological, respite care and transportation services Is cruclal for a successful home care plan. These children are very labor intensive for family and health care providers. Additionally, these children will have special needs for medications, formulas, equipment, supplies and utitilities. Due to the complexity of care and support, geographic location may |imit access to services and may perpetuate fragmentation of care. It Is essential to plan careful ly by assuring that all needed services exist by examin- ing the qual ity of care promised and the providers ability to respond quickly. High technological pediatric home care Is a new health care delivery system. Health professionals recognize that assurance of quality of 186 Task Force . . care and documentation of the safety and cost effectiveness of home care services Is necessary. The body of objective date and research con- tinues to grow and demonstrate the benefits, cost, risks and efficiency of home care. Approaches Education of physicians, referral sources, Insurance companies and consumer groups would aid in the promotion of home care for technologl- cal ly dependent children. Once these groups know of the benefits and availability of home care services, perhaps more children will be able to leave hospitals. Hospital discharge planners have a perfect oppor- tunity to work with Insurance case managers regarding the cost- effectiveness of home care. In addition to these educational efforts, changes In the present Medi- cald system are needed. Currently, Medicaid covers a portion of home care charges. They will reimburse only for nursing, physical therapy and occupational therapy services provided on an Intermittent basis. Fallure to thrive Is covered only If an organic cause can be ldentifled. Private duty nursing Is not a covered benefit. Many states have or are attempting to Implement a Medicald Title XIX waver. This would expand the scope and individual ize the Intensity of services that could be provided to children. Legislative changes are also required to address the needs of some technological ly dependent children by seeking to develop model programs to require home care coverage In employee benefit plans. There Is a growing perception that alternative del ivery systems (eg., HMOs, PPOs, CMPs) would prefer not to Include home health and rehabll itation services that are long-term and costly. We would recommend the training of specific health care workers based on Individual need and not policy mandates. This would be particularly important In rural care where highly trained technical pediatric skilled services may not be available. Private-voluntary organizations play an Integral role In the health care del lvery system. The primary mission of many, |ike the March of Dimes, Is prevention, screening and education. Many are disease or condition specific. Unfortunately most, because of |Iimited finances, are able only to support the purchase of equipment and supplies with limited or no support for the more costly trained personnel. Almost none provide psychological support for the family caring for these children. Joint ventures between consumers, health care providers, Insurance carriers, private-voluntary organizations and governmental agencies Is essential. Model programs need to be developed to demonstrate a cost- effectiveness to the whole system, rather than each component protecting Its own parochial Interest. 187 Task Force « « « Even with the reimbursement dilemmas resolved, del Ivering high qual ity services presents another challenge. Due to high tech needs and com plexity of care these children require, the expertise must be Integrated Into the local communities. Hospitals can educate local health care providers through outreach seminars or of fering opportunities for "hands-on" experience In the hospital unit itself. #6tandards of care must be developed and communicated. In addition, networking and agency col |aboration can promote Information-sharing and generation of date to substantiate patient care and research efforts. 188 AMERICAN ASSOCIATION FOR RESPIRATORY CARE 1720 Regal Row. Dallas, TX 75235, 214/630-3540 April 20, 1987 Mr. Bill Pickens Executive Director Task Force on Technology-Dependent Children Department of Health & Human Services Health Care Financing Administration Room 4414 HHS Building 330 Independence Avenue, SW Washington, D.C. 20201 Dear Bill: Attached is a copy of my planned remarks before the Task Force on Technology-Dependent Children scheduled for May 6, 1987 at 2:25 p.m. Should you require additional information, please do not hesitate to contact me at (301)337-1305. Sincerely, tna Mel Martin, MS, RRT President MM: sr Attachment Sponsored by the American College of Chest Physicians, the American Society of Anesthesiologists, and the American Thoracic Society 189 AMERICAN ASSOCIATION FOR RESPIRATORY CARE 1720 Regal Row, Dallas, TX 75235, 214/630-3540 TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN MAY 6, 1987 I appreciate the opportunity to appear before the Task Force on Technology-Dependent Children on behalf of the American Association for Respiratory Care (AARC) which is a 27,000 member organization representing approximately 100,000 Respiratory Care Practitioners across the United States. It is the view of the AARC that the growing movement to provide in-home care to technology-dependent children is positive and will continue to grow as there are motivating forces by those who pass legislation, set policy, family members and health care providers. This Task Force will consider testimony from Dr. Alan Goldberg who participated in a Task Force in 1985 dealing with many of the issues under consideration here. That Task Force had representation from the AARC and published its findings in a supplement to the July issue of Chest, (The official publication of the American College of Chest Physicians), entitled, "Long- Term Mechanical Ventilation Guidelines for Management in the Home and at Alternate Community Sites." Further, the Department of Health and Human Services funded a pilot study in 1984 of the feasibility of maintaining children on ventilators at home in the State of Louisiana. As of this date, forty-nine children are maintained on ventilators at home and in school. These children have been assimilated into the mainstream, becoming regular students and participating in field trips. Thus, my testimony here today will consist not merely of wishful thinking or idle speculation, but rather is based on the forceful demonstration that this concept is workable and fully attainable. It is unfortunate when any of our citizens are unable to participate fully as contributing members of our society. Such a situation is particularly tragic when such citizens are children. Home-based care is not only most humane, it is also the most cost-effective alternative. It is inarguable that the home en- vironment is the most conducive atmosphere for psychological, emotional and social development for these children. But we must be cautious that in our zeal to apply advanced technology to this Sponsored by the American College of Chest Physicians, the American Society of Anesthesiologists, and the American Thoracic Society 190 population our systems don't move faster than the standards that govern them. It is, therefore, essential that standards be developed and maintained. These standards must be developed with patients' and their families' needs as the primary focus. Such standards should be developed by representatives of the medical community, respiratory care practitioners, durable medical equipment (DME) suppliers, home care companies, government agencies (HHS, NIH, FDA), nurses, and patients/ families. This group approach insures that the multiple, valid perspectives of each member of the community of interest is represented. Through our representative to the Joint Commission on Accreditation of Hospitals' (JCAH) Home Care Advisory Committee, we have worked with JCAH in the development of their proposed Home Care Standards. In our view, this is one step in a total process. What is needed is the development of flexible Guidelines/Standards which might be utilized by care givers, family members and agencies in the development and implementa- tion of home care programs which not only meet high quality standards, but are flexible enough to meet individual patient requirements as well as match the needs and abilities of family members in their role as care givers. The questions relating to the appropriate role of service providers, the skills and training necessary and resolution of conflicts between families and providers are important. The Louisiana model speaks to all of these issues. Their experience demonstrates that the patient's discharge to home must not be viewed as an isolated event, but rather a marker in an ongoing process to provide education and support to the patient, the patient's family, and others who interact with the patient, such as peers and teachers. The service providers are viewed as a resource to support the family and not as a substitute for the hospital. Conflicts can be dealt with best by anticipating them ahead of time. This requires intelligent, insightful and experienced caregivers who possess the requisite expertise and skill to support and work along with the family. There are several barriers to the provision of appropriate care and services for technology-dependent children and their families. Chief among them are two I shall address. First, there is the perception that may be held by many, including some policy decision makers, providers of care and family members, that the provision of services to these children in the home is premature and an inappropriate belief that this concept is unworkable. We have access to the personnel, technology and resources to provide these services right now and children should not be made to suffer separation from their parents, families and peers for lack of the benefits that home- care can provide. 191 A second barrier is the lack of a consistent payment policy for providing the less expensive ventilatory care service in the home. We recognize several actions have been taken; the result is that on a case by case basis many ventilator dependent patients have gone home with benefits. There is a need for legislation/policy which will allow for consistency. The Medicaid portion of S1249, "Home Respiratory Care Act 1985," was introduced by Senator John Heinz and was included in the 1986 Budget Reconciliation Act. This was a step in the right direction. It is the position of the AARC that providing coverage of respiratory care services for ventilator dependent individuals in the home including children under the Medicare program would provide a less expensive and more desirable al- ternative for many ventilator dependent individuals. Thank you for the opportunity to provide you with this information. The American Association for Respiratory Care stands ready to work with you and provide a leading role in the development and implementation of guidelines/programs which will assist in the provision of care for the Technology- Dependent Children, particularly those requiring respiratory care and ventilatory assistance. Mel Martin, MS, RRT President 192 Association Humanizing 3615 Wisconsin Avenue, N.W. for the Health Care for Washington, D.C. 20016 Care of Children (202) 244-1801 Children’s Health and Their Families TESTIMONY for the Task Force on Technology-Dependent Children Thank you for the opportunity of testifying before this Task Force on Technology-Dependent Children. I am Beverley Johnson, and I serve as the Executive Director of the Association for the Care of Children's Health. The organization is known to many as ACCH. ACCH was founded in 1965 and since that time has focused its activities on the psychosocial and developmental needs of children and their families in all types of health care settings... The organization works primarily through interdisciplinary interaction, education, advocacy, and research. Currently ACCH has close to 4000 members representing all the health disciplines and parents. Approximately 10% of our members are Canadians. ACCH publishes a quarterly journal and numerous other publications. Anywhere from 1,000-1,600 people attend our Annual Conferences. We have 50 regional affiliates which sponsor local and regional educational programs. Since 1980, ACCH has sponsored an annual public education campaign called CHILDREN AND BOSPITALS WEEK. Among the issues on which ACCH has placed priority attention since its founding are: ® Facilitation of parent participation in child heath care through encouragement of rooming-in and 24 hour open visiting in hospitals. ® Preparation and emotional support for children and their families before, during, and after medical or surgical procedures. ® Establishment of professionally staffed child life and hospital school programs to foster development and normalize the hospital environment. ® Enhancement of child development knowledge and communications skills of health care professionals who provide direct care to children. ACCH was formerly the Association for the Care of Children in Hospitals 102 ® Awareness of the necessity for the architecture and interior design of health facilities to be supportive of the needs of children and families. ° Promotion of alternatives to hospitalization for children. ® Encouragement of parent/professional collaboration in the design, implementation, and evaluation of child health policies and programs. During the past 30 years, advances in medical science and technology have brought about major changes in the way many childhood chronic illnesses and disabling conditions are treated. The resulting progress has done much to improve the quality of life of children with health impairments. It has also posed new challenges to families. Parents are now assuming the major responsibility for the care of a child whose needs may require extensive multidisciplinary involvement by health professionals, teachers, and others in the community. As they take on the management and coordination of their child's care, parents must develop skills and expertise that go far beyond their traditional roles. If they are to succeed they must be encouraged and assisted by a system that is responsive and that respects their individual differences and coping styles, and welcomes them as true and equal partners with professionals. In 1981 ACCH began to reach out to parents of children with special health needs, realizing that their perspectives were vital to building systems of care that were truly responsive. This parent network has been built on the belief that families have certain generic needs regardless of their child's disability. By using this generic or noncategorical approach, rather than a disease specific approach, ACCH has built a network of parents who speak out on issues which are relevant to the care of a wide cross section of health conditions in both rural and urban areas, in differing cultures, and socioeconomic groups. In 1983 ACCH convened the first Parent Network Meeting held in conjunction with its Annual Conference. In the past five years this network has grown to include more than 400 parents from 45 states and Canada. These parent leaders represent a broad range of parent organizations and support networks. This year we anticipate that over 100 parents will attend the ACG Conference in Halifax, Nova Scotia. The importance of parent/professional collaboration in quality child health care will be a significant theme of this meeting. More than 20 of the 100 educational sessions pair parents with professionals as presenters. In January of 1986, ACCH received a three year grant from the Division of Maternal and Child Health to promote a family-centered 194 approach to care for children with special health needs. This grant enables us to build upon the work we have done in conjunction with the Parent Network activities and to broaden our efforts to implement a family-centered approach to care for all children. Family-centered care is a philosophy of care that recognizes and respects the pivotal role of the family in the lives of children with long term health impairments. It is a philosophy that strives to support these families in their natural caregiving roles by building upon their unique strengths as individuals and as families, It is a_ philosophy that views parents and professionals as equals in a partnership committed to excellence at all levels of health care: in practice, in programs, and in policy. This philosophy of care is particularly important for children with complex medical needs. In the course of the grant's activities and with the assistance of many parents and professionals, we have identified eight components essential for a family-centered approach to care. These components are: 1. Recognition that the family is the constant in the child's life while the service systems and personnel within those systems fluctuate. 2, Facilitation of parent/professional collaboration at all levels of health care: e care of an individual child; e program development, implementation, and evaluation; ® policy formation. 3. Sharing of unbiased and complete information with parents about their child's care on an ongoing basis in an appropriate and supportive manner. 4. Implementation of appropriate policies and programs that are comprehensive and provide emotional and financial support to meet the needs of families. 5. Recognition of family strengths and individuality and respect for different methods of coping. 6. Understanding and incorporating the developmental needs of infants, children, and adolescents and their families into the health care delivery system. 7. Encouragement and facilitation of parent-to-parent support. 195 8. Assurance that the design of health care delivery systems is flexible, accessible, and responsive to families. This philosophy of care can best be summarized in the words of a parent of twins with serious health needs, *I have to know that I have done the best I can do. And that tells me that I have to provide for my children in the context of my family, and my values and my ideals and my lifestyle... There is hope, and there is reality, and there is denial. But all of those can be confronted within the context of family-centered care” (Kramer, 1986). While there are a growing number of examples of a family- centered approach to care, many barriers still exist which impede its full implementation. The following are some of the major barriers to quality family-centered care and recommendations for eliminating these barriers: 1. Insufficient Education and Training: Parent/professional collaboration requires a new way of practice, a new way of looking at care. Neither families nor professionals have been prepared well for this change. Child health care is radically different today than it was just a decade ago. Children with very complex health conditions are now surviving, living in the community: whereas before, these children either did not survive or were cared for in institutions. Unfortunately today too many of these children are growing up in our hospital intensive care units. Professional educational programs have not included planning for care in the home and community. Rather they have focused on institutional care. Training for professionals has not emphasized the importance of interdisciplinary or interagency collaboration, nor has it taught the skills necessary to participate as an interdisciplinary team member. Training has not addressed the need for professionals to have good communication skills and methods for working collaboratively with families. Further, professionals have had few opportunities to learn the perspectives of parents or to hear directly from them about their support needs. Education is needed for parents also. They need to be better prepared as they assume responsibility for the care of their child. They also need to enhance their skills in working collaboratively with professionals. Like professionals, parents need opportunities to hear the perspectives of others. 196 Recommendation: Professional education at the pre- service and in-service level needs to focus on changing attitudes of professionals, building their skills in communications, enhancing their understanding .of child development and family dynamics, and furthering their recognition that care for a child must be developed within the context of the family. In addition, it needs to enhance professional's appreciation for interdisciplinary input and their capacity to participate positively on interdisciplinary teams. Additional education programs are needed to better prepare professionals for providing care in the community and for assisting families in obtaining such care and providing such care in the home. Parents should play a significant role in developing these educational programs. Incentives need to be offered to schools and to in- service providers to encourage the development of educational programs which address these issues. Additional educational programs that build the skills of parents to work collaboratively with professionals should also be encouraged. One excellent model for this type of program is the CAPP project (Collaboration Among Parents and [Health] Professionals) supported by the Division of Maternal and Child Health and developed by the Federation for Children with Special Needs in Boston. sharing of Responsibilities: As mentioned before, both parents and professionals are assuming new roles. These new roles mean that parents are participating in ways which traditionally were assumed only by professionals. At first it may be difficult for professionals to even recognize that parents should participate in the decision-making process. Once recognized it is still difficult to share the responsibility in actual practice. The complexity of care for children dependent on technology and the enormous liability issues for professionals contribute to the reluctance of health professionals to share control. Further, a lack of experience and training in working in a collaborative fashion also makes it difficult for professionals to share responsibility with parents. Recommendation: We need to create an atmosphere which facilitates meaningful discussion between parents and professionals where parents can freely share with professionals the role they wish to play in the care of their child. The roles of parents and professionals in 197 providing care such as giving medications, adjusting IV's, giving gastrostomy feedings, and adjusting oxygen levels and ventilator settings need to be clearly delineated, both in the hospital and at home. In hospital, we need to have mechanisms to provide a balance between encouraging parents in providing the care they wish to provide and recognizing their need for relief in providing such care. For example, Care by Parent Units in hospitals, which provide only minimal professional staff as back up, can provide a mechanism which allows for full participation in care by parents, offers some reasonable limit of liability for the hospital, creates a transition between hospital and home, and reduces some of the costs for care. This type of unit can be an excellent mechanism to enable parents to learn about and become comfortable with providing complex care to their child. The number of these units should be increased. Lack of Information: Insufficient information is a barrier to family-centered care for both professionals and parents. Both lack adequate information on community services and sources of support for families as well as ways to tinance these services. They also may lack information about the kind of support services (such as respite care and transportation assistance) that are meaningful to families. Families, across all types of chronic illness and disabling conditions, tell us that inadequate information is the single greatest deterrent to their caring for their child. Information on the child's medical condition is frequently insufficient and sometimes too technical. Professionals are not adept in providing information in an appropriate and supportive manner and often they don't realize the importance of repeating information and updating information, as the child's and family's needs change over time. Of critical importance to families wishing to care for their children at home and in the community is information about support services. This information is rarely available and yet is an essential component in many families' ability to care for their child at home. Recommendation: Toll-free telephone information systems need to be established to provide accurate and current information to parents and professionals. The information on services needs to be available for specific communities, not just within states. Family Libraries or Parent Information Centers in communities and health care settings, special collections in public libraries on child health care and supportive services, and frequently updated directories of community services in physicians' offices and clinics are all effective 198 ways of making information more available to families and professionals. We should also develop mechanisms for putting parents in touch with other "experienced" parents who can share information on an inforfial level. Lack of Community Support Services: The development of community support services has not kept pace with advances in technology and the shift from institutional and hospital care to home and community care. In order to care for their child at home and in the community, families with children need the following support servites: In-home health care services Respite care Care (case) management services Parent-to—-parent support Transportation assistance Equipment loan or exchange programs Day care and babysitting services Family Resource Libraries or Parent Information Centers Sibling Support Programs Hospice Care Early Intervention Programs Toy Lending Libraries Camps Access to school in the community in the least restrictive environment; when hospitalized, continuity in schooling; and when necessary, home tutoring Financing mechanisms for these vital supportive services within the hospital and for in-home and community care are inadequate. These services are relatively low cost compared to the costs of technology, drugs, and medical care. There are many examples of unwanted and costly institutionalization occurring because these support services were unavailable to families. Financial incentives are needed to encourage the development of innovative community support programs which enable these children to be cared for in the hame enviromment. Recommendation: Policies in financing health care need to recognize the complexity of needs of these children, that their needs are not limited to physical needs, but encompass emotional, developmental, social, and intellectual needs as well. Financing mechanisms must be assured for the vital support services delineated 199 above. It is critical that funding be available for psychosocial support services throughout all hospitalizations, and that this funding continue when the children are able to return home. Funding should not be restricted to only those children who are homebound since many children with complex health needs can and should be outside the home for parts of the day when appropriate support is provided. 5. Lack of Coordination of Care: The very nature of the complexity of the needs of these children necessitates that they will interact with all levels of care and with multiple agencies and providers. Mechanisms for coordination of care are particularly important if these children are going to be cared for successfully in the community. Recommendation: Financing mechanisms must provide for care coordination (case management) whether provided by a professional or a parent. The lives of children dependent on technology have been saved, in large part, because of the outstanding work of our tertiary care institutions, but we have failed to develop adequate primary and secondary systems of care to complement the tertiary system. Because community care may not have been developed and because of the financial incentives, tertiary centers have inappropriately encouraged the dependency of these families. This has been costly both in human terms and in dollars. Recommendation: In order to care for these children with special health needs in their homes and communities, we must build the competency of the primary and secondary care providers, particularly in areas distant from specialty centers. Further, we must build the linkages to and from the primary, secondary, and tertiary providers. Financial incentives for providers must be developed which combine inservice education on this complex care with commitment to provide such care to these children. CONCLUSION The ultimate goals of health care financing should be to rovide quality health care to all children and to support the Family in its caregiving role. We therefore recommend: 200 Health insurance, both public and private, must adequately cover chronic care and care at home, regardless of whether the child is homebound or not. Health insurance, both public and private, must recognize the comprehensive needs of children and their families and not be restricted to isolated and categorical physical needs. Health insurance, both public and private, must recognize the necessity for financing supportive services for children with special health needs and their families. Health insurance, both public and private, or the potential loss of it, must not interfere with a family’s range of options in regard to employment opportunities. Health insurance, both public and private, must ensure equal access to care for all children across geographic boundaries. Health insurance, both public and private, must protect and respect the dignity and integrity of families. ACCH appreciates the opportunity to present this testimony to the Task Force and would be pleased to assist in the future with the development of systems of care and the financing of such care to enhance the health and well-being of children and their families. Submitted: April 17, 1987 Oral Testimony: May 6, 1987 201 STATEMENT BY THE AMERICAN NURSES' ASSOCIATION ON HOME AND COMMUNITY-BASED CARE FOR TECHNOLOGY -DEPENDENT CHILDREN Before The TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN By Juanita Fleming, Ph.D., R.N:, F.A.A.N. on May 6, 1987 202 Mr. Chairman and Members of the Task Force, I am Juanita Fleming member of the Board of Directors of the American Nurses' Association. It is my privilege to submit these remarks on behalf of our 188,000 members regarding home and community based serves for technology-dependent children. We appreciate this opportunity to share our views on issues the Task Force is addressing. The population of children with chronic conditions is increasing due to advances in medical technology and enhanced life saving and life prolonging skills. Children who previously would have died at birth or from injury and children who previously would have a limited life expectancy due to a chronic condition now survive. Chronically ill children are defined either as those children 0-21 years with an illness which may be permanent, caused by a nonreversible pathological condition and require long-term supervision, or children with an acquired or congenital condition that resulted in a hospitalization, and were discharged and needed highly technical care for at least one month in the home. Definitions of highly technical home care are divided into three groups: 1. Life-saving care measures: those carried out, for the most part, in the hospital and are essential to prevent imminent death. 2. Life-sustaining: refers to care in the home that maintains health and prevents disabling complications or death, for example, ventilator- dependent, intravenous therapy, chemotherapy by intravenous, CAPD, (central arterial profusion dialysis). 3. Life-enhancing care: refers to care in the home that maintains, restores, or facilitates the child's development to a satisfactory level (for example, Heparin lock care, Hickman catheter care, colostomy/ileostomy). 203 Children with chronic conditions pose a challenge to the health care system because of their complex needs and high utilization of health care resources. Children with chronic conditions also demand adaptations of their families. The family may experience a drain on resources in terms of time, physical and emotional energy and dollars. Technology-dependent children are more vulnerable, dependent as they are on some form of medical support for survival. When a child moves home from the hospital, the care requirements, equipment maintenance and multiple health care providers move with them. Family interaction, privacy and intimacy are intruded upon as the health care system works to ensure a safe environment for the child. Children who are technology dependent receive enormous benefit from the love and security of the family in the home environment. Many families prefer to have their children at home so that growth and development can occur in the context of normal family activities. Families have voiced concern about the over stimulating environment in acute care hospitals, and the implications for normal growth and development. Successful adjustment to home care for these vulnerable children and their families is dependent on collaboration among the hospital team, community resources, and parents. The families must have the commitment to home care and assume responsibility for their child with chronic and acute illnesses. Success in home care requires thorough family assessment by the practitioner, provision of guidance to the family, and on-going support and evaluation of the selected services. Home care can be complicated by the family's social, financial, and housing situation to the extent that it may be an unrealistic option for the technology-dependent child. Sometimes services are instituted only to be discontinued because of familial noncompliance, severe 204 housing problems, changes in social circumstances or difficulty coping with the needs of the: chronically ill child. It is unrealistic to expect a family to cope with a child requiring extensive care 24 hours a day, seven days a week alone. Family members assume as much care as is safe, but need at least respite services and sometimes 24 hour RN care in the home. The needs of the child and family, be they social, emotional, physical, or economic,, change over time and need to be monitored so necessary adjustments can be made. At the same time, health professionals must be sensitive to the parents need to control their family environment. ANA would like to see home care services more readily available to technology-dependent children and their families. Services for these vulnerable children should be provided in the least restrictive setting possible. We are concerned however, that the development of these services are coordinated with existing home care resources and that there is accountability for quality of care, appropriate utilization, and cost effectiveness. "High-tech" home care is a newly emerging area of care. There is a need to establish regulatory guidelines for the manpower, quality assurance, and economics of highly technical care provided to children in the home. This need is intensified in light of the trends toward the pro-competitive health care model and anticipated extension of DRGs beyond Medicare-eligible populations. Currently, a limited number of public health departments, Visiting Nurse Associations (VNAs) and other community-based health care agencies are providing "high-tech" home care to children who are ventilator-dependent, receiving hyperalymentation or other continuous or intermittent intravenous therapy, and those with a variety of genetic or congenital syndromes. This care is available in very few areas of the country and is restricted to metropolitan areas and limited by funding levels. In line with the health care financing system shift from fee-for-service to prospective 205 payment mechanisms, cost savings has become a priority. This shift toward cost containment has created a shift toward decreased length of stay in hospitals as well as decreases in services provided, and moved the provision of care to the community agencies. The movement of this "high-tech" care of chronically ill children to community agencies has dramatized the lack of qualified providers, lack of services, and lack of community and social support. The need for competent health care providers to bridge the gap from hospital care to home care seems critical. There are several barriers to high quality coordinated home care services for technology dependent children. These barriers include lack of qualified nurses and other health professionals; lack of organized services capable of assuming coordination among services, communication among providers and continuity of care; and lack of reimbursement for necessary equipment and services, both in the public and private sector. Qualified Nursing Care The need for nursing care is recognized as one of the primary concerns for this population. The range in nursing needs to technology dependent children and their families varies from provision of health maintenance procedures to teaching and monitoring other providers of care, establishing emergency procedures and evaluating the child's health status. The community health nurse generalist, prepared in nursing at the baccalaureate level, providers general nursing services to individuals and families needing home care. The expertise of a specialist in pediatric intensive care may also be necessary on an intermittent basis. At the present time, there is a shortage of nurses prepared at the baccalaureate generalist level and at the masters specialist level in pediatrics and intensive care. This is true for hospital care and home care. It is 206 possible that the availability of qualified personnel will be further exacerbated in the future by access and affordability of professional liability insurance. Organized Services Agencies organized for the delivery of health care in the home are the most effective mechanisms to make sure the necessary multiple services are available and to assure coordination and communication among providers and family members. In many geographic areas, home care agencies do not exist. Family members may take on the role of overall management and coordination of care and contract with individual providers. The relative availability of organized services is crucial to effectiveness and quality. Reimbursement There are several funding sources of home care services for technology dependent children that are often difficult to understand and vary greatly from state to state. These include private insurance, Medicaid, State Crippled Children's programs, and private philanthropy. Technology dependent children are less likely to be covered by private health insurance than children without major health problems. The 1982 National Health Interview Survey showed that 53.8 percent of noninstitutionalized children with severe limitations of activity had private insurance whereas 74.3 percent of children without limitations were covered. Even with insurance coverage, there are many services needed that are not included in the package of services covered. Private insurers are experimenting with individual benefit management programs and case management that appear very promising. Medicaid, the payer of last resort, based on family inclusive unless the child is institutionalized, varies in services covered by each state. Recent waivers, such as the home and community-based waiver, give the states more flexibility in providing necessary services, but not all states have used these 207 options. The State Crippled Children's Services, part of the Title V programs, may offer home care services and training for families of technology-dependent children. Again, there is tremendous variation by state. Most program funds are spent on screening, diagnosis and treatment of handicapping conditions and charge on a sliding scale, fee-for-service basis. The Special Projects of Regional and National Significance (SPRANS) are an exception, since they target long-term care for ventilator-dependent children. There are some national and local charitable organizations that target this vulnerable population. Some home health agencies provide charitable services. Charitable organizations usually do not cover multiple services but focus on a particular disease or selected equipment or therapy that is not covered by other programs. With the information and experience we now have in working with families to care for technology-dependent children at home, we should be able to develop mechanisms to provide the necessary financial coverage for services. Approaches include the following: incentives to the private insurance industry to expand coverage for families with technology dependent children; expansion of the Title V SPRANS projects; and leverage by the federal government to encourage state expansion of the home and community based waiver program for care of technology dependent children. While flexibility is always important, we would hope that each state would have at least a basic package of services to address the needs of this special group of children. We look forward to working with this Task Force and the Department of Health and Human Services as they develop regulations that will assist in assuring quality home care services to families and children coping with new technologies. We can provide technical assistance and share our professional standards for nursing in community health and specialty pediatric nursing. Just as it is 208 important for a well functioning team to work together to provide needed care for technology dependent children, it will be important for the Federal Government to work together with professional associations and other private organizations to assure access to high quality services. We need to expand on what has been accomplished so that more of our chronically ill children may remain at home with their families. 209 BOARD OF DIRECTORS 1987-88 President New brsand Deaconess Hospoad Roston MA President-tlect Lan | R Nea MD Fanon of PASGeob of Mediane Hospi ci the Eanes oi PA Philadephia, PA Vice President Bruce R Bisinga, MD Ph D larva 2 Medics Scho New bE rzand Deaconess Hospital Boston, MA Treasurer Loci DD Kopp. MD LCA Sanoor of Medicine Harhor-U CEA Medical Center Lorcanee. CA Secretary Licanor A Young. PRD CRD TD Uanaversiny of Tovas Health Saienee Center Lt San Antomo Nan Anatomie EN Immediate Past President "on P Gan MD Duke anaes Medea Center Drarae NC Chairman - Education and Professional Development ND Shccac 1) Cas an eat ww can « CNL i ' Coa Conter on Lanons . cot Chairman - Membership ob Romnandt MD Pon tacos Mospitads Vero ee Nitta ston Hospod ins i Chairman - Pubbcations Nocera RNY MSN CCNY DN NENA ce sence Cone Soon co NY Iarector-at-1 arge - Dietitians worasa Sappa MINS ORD Po Hosp Iam it Director-at-1 arge - Nurses Con Aonnads-Caidwal, RNC MSN CNSDN Boat on : Poa tenos RI Director-at-1arge - Pharmacists Foscph SN Bartine 10 Pharm DD Phe Mo eons Bassett Hospual Conporsoan, NY Director-at-1 arge - Chapters Cor oo WNW HEM D Vilar or Conorado Heath h T esas C0) Director-at-1 arge Codon PW ~0 1 ND Lvov on 2S ac of Mediene Hoe aersiy ob PA I oaeot a Director-at-1 arse Voss ob oes Mn coe Uhm oo MAN taeative Ehrector Bai. Neos American Society For Parenteral & Enteral Nutrition" N603 CAMERON STREET April 24, 1987 SUITE 300 SIEVER SPRING. MD 20910 130) 37.633 Bill Pickens, Executive Director Task Force on Technology Dependent Children Department of Health and Human Services Health Care Financing Administration Room 4414 - HHS Building 330 Independence Avenue SW Washington DC 20201 Dear Mr. Pickens: I am pleased to respond to your letter to Mr. Barney Sellers, Executive Director of the American Society for Parenteral and Enteral Nutrition, inviting our organization to appear before the Task Force on Technology-Dependent Children on May 6, 1987 at the Pentagon City Quality Inn. This presentation will be at 11:30 a.m. I am also delighted that we have been given the opportunity to prepare a document for you prior to that meeting outlining the views of the American Society for Parenteral and Enteral Nutrition on both home and community-based care of technology-dependent children. I am writing this preliminary statement on behalf of the Society, and it will subsequently be reviewed for endorsement by the Board of Directors of our Society. My purpose in preparing this preliminary statement is twofold. First I wish to emphasize the importance of a standarized method for the transition of medical care from the hospital to the home care/community based environment. Such standards emphasize the importance that such therapy plays especially in the care of the technology-dependent child whose long-range rehabilitation would preferentially be done in the home as part of his or her family unit. The American Society for Parenteral and Enteral Nutrition has taken a leadereship role in the development of such standards for both hospital-based and home nutritional support patients. Since our Society and these standards represent those professional disciplines whose role is to monitor nutritional care, namely, physicians, pharmacists, dietitians, nurses, and nutrition scientists, we feel particularly qualified to make such comment. Secondly, we wish to review the indications and methods of utilization of nutritional support for the technology-dependent \ society of nealth care professionals dedicated to optimum nutrition tor patients 210 Bill Pickens, Executive Director Task Force on Technology Dependent Children April 24, 1987 child hoping to serve as a resource to your committee for such technical information. We look forward to presenting formally on the 6th of May, and I hope that the attached document will provide preliminary background information for that presentation. Sincerely, A oSPt American Society For Parenteral & Enteral Nutrition 211 Statement to the Tisk Force on Technology-Dependent Children Moritz M. Ziegler, M.D., on behalf of American Society for Parenteral and Enteral Nutrition May 6, 1987 The American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) is a professional society whose members are health care professionals--physicians, nurses, dietitians, pharmacists, and nutritionists--dedicated to optimal nutrition support of patients during hospitalization and subsequent rehabilitation. I am a pediatric surgeon at the Children's Hospital of Philadelphia and the University of Pennsylvania School of Medicine, co-director of the Nutrition Support Service of the Children's Hospital of Philadelphia, and an active member of A.S.P.E.N. I have been asked to make these preliminary remarks on behalf of A.S.P.E.N. and I hope to emphasize that we recognize the importance of the opportunity to make these presentation. ASPEN's diverse professional membership reflects the basic importance of good nutrition to good medical practice and the multi-disciplinary team approach to sound nutrition support. The purpose of A.S.P.E.N. is to promote professional communication among and within professional disciplines in the broad field of clinical nutrition through national and regional meetings, local seminars, scientific, clinical, and educational exhibits and publications. It also promotes the proper application of clinical and research experience to the practice of nutritionally sound medicine. Finally, the Society encourages professional competence of practitioners and investigators in the fields of parenteral and enteral nutrition and the improvement of patient care through specific postgraduate and continuing education programs. The membership of A.S.P.E.N. as of December, 1986, includes 4,500 active members of which 1,200 are physicians or doctoral scientists, 1,100 are dietitians, 600 are pharmacists, 500 are nurses, 600 are members of industry, students, or health professionals. 212 STANDARDS OF NUTRITIONAL CARE: (See appendix) To acoomplish its stated purpose, A.S.P.E.N. has fostered the development of standards of nutritional care. Specifically, the organization by means of its Standards Committee, has developed and published the following sets of standards: (1) Standards for Nutrition Support of Hospitalized Patients-1984; (2) Standards for Nutrition Support of Home Patients-1985; (3) Standards of Practice Nutrition Support Nursing-1985; (4) Standards of Practice Nutrition Support Dietitian-1986; (5) Guidelines for Use of Total Parenteral Nutrition in the Hospitalized Adult Patient-1986; (6) Standards of Practice Nutrition Support Pharmacist-1986; and (7) Guidelines for Enteral Nutritional Support; and (8) standards under development include guidelines for the use of home total parenteral nutrition, standards of nutrition support for physicians, and standards of nutrition support for the pediatric patient. The technology-dependent child is that pediatric patient in whom a part of normal body function is substituted for by a medical device. Nutrition support for this patient is critically important, but it is a secondary component in children whose technology-dependence involves a body system other than the gastrointestinal tract; for example, a respirator, artificial kidney machine, or a cardiorespiratory monitoring device. In such children, nutritional care may be integral in reversing the underlying disease process causich such technology dependence. Additionally, nutritional support may be primary in that child whose applied "nutritional™ technology substitutes for an anatomically inadequate or functionally impaired gastrointestinal tract. Whether primary or secondary, the technology of nutritional support varies from the use of enteral feedings given through specialized feeding access devices into the gastrointestinal tract to the use of total intravenous nutritional support for that patient whose gastrointestinal tract cannot be utilized either because of inadequate anatamic length or inadequate functional capability. Nutritional support in the pediatric patient has classically been done 213 for the following reasons: (1) protein calorie malnutrition where the malnourished state is a primary disease process or where it occurs secondary to a coexisting disease; (2) congenital gastrointestinal disease in which the bowel is rendered anatomically inadequate in length (for example, intestinal atresia, in utero volvulus) or inadequate in function (for example, Hirschsprung's disease, malabsorption of cystic fibrosis); (3) acquired gastrointestinal disease (for example, necrotizing enterocolitis); (4) specialized metabolic problems (for example, the severely traumatized child including the burned child; the child with unusual metabolic needs secondary to inborn errors of metabolism; or the child with specialized needs following failure of other major organ systems such as the liver or kidney); and (5) the very low birth weight infant, an increasing population of immature infants who are survivors because of the success of modern day intensive care technology. Parenteral nutrition support is of particular utility in those circumstances where use of the gastrointestinal tract has been inadequate to provide the required nutrients needed either to replenish or maintain nutritional status. Parenteral nutrition support providing nutrients by the intravenous route has been utilized either as a total means of nutritional support in the absence of a functional G-I tract or it has been utilized to supplement partial or incomplete nutritional support through the enteral route. Enteral nutritional support utilizing specialized access devices and specialized formulas has been considered necessary when conventional feedings or special formulas via the oral route are inadequate either to replenish or maintain patient nutritional status. Home care of the pediatric patient is attractive because the technology of either enteral or parenteral nutritional support is readily learned, easy to apply and it permits a comfortable transition of the hospitalized patient into the home care enviroment. The advantages of such therapy are a favorable 214 risk-benefit ratio supporting efficacy of the treatment, potential cost savings, and most importantly, though subjective, the advantage of returning the child to his/her home enviromment. Clinical Setting and the Use of Home Nutritiopal Care The primary diagnostic category which necessitates home parenteral nutrition and eventually the transition to home enteral nutrition is the short bowel syndrome. Short bowel syndrome occurs when the gastrointestinal tract is rendered either anatomically or functionally inadequate. Anatomically, patients may have inadequate intestinal length on a congenital basis or its length may be foreshortened following acquired disease states including operative removal of intestinal length secondary to trauma, chronic inflammatory disease, cancer, or other entities. Functional causes of short bowel syndrome include congenital and acquired problems with absorption as well as intestinal dysmotility. Such functional bowel inadequacy has the same ul timate influence on impairing absorption of nutrients delivered conventionally through the bowel. These patients therefore initially require parenteral nutrition support to supply adequate nutrients both to maintain and replenish nutritional status, a need which is especially acute in the growing child. Home parenteral nutrition would usually be helpful in those diseases which may impact significantly on intestinal function including severe Crohn's disease, chronic radiation enteritis, disturbances of intestinal motility, selected malignancies, certain congenital bowel diseases affecting both the anatamic length and function of the small intestine, enterocutaneous or enteroenteric fistulae, extensive intestinal obstruction, and malabsorptive and diarrheal disorders. Home nutrition support via the parenteral route is of limited value in patients who demonstrate inadequate oral or special enteral intake for periods 215 of time less than seven to ten days. It is also of limited value in patients who are proved to have or suspected to have a terminal disease. Specifically, home nutrition support by the parenteral route should not be utilized in patients whose medical problems require continued in-hospital care, patients who have a functional and usable gastrointestinal tract capable of absorbing adequate nutrients either via the oral route or utilizing special enteral feedings, patients or their families who are unable to learn the techniques and procedures needed for home care, and when the patient's psychological state or the home enviromment would interfere with safety. There are also circumstances in which nutrition support may not be desired by the patient or their guardian; and if this action is in accordance with a given institution's policy and it is not contradictory to the existing law, then nutrition support should not be offered. Though documented diagnostic categories needing nutrition support are defined and though standards for hame nutrition support exist, the pediatric population in need of this therapy is difficult to predict. A.S.P.E.N. and the Oley Foundation maintains a registry of patients on special home nutrition support, and in 1985 they listed 147 children between the ages of 0 and 10 who required such therapy, 92 of whom received nutrition via the parenteral route. Other commercial registries suggest that as many as 300 to 400 children under the age of 18 receive home intravenous support under the age of 18 and an additional 300 to 400 children receive special enteral nutritional support. Based on these data, it is apparent that several hundred American children will have a primary technology-dependence on nutritional support. However, when such children are combiped with those whose nutrition support is a secondary component to another ‘technology-dependence in the home enviromment such as a 216 ventilator or artificial organ, then this number may rise rapidly into the thousands. These children, dependent secondarily on nutrition support to augment therapy of their primary disease, usually receive such nutrition via the enteral route supplementing the normal oral intake. Summary : It is the view of A.S.P.E.N. that the movement of technology-dependent pediatric patients from the hospital to the home-care enviroment Is appropriate, and this trend will include an ever growing portion of hospitalized American children. Standards which have thus far been developed by A.S.P.E.N. should be applied to these patients, and further standards in the developmental stage will help assure efficacy of continued home care programs. It is critical that such standards of care which cross the disciplines involved in home nutrition support be developed and adhered to for rendering appropriate and safe care to such children, and such standards must emphasize the role which families or significant other caretakers must play. It should be emphasized that home nutrition support, whether by the parenteral or special enteral route, does not mandate the intensity of in-home care as seen with the technology-dependent artificial organs; however, it must also be emphasized that the magnitude of appropriate in-home nutrition care is a significant burden which demands both financial and service support to such families to aid them in the care of their special children. A.S.P.E.N. remains concerned that financial barriers to such home care currently exist. Whether such financial support comes from private insurance carriers or from govermmental sources, the barriers which stand in the way to access such funds are formidable and place a significant added burden on the family and on planners organizing the transition into home care. Such additional support must be given to the family not only in transition from the hospital to the home, but during care in the home enviromment and for the eventual transition from special parenteral or enteral nutrition support to conventional oral feedings. 217 oP AMERICAN SOCIETY FOR PARENTERAL AND ENTERAL NUTRITION STANDARDS FOR NUTRITION SUPPORT Hospitalized Patients January 1984 218 A.S.PE.N. is a professional society whose members are health care professionals - physicians, nurses, dietitians, pharmacists and nutritionists dedicated to optimum nu- trition support of patients during hospitalization and re- habilitation. A.S.PE.N.’s diverse professional membership reflects the basic importance of good nutrition to good medical prac- tice and the multidiscipline team approach to sound nu- trition support. A.S.PE.N. has developed these standards to promote the health and welfare of those patients in need of enteral and parenteral nutrition. The standards represent a fair concensus of A.S.PE.N.'s members as to that minimal level of procedures which should be followed in order to assure sound and efficient enteral and parenteral nutri- tion care. A.S.PE.N. disclaims any liability to any health care provider, patient or other persons affected by these standards. Copyright, 1984 American Society for Parenteral and Enteral Nutrition 8605 Cameron Street Suite 500 Silver Spring, MD 20910 (301) 587-6315 All rights reserved. Copies of this publication may not be made without the explicit written consent of this Society. 219 Dear Colleague: This publication contains minimal standards of care for hospitalized patients to ensure that malnutrition is recognized and effectively and safely treated. The Standards are presented in the Joint Commission for the Accreditation of Hospitals (JCAH) format. Each Standard is usually followed by an explanatory paragraph. Each of these Standards represents minimal acceptable levels of care and should be subscribed to by any acute care hospital, large or small, with or without a formal nutrition support service. Specific diagnostic tests, treatment modalities and protocols have not been detailed, but presented in the broadest, most generic terms so that these can be specified by each hospital's nutrition support team or appropriate hospital committee. The Society is aware that these standards may be difficult to meet for some small hospitals (those with fewer than 200 beds). We expect this to be especially true for those standards which are addressed to organizational questions, e.g. composition of a nutrition support team. In these circumstances, the Society feels the standards may be used as optimal standards, rather than minimal standards. However, the Society also cautions against a smaller hospital providing these specialized services with such limited resources or at such a low frequency level that adequate standards of care may be compromised. Such circumstances should obviously be avoided. These Standards are evolutionary and will be reviewed, updated and amended as needed to keep pace with advancements in medical science and changes in the delivery of health care. The A.S.P.E.N. Select Committee on Standarcs of Professional Practice, a multidisciplinary group, prepared these final stand..:ds after receiving comments on an earlier draft from A.S.P.E.N. members. We welcome your comments. 7 / (Grey J Ezra Steiger, M.D. Chairman, Committee on Standards of Professional Practice 220 STANDARDS FOR NUTRITION SUPPORT Hospitalized Patients 1. Definitions Enteral nutrition - nutrition provided through or via the gastrointestinal tract oral - enteral nutrition taken through or via the mouth tube - enteral nutrition provided through a tube that delivers nutrients distal to the oral cav- ity Feeding formulation - a ready to administer mix- ture of nutrients Malnutrition - any disorder of nutrition, usually a deficiency of nutrient intake or impaired nutrient metabolism Nutrient - protein, carbohydrate, lipids, vitamins, electrolytes, minerals, and water Nutrition - the sum of the processes by whiz~ one takes in and utilizes nutrients Nutrition support service - a multidiscic ‘rary group of health care professionals who aid 1 the provision of specialized nutrition support Parenteral nutrition - nutrients provided by means other than the gastrointestinal tract central - parenteral nutrition delivered through a large diameter vein, usually the subcla- vian or superior vena cava, that empties directly into the heart peripheral - parenteral nutrition delivered through a smaller vein, usually in the hand or forearm Specialized nutrition assessment - a compr=-en- sive approach to defining nutrition status tha: em- ploys clinical and dietary histories, physical exam- ination, anthropometric measurements, and 'abo- ratory data Specialized nutrition support - provision of spe- cially formulated and.or delivered intravenous or enteral nutrients to prevent or treat malnutrition 221 2. a) Nutrition Status - CRITERIA SHALL BE ESTAB- b ~ a) b LISHED FOR THE IDENTIFICATION OF A PA. TIENT WHO EITHER IS OR MAY BECOME MAL- NOURISHED. Nutrition status includes: a nutrition history; a weight history including change over time; ac- curate height and weight measurements, age and sex; evaluation for clinical signs of mal- nutrition; appropriate hematologic, serum and urine determinations. Indications and Contraindications for Spe- cialized Nutrition Support - GUIDELINES FOR SPECIALIZED NUTRITION SUPPORT SHOULD BE ESTABLISHED TO EVALUATE EACH PA- TIENT'S CLINICAL SITUATION. Although there are no uniform scientific data, the following guidelines are recommended: 1) Normally nourished patients who are eating sufficiently - no additional therapy. 2) Normally nourished patients who are not eating sufficiently for a period of less than 5-7 days, no further therapy. For a period of Assessment c) over 5-7 days, enteral and or parenteral nu- trition support to meet nutrient requirements should be considered. Malnourished patients who are eating suffi- ciently - no further therapy. Mainourished patients who are not eating sufficiently, enteral and.or parenteral nutri- tion support to meet nutrient requirements should be considered. Selected patients who are hypermetabolic may require specialized nutrition therapy be- fore 5-7 days. 3 — 4 ~~ 5) Determination of Nutrient Requirements - A QUANTITATIVE EVALUATION OF THE NU- TRIENT NEEDS CF THE PATIENT SHOULD BE DONE PRIOR TO THE INITIATION OF SPE- CIALIZED NUTRITION SUPPORT. Nutrient requirements should be determined by considering the specific disease state, the pa- tients nutrition status and the duration of antici- pated inadequate intake. 3. Therapeutic Plan Objective - THE OBJECTIVE(S) OF SPECIALIZED NUTRITION SUPPORT SHALL BE DETERMINED AND DOCUMENTED. The objective(s) shall address at least the follow- ing criteria: 1) Immediate, intermittent and end outcomes of nutrition therapy 2) Anticipated length of time on specialized nu- trition support 3) Discharge planning and/or home training The objectives should be developed prior to the initiation of nutrition support and should be subsequently documented in the patient's medi- cal record. Mode - THE ROUTE(S) SELECTED TO PROVIDE SPECIALIZED NUTRITION SUPPORT SHOULD BE APPROPRIATE TO THE PATIENT'S MEDICAL PROBLEMS AND MEET ASSESSED NUTRIENT REQUIREMENTS AND ACHIEVE THERAPEUTIC OBJECTIVES. The access route should permit the delivery of the patient's nutrient requirements. The safest, most cost effective route should be utilized whenever possible. When adequately function- 222 c) ing, the gas'-ointestinal tract should be prefer- entially usec ‘0 deliver the patient's nutrient re- quirements. - full caloric support is indicated and can only be achieved by central venous nutrition, then this should be done. The optimal mode may change from a venous route to an enteral route as the patient's therapy progresses and efforts should be made to convert to the safest, most cost effective way when appropri- ate. Prescription - SELECTED FEEDING FORMULA- TIONS SHOULD BE APPROPRIATE TO THE DIS- EASE PROCESS AND COMPATIBLE WITH THE ACCESS ROUTE. The formula serection should be under the direc- tion of individuals who either by appropriate education or specialized training or experience are knowledgeable in the delivery of specialized nutrition care and available products. The most cost effective solution compatible with the ac- cess route and the patient's disease process should be utilized whenever possible. Appropri- ate changes in nutrient solutions should be made for patients with impaired major organ function. 4. Implementation a) Establishment of Access - GAINING ACCESS SHOULD BE DONE IN A WAY THAT MINIMIZES RISK TO THE PATIENT. Access devices should be placed by, or their placement directly supervised by a physician, nurse, or a specially trained health care profes- sional who is proficient in their placement. Stan- dard techniques or protocols should be estab- lished for gaining access. The proper placement of central venous catheters should be confirmed radiographically before being used. The proper placement of nasoenteral feeding tubes should be confirmed clinically and/or radiographically before being used. Accurate information regard- ing complications arising from gaining access should be available for institutional review. Placement of access devices should be docu- mented in the patient's medical records to in- clude apparatus placed, insertion site, operator and complications. A protocol should be estab- lished for routine care of the access device and site to prevent complications. b) Product Preparation: 1) THE FEEDING FORMULATION SHOULD BE PREPARED ACCURATELY WITH REFERENCE TO THE PRESCRIBED THERAPY. The formulations used in specialized nutri- tion support are comprised of multiple com- ponents which must be adjusted to meet the patient's individual nutrient needs. A com- pounded formulation must be prepared such that the actual contents are accurate to within five percent of the prescribed dose. PARENTERAL FORMULATIONS SHOULD BE STERILE. The parenteral formulation should be pre- pared in a sterile environment such as a lami- nar air flow hood, by an individual accom- plished in aseptic technique and under the direction of a pharmacist. The preparation of intravenous feeding formulations should be monitored using quality assurance standards including a sterility testing program. For- mulations should be labeled with the expira- tion time and date and be stored at four de- grees Centigrade. Policies should be estab- lished regarding additions to the parenteral feeding formulations made after the initial preparation to insure sterility. ENTERAL FORMULATIONS SHOULD BE PREPARED TO PREVENT CONTAMINATION Enteral formulations should be prepared by trained personnel under professional super- vision in a clean environment, using equip- ment that is cleaned regularly. Personnel re- sponsible for making enteral formulations should wash their hands before preparing the formulations. The product should be la- beled with the expiration time and date and be stored at four degrees Centigrade. Pol- icies should be established regarding addi- tions to the enteral feeding formulations made after the initial preparation to insure cleanliness. 2 ~ 3 ~~ 223 4) COMPONENTS ADDED TO A FEEDING FOR- MULATION SHOULD BE COMPATIBLE WITH ALL INGREDIENTS Additions to feeding formulations should be done by someone who is knowledgeable about physical-chemical compatibilities. 5) THE FEEDING FORMULATION SHOULD BE APPROPRIATELY PACKAGED AND LABELED. Parenteral formulations should be packaged in containers which can assure maintenance of sterility when the formulation is stored and during its administration to patients. En- teral products should be packaged in con- tainers which assure cleanliness and ac- curacy of delivery. Products for administra- tion should be packaged in containers which permit visual inspection of formulations dur- ing preparation, storage and administration. Feeding formulations should be packaged with a label that includes at least the follow- ing: patient's name, composition of the for- mulation, rate of administration, route of ad- ministration and expiration date and time. c) Feeding Formulation Administration: 1) THE FEEDING FORMULATION SHOULD BE ADMINISTERED ACCURATELY IN ACCORD- ANCE WITH THE PRESCRIBED THERAPEUTIC PLAN AND CONSISTENT WITH PATIENT TOL- ERANCE. The label on the feeding formulation should be checked prior to its administration to be certain that the ordered formulation is given to the appropriate patient. The rate of admin- istration should be checked each time a new volume of feeding formulation is started and as needed considering route of administra- tion, feeding formulation, manner of flow rate control and patient's clinical status. Per- sonnel caring for the patient should be famil- iar with signs and symptoms of feeding for- mulation intolerance. PROTOCOLS SHOULD BE ESTABLISHED TO PREVENT INFECTION OF THE PATIENT SEC- ONDARY TO THE FEEDING FORMULATION AND THE EQUIPMENT USED IN ITS ADMIN- ISTRATION. Protocols should be established regarding techniques used to administer enteral and parenteral feeding formulations. Enteral feeding containers should be changed daily. Administration sets for enteral feedings should be changed daily. Parenteral formula- tion administration sets should be changed at least every other day. The sterility of the ad- ministration set should be strictly main- tained. In general, enteral formulations should not be left hanging for longer than twelve hours but hanging time may be more limited for specific products. Parenteral for- mulations should not be left hanging for longer than 24 hours. 2 ~~ SELECT COMMITTEE ON STANDARDS OF PROFESSIONAL PRACTICE 1983 Chairman Steven B. Heymsfield, M.D. Christine Kennedy Caldwell, R.N., M.S.N. Ezra Steiger, M.D. Associate Professor of Medicine Pediatric Nutritionist Staff Surgeon Director - Division of Nutrition Clinical Nurse Specialist Cleveland Clinic Foundation Emory University School of Medicine Nutrition Support Service Cleveland, OH Atlanta, GA Rhode Island Hospital Department of Surgery Douglas Wilmore, M.D. Providence, RI Brigham & Women's Hospital Boston, MA Philip J. Schneider, M.S. Clinical Assistant Professor Associate Director Department of Pharmacy Ohio State University Hospital Anne Marie Hunter, M.S., R.D. Manager - Clinical Nutrition Services St. John's Regional Medical Center John P. Grant, M.D. Associate Professor of Surgery Director - Nutritional Support Service Duke University Medical Center Columbus, OH Joplin, MO Durham, NC Murray H. Seitzer, M.D. Wands Hain Howell, R.D., M.S. Loretta Forisws, R.N., M.S.N. Livingston, NJ Bala Cynwyd, PA Olney, MD President Chairman - Continuing Educstion Director-st-Large - Pharmacists Terry W. Hensle, M.D. Brian . Rowlands, M.D., FR.C.S. Philip J Schneider, M.S. Director of Pediatric Urology Department of Surgery Clinical Assistant Professor Babies Hospital University of Texas Associate Director New York, New York Medical School at Houston Department of Pharmacy Houston, Texas Ohio State University Hospital President-Elect Columbus, Ohio Ezra Steiger, M.D. Mem Staff Surgeon Chairman - bership Cleveland Clinic Foundation Gordon P Buzby, M.D. Sitar st Lage 1d. M.D Cleveland, Ohio Assistant Professor of Surgery - Heymsfield, M.D. Vice-President John M. Daly, M.D. Associate Professor of Surgery Department of Surgery Memorial Sloan-Kettering Cancer Center New York, New York Secretary * Calvin Long, Ph.D. Professor of Surgery and Biochemistry Department of Surgery Medical College of Toledo Toledo, Ohio Treasurer Albert Bothe, Jr, M.D. Associate Director Nutrition Support Service Harvard Medical School New England Deaconess Hospital Boston, Massachusetts immediate Past President William P Steffee, M.D., Ph.D. St. Vincent Charity Hospital Cleveland, Ohio University of Pennsylvania School of Medicine Philadelphia, Pennsylvania Chairman - Publications John P Grant, M.D. Assistant Professor of Surgery Director - Nutritional Support Service Duke University Medical Center Durham, North Carolina Director-st-Large - Dietitisns Joanne E. Wade, M.S., R.D. Assistant Director of Dietetics Director, Dietetic Internship Department of Dietetics New England Deaconess Hospital Boston, Massachusetts Director-at-Large - Nurses *° Kathleen Crocker, R.N., M.S.N. Clinical Nurse Specialist Nutrition Intervention Team St. Vincent Charity Hospital Cleveland, Ohio 224 Associate Professor of Medicine Director Division of Nutrition Emory University School of Medicine Atlanta, GA Director-at-Large Robert L. Ruberg, M.D. Associate Professor of Surgery Ohio State University Hospitals Columbus, Ohio Director-at-Large Jeffrey Askanazi, M.D. Assistant Professor of Anesthesiology Columbia Presbyterian Hospital New York, New York *Formerly Timothy R. Sykes, Pharm.D. Associate Professor Department of Pharmacy Practice University of Tennessee Memphis, Tennessee **Formerly Mary Hoppe, R.N., M.S.N. Clinical Nurse Specialist Loyola University Medical Center Maywood, Illinois Logern AMERICAN SOCIETY FOR PARENTERAL AND ENTERAL NUTRITION STANDARDS FOR NUTRITION SUPPORT Home Patients January 1985 225 A.S.P.E.N. is a professional society whose members are health care professionals—physicians, nurses, dietitians, pharmacists and nutritionists—dedicated to optimum nu- trition support of patients during hospitalization and re- habilitation. A.S.P.E.N.’s diverse professional membership reflects the basic importance of good nutrition to good medical prac- tice and the multidiscipline team approach to sound nu- trition support. A.S.P.E.N. has developed these standards to promote the health and welfare of those patients in need of enteral and parenteral nutrition. The standards represent a con- census of A.S.P.E.N.’'s members as to that minimal level of care which should be given in order to assure sound and efficient enteral and parenteral nutrition. A.S.P.E.N. disclaims any liability to any health care provider, patient or other persons affected by these standards. Copyright, 1985 American Society for Parenteral and Enteral Nutrition 8605 Cameron Street Silver Spring, MD 20901 (301) 587-6315 All rights reserved. Copies of this publication may not be made without the explicit .vritten consent of this Society. 226 Dear Colleague: This publication contains minimal standards of care for home patients to ensure that malnutrition is recognized and effectively and safely treated. The Standards are presented in a format similar to those published for hospitalized patients. Each Standard is usually followed by an explanatory paragraph. Each of these Standards represents minimal acceptable levels of care and should be subscribed to by home health care providers. Specific diagnostic tests, treatment modalities and protocols have not been detailed, but are presented in the broadest, most generic terms so that these can be specified by each patient's home health care provider. These Standards are evolutionary and will be reviewed, updated and amended as needed to keep pace with advancements in medical science and changes in the delivery of health care. The A.S.P.E.N Committee on Standards, a multidisciplinary group, prepared these final standards after receiving comments on an earlier draft from A.S.P.E.N. members. We welcome your comments. Fi Ezra Steiger, M.D. Chairman, Committee on Standards 227 STANDARDS FOR HOME NUTRITION SUPPORT 1. Definitions Enteral nutrition — nutrition provided through or via the gastrointestinal tract oral — enteral nutrition taken through or via the mouth tube — enteral nutrition provided through a tube that delivers nutrients distal to the oral cav- ity Feeding formulation — a ready to administer mix- ture of nutrients Home — a patient's residence excluding chronic care and extended care facilities Malnutrition — any disorder of nutrition, usually a deficiency of nutrient intake or impaired nutrient metabolism Nutrient — protein, carbohydrate, lipids, vitamins, electrolytes, minerals, and water Nutrition — the sum of the processes by which one takes in and utilizes nutrients Nutrition support service — a multidisciplinary group of health care professionals who aid in the provision of specialized nutrition support Parenteral nutrition — nutrients provided by r~ 2ans other than the gastrointestinal tract central — parenteral nutrition delivered thro. jh a large diameter vein, usually the sL_cla- vian or superior vena cava, that en ties directly into the heart peripheral — parenteral nutrition delivered through a smaller vein, usually in the hand or forearm Provider—a physician with expertise in specialized nutrition support who is medically responsible for the patient's home nutrition care Specialized nutrition assessment — a comprehen- sive approach to defining nutrition status that em- ploys clinical and dietary histories, physica! 2x- amination, anthropometric measurements, and laboratory data Specialized nutrition support — provision of :ne- cially formualted and or delivered intravenous or enteral nutrients to prevent or treat malnutrition Vendor — an organization that supplies equipment and products and provides services to the pat.ent requiring specialized home nutrition support L~der the direction of the provider 228 2. Organization a) PROVIDERS OF SPECIALIZED HOME NUTRITION SUPPORT SERVICES SHALL BE CLEARLY DE- FINED. The provider of specialized home nutrition sup- port is the physician who is primarily responsible for the patient's nutrition care and should be as- sisted by a registered nurse, a registered dietitian and a registered pharmacist each having appro- priate education, specialized training and expe- rience in the discipline of specialized home nu- trition support. Specialized home nutrition support services shall be initiated and coordinated by the provider. There shall be a clear understanding among the pro- vider, the vendor and the patient specifying re- sponsibilities of each including; the manner in which services shall be coordinated and evalu- ated: the role of the provider, the vendor and the patient in the establishment and monitoring of patient care; and the mechanism and responsi- bility for payment for services, equipment and products. b) THE PROVIDERS OF SPECIALIZED HOME NU- TRITION SUPPORT SERVICES SHALL BE GUIDED BY WRITTEN POLICIES AND PROCEDURES. There shall be written policies and procedures concerning the scope and provision of special- ized home nutrition support services. These shall be developed by the provider. Concurrence shall be obtained from the medical/surgical, dietetics, nursing, pharmacy and other staff as appropri- ate. These shall be reviewed annually and re- vised as appropriate to reflect optimal standards of care. The policies and procedures shall include but not be limited to the following: 1. The roles, responsibilities and 24 hour avail- ability of provider care. 2. Criteria for patient eligibility and selection should be defined. These criteria should in- clude medical suitability; rehabilitative po- tential; social and economic factors; educa- ble, psychological and emotional factors pertinent to the patient and others who are significantly included in this care. 3. A mechanism for patient monitoring (e.g. fre- quency of follow-up contact, laboratory stud- ies, and physical examinations). 4. Availability of consultative medical services and services of other professionals such as psychologists and social workers and non- professionals, such as patient support groups as appropriate. 5. Reimbursement mechanisms for services, equipment and supplies. 6. Acquisition of enteral or intravenous nu- trients, equipment and supplies for home de- livery. 7. Educational materials for patient and family training and use at home. 229 c) 8. Preparation and or storage of enteral for- mulas orintravenous nutrient solutions in the home; techniques for the administration of enteral formulas or intravenous nutrient so- lutions, feeding schedules, care of feeding tubes for patients receiving enteral formulas, and care of catheters and tubing for patients receiving intravenous nutrition. 9. Prevention and managemerm of complica- tions in the home, and emergency consul- tation with professional staff. 10. Mechanisms for quality assurance. SPECIALIZED HOME NUTRITION SUPPORT SERVICES SHALL BE DOCUMENTED Medical records shall be maintained for every patient receiving specialized home nutrition sup- port services and shall include: 1. Designation of physician having primary re- sponsibility for the patient's home nutrition care. 2. All pertinent patient diagnoses and prog- noses including long and short-term objec- tives of treatment. 3. Initial and follow-up physical examinations. Scope and results of training and retraining. 5. Plan of care including types and frequency of services to be provided, functional limitations of the patient, activities permitted, psycho- social needs of the patient, suitability and adaptabil.’. of the patient's residence for the provision c* home nutrition services and name of other i~ fividual(s) who will assist in the care of th= >atient if required. » 6. Composit:-n, rate, and mode of administra- tion of feecing formulation and all medica- tions. 7. Signed and dated progress notes for each home visit and clinic visit and telephone con- tact. These progress notes should include re- sponse to therapeutic regimen including re- sults of serial monitoring, complications and revisions in the therapeutic regimen. 8. A summary statement at termination of nu- trition theracy which includes results of ther- apy, comp!:cations, outcome and disposition of patient. d) SPECIALIZED HOME NUTRITION SUPPORT RENDERED SHALL BE REVIEWED AND EVALU- ATED REGULARLY TO DETERMINE OVERALL EFFECTIVENESS AND SAFETY. Evaluation of the patient's need for and response to specialized home nutrition support shall be the responsibuity of the providers. The review and evaluation shall be performed and docu- mented at least every 90 days. Deficiencies found in the review should be corrected by modifying services, protocols, procedures and educational programs. 3. Patient Selection a) Indications and Contraindications for Special- ~ ized Home Nutrition Support — PATIENTS SHALL BE CAREFULLY EVALUATED PRIOR TO SELEC- TION FOR SPECIALIZED HOME NUTRITION SUP- PORT Candidates for specialized home nutrition sup- port are those patients unable to meet nutrient requirements by oral enteral nutrition. In addi- tion, the patient's clinical status and quality of life must be such that treatment at home would be appropriate. Specialized nutrition support being given at home should be designed to achieve the nutrition objectives. The patient's home envi- ronment should be appropriate for the safe use of home nutrition support. b) Determination of Nutrition Requirements — AN EVALUATION OF THE NUTRIENT NEEDS OF THE PATIENT SHALL BE PERFORMED PRIOR TO THE INITIATION OF SPECIALIZED NUTRITION SUP- PORT. Nutrition requirements will be a function of the special disease state, the patient's nutrition sta- tus, growth requirements and the duration of anticipated intake. The type and amount of nu- trition needed by the patient shall be determined. 4. Therapeutic Plan Objective — THE OBJECTIVE(S) OF SPECIAL- IZED NUTRITION SUPPORT SHALL BE DETER- MINED AND DOCUMENTED. The objectives of home nutrition support should address the short and long term needs of the home patient. Short term needs might include resolution of disease progression, wound heal- ing, progression to enteral support and recovery from nutrition depletion. Long term needs in- clude maintenance of normal nutrition and re- habilitation to physical and social independence. These objectives should be developed prior to the institution of nutrition support. b) Mode — THE ROUTE(S) SELECTED TO PROVIDE SPECIALIZED NUTRITION SUPPORT SHALL BE APPROPRIATE TO MEET ASSESSED NUTRIENT REQUIREMENTS AND ACHIEVE THERAPEUTIC GOALS AND OBJECTIVES. The safest, most cost effective route which meets c) the patient's needs should be utilized. The gas- trointestinal tract should be used whenever pos- sible. It should be recognized that as the patient's therapy progresses the optimal mode of feeding may change and may, at times, utilize both en- teral and parenteral feedings. Prescription — THE SELECTED FEEDING FOR- MULATIONS SHALL BE APPROPRIATE TO THE DISEASE PROCESS, COMPATIBLE WITH THE ACCESS ROUTE, AND MEET NUTRIENT NEEDS. The formulation selection and modification should be under the direction of the provider and should consider available products and their costs and knowledge of the patient and of his/her specific clinical disease processes. The most cost effec- tive therapy compatible with the access route should be utilized. The patient should be given a prescription copy of the feeding formulation and other mec zations. 5. Implementation a) Establishment of Access THE ACCESS ROUTE(S) SHALL BE APPROPRI- ATE FOR HOME USE. The type of device used should be placed, rec- ommended or approved by the provider and doc- umented in the patient's medical records. Access should be placed by, or their placement directly supervised by, a physician, nurse or specially trained health care professional who is proficient in their placement. Selected patients or respon- sible others who have been trained may insert enteral feeding tubes. Standard techniques or protocols should be established for gaining ac- cess. The access selected must be appropriate for the type of therapy to be delivered and should be as simple as possible for home care and use, offer appropriate durability for the anticipated duration of therapy, and minimize the potential for occurrence of complications. Y) Patient Education 1. THEPATIENT AND OR RESPONSIBLE OTHER SHALL RECEIVE EDUCATION AND DEMON- STRATE COMPETENCE IN FEEDING FOR- 230 MULATION PREPARATION AND ADMINIS- TRATION. Patients should be educated in the following areas: knowledge of appropriate formulation components, determination of proper dos- ages, aseptic (parenteral) or clean (enteral) technique, manipulation and maintenance of equipment and infusion method. Patients re- ceiving enteral nutrition must be instructed in clean techniques of feeding formulation preparation, storage and infusion. Closed containers should be used for feeding for- .mulation storage and administration. In gen- eral, enteral formulations should not be left hanging for longer than 12 hours but hanging time may be more limited for specific prod- ucts. Admixed parenteral formulations should not be left at room temperature for longer than 24 hours. Patients receiving parenteral nutrition should be taught to check the integ- rity of the feeding formulation containers, to inspect for abnormalities in appearance, proper storage of the fzeding formulation, and fil- tering techniGues. if used. For cyclic enteral and parenteral infusion methods, specific in- struction should be given. Control of the in- fusion rate to maintain an accurate flow rate requires an infusion control device which the patient or responsible other must be taught to use. 2. THEPATIENTAND OR RESPONSIBLE OTHER SHALL RECEIVE EDUCATION AND DEMON- STRATE COMPETENCE IN ACCESS ROUTE CARE. The patient receiving parenteral infusions must be trained in aseptic technique of dressing care, connecting and disconnecting the intra- venous tubing to the catheter and post in- fusion flushing to prevent catheter occlusion. The enterally fed patient must be trained in clean techniques for handling the tube, main- taining the access site and flushing the tube to maintain patency. 3. THE PATIENT AND/OR RESPONSIBLE OTHER SHALL RECEIVE EDUCATION AND DEMON- STRATE COMPETENCE IN THE RECOGNI: TION AND APPROPRIATE RESPONSE TO COMPLICATIONS AND EQUIPMENT MAIN- TENANCE AND MALFUNCTIONS. Patients must be taught to recognize and re- spond to potential complications. However, providers are still responsible for the care of home enteral and parenteral nutrition pa- tients and must be available around the clock to advise and.or intervene if potentially se- rious complications arise. Common, impor- tant clinical complications” include sepsis, glucose intolerance, fluid and electrolyte im- balance, catheter or tube occlusion and breakage and equipment malfunction. 4. EDUCATIONAL MATERIALS SHOULD BE PROVIDED TO THE PATIENT OR RESPON- SIBLE OTHERS. 5. PATIENT EDUCATION SHALL INCLUDE PE- RIODIC REASSESSMENT AND RETRAINING AS NEEDED. 6. Patient Monitoring a) THE PATIENT SHALL BE MONITORED FOR THERAPEUTIC AND ADVERSE EFFECTS AND CLINICAL CHANGES THAT MAY INFLUENCE SPECIALIZED NUTRITION SUPPORT. Protocols should be developed for periodic re- view of the patient's clinical and biochemical sta- tus. Routine monitoring should include nutrient intake; review of current medications; signs of intolerance to therapy; weight changes; bio- chemical, hematologic and other pertinent data including clinical signs of nutrient deficiencies and excesses as well as adjustment to therapy, changes in lifestyle, psychosocial problems and changes in the home environment. Assessment of the patient's major organ functions should be made periodically. 7. Termination of Therapy a) THE PATIENT SHALL DEMONSTRATE THE ABIL- ITY TO INGEST AND ABSORB ADEQUATE NU- TRIENTS BY THE ENTERAL ROUTE PRIOR TO DISCONTINUING PARENTERAL NUTRITION. Parenteral nutrition should not be discontinued by the provider or vendor until estimated nutrient requirements are tolerated by the gastrointes- tinal tract. Parenteral nutrient formulations should be decreased over time while enteral feedings are increased. Documentation of ingestion and absorption of adequate nutrients via the gas- trointestinal tract should be made in the medical records. b) ADEQUATE ORAL ENTERAL NUTRITION SHALL BE DEMONSTRATED PRIOR TO DISCONTINU- ANCE OF ENTERAL NUTRITION. c) SPECIALIZED NUTRITION SUPPORT SHALL BE DISCONTINUED WHEN COMPLICATIONS SO IN- DICATE. 231 Complicatiors which are uncontrollable and or life-threatening require immediate assessment of the patient by the provider physician, and if necessary, immediate discontinuation of the specialized nutrition support therapy. Treating emergent life-threatening conditions takes prec- edence over the delivery-of specialized nutrition support. Specialized nutrition support should be reinstituted following the correction of such complications as indicated. d) SPECIALIZED NUTRITION SUPPORT SHALL BE TERMINATED WHEN THE PATIENT NO LONGER BENEFITS FROM THE THERAPY. Specialized nutrition supportis used in the home setting to prevent starvation and promote an op- timum quality of life. When in the course of a patient's disease these objectives can no longer be met, the decision to discontinue specialized nutrition support must be made jointly by the patient, family and provider. ~hairman Ezra Steiger, MD. Staff Surgeon Cleveland Clinic Foundation Cleveland, OH Douglas Wilmore, M.D. Brigham & Women's Hospital Boston, MA John P. Grant, M.D. Associate Professor of Surgery Director—Nutritional Support Service Duke University Medical Center Durham, NC Steven B. Heymsfield, M.D. Associate Professor of Medicine Director, Division of Nutrition Emory University School of Medicine Atlanta, GA President® Ezra Steiger, M.D. - Staff Surgeon Cleveland Clinic Foundation Cleveland, OH President-Elect® John M. Daly, M.D. + Associate Professor of Surgery Department of Surgery Memorial Sloan-Kettering Cancer Center New York, NY Vice-President® John P. Grant, M.D. + Assistant Professor of Surgery Director-Nutrition Support Service Duke University Medical Center Durham, NC Secretary* Calvin Long, Ph.D. Baptist Medical Center Birmingham, AL Treasurer® ‘Ibert Bothe, Jr, MD. ~ ssociate Director Nutrition Support Service Harvard Medical School New England Deaconess Hospital Boston, MA COMMITTEE ON STANDARDS 1984 Philip J. Schneider, M.S. Clinical Assistant Professor and Associate Director Department of Pharmacy Ohio State University Hospitals Columbus, OH Christine Kennedy Caldwell, R.N., M.S.N. Pediatric Nutritionist-Clinical Nurse Spec. Nutrition Support Service Rhode Island Hospital Department of Surgery Providence, RI Anne Marie Hunter, M.S., R.D. Director Clinical Nutrition Services St. John's Regional Medical Center Joplin, MO Loretta Forlaw, R.N., M.S.N., A.N.C. (Walter Reed Army Medical Center) (Washington, D.C.) Olney, MD BOARD OF DIRECTORS, 1984 Immediate Past President Terry W. Hensle, M.D. ~ Director of Pediatric Urology Babies Hospital New York, NY Chairman—Continuing Education Brian J. Rowlands, M.O., F.R.C.S. Department of Surgery University of Texas Medical School of Houston Houston, TX Chairman—Membership Gordon P. Buzby, M.D. Assistant Professor of Surgery Univ. of Pennsylvania School of Medicine Philadelphia, Pa Chairman—Publications Howard Silberman, M.D. Associate Professor of Surgery Department of Surgery USC Los Angeles, CA Director-at-Large—Dietitians Emma L. Catald:-Betcher, R.D.. M.S. ~ Emerson, NJ 232 Murray H. Seltzer, M.D. Director of Nutrition Support Service St. Barnabas Medical Center Livingston, NJ Wanda Hain-Howell Tucson, AZ Lyn Howard, M.D. Executive Director Oley Foundation Albany Medical College Albany, NY Richard Baptista, M.S., R.Ph. Clinical Pharmacist Nutrition Support Services New England Deaconess Hospital Boston, Massachusetts Staff Deobrah Parham, RN Rockville, MD Director-at-Large—Nurses Kathleen Crocker, R.N., M.S.N. Clinical Nurse Specialist Nutrition Intervention Team St Vincent Charity Hospital Cleveland, OH Director-at-Large—Pharmacists Philip J. Schneider, M.S. + Clinical Assistant Professor Associate Director Department of Pharmacy Ohio State University Hospitals Columbus, OH Director-at-Large Robert L. Ruberg, M.D. Associate Professor of Surgery Ohio State University of Hospitals Columbus, OH Director-at-Large Marvin Ament, M.D. Department of Pediatrics UCLA Center Los Angeles, CA Director-at-Large C. Richard Fleming, MD. Mayo Clinic Rochester, MN Logern AMERICAN SOCIETY FOR PARENTERAL AND ENTERAL NUTRITION STANDARDS OF PRACTICE NUTRITION SUPPORT NURSING January 1985 233 A.S.P.E.N is a professional society whose members are health care professionals—physicians, nurses, dietitians, pharmacists and nutritionists dedicated to optimum nu- trition support of patients during hospitalization and re- habilitation. A.S.P.E.N.’s diverse professional membership reflects the basic importance of good nutrition to good medical prac- tice and the multidiscipline team approach to sound nu- trition support. These Standards of Practice for Nutrition Support Nursing should be utilized in conjunction with the following A.S.P.E.N. publications: 1. Standards For Nutrition Support, Hospitalized Patients 2. Standards For Nutrition Support, Home Patients The above publications contain definitions that are applicable to this document. A.S.P.E.N. disclaims any liability to any health care prov- ider, patient or other persons affected by these standards. Copyright 1985 American Society for Parenteral and Enteral Nutrition 8605 Cameron Street, Suite 500 Silver Spring, Maryland 20910 (301) 587-6315 All rights reserved. Copies of this publication may not be made without the explicit written consent of this Society. 234 As the clinical practice of specialized nutrition support has developed over the past decade, nutrition support nursing has also evolved into a recognized nursing specialty. The Ad Hoc Committee for Nursing Standards, a subcommittee of the Nurses’ Committee of A.S.P.E.N., has developed standards that to the best of our knowledge reflect the consensus of nurses in specialized nutrition support nursing practice. As the ultimate goal is the provision of quality patient care, the enclosed standards characterize, measure and provide guidance for the nutrition support nurse who seeks to achieve excellence in patient care. Nursing standards specific to the delivery of parenterel and enteral nutrition support are currently under development. The Nurses’ Committee would like to thank those members of A.S.P.E.N. who participated in the development, revision and review of these standards. We would also like to thank the Select Committee on Standards of Professional Practice, and the Board of Directors. Their continued support of nutrition support nursing practice is greatly appreciated. Loretta Forlaw, R.N., M.S.N., Major(ANC) Chairperson, Ad Hoc Committee For Nursing Standards Kathleen S. Crocker, R.N.,, M.S.N. Director-At-Large—Nurses, and Chairperson, Nurses’ Committee 235 NUTRITION SUPPORT NURSING PRACTICE is the care of individuals with potential or known nutri- tional alterations. Nurses who engage in specialized nutrition support nursing utilize specific expertise which enhances the maintenance and. or restoration of an individual's nutritional health. Physiological, metabolic and behavioral principles, as well as tech- nological advances are considered when interven- tions that utilize the nursing process are planned. The nursing process includes ongoing assessment and planning of care, the provision of care, and an evaluation of the individual's response to the care delivered. NUTRITION SUPPORT NURSES usually function as equal members of a multidisciplinary nutrition support service or committee, which coordinates the provision of specialized nutrition support. Since the care delivered by other health professionals in- terfaces with nutrition support nursing, common practice areas are approached from a collegial point of view. THE SCOPE OF NUTRITION SUPPORT NURSING PRACTICE encompasses all nursing activities which promote optimal nutritional health within the con- text of the individual's life goals. Nursing activities are based on scientific principles. Nursing actions are revised when changes occur in the individual's situation, and/or when research data can be trans- lated into new or different clinical practices. This scope of practice includes but is not limited to direct patient care, consultation with nurses and other health professionals in different clinical settings, ed- ucation of patients and staff, research, as well as administrative duties. THE GOAL OF NUTRITION SUPPORT NURSING is to utilize nursing expertise which optimizes the maintenance or restoration of the individual's nu- tritional health. Identification of measurable out- comes requires data collection and frequent as- sessment. The following outcomes are specific to the individual who requires nutrition support nurs- ing care. ® The individual and/or significant other demon- strates a knowledge of nutritional requirements and measures to meet these requirements. ® The individual and/or significant other utilizes nu- trition support methods which maintain or im- prove nutritional status. ® The individual demonstrates the desired re- sponse(s) to nutrition support intervention. ® The individual suffers no preventable complica- tions from nutrition support interventions or re- lated nursing care. 236 I. Assessment of Nutritional Status A. Standard The individual, who is or may become mal- nourished, is evaluated for adequacy of nutri- tional status by the appropriate health care professional. B. Rationale 1. Nutritional status affects the individual's abil- ity to respond to therapeutic measures. Nursing interventions will be influenced by the individual's nutritional status. Nutritional deficiencies may be noted during physical examination and as a result of bio- chemical evaluation. C. Outcome Criteria The medical record documents: 1. a complete nutritional assessment that in- corporates the findings of a physician, nurse, dietitian and pharmacist as appropriate. . the individual's actual and usual weight for height in relation to the ideal weight for height. . a nutritional history, if the patient's weight for height is above or below ideal weight for height. The nutritional history is generally ob- tained by a registered dietitian. The nurse should incorporate information from the nu- tritional history into the nursing plan of care. . an estimation of the nutritional needs of the patient. The estimation of nutritional needs is generally a function of a registered dieti- tian. The nurse should incorporate this in- formation into the nursing plan of care. Il. Comprehension of Diagnosis and Therapy . Standard The individual and/or significant other under- stands the nutritional diagnosis and the therapy plan for nutritional intervention. B. Rationale 1. The individual and/or significant other who understands the disease process will be more independent in making decisions and will better adapt to alterations of nutritional sta- tus. . The individual and/or significant other who understands the disease process will maxi- mize wellness behaviors. Ill. Delivery of Parenteral A. Standard The individual receives the physician prescribed feeding formulation using the appropriate de- livery system. B. Rationale 1. Maintenance or restoration of the individual's nutritional status is related to the safe and accurate delivery of the feeding formulation. The patient should not suffer any preventable complications related to the preparation or delivery of the feeding formulation. C. Outcome Criteria The individual and/or significant other demon- strates: 1. 2. an understanding of the nutritional diagnosis. a willingness to accept nutritional interven- tian: a knowledge of the limitations and risks that result from the nutritional diagnosis. Realistic plans of care are established and appropriate behaviors are demonstrated. motor skills necessary to carry out the ther- apeutic plan. the ability ta utilize family and/or community resources. or Enteral Feeding Formulations 237 C. Outcome Criteria The medical record documents: 1. that the individual received the feeding for- mulation as prescribed by the physician. . that the most appropriate system was used to deliver the feeding formulation. that appropriate nursing measures were used to prevent or correct any potential or actual side effects related to the feeding information or its administration. IV. Evaluation of Nutrient Tolerance A. Standard The individual is monitored by a protocol which includes physical assessment, biochemical eval- uation and urine analyses to ensure an appro- priate response to the administered nutrients and its delivery system. . Rationale 1. The type or amount of nutrients administered often need adjusting during the course of therapy based on the individual's response to therapy. 2. The individual who receives specialized nu- trition support may suffer adverse reactions. 3. Early detection of adverse reactions allows corrective action to be taken to minimize mor- tality and morbidity. . Outcome Criteria The medical record documents: 1. that appropriate patient monitoring and care was provided to minimize complications. 2. occurrence and severity of complications, corrective measures instituted, as well as the result of the corrective measures. V. Maximal Self Care Maintenance . Standard The individual and/or significant other maintains the highest level of independent care that is both safe and appropriate. B. Rationale 1. The individual and/or significant other who has the knowledge, understanding and ability necessary for independent care, can attain 238 the highest level of independent manage- ment. 2. Independent care will maximize the patient's self esteem and can reduce the need for and the cost of professional care. . Outcome Criteria The medical record documents that the individ- ual and/or significant other identified and par- ticipated in the plan for independent care. AD HOC COMMITTEE FOR NURSING STANDARDS Loretta Forlaw, R.N., M.S.N., Major (ANC). Wash- ington, D.C. Chairperson Kathleen S. Crocker, R.N., M.S.N., Cleveland, OH 1982-1984 NY Catherine Muttart, R.N., M.S.N., New Hampstead, Bernadette Slocum, R.N., M.S., Morris Plains, NJ A.S.P.E.N. NURSES’ COMMITTEE Kathleen S. Crocker, R.N., M.S.N., Chairperson Clinical Nurse Specialist Saint Vincent Charity Hospital and Health Center Cleveland, OH Genie (Courtney) Moore, R.N., R.D., M.S.N. Clinical Nurse Specialist, Assistant Professor of Nursing Vanderbilt University, Nashville, TN Lynne M. Murphy, R.N., B.S.N. Nurse Clinician 1984 Julie Lundvick, R.N., B.S.N. Nurse Clinician Loyola University Medical Center, Maywood, IL Christine Kennedy-Caidwell, R.N., M.S.N. Pediatric Nutritionist/Clinical Nurse Specialist Salve Regina College School of Nursing, Newport, RI Susan Curtas, R.N., M.S.N. Clinical Nurse Specialist Veterans Administration Hospital, Durham, NC Veterans Administration Hospital, Washington, D.C. Jane M. Lyons, R.N., M.S. Clinician Il/Instructor University of Rochester, Rochester, NY Jane Georges, R.N., M.S.N. Instructor, School of Nursing San Diego University, San Diego, CA Amy Andolina, R.N., B.S.N., Nurse Clinician Stanford University Medical Center, Stanford, CA COMMITTEE ON STANDARDS Chairman Ezra Steiger, M.D. Staff Surgeon Cleveland Clinic Foundation Cleveland, OH Douglas Wilmore, M.D. Brigham & Women's Hospital Boston, MA John P. Grant, M.D. Associate Professor of Surgery Director—Nutritional Support Service Duke University Medical Center Durham, NC Steven B. Heymsfield, M.D. Associate Professor of Medicine Director, Division of Nutrition Emory University School of Medicine Atlanta, GA 1984 Philip J. Schneider, M.S. Clinical Assistant Professor and Associate Director Department of Pharmacy Ohio State University Hospitals Columbus, OH Christine Kennedy Caldwell, R.N., M.S.N. Pediatric Nutritionist-Clinical Nurse Spec. Nutrition Support Service Rhode Island Hospital Department of Surgery Providence, RI Anne Marie Hunter, M.S, R.D. Director Clinical Nutrition Services St. John’s Regional Medical Center Joplin, MO Loretta Forlaw, R.N., M.S.N., A.N.C. (Walter Reed Army Medical Center) (Washington, D.C.) Olney, MD 239 Murray H. Seltzer, M.D. Director of Nutrition Support Service St. Barnabas Medical Center Livingston, NJ Wanda Hain-Howell Tucson, AZ Lyn Howard, M.D. Executive Director Oley Foundation Albany Medical College Albany, NY Richard Baptista, M.S., R.Ph. Clinical Pharmacist Nutrition Support Services New England Deaconess Hospital Boston, Massachusetts Staff Deobrah Parham, RN Rockville, MD BOARD OF DIRECTORS President® Ezra Steiger, M.D. + Staff Surgeon Cleveland Clinic Foundation Cleveland, OH President-Elect® John M. Daly, M.D. ~ Associate Professor of Surgery Department of Surgery Memorial Sloan-Kettering Cancer Center New York, NY Vice-President® John P. Grant, M.D. + Assistant Professor of Surgery Director-Nutrition Support Service Duke University Medical Center Durham, NC Secretary® Calvin Long, Ph.D. Baptist Medical Center Birmingham, AL Treasurer® Albert Bothe, Jr., M.D. + Associate Director Nutrition Support Service Harvard Medical School New England Deaconess Hospital Boston, MA 1984 Immediate Past President Terry W. Hensle, M.D. - Director of Pediatric Urology Babies Hospital New York, NY Chairman—Continuing Education Brian J. Rowlands, M.D., F.R.C.S. Department of Surgery University of Texas Medical School of Houston Houston, TX Chairman—Membership Gordon P. Buzby, M.D. Assistant Professor of Surgery Univ. of Pennsylvania School of Medicine Philadelphia, Pa Chairman—Publications Howard Silberman, M.D. Associate Professor of Surgery Department of Surgery usc Los Angeles, CA Director-at-Large—Dietitians Emma L. Cataldi-Betcher, R.D., M.S. + Emerson, NJ 240 Director-at-Large—Nurses Kathleen Crocker, R.N., M.S.N. Clinical Nurse Specialist Nutrition Intervention Team St Vincent Charity Hospital Cleveland, OH Director-at-Large—Pharmacists Philip J. Schneider, M.S. - Clinical Assistant Professor Associate Director Department of Pharmacy Ohio State University Hospitals Columbus, OH Director-at-Large Robert L. Ruberg, M.D. Associate Professor of Surgery Ohio State University of Hospitals Columbus, OH Director-at-Large Marvin Ament, M.D. Department of Pediatrics UCLA Center Los Angeles, CA Director-at-Large C. Richard Fleming, M.D. Mayo Clinic Rochester, MN STANDARDS OF PRACTICE: Nutritional Support Dietitian American Society for Parenteral and Enteral Nutrition INTRODUCTORY NOTE The Standards of Practice for Nutritional Support Dietitians should be utilized in conjunction with the following A.S.P.E.N. publications: Standards for Nutrition Support, Hospitalized Pa- tients, 1984 Standards for Nutrition Support, Home Patients, 1985 Standards of Practice, Nutrition Support Nursing, 1985 These Standards of Practice for Nutritional Sup- port Dietitians should be utilized in conjunction with the following American Dietetic Association publi- cations: Standards of Practice for the Profession of Dietet- ics (A.D.A. Council on Practice, The American Dietetic Association, February 1984) These standards are provided for the general guid- ance of health professionals. Their application in any individual case should be determined by the best judgment of the professional. SCOPE OF PRACTICE Background It is widely accepted that optimum nutrition plays an important role in good health. Historically, the dietitian has been the health care professional charged with the task of ensuring that diets are adequate for patients with various disease states. The advent and sophistication of specialized nutritional support—enteral and parenteral therapies—have al- Reprint Requests: For a single copy, please send 9” x 12” self- addressed envelope with 39¢ postage affixed to A.S.P.E.N., 8603 Cameron Street, Suite 500, Silver Spring, MD 20910. 0884-5336/86/0104-0216%02.00/0 NUTRITION IN CLINICAL PRACTICE Copyright © 1986 by the American Society for Parenteral and Enteral Nutrition lowed the health care professional to ensure that even patients who are unable to eat will receive adequate nutrition. As the importance of specialized nutritional support has become recognized and tech- niques for the delivery of enteral and parenteral therapies have evolved, nutritional support has be- come an established area of dietetic practice. Role The Nutritional Support Dietitian, in conjunction with other health care professionals, including a phy- sician director, registered nurse, and registered pharmacist, shall participate in the provision of spe- cialized nutritional support. If a formal nutritional support service has not been established, the Nutri- tional Support Dietitian shall function, along with other appropriate health care professionals, as a member of the nutritional support committee or subcommittee. The Nutritional Support Dietitian works specifi- cally with enteral, parenteral, modular, and transi- tional nutritional therapies. The Nutritional Support Dietitian is a registered dietitian with clinical exper- tise in specialized nutritional support obtained through education and specialized training or expe- rience in this field. With this, the role of the dietitian should include ongoing nutritional assessment and planning, as well as monitoring and documentation of the response of the patient to specialized nutri- tional support. Other activities include facilitating both a smooth transition to an oral diet and the termination of enteral and parenteral therapies when appropriate. Last, the Nutritional Support Dietitian educates patients, families, and other health care professionals concerning principles of nutritional therapy. Goals Utilizing current knowledge of nutritional therapy and scientific theory, the Nutritional Support Dieti- 241 NUTRITION SUPPORT DIETITIAN STANDARDS tian strives to provide optimal nutritional support for all patients. Specific goals include: 1. Identification of patients at nutritional risk 2. Provision of appropriate nutritional therapy to such patients 3. Performance of periodic nutritional assessments of patients undergoing nutritional support 4. Assurance of smooth and adequate transitional feedings 5. Documentation of nutritional care plans The Nutritional Support Dietitian actively pursues new knowledge in nutritional support. When appro- priate, the Nutritional Support Dietitian assists in and/or initiates nutritional support and is an active participant in local, regional, and national educa- tional programs. Through these endeavors, the Nu- tritional Support Dietitian shares expertise, knowl- edge, and investigational findings with other health care professionals. DEFINITIONS Diet A prescribed allowance of nutrients provided via the oral route. Enteral Nutrition Nutrition provided through or via the gastrointes- tinal tract. Oral: enteral nutrition taken through or via the mouth Tube: enteral nutrition provided through a tube that delivers nutrients distal to the oral cavity Feeding Formulation A ready-to-administer mixture of nutrients. Malnutrition Any disorder of nutrition, either an excess or de- ficiency of nutrient intake, or impaired nutrient me- tabolism. Modular Enteral Feeding The combination of sources of nutrients so that an existing formula is modified or a new formula is created. Nutrient Protein, carbohydrate, lipids, vitamins, electro- lytes, minerals, and water. Nutritional Support Service A multidisciplinary group of health care profes- sionals who aid in the provision of specialized nutri- tion support. Parenteral Nutrition Nutrients provided by means other than the gas- trointestinal tract Central: ~~ parenteral nutrition delivered through a large diameter vein, usually the subclavian or superior vena cava, that empties directly into the heart Peripheral: parenteral nutrition delivered through a smaller vein, usually in the hand or forearm Specialized Nutritional Assessment A comprehensive approach to defining nutrition status that employs clinical and dietary histories, physical examination, anthropometric measure- ments, and laboratory data. Specialized Nutritional Support Provision of specially formulated and/or delivered parenteral or enteral nutrients to prevent or treat malnutrition. Transitional Feeding Progression from one mode of feeding to another, while attempting to maintain/achieve estimated hu- trient requirements. ASSESSMENT Standard A: Nutritional Status The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall establish criteria for the identification of a pa- tient who either is, or may become, malnourished. Rationale Nutritional assessment can assist in the identifica- tion of patients who are or may become malnour- ished. Prevention or correction of malnutrition can contribute to a more positive outcome from medical or surgical intervention. Criteria Evaluation and/or documentation of nutritional status in the medical record which may include the following: 1. History of nutrient intake 2. Weight history and growth history (when appro- priate) Anthropometrics Age Sex Clinical signs of malnutrition Biochemical indices of nutritional status and urine determinations Mechanical, physiological, or psychological prob- Ie ke 0 ® 242 ASPEN. RDS lems which interfere with ingestion, digestion, absorption, or metabolism of nutrients Standard B: Guidelines for the Use of Specialized Nutritional Support The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall participate in the establishment and modifica- tion of guidelines for the use of specialized nutri- tional support. Rationale Well-defined guidelines should prevent the under- or over-utilization of specialized nutritional support. Criteria Documentation of: 1. Formalized guidelines for the use of specialized nutritional support 2. Participation in the establishment and modifica- tion of these guidelines 3. Willingness of the patient, family, or significant other to agree with the therapeutic plan and/or ability to cooperate in the therapy when appro- priate Standard C: Determination of Nutrient Requirements The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall determine the nutrient requirements of the patient prior to the initiation of specialized nutri- tional support. Rationale Determination of nutrient requirements is often complex and may require specialized multidiscipli- nary expertise. Insufficient nutrient provision results in less than optimum repletion or maintenance of nutritional status. Over- and underfeeding can affect nutrient requirements. Overfeeding provides no ad- ditional therapeutic benefit, can result in complica- tions, and is not cost-effective. Criteria Documentation of: 1. Nutrient requirements based on calculated or measured needs 2. Modification of nutrient needs of the patient based on the specific disease state, the proposed medical/surgical therapy, the nutritional status, the duration of anticipated inadequate intake THERAPEUTIC PLAN Standard A: Objective The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall determine and document the rationale and ob- jective(s) for specialized nutritional support. Rationale Clearly formulated rationale and objectives should improve the likelihood that therapy will meet the specific nutrient needs of the patient and prevent misuse. Criteria Documentation of: 1. Proposed immediate, intermediate, and end out- comes of specialized nutritional support 2. Anticipated duration of time receiving special- ized nutritional support 3. Discharge planning and/or home training when appropriate Standard B: Mode The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall provide input into the selection of: the appro- priate route(s) by which nutritional support is admin- istered. Rationale The access route(s) selected to provide nutritional support should be appropriate to the medical prob- lems of the patient and permit delivery of his nutrient requirements. The safest, most cost-effective route should be utilized whenever possible. When ade- quately functioning, the gastrointestinal tract should be utilized. If adequate nutritional support can be achieved only by central venous nutrition, then cen- tral venous nutrition should be implemented. The optimal mode may change from a venous route to an enteral route as the clinical condition of the patient progresses. Criteria Documentation that the nutritional support dieti- tian provides input into the selection of the route(s) for nutritional support based upon: Medical condition of the patient Assessed nutrient requirements Therapeutic objectives Safety Cost effectiveness Aol ol a Standard C: Diets and Feeding Formulations The nutritional support dietitian, in conjunction with other health care professionals, shall participate in the identification and selection of diet and feeding formulations (enteral and parenteral) appropriate to the disease process and compatible with the access route. 243 NUTRITION SUPPORT DIETITIAN STANDARDS Rationale The diets and feeding formulations (enteral and parenteral) selected should be appropriate to the disease process and compatible with the access route. Criteria Assistance in determination and documentation of: 1. The ability of the patient to tolerate various modes of feeding 2. Adequacy of intake 3. Evaluation factors which may affect nutrient in- take. digestion. absorption, and assimilation 4. Calculated nutrient requirements A nutritional care plan. with recommendations for specific nutrition intervention (supplements, diet modification, diet instruction, and enteral, modular and parenteral feeding) Ut IMPLEMENTATION Standard A: Product Preparation The nutritional support dietitian, in conjunction with other appropriate health care professionals, shall verify that enteral formulations are prepared according to established guidelines for safe and ef- fective nutritional therapy. Rationale Enteral feeding formulations should be prepared accurately. with attention to the feeding prescrip- tion. the prevention of contamination, the compati- bility of ingredients, and the appropriateness of packaging and labeling Criteria Establishment and/or verification of: 1. Adequate written guidelines for the preparation of enteral feeding formulas Dietary quality assurance monitoring to ensure that guidelines are being met 3. Documentation in the medical record that the product meets the nutrient needs of the patient 4. Written policies specifying that the actual con- tents of compounded formulations are accurate [I] Standard B: Diet and Feeding Formulation Administration The nutritional support dietitian, in conjunction with other appropriate health care professionals. shall verify that specialized nutritional support is administered. in accordance with the prescribed therapeutic plan. and consistent with tolerance of “ie patient, after an appropriate access has been established and verified. Rationale Accurate administration of diet. enteral. and par- enteral teeding formulations promotes sate and of- tective nutritional support. Criteria Verification and/or documentation that the appro- priate health care professional: I. Has verified that enteral feeding tubes are properly placed prior to instituting specialized nutritional support Routinely checks the labels of feeding formula- tions of patients. and reports discrepancies to the appropriate personnel 3. Cooperates with other disciplines to minimize errors in formula administration 4. Maintains current knowledge of feeding formu- lations and feeding access methods . Recommends the rate of administration and con- centration for initiation of feeding formulation 6. Recommends the rate of administration and con- centration during progression of the feeding for- mulation to levels meeting the nutrient needs of the patient r. Monitors and records nutrient intake during the administration of the feeding formulations 8. Recognizes signi. and symptoms of feeding for- mulation intoler ice 9. Recommends n: lification of the feeding formu- lation to minimi. - intolerance 1 Ut Standard C: Quality Assurance for Implementing Nutritional Support The nutritional support dietitian. in conjunction with other appropriate health care professionals, shall establish protocols for implementing special- ized nutritional support Rationale Protocols should be established in order to ensure safe and effective delivery of specialized nutritional support. Criteria Establishment of written protocols regarding: 1. Administration of specialized nutritional support 2. Monitoring of specialized nutritional support 3. Infection control 4. Documentation in the medical record PATIENT MONITORING Standard A: Monitoring Nutrition Response The nutritional support dietitian. in conjunction with other health cae professionals. shall monitor 244 ASPEN. the response of the patient to specialized nutritional support. to provide a basis tor adjusting therapy. Rationale The effectiveness and safety of nutritional support requires routine monitoring which can measure suc- cess or adverse effects. Criteria Monitoring and documentation ot: 1. Actual nutrient delivery during nutritional sup- port Biochemical and other pertinent laboratory data: non-routine analyses if appropriate 3. Weight or other appropriate indices of body com- position 4. The implications of any nutrient-drug interactions Intolerance to therapy which may include gas- trointestinal complications. fluid. and electrolyte imbalances Signs and symptoms of nutrient deficiencies or excesses The clinical course of the patient. including in- dices of major organ functions The psychosocial adjustment of the patient when appropriate Alterations or changes in nutrient requirements based on changes in clinical status TRANSITIONAL FEEDING Standard A: Transition from Parenteral Nutrition [3%] 6. 9. The nutritional support dietitian, in conjunction with other health care professionals, shall establish criteria to evaluate adequacy of the enteral intake prior to the discontinuation of parenteral nutrition. Rationale Parenteral nutrition should not be discontinued until estimated nutrients are tolerated by the gas- 245 trointestinal tract. Parenteral nutrient formulation should be discontinued over time while enteral or oral feedings are increased. Documentation of inges- tion of adequate nutrients via the gastrointestinal tract should be made in the medical record. Criteria Evaluation and documentation of: Nutrient intake Tolerance of enteral intake which may include assessment of gastrointestinal status including diarrhea, residuals, distention, nausea, vomiting, swallowing. aspiration, and absorption problems. 19 — Standard B: Transition from Enteral Tube Feedings The nutritional support dietitian, in conjunction with other health care professionals shall verify ad- equate oral intake prior to discontinuation of enteral tube feedings. Rationale Enteral tube feedings should not be discontinued until estimated nutrient requirements are met by oral intake. Tube feedings should be discontinued over time while oral intake increases, to avoid pe- riods of nutritic Jl compromise. Criteria Verification vv ! documentation of: 1. Oral nutrien: intake 2. Tolerance to oral intake. which may include as- sessment of gastrointestinal status including diar- rhea. gastric residuals. distention. nausea. vomit- ing, swallowiny, aspiration. and absorption prob- lems 3. Tolerance to individual foods 4. Diet prescription based on medical diagnosis STANDARDS OF PRACTICE NUTRITIONAL SUPPORT PHARMACIST October 1986 246 A.S.P.E.N. is a professional society whose members are health care professionals - physicians, pharmacists, nurses, dietitians, and nutritionists dedicated to optimal specialized nutrition support of patients during hospitalization and rehabilitation. A.S.P.E.N.'s diverse professional membership reflects the basic importance of good nutrition to good medical and surgical practice and the multidisciplinary team approach to sound nutritional support. These Standards of Practice for the Nutritional Support Pharmacist should be utilized in conjunction with the following A.S.P.E.N. publications. 1. Standards for Nutrition Support, Hospitalized Patients 2. Standards for Nutrition Support, Home Patients 3. Standards of Practice, Nutrition Support Nurse 4. Standards of Practice, Nutritional Support Dietitians A.S.P.E.N. disclaims any liability to any health care provider, patient or other persons affected by these standards. Copyright 1986 American Society for Parenteral and Enteral Nutrition 8605 Cameron Street, Suite 500 Silver Springs, Maryland 20910 (301) 587-6315 All rights reserved. Copies of this publication may not be made without the explicit written consent of this Society. 247 As the importance of appropriate nutritional support has become more appreciated and as the clinical practice of nutritional support has developed, Nutritional Support Pharmacy has evolved as a recognized pharmacy specialty. As such, the Ad Hoc Committee for Pharmacy Standards, a subcommittee of the Pharmacists’ Committee of A.S.P.E.N., has recognized the need to define the role of the Nutritional Support Pharmacist. Hence, the Committee has developed these standards which represent the current, yet diverse, views of pharmacists who are experienced in Nutritional Support Pharmacy Practice. These standards reflect the pharmacist's role in the provision of optimal specialized nutritional support. This document describes areas of major pharmacy involvement and provides guidance by establishing minimum standards of practice for the Nutritional Support Pharmacist who seeks to contribute to optimal patient care. The Pharmacists' Camittee would like to thank those members of A.S.P.E.N. who participated in the development of these standards. The involvement of the Standards Committee and the Board of Directors is also greatly appreciated. Richard J. Baptista, M.S., R.Ph. Chairman, Ad Hoc Committee for Pharmacy Standards Rex O. Brown, Pharm.D. Joseph S. Bertino, Jr., Pharm.D. Roland N. Dickerson, Pharm.D. Director-at-Large-Pharmacist, and David F. Driscoll, M.S., R.Ph. Chairman, Pharmacists' Committee Thomas C. Hardin, Pharm.D. Richard A. Helms, Pharm.D. Robert B. Parks, Pharm.D. Philip J. Schneider, M.S:, R.Ph. Subcommittee, Pharmacy Standards 248 Definitions Admixture - the result of cambining two or more fluids. Pharmacodynamics - the actions of drugs on the living organism. Pharmacokinetics = the movement of drugs within biological systems as affected by absorption, distribution, metabolism, and excretion. Formulary - a list of drugs, solutions, and formulations approved for use within an institution by its Pharmacy and Therapeutics Cammnittee, or other applicable authority, for the purpose of promoting rational and cost-effective therapy. 249 NUTRITIONAL SUPPORT PHARMACY PRACTICE addresses the care of patients with potential or existing nutritional alterations. The pharmacist who is involved in specialized nutritional support therapy utilizes specific expertise which promotes the maintenance and/or restoration of optimal nutritional status. Physiologic, metabolic, pharmacologic, pharmacokinetic, and pharmacodynamic principles, as well as available technology, are considered by the pharmacist when nutritional intervention begins. The pharmacist's role should include ongoing assessment and planning as it relates to the needs of the patient, the provision of quality patient care, and the evaluation of the patient's response to therapy. THE NUTRITIONAL SUPPORT PHARMACIST functions as a member of a multidisciplinary nutritional support service or nutritional cammittee which coordinates the provision of specialized nutritional support. Because the responsibilities of the Nutritional Support Pharmacist will vary with the institution, the pharmacist's role may overlap with the roles of other nutritional support professionals. THE SCOPE OF NUTRITIONAL SUPPORT PHARMACY PRACTICE includes all pharmacist activities related to promoting optimal nutritional health. Pharmacist activities eminate fram sound scientific principles, are designed according to the needs of the patient, and are modified as the patient's clinical status changes. THE GOAL OF THE NUTRITIONAL SUPPORT PHARMACIST is to utilize pharmaceutical, pharmacological, and clinical expertise to optimize nutritional status and overall care of the patient. Identification of optimal or adverse outcomes requires documentation, data collection, and periodic assessment. Measurable outcames include the results of: 250 1. Assessing patients at nutritional risk. 2. Identifying patients who require specialized nutritional support and providing appropriate therapy. 3. Monitoring patients receiving specialized nutritional support for the desired response and potential adverse effects or camplications. I. Nutritional Status Assessment A. Standard The Nutritional Support Pharmacist shall verify that the patient at nutritional risk has been assessed by the appropriate health care professional prior to campounding and dispensing of parenteral nutrient admixtures by the pharmacy. B. Rationale Nutritional assessment helps assure appropriate use of specialized nutritional support. C. Outcome Criteria The medical record documents that the nutritional status of the patient was evaluated. II. Delivery of Parenteral or Enteral Nutrition A. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall assure that the patient receives the most cost-effective, beneficial feeding formulation using the most appropriate, least invasive, access and delivery system. B. Rationale 1. Maintenance or restoration of optimal nutritional status is 251 c. directly related to appropriate composition and safe and accurate delivery of the feeding formulation. The primary expertise of the Nutritional Support Pharmacist is in the area of parenteral nutrient admixtures. Involvement by the Nutritional Support Pharmacist in the area of enteral feeding may be appropriate. 2. The access and feeding formulation should be compatible. 3. Certain infusion devices may be more appropriate for a particular feeding formulation or for a specific patient. 4. Complications due to the preparation or infusion of the feeding formulation should be avoided. Outcome Criteria There is documentation by the Nutritional Support Pharmacist that: 1. The feeding formulation and access have been considered. 2. The most appropriate system was used to deliver the feeding formulation. 3. The appropriate pharmacy measures were used to prevent or correct any potential or actual adverse effects related to the formulation or its administration. III. Drug-Nutrient Interactions A. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall assure that the patient who is at risk for pharmacokinetic and pharmacodynamic alterations 252 because of malnutrition or nutritional support is evaluated. B. Rationale 1. 2. 3. 4. Se. 6. 7. Drug therapy, age, and physical maturity alter nutritional requirements which may lead to nutrient depletion or excess. Complex diseases and/or altered body composition affect the response to certain drugs or dosage forms, as well as the utilization of certain nutrients. Safe and effective provision of drug therapy in patients receiving specialized nutritional support may be a responsibility of the Nutritional Support Pharmacist. Concurrent drug therapy may significantly influence the absorption, distribution, metabolism, and excretion of other drugs and nutrients. Drug therapy may interfere with nutrition delivery techniques. Nutritional therapy may alter the absorption, distribution, metabolism, and excretion of some drugs. Significant drug-nutrient interactions may necessitate pharmacy intervention. C. Outcome Criteria The Nutritional Support Pharmacist: 1. 2. Documents a medication history of the patient. Identifies the patient likely to exhibit altered drug and nutritional responses. 253 3. 4. 5. Identifies the drug(s) most likely to influence nutritional outcome. Establishes monitoring parameters for drug-nutrient interactions and subsequent course(s) of action. Develops policies to minimize adverse drug-nutrient interactions and incompatibilities. IV. Monitoring Nutritional Support Therapy A. B. c. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall use monitoring data to assist in providing optimal parenteral and enteral feeding. Rationale 1. 2. Nutritional repletion and/or techniques of administration may result in metabolic, infectious, or technical complications. The feeding formulation may require adjustment to better meet nutritional needs or prevent adverse effects. Outcome Criteria There is evidence that the Nutritional Support Pharmacist has used monitoring data to provide optimal nutritional support therapy. 254 V. Pharmaceutical Compounding of Parenteral Nutrient Admixtures A. Standard The Nutritional Support Pharmacist shall assure preparation of an appropriate sterile parenteral nutrient admixture. Compounding procedures shall be consistent with all applicable regulations. B. Rationale 1. Specialized nutritional support requires an admixture of the appropriate and campatible nutrients. 2. Aseptically compounded parenteral admixtures minimize infectious complications. C. Outcome Criteria The Nutritional Support Pharmacist will assure that: 1. Sterile, compatible, cost-effective parenteral nutrient admixtures are prepared by the pharmacy. 2. The policy and procedure manual of the department of pharmacy details acceptable aseptic compounding procedures. 3. Quality assurance assessments are routinely conducted -- for example, efficient mechanical operation of the laminar flow hood, microbiological testing for surface contaminants, and periodic batch sampling of prepared admixtures for sterility. 255 VI. Nutritional Support Formulary Establishment and Maintenance A. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall assure development and maintenance of an adequate nutritional support formulary. The Nutritional Support Pharmacist will provide input pertaining to pharmaceutical and cost-effective aspects of these products. B. Rationale 1. The nutrient needs of individual patients may require different formulations. 2. Cost effectiveness and efficacy are considerations in the selection of nutrient formulations. C. Outcome Criteria The Nutritional Support Pharmacist, in conjunction with other health care professionals, develops: 1. Criteria for the use of disease-specific products or new products. 2. Control mechanisms for use of products and/or therapy. 3. Methods to assess these control mechanisms. VII. Performance of Utilization Reviews and Quality Assurance Audits A. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall assure that records of all 256 patients who receive specialized nutritional support are evaluated for adequacy of prescribed nutrient regimens, incidence and severity of complications, and other factors involved in providing safe, efficacious, cost-effective nutritional support. Quality assurance issues pertaining to pharmacy should be acted upon by the Nutritional Support Pharmacist. B. Rationale l. Identification and quantification of any potential problems are likely to improve the safety and efficacy of specialized nutritional support. 2. The cost of specialized nutritional support may be substantial. C. Outcome Criteria The pharmacy or nutritional support service records document: 1. Audit or utilization review criteria including purpose(s), target area(s), and duration of study. 2. Campilation and analysis of all data. 3. Corrective action resulting from the review or audit. 4. Analysis or evaluation of the success of the corrective procedures. VIII. Preparing the Patient for Parenteral Nutrition at Home A. Standard The Nutritional Support Pharmacist, in conjunction with other health care professionals, shall assure that the patient in need of long-term home parenteral nutritional support is identified, educated, and subsequently monitored. 257 B. Rationale 1. An evaluation of the patient's home environment, attitude, competency, manipulative skills, and comprehension of home parenteral nutritional support is vital to a tailored course of instruction. 2. A tailored course of instruction is essential to successful long-term home nutritional support to achieve a reasonably normal lifestyle. 3. Consistency in training and follow-up is beneficial both to the patient and to the hame care program. C. Outcome Criteria | The Nutritional Support Pharmacist, in conjunction with other health care professionals, should document: 1. Disciplines involved, time spent, and the performance of the patient in the home nutrition program. 2. Mechanical, metabolic, and septic complications experienced by the patient in the home environment. 3. Review and modification of the training program based on complications experienced by the patient and on published guidelines. IX. Nutritional Support Research and Education Responsibilities A. Standard The Nutritional Support Pharmacist shall disseminate information concerning accepted nutritional support techniques through organized educational efforts, and participate in research programs where feasible. 258 B. Rationale 1. 2. Clinical nutritional support continues to change in response to new knowledge. The Nutritional Support Pharmacist is uniquely qualified to conduct educational or research projects either independently or through collaborative efforts. C. Outcome Criteria The Nutritional Support Pharmacist documents: 1. 2. 3. Involvement in the organized educational efforts of the institution and the profession as related to specialized nutritional support. Educational activities directed at the optimal provision of specialized nutritional support. Involvement in investigational projects. 259 0143-6071/86/1005-0441302.00/0 JOURNAL OF PARENTERAL AND ENTERAL NUTRITION Copyright ¢ 1956 by the American Society for Parenteral and Enteral Nutrition Vol. 10. No. 5 Printed in U.S.A. Special Reports Guidelines for Use of Total Parenteral Nutrition in the Hospitalized Adult Patient* A.S.P.E.N. BOARD OF DIRECTORS A.S.P.E.N. is a professional society whose members are health care professionals—physicians, nurses, dieti- tians, pharmacists, and nutritionists—dedicated to op- timum nutrition support of patients during hospitaliza- tion and rehabilitation. A.S.P.E.N.s diverse professional membership reflects the basic importance of good nutrition to good medical practice and the multidiscipline team approach to sound nutrition support. A.S.P.E.N. has developed these guidelines to promote health and welfare of those patients in need of enteral and parenteral nutrition. It must be recognized that absolute criteria cannot be established for utilization of a relatively new, effective, yet costly, mode of medical therapy in hospitalized patients with a wide variety of disease states. Individual patient variability and lack of sound randomized clinical trials demands exercise of clinical judgement. Use of total parenteral nutrition (TPN) is associated with some risk. Total parenteral nutrition is the provision of required nutrients by the intravenous route to replenish or maintain nutritional status. Recommendations for use of this therapy con- tained herein are based on general conclusions of health professionals who identify clinical circumstances where benefits outweigh the risks. The following are, therefore, not intended to apply in all clinical settings but to serve only as general guidelines. Only after individual patient evaluation should these guidelines be used to evaluate the performance of a nutritional support service or to determine réimburse- ment policies of private or governmental agencies. It is anticipated that these guidelines will require modifica- “tion frequently, and perhaps dramatically, as experience increases. These guidelines should be used in conjunction with similar guidelines now under development for use of enteral nutrition. For patients with a functioning gastrointestinal tract, if clinically applicable, enteral nu- trition is the preferred method of treatment. Received for publication. May 28, 1986. Accepted for publication. May 28, 1986. Reprint requests: For a single copy. please send 9 X 12 self-addressed envelope with 39¢ postage affixed to A.S.P.E.N., 8605 Cameron Street, Suite 500, Silver Spring, MD 20910. * Approved April 1986. A supplement to.these guidelines to cover TPN patients at home is in preparation. INTRODUCTION 1. It is widely accepted that adequate nutrition plays an important role in good health. Great effort has been taken to determine minimal daily requirements for a wide variety of nutrient substrates including proteins, carbohydrates, fats, vitamins, minerals, and trace ele- ments. Major governmental and nongovernmental ef- forts emphasize high quality nutrition for all including the school lunch program, nursing home care programs, and Meals on Wheels. Finally, a multitude of scientific and nonscientific publications on nutrition-related mat- ters further confirm dedication to sound nutritional care. In the hospital, dietary kitchens provide a wide variety of high quality diets specifically designed to provide optimal nutrition for patients with various disease states. Dietary departments have been established which incor- porate the expertise of dietitians, food technologists, and food delivery personnel. A significant portion of hospital budgets is dedicated to provision of this food. To assure optimal care, the Joint Commission on Accreditation of Hospitals has established minimal standards for dietary care. . The provision of adequate nutritional support-to the hospitalized patient whose gastrointestinal tract does not function has not, however, been given as much attention. These patients are frequently given intravenous fluids with nothing taken by mouth or severely restricted diets for some part of their hospital stay. It is just as important to consider these patients’ needs as those who can take an oral diet. Indeed, many patients who cannot eat are critically ill or severely stressed and the urgency of providing adequate nutrition to support the healing proc- ess exceeds that of less-stressed patients who can eat. 2. There is no disease process that benefits from star- vation. The standard intravenous solution given patients who cannot eat is 5% dextrose with electrolytes. This solution provides only approximately 500 calories a day to adults as glucose, no protein, and usually no vitamins, minerals, or trace elements. It provides adequate water, but is of little other benefit. 3. Starvation that occurs during hospitalization is as- sociated with mobilization of body protein mass as well as fat for energy. Since no protein reserves exist in the body, protein catabolized for energy threatens organ mass and function including skeletal and respiratory 260 A.S.P.E.N. BOARD OF DIRECTORS muscle, liver, kidneys, heart, gastrointestinal tract, en- docrine system, and the immune system. 4. Increasing severity of malnutrition is associated with increasing morbidity and mortality. This clear as- sociation has been shown repeatedly over the past 40 yr. No clinical study has documented improved morbidity or mortality when patients under stress or trauma, or those who are to undergo major operative procedures, are pretreated with a planned starvation diet. The pre- vention and correction of malnutrition in medical prac- tice is therefore a priority. 5. Moderate stress may be associated with a daily loss of 10 to 15 g of nitrogen when patients are given 5% dextrose. Optimal nutritional support can at best be expected to establish a 3 to 5 g/day positive nitrogen balance. For every day delay in establishing adequate nutritional support, therefore, it may take 3 to 5 days or more just to “catch-up.” 6. Optimal medical and surgical management should prevent malnutrition. All patients admitted to the hos- pital should therefore be carefully evaluated and fed appropriately to avoid malnutrition whenever possible. Those patients who are admitted with preexisting mal- nutrition should be considered for early and aggressive nutritional support to avoid further depletion and hope- fully to restore normal nutritional status. When the gastrointestinal tract works it should be used. When it does not work, total parenteral nutrition should be uti- lized. 7. On the other hand, it must be recognized that patient outcome is dependent on a number of complex factors, some of which may play just as important a role as nutritional status. The nature and severity of the primary disease process as well as other disease processes present, age, sex, psychological state, level of physical activity, available therapeutic modalities including chemotherapy, drug therapy, radiation therapy, and sur- gery must all be considered. Although malnutrition con- tributes to morbidity and mortality, and although inten- sive nutritional support can improve the nutritional sta- tus, documentation that nutritional support improves outcome is limited. The proper selection of candidates for nutritional support cannot, therefore, be left to in- experienced individuals. Ideally each patient should be evaluated by a nutritional support team including dieti- tians, nurses, pharmacists, and physicians. Emphasis must be placed on avoiding over utilization as well as under utilization of nutritional support. CLINICAL SETTINGS WHERE TPN SHOULD BE A PART OF ROUTINE CARE 1. Patients with Inability to Absorb Nutrients via the Gastrointestinal Tract Massive small bowel resection. Patients having under- gone greater than 70% small bowel resection often can- not immediately absorb adequate nutrients from the remaining gastrointestinal tract. Consequences of forced enteral feeding include severe diarrhea, electrolyte and acid-base disturbances, fluid imbalances, progressive Vol. 10, No. 5 malnutrition, and death. There is evidence, however, that the small bowel, following massive resection, can adapt and adequately digest food and absorb nutrients over a period of 2 to 3 yr. Patients should not, therefore, be allowed to suffer the consequences of severe malnutrition including death when the period of inadequate absorp- tion of nutrients is self-limited. Patients with 70 to 80% resections will vary in their adaptive response depending on their age and other medical problems but will gener- ally be able to eventually resume an adequate enteral diet. When 80 to 90% of the small bowel has been resected, the adaptive ability of the intestine is often insufficient to allow resumption of adequate enteral nu- trition and parenteral nutrition will usually be required to some extent for the rest of the patient’s life. In properly selected patients, long-term home total paren- teral nutrition may provide quality longevity. Those pa- tients with severe medical problems, and severely limited quality of life, however, may not be candidates for initial bowel resection or for long-term home total parenteral nutrition. Clinical and ethical judgement is required. Diseases of the small intestine. Impaired intestinal motility and/or absorption of nutrients may be associ- ated with scleroderma, systemic lupus erythematosis, other collagen vascular-type diseases, sprue, intestinal pseudo-obstruction, intestinal ischemia not amenable to surgical correction, multiple enterocutaneous fistulae, and extensive, surgically unresectable Crohn’s disease. Such patients can be sustained in relatively good health by total parenteral nutrition. These patients are good candidates for long-term home total parenteral nutrition as well and can often lead active and productive lives. There is another group of patients with poor intestinal motility secondary to hypoperfusion of the small bowel such as during cardiogenic shock or other hypotensive episodes. These patients have occasionally developed necrotizing enterocolitis when enteral tube feedings have been given and total parenteral nutrition is preferable. Radiation enteritis. Although the treatment of a pri- mary malignancy such as cervical or bladder cancer by radiation therapy may be successful, a limiting factor in these patients’ long-term survival may be their inability to absorb substrates if radiation enteritis is severe. Pro- vision of total parenteral nutrition while hospitalized and at home should always be considered if an enteral diet is inadequate to sustain life. Patients with severe diarrhea. Whether due to primary gastrointestinal disease or due to viral or bacterial enter- itis, patients hospitalized with severe diarrhea should be supported with total parenteral nutrition during the initial evaluation and treatment until an adequate en- teral diet can be resumed. In cases of chronic severe diarrhea, home total parenteral nutrition may provide necessary and effective management. Patients with intractable vomiting. Patients with severe nausea accompanied by intractable and protracted vom- iting should have their nutritional status maintained with total parenteral nutrition until the etiology of the vomiting is defined and successfully treated. Patients suffering from protracted vomiting during chemotherapy 261 September /October 1986 are candidates for total parenteral nutrition depending on the duration of the vomiting. A select few patients have normal gastrointestinal absorptive capabilities with severe vomiting caused by chemotherapeutic agents. An attempt could be made to pass a small nasoenteric feed- ing tube into the jejunum to bypass the stomach and thereby avoid regurgitation of the nutrient substrates but in those patients who repeatedly regurgitate the feeding tube, inadequate enteral feedings can result in progres- sive malnutrition. These patients are good candidates for total parenteral nutrition until the emetic effects of chemotherapy have abated. 2. Patients Undergoing High-Dose Chemotherapy, Radiation, and Bone Marrow Transplantation This method of therapy is gaining more widespread use. Due to its intensity, patients are often severely ill for 3 to 6 weeks and are often unable to eat due to a combination of ulcerative stomatitis, nausea and vomit- ing, anorexia, and diarrhea. Although survival is depend- ent on response to therapy, premature death due to malnutrition can and should be avoided by provision of total parenteral nutrition. 3. Moderate to Severe Acute Pancreatitis Therapy of severe acute pancreatitis usually includes bowel rest and nasogastric decompression. For short periods of time, this therapy is well tolerated. In those patients in whom the pancreatitis does not resolve rap- idly and in whom the need for continued bowel rest is anticipated beyond 5 to 7 days, early institution of total parenteral nutrition should be considered to provide adequate nutritional substrates through the period of stress to avoid complications of malnutrition. 4. Severe Malnutrition in the Face of a Nonfunctional Gastrointestinal Tract Normally nourished or mildly malnourished patients need not receive total parenteral nutrition if recovery of gastrointestinal tract function is expected to occur within a short period of time (within 5-7 days). In patients who are clinically severely malnourished however, tolerance to further starvation is limited and the added possibility of required surgery or stressful therapy in the face of a nonfunctional gastrointestinal tract would mandate early total parenteral nutrition (within 1-3 days). 5. Severely Catabolic Patients with or without Malnutrition When the Gastrointestinal Tract is not Usable within 5-7 Days In patients with high-level stress, with increased met- abolic expenditures, who are not adequately supple- mented due to a nonfunctional gastrointestinal tract (ileus, fistula, recent anastomosis, etc), body mass losses can be significant in 7 to 10 days placing the patient at risk of increased morbidity and mortality. Possible com- plications due to malnutrition should be avoided in this GUIDELINES FOR USE OF TPN group of patients by early aggressive nutritional support (within 1-3 days). Included in this group of patients would be those with greater than 50% body surface area burns, multisystem trauma, extensive surgery, sepsis, and severe inflammatory bowel disease, among others. Multiple organ dysfunction is not a contraindication to total parenteral nutrition but it does mandate careful modification of the nutrient formulation. CLINICAL SETTINGS WHERE TPN USUALLY WOULD BE HELPFUL In this category, conditions which are usually thought to benefit from TPN will be noted. The patient’s clinical condition, diagnoses, and clinical course should be re- viewed by nutritional support professionals to determine if TPN should be administered. 1. Major Surgery Total parenteral nutrition should be considered follow- ing major surgery with moderate stress when an adequate enteral diet is not expected to be resumed within 7 to 10 days. Some examples include patients undergoing total colectomy, esophagogastrectomy, pancreaticoduodenec- tomy, total pelvic exenteration, anterior spinal fusion, and elective repair of an abdominal aortic aneurysm. In some cases, a jejunal feeding tube can allow enteral feeding after 5 to 7 days but TPN could be considered beginning at 48 hr and continued until enteral nutrition is achieved. 2. Moderate Stress During any moderately stressful period when an en- teral diet can not to be resumed for over 7 to 10 days. This would include patients with moderate trauma, 30 to 50% body surface area burns, moderately severe pan- creatitis, neurologic trauma, and other similar stresses. 3. Enterocutaneous Fistulae Early surgical intervention in treatment of enterocu- taneous fistulae has been associated with a high recur- rence rate and frequent morbidity. Delay in restoration of bowel continuity, however, has led to increased mor- bidity and mortality due to severe malnutrition. TPN can provide adequate nutritional support allowing for bowel rest and clinical stabilization prior to surgery. In addition, in the absence of distal bowel obstruction, undrained abscesses, foreign body in the fistula tract, or discontinuous bowel segments, the fistula will often heal spontaneously with time avoiding the need and risks of surgery. Patients with known dense intraabdominal adhesions and those with a recent myocardial infarction or other severe medical disease are best treated with bowel rest and total parenteral nutrition in hopes of spontaneous closure. Patients with multiple fistulae, which are not likely to be corrected surgically, may respond favorably to a regimen of bowel rest and long- term home total parenteral nutrition. : 262 A.S.P.E.N. BOARD OF DIRECTORS Inflammatory Bowel Disease Patients with inflammatory bowel disease who are not sponding to medical therapy may show significant im- ovement with bowel rest and 2 to 4 weeks of TPN with ntinued medical management. Remission of the sease may occur during this interval and surgical tervention may thereby be avoided. As a special con- jeration, children with growth retardation secondary active inflammatory bowel disease often demonstrate storation of normal growth and development when lequate TPN is instituted. Hyperemesis Gravidarum Severe nausea and vomiting associated with early preg- incy can severely impair dietary intake and may subject e fetus to developmental abnormalities. Short-term fficulties may require no special nutritional manage- ent but in those selected patients where nausea and 'miting persists for greater than 5 to 7 days, consider- ion should be given to instituting parenteral nutrition protect both the mother and the fetus. Moderately Malnourished Patients Who Require itensive Medical or Surgical Intervention Patients who are moderately malnourished and whose strointestinal tract function is impaired may be con- Jered for a 7 to 10 day course of TPN prior to perform- ice of major surgical procedures or concurrent with itiation of aggressive chemotherapy or medical man- cement. Although complete nutritional rehabilitation nnot be accomplished in 7 to 10 days, the institution therapy prior to a stressful event with continuation iring stress is more effective in maintaining nutritional atus, preventing further nutritional deterioration, and ducing morbidity and mortality. Patients in Whom Adequate Enteral Nutrition winnot be Established within 7- to 10-Day Period of ospitalization Patients who cannot achieve adequate enteral intake nile receiving only fluid and electrolyte therapy are at creased risk of developing malnutrition. Since it is eferable to prevent malnutrition rather than treat it, nsideration should be given to instituting parenteral itrition soley or in conjunction with enteral feedings. Patients with Inflammatory Adhesions with Small awel Obstruction Such patients may benefit from 4 to 6 weeks or more TPN with bowel rest prior to repeat operative inter- ntion. In some cases the adhesions may soften and the istruction resolve. In other cases the surgical procedure n be facilitated by resorption of dense adhesions. Patients Receiving Intensive Cancer Chemotherapy Although it remains unclear as to whether TPN en- inces the effectiveness of chemotherapy, it has been Vol. 10, No. 5 well established that TPN can maintain a normal nutri- tional status during such therapy. Nutritional support has allowed more intensive therapy, in spite of anorexia, and promotes a sense of well-being in the patient allow- ing the patient to be less dependent on others. The progressive cachexia associated with repeated courses of chemotherapy should not be allowed to occur if the chemotherapy appears to be effective in prolonging life. CLINICAL SETTINGS WHERE TPN VALUE IS OF LIMITED Patients in the following clinical settings probably do not benefit from the use of total parenteral nutrition. It must be understood, however, that exceptions may occur and a thorough evaluation by the clinician and nutri- tional support team is required to decide on the appro- priateness of withholding total parenteral nutrition in each case. 1. Minimal Stress and Trauma in the Well-Nourished Patient When the Gastrointestinal Tract Is Usable within a 10-Day Period Examples would be body surface burn of less than 20%, mild and self-limited acute pancreatitis, and limited soft tissue injury. 2. Immediate Postoperative or Poststress Period In the immediate postoperative period or poststress period, if the patient is otherwise well nourished it is anticipated that the gastrointestinal tract will recover within 7 to 10 days. 3. Proven or Suspected Untreatable Disease State Total parenteral nutrition in patients with extremely poor quality of life with no hope for improvement evokes very difficult ethical issues and should not be undertaken without full discussion with the patient and appropriate family members. In general, little benefit is observed. An example of such a condition are patients with widely metastatic malignancy with no known effective therapy. CLINICAL- SETTINGS WHERE TPN SHOULD NOT BE USED 1. Patients Who Have a Functional and Usable Gastrointestinal Tract Capable of Absorption of Adequate Nutrients There is no evidence that TPN offers any advantage to enteral feeding when the gastrointestinal tract is func- tioning properly. If the gastrointestinal tract works, it could be used when clinically feasible. If obstruction is present in the proximal gastrointestinal tract such as in the esophagus, stomach or duodenum, enteral feeding tubes could be placed beyond the obstruction to allow distal feeding. All patients receiving total parenteral nutrition should be closely monitored for recovery of bowel function and converted to enteral feeding when- ever appropriate and sate. 263 September/October 1986 2. When the Sole Dependence on TPN Is Anticipated to Be Less than 5 Days 3. Patients in Need of Urgent Operation Should not Have That Operation Delayed Soley in Favor of TPN Examples are patients who need drainage of deep abscesses, and patients with acute abdominal catastro- phes. 4. Whenever Aggressive Nutritional Support Is not Desired by the Patient or Legal Guardian, and When Such Action Is in Accordance with Hospital Policy and Existing Law GUIDELINES FOR USE OF TPN 5. Patients Whose Prognosis Does not Warrant Aggressive Nutritional Support Withholding TPN from patients with extremely poor prognosis with no hope for improvement evokes very difficult ethical issues and should be done only after full discussion with the patient and appropriate family mem- bers and in accordance with existing law. Examples of this group of patients include those who are imminently terminally ill due to their primary illness and those with irreversible coma except as a life-sustaining effort pend- ing organ donation. 6. When the Risks of TPN Are Judged to Exceed the Potential Benefits 264 BIOGRAPHICAL SKETCH Michael A. Calogero Consultant, Benefits and Utilization Practices Blue Cross and Blue Shield Association 676 North St. Clair Street Chicago, IL 60611 312/440-6142 M.S. - Health and Hospital Administration Pennsylvania State University B.S. - Economics Pennsylvania State University Consultant, Utilization Review in the Benefits and Utilization Practices department - National Marketing Division, Blue Cross and Blue Shield Association. Responsible for providing technical support and consultative staff assistance to Blue Cross and Blue Shield Plans in the development, demonstration and review of activities relating to utilization review and managed care programs Nursing home administrator for 5 years in Pennsylvania and Illinois prior to joining the Association Research analyst for United Mine Workers Health and Retirement Funds and American Group Practice Association Member of the Insurance Task Force of the National Head Injury Foundation 265 TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN TORRANCE MARRIOTT HOTEL 3635 FASHION WAY TORRENCE, CALIFORNIA MARCH 5, 1987 MICHAEL A. CALOGERO CONSULTANT, BENEFITS & UTILIZATION PRACTICES BLUE CROSS AND BLUE SHIELD ASSOCIATION 676 NO. ST. CLAIR STREET CHICAGO, IL 60611 312/440-6142 266 MY RESPONSIBILITY THIS MORNING IS TO TALK TO YOU ABOUT THE ROLE OF BLUE CROSS AND BLUE SHIELD PLANS WITH RESPECT TO TECHNOLOGY DEPENDENT CHILDREN. BLUE CROSS AND BLUE SHIELD PLANS ARE WELL AWARE OF THE PROBLEMS FACED BY THESE CHILDREN AND THE RECENT INNOVATIONS IN CARING FOR THEM. IN THE PAST, THESE CHILDREN WOULD NECESSARILY BE CONFINED TO A HOSPITAL FOR A VERY LONG STAY, POSSIBLY YEARS, IF THEY SURVIVED AT ALL. ITS NOW BECOMING A COMMON OCCURRENCE FOR TECHNOLOGY DEPENDENT CHILDREN TO BE TAKEN CARE OF AT HOME. OF COURSE, WITH THE SUPPORT OF MANY MEDICAL SERVICES. ALTHOUGH MOST BLUE CROSS AND BLUE SHIELD PLANS HAVE NOT DEVELOPED SPECIFIC PROGRAMS FOR TECHNOLOGY DEPENDENT CHILDREN, THEY HAVE DEVELOPED PROGRAMS WHICH DO INCLUDE THEM AS PART OF THEIR TARGETED GROUPS. APPROXIMATELY 90 PERCENT OF ALL BLUE CROSS AND BLUE SHIELD PLANS PROVIDE SOME TYPE OF HOME-CARE BENEFITS- WHICH MAY BE USED TO PAY FOR SERVICES FOR TECHNOLOGY DEPENDENT CHILDREN. THE SERVICES ACTUALLY COVERED WOULD DEPEND ON THE SPECIFIC COVERAGE WHICH THE SUBSCRIBER HAS PURCHASED. DEPENDING ON THE SEVERITY AND CHRONICITY OF THE CHILD'S CONDITION, THESE BENEFITS MAY OR MAY NOT BE SUFFICIENT. IN MOST CASES, A TECHNOLOGY DEPENDENT CHILD WOULD PROBABLY RECEIVE MORE COMPREHENSIVE BENEFITS IN THE CASE MANAGEMENT PROGRAMS NOW BEING IMPLEMENTED BY BLUE CROSS AND BLUE SHIELD PLANS. AT PRESENT, APPROXIMATELY 60-70 PERCENT OF ALL PLANS HAVE SOME TYPE OF CASE MANAGEMENT PROGRAM DEVELOPED. THE CRITERIA THAT IS GENERALLY USED FOR PARTICIPATION IN THESE PROGRAMS ARE: (1) CARE IS MEDICALLY NECESSARY, (2) IT IS A SUBSTITUTE FOR HOSPITAL CARE AND (3) THE PROPOSED ALTERNATIVE WILL BE COST EFFECTIVE. IN MOST PLANS, CASE MANAGEMENT PROGRAMS ARE PROVIDED AS PART OF AN OVERALL MANAGED CARE PROGRAM. A MANAGED CARE PROGRAM WOULD TYPICALLY INCLUDE COMPONENTS SUCH AS: 267 PREADMISSION REVIEW OF HOSPITAL ADMISSIONS CONCURRENT REVIEW DISCHARGE PLANNING INDIVIDUAL CASE MANAGEMENT SECOND SURGICAL OPINION AND SUPPORTING BENEFITS MANY OF THESE COST CONTAINMENT PROGRAMS ARE INTERRELATED AND DEPEND UPON EACH OTHER FOR SUCCESSFUL OPERATION. TO FOCUS ON CASE MANAGEMENT THOUGH: OUR CASE MANAGEMENT OBJECTIVES ARE TO: IDENTIFY HIGH-COST PATIENTS AS EARLY AS POSSIBLE LOCATE AND ASSESS ALTERNATIVE TREATMENT METHODS MANAGE BENEFITS AS COST EFFECTIVELY AS POSSIBLE A CASE MANAGEMENT PROGRAM SEEKS TO MANAGE HIGH COST PATIENTS WITHIN THE ESTABLISHED BENEFIT STRUCTURE AND TO PROVIDE BENEFIT EXCEPTIONS ONLY WHEN COST-EFFECTIVE. HOWEVER, IT IS CLEAR THAT CARE OF SOME PATIENTS MIGHT BE IMPROVED IN LESS EXPENSIVE SETTINGS THAT ARE NOT NORMALLY COVERED UNDER HEALTH BENEFITS PLANS. A CASE MANAGEMENT PROGRAM PROVIDES A MECHANISM FOR OVERRIDING COVERAGE RESTRICTIONS THAT MAY BE REASONABLE FOR AN INSURED GROUP OVERALL BUT RESULT IN EXPENSIVE, UNNECESSARY PLACEMENT OF SELECTED HIGH-COST PATIENTS. THESE PROGRAMS CAN BE ESPECIALLY RELEVANT FOR TECHNOLOGY DEPENDENT CHILDREN SINCE DELIVERING CARE AT HOME HAS PROVEN TO BE NOT ONLY EFFECTIVE, BUT WELL RECEIVED BY PATIENTS AND THEIR FAMILIES. THE GOALS THEN OF A CASE MANAGEMENT PROGRAM AS WE SEE IT ARE TO ASSURE THAT: CARE IS PROVIDED IN THE MOST COST EFFECTIVE SETTING TRANSFER TO AN ALTERNATIVE SETTING OCCURS IN A TIMELY FASHION 268 QUALITY OF CARE IS NOT COMPROMISED AND QUALITY OF LIFE MAY BE ENHANCED BENEFITS THAT WOULD NOT OTHERWISE BE AVAILABLE ARE PROVIDED TO COVER CARE THAT RESULTS IN LOWER TOTAL COST IT IS IMPORTANT TO UNDERSTAND WHAT WE REALLY MEAN WHEN WE USE THE TERM CASE MANAGEMENT. SINCE IT HAS BECOME THE "BUZZ" WORD OF OUR TIME AND IS USED IN MANY DIFFERENT WAYS. OUR CASE MANAGEMENT PROGRAMS ACTUALLY ENCOMPASS MORE ACTIVITIES, FOR EXAMPLE, THAN SOME OF THE COMMUNITY BASED CASE MANAGEMENT PROGRAMS FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS. THEIR CASE MANAGEMENT PROGRAMS ARE PRIMARILY INVOLVED WITH COORDINATION AND PROVISION OF SERVICES WHILE OURS NECESSARILY ALSO ENCOMPASSES PROVIDING COVERAGE FOR THE MEDICAL SERVICES REQUIRED. WE ARE NOT ONLY WORKING WITH COORDINATION OF SERVICES BUT ALSO WITH PAYMENT OF THESE SERVICES. MOST OF OUR PLAN'S PROGRAMS ARE FOCUSED ON CATASTROPHIC ACCIDENT OR ILLNESS. PATIENTS ARE IDENTIFIED THROUGH A VARIETY OF CHANNELS INCLUDING PREADMISSION REVIEW, CONCURRENT REVIEW, DISCHARGE PLANNING, PROVIDER REFERRAL, CLAIMS REVIEW. PREADMISSION REVIEW PROGRAMS USUALLY WILL TARGET SPECIFIC DIAGNOSES OR CONDITIONS FOR CLOSER INVESTIGATION. SOME OF THE DIAGNOSES OR CONDITIONS WHICH ARE TYPICALLY TARGETED ARE: HIGH RISK NEONATES SEVERE STROKE/CEREBRAL VASCULAR ACCIDENT MAJOR HEAD TRAUMA SPINAL CORD INJURY COMA RESPIRATOR DEPENDENCE AMPUTATIONS MULTIPLE FRACTURES SEVERE BURNS AIDS 269 ONCE A PATIENT TS IDENTIFIED THE CASE MANAGER WILL CONTACT THE HOSPITAL DISCHARGE PLANNER, THE ATTENDING PHYSICIAN, AND THE FAMILY TO DETERMINE THE BEST AVAILABLE ALTERNATIVE TO INPATIENT HOSPITAL CARE. THE CASE MANAGER WILL SIMULTANEOUSLY ASSESS THE COST EFFECTIVENESS OF THE TRANSFER. WHEN AN ALTERNATIVE IS AGREED UPON, THE CASE MANAGER WILL WORK WITH THE PROVIDERS TO ASSURE THAT ALL OF THE PATIENTS NEEDS WILL BE COVERED EVEN THOUGH THESE MAY NOT HAVE BEEN BENEFITS IN THE PATIENT'S ORIGINAL INSURANCE CONTRACT. ONCE THE TRANSFER IS COMPLETED, THE CASE MANAGER WILL CONTINUE TO MONITOR THE PATIENT'S CARE ON AN ONGOING BASIS UNTIL THE CASE IS COMPLETED. IN MOST HOME CARE CASES FOR TECHNOLOGY DEPENDENT CHILDREN, THE PLAN WILL RELY ON THE FAMILY TO PROVIDE A PORTION OF THE CARE NEEDED. PLANS ARE AWARE OF THE NEED FOR CAREFUL TRAINING AND BACK-UP FOR THE FAMILY IF THE PROGRAM IS TO SUCCEED. MANY TIMES A FAMILY WILL NEED A RESPITE PERIOD TO RELIEVE THE STRESS OF THE ONGOING CARE-GIVER ROLE. IN THESE INSTANCES, PLANS ARE PREPARED TO PAY FOR EXTRA SERVICES ON A SHORT-TERM BASIS TO OBVIATE THE NEED FOR THE CHILD'S TRANSFER BACK TO THE HOSPITAL. IN MOST PLANS THE CASE MANAGEMENT PROGRAM IS USUALLY HOUSED IN THE UTILIZATION REVIEW OR MEDICAL REVIEW DEPARTMENT. THE CASE MANAGER GENERALLY HAS A NURSING BACKGROUND SUPPLEMENTED WITH SOME SPECIALITY AREA SUCH AS REHAB, PUBLIC HEALTH, OR PSYCH, ETC. IN SOME INSTANCES, PLANS HAVE CONTRACTED WITH OTHER GROUPS TO ASSIST THEM IN CASE MANAGEMENT. FOR EXAMPLE, BLUE CROSS AND BLUE SHIELD OF IOWA HAS AN AGREEMENT WITH CHILD HEALTH SPECIALTY CLINICS OF IOWA TO IDENTIFY CHILDREN WITH A POSSIBLE NEED FOR CASE MANAGEMENT AND TO SET UP AND MONITOR THE CHILD'S TREATMENT WHILE IN THE PROGRAM. SOME EXAMPLES OF THE TYPES OF CASES INVOLVING CHILDREN THAT HAVE BEEN COVERED IN CASE MANAGEMENT PROGRAMS INCLUDE: 270 BLUE CROSS AND BLUE SHIELD OF COLORADO HAD A CASE OF A 7 MONTH OLD INFANT WHO WAS BORN PREMATURELY, AND HAD SPENT THE FIRST 3 1/2 MONTHS IN THE HOSPITAL, WAS RE-HOSPITALIZED WITH RESPIRATORY DISTRESS AND CROUP. A TRACHEOSTOMY WAS PERFORMED, HOWEVER, DUE TO SUBGLOTAL STENOSIS (PROBABLY THE RESULT OF THE INFANT BEING ON VENTILATOR FOLLOWING BIRTH) THE INFANT WAS NOT ABLE TO BE DE-CANNULATED. IN ADDITION, HE ALSO REQUIRED CONTINUOUS MONITORING OF HIS RESPIRATORY STATUS. BECAUSE FAMILY MEMBERS WORKED AND WERE NOT AVAILABLE DURING THE DAY OR AT NIGHT, ARRANGEMENTS WERE MADE TO PROVIDE PRIVATE DUTY NURSING DURING THE DAY AND AT NIGHT, ON WEEKDAYS AND JUST AT NIGHT ON WEEKENDS. FAMILY MEMBERS ALSO TOOK ADDITIONAL VACATION TIME TO BE HOME WITH THE INFANT, AND THE NURSING CARE WAS PROVIDED ONLY AT NIGHT DURING THIS TIME. PRIVATE DUTY NURSING DURING THE DAY AND AT NIGHT CONTINUED FOR ALMOST 1 YEAR BECAUSE THE INFANT CONTINUED WITH RESPIRATORY INFECTIONS AND OTHER PROBLEMS PREVENTING DE-CANNULATION. THE TRACHEOSTOMY WAS FINALLY REMOVED AFTER 10 MONTHS. THE CHILD DID WELL AND THE NURSING CARE WAS DISCONTINUED. THIS WAS A LONG-STAY CASE WITH A NUMBER OF UNEXPECTED PROBLEMS. THE PLAN WORKED CLOSELY WITH THE FAMILY THROUGHOUT THE LENGTH OF THE CASE WITH SUCCESSFUL RESULTS. BLUE CROSS AND BLUE SHIELD OF IDAHO PROVIDED BENEFITS FOR A CHILD WITH SOME VERY SPECIAL NEEDS BECAUSE OF A RARE CONDITION OF DEGENERATING VERTEBRAE. IN ORDER FOR THE CHILD TO BE TAKEN CARE OF AT HOME, THE PLAN PURCHASED MEDICAL EQUIPMENT INCLUDING A SPECIAL FLOTATION BED. THEY ALSO PROVIDED BENEFITS FOR NURSING SERVICES BEYOND WHAT WAS ALLOWED IN HIS CONTRACT SO THAT THE CHILD COULD LIVE AT HOME. THE CHILD RECEIVED CARE AT HOME FOR ABOUT 4 1/2 MONTHS BEFORE HE EXPIRED. WITHOUT A CASE MANAGEMENT PROGRAM, HE WOULD ONLY HAVE BEEN ABLE TO RECEIVE BENEFITS FOR THESE SERVICES IN AN ACUTE CARE HOSPITAL. 271 3. BLUE CROSS AND BLUE SHIELD OF MASSACHUSETTS APPROVED CARE IN A HEAD REHAB CENTER FOR A CHILD IN NEED OF CONTINUAL CARE DUE TO A TRAUMATIC BRAIN INJURY. PAYMENT UNDER THE ORIGINAL INSURANCE CONTRACT WOULD ONLY PAY A SMALL PORTION OF THE COST OF THIS FACILITY STAY, HOWEVER THROUGH THIS PROGRAM THE TOTAL COST OF CARE IN THIS SPECIAL FACILITY WAS COVERED FOR THE LENGTH OF HIS STAY. THESE ARE JUST A FEW SAMPLES OF THE TYPES OF CASES WE HAVE SEEN IN THE PAST YEAR. AS I SUGGESTED EARLIER, THE TYPES OF CASES SEEN ARE COMPLICATIONS FROM HIGH RISK NEONATES, VENTILATOR DEPENDENCE, HEAD AND SPINAL CORD INJURIES, CANCER, ETC. LET ME POINT OUT THAT PARTICIPATION IN ALL OF THESE PROGRAMS IS COMPLETELY VOLUNTARY. THAT IS, THE PATIENT/FAMILY MUST AGREE TO THE PROPOSED ALTERNATIVE BEFORE ANY TRANSFER CAN TAKE PLACE. IF THEY DO NOT WISH TO PARTICIPATE THERE IS NO PENALTY AND THE SUBSCRIBER WILL CONTINUE TO RECEIVE HIS REGULAR INSURANCE BENEFITS. OF COURSE, THE ATTENDING PHYSICIAN MUST WRITE THE TREATMENT PLAN. THE BLUE CROSS CASE MANAGER IN NO WAY WILL ATTEMPT TO TAKE OVER THE MEDICAL MANAGEMENT OF THE CASE. THEY MAY SUGGEST ALTERNATIVES AND WILL MONITOR ONGOING CARE, BUT THEY WILL NOT TAKE OVER THE PHYSICIAN'S ROLE. AT PRESENT, MOST OF OUR PLANS ARE RUNNING SIMILAR PROGRAMS BUT THEY MAY VARY ON SOME POINTS. WE ARE PRESENTLY IN THE PROCESS OF DEVELOPING A NATIONAL MANAGED CARE PRODUCT WHICH WE HOPE WILL ASSIST PLANS IN PROVIDING A CONSISTENT PROGRAM THROUGHOUT THE COUNTRY. SINCE OUR ACTIVITIES ARE GOVERNED BY THE STATE INSURANCE COMMISSION, SOME PLANS HAVE BEEN DELAYED IN THEIR IMPLEMENTATION BY THE APPROVAL PROCESS. SINCE ALL SUBSCRIBERS WILL HAVE SOME TYPES OF LIFETIME BENEFIT MAXIMUM IN THEIR POLICIES, THERE WILL BE CASES IN WHICH THE PATIENT WILL RUN OUT OF BENEFITS. IN THESE CASES THE CASE MANAGERS WILL NEED TO WORK CLOSELY WITH THE FAMILIES TO FIND APPROPRIATE AND SUFFICIENT FUNDING THROUGH OTHER PRIVATE AND PUBLIC SERVICES. 272 WE EXPECT THAT THE CASE MANAGERS WILL KEEP THE FAMILY AWARE OF THE REMAINING BENEFITS AND WHEN THEY MAY RUN OUT. COMPLETE RELIANCE IN PRIVATE INSURANCE WILL NOT SOLVE THE PROBLEM. A COMBINATION OF PUBLIC AND PRIVATE FUNDING IS NEEDED FOR TECHNOLOGY DEPENDENT CHILDREN ‘IF THIS POPULATION IS TO BE FULLY CARED FOR OVER THE LENGTH OF THEIR ILLNESS. AS OUR TECHNOLOGY PROGRESSES WE WILL UNDOUBTEDLY SEE MORE CASES IN NEED OF SPECIAL SERVICES. WE AR NOT PREPARED TO PAY FOR CARE WITH UNLIMITED COSTS OF FOR AN UNLIMITED PERIOD OF TIME. HWE ARE ENCOURAGED BY THE PROGRESS MADE BY THE FEDERAL AND STATE GOVERNMENTS IN ADDRESSING THESE ITEMS. WE ARE NOT LOOKING FOR A GOVERNMENT BAIL OUT AS MUCH AS WE LOOK FOR A COMPLEMENT OF SERVICES AND BENEFITS. THANK YOU FOR YOUR ATTENTION. IF YOU HAVE ANY QUESTIONS, I WILL BE HAPPY TO TRY AND ANSWER THEM. 273 OUTLINE Presentation to Task Force on Technology Dependent Children Department of Health and Human Services Pentagon City, Quality Inn Arlington, Virginia INTRODUCTION BCBSA, PLANS AND ROLES IN GENERAL Oo The Blue Cross and Blue Shield Association is the national coordinating organization for the 77 Blue Cross and Blue Shield Plans. Plans protect over 75 million Americans with health benefits programs, including about 9 1/2 million elderly Americans enrolled in Medicare supplemental programs. Plan own or operate 90 HMOs and 52 Preferred Provider Products covering 10 million members and are leaders in offering managed care programs covering another 5 million subscribers. 0 Blue Cross and Blue Shield Plans cover a comprehensive range of health care service for medically necessary inpatient and outpatient care. Plans also offer a full range of health benefit products - health maintenance organizations, preferred provider arrangements, managed care products, dental and drug benefits. QUESTIONS OF CONCERN TO TASK FORCE 1. ‘How does the Blue Cross and Blue Shield organization view the issue of providing services to technology-dependent children? o Blue Cross and Blue Shield Plan health benefits are provided to covered Members for medically necessary care. Plans provide contract benefits purchased to all eligible Members - including technology-dependent children and adults. o Plans provide access to cost-effective quality medical care for its Members - including covered technology-dependent children. o Basic Plan benefits cover a comprehensive range of services: - inpatient diagnosis and treatment, drugs, therapies - medical professional services - outpatient services - surgery, tests, therapies - Skilled Nursing Facility - Home Health Care - Hospice Services 274 2. How does the Blue Cross and Blue Shield Organization view providing in-home care? o Blue Cross and Blue Shield Plans support in-home care as cost-effective, appropriate and desirable from the patient's view. Some Plans have offered home care benefits for as long as 30 years. In 1974, the Blue Cross Association issued a model benefit description and policy statement encouraging Plans to offer home coverage. Today, virtually all Plans offer home care coverage. Home care benefits generally cover a range of needed services: - doctors’ visits - nursing visits - therapies - physical, occupational, speech, respiratory - home health aide visits - medical social services - nutritional and dietary assistance - lab and x-ray - durable medical equipment - home drugs Now many Plans also cover home chemotherapy, antibiotic therapy, parental and enteral nutrition. Home care benefits have limits and eligibility requirements: - days or visits or dollar limits - requirement that patient be essentially homebound - patient needs intermittent care only - patient is under care of participating Plan provider and under care of a physician - patient needs therapeutic and restorative home care - custodial care is excluded 275 3. How does the Blue Cross and Blue Shield organization address these issues and future innovations? 0 Plans and the Association continually assess health benefits and products because of: - new techniques and technologies - new providers and provider arrangements - cost management priorities - new products - e.g., PPOs and Managed Care - competition o Plans and Association have systematic and organized approach to changes in health delivery and members needs. - frequent and ongoing reassessment because health and home care rapidly changing - use Blue Cross and Blue Shield Association system's extensive data to evaluate benefits, identify trends, monitor utilization - Association's Technology Management Department responsible for: recommending medical policy assessment of new technology medical policy guidelines - work with professional associations and provider organizations o Plans' local base and presence and working relationship with local providers and subscribers situates Plans to test coverage of new home care and other services and learn how to manage the cost of these services. o Plans refine existing benefits to cover comprehensive outpatient care and to provide appropriate alternatives to inpatient care. - e.g., have a standard hospice benefit for national accounts mental health benefits including outpatient services coverage of home infusion therapies o Refine benefit management tools to meet Members needs and to manage health care costs - individual case management is a new innovative part of utilization management Managed Care activities - stretch coverage limits to meet patient needs and provides alternative to continued inpatient care 276 4. Is Case Management the best answer for stretching coverage? o Individual Case Management (ICOM) comparatively new program and part of a comprehensive benefits management approach. IM meets needs of special cases most comprehensively and in the most organized and cost-effective manner. = Is part of an overall utilization and benefit management strategy which includes preadmission review, concurrent review and discharge planning. After cases are identified and evaluated, IOM can stretch contractual benefits and provide appropriate and desired care out of a hospital. Blue Cross and Blue Shield Plans experience with IM: - 55 Plans (70 percent) have some case management activities as part of their Managed Care products - experience of most new - most less than one year old - programs focus on high cost, catastrophic accident and illness cases - Plans use criteria to identify and approve care Member must need - medically necessary skilled care in lieu of hospitalization - alternative treatment plans are developed by patient's attending physician in conjunction with the patient/family, discharge planner, social worker, home health agency, etc. - alternative treatment setting is voluntary for member /family - experience is that actual caseload remains small - depends on program focus, criteria, availability of care - most cases are catastrophic care - ventilator - dependent, home infusion therapy - many Plans with programs manage Federal Employee Programs cases 277 5. How is case management best managed? o Effective Case Management requires: comprehensive and organized approach, with flexibility firm contractual basis with goals, criteria and limits defined adequate identification and screening of potential patients network of qualified providers available, including for emergency care identified adequate community resources and support assistance for strong and healthy family environment systematic monitoring of patient care and condition family education and support coordination of multitude of services and supplies good communication between all parties (including payor) comprehensive benefit structure with flexibility for case management Problems and challenges in managing individual cases determining when and how to end cases, e.g., when benefits are exhausted. Need to determine this up front and in advance of approving case. handling long term custodial care provision for transferring cases to other funding sources when there are no longer benefits (exhausted) or when insurance is not continued/dropped lack of qualified or appropriate providers, e.g., in rural areas physician unfamiliarity and discomfort with home setting family/home social, economic or emotional problems 278 6. 7. What are the requirements of the case manager? An effective case manager must have: What are o authority to handle cases appropriate background and experience - background medical and/or social work good communication skills knowledge of alternative providers and their ability to handle complex cases ability to interact with patient/family and numerous providers and voluntary agencies knowledge of community resources ability and skill as a problem solver seen as barriers to appropriate care and services? Barriers in health care coverage - structured and limited coverage and coverage requirements - coverage limitation, e.g., custodial care, support services, and respite care not covered - inadequate coverage for outpatient care - financial barriers - some patients cannot pay - copayments, deductibles and other out-of-pocket payments Barriers in access to appropriate care - medical community comfort with and emphasis on inpatient care - lack of or lack of access to qualified providers of high technology home care, skilled nursing facility care etc. - fear of malpractice cases in out-of-hospital settings - case management and technology-dependent services are labor intensive and difficult to manage - lack of available qualified staff at all levels and of qualified managers 279 Barriers in patient's environment - family fears and need for strong and adequate training and support - social/economic factors in family life - lack of resources and income to provide share &f care - no national standards for home care, especially for high technology services - family physical or emotional abandonment of children with long term hospitalization 280 RECOMMENDATIONS FOR APPROPRIATE JOINT PUBLIC/PRIVATE INITIATIVES 0 Collect and disseminate accurate information to providers and insurers on the costs and effectiveness of in-home or SNF care, on types of providers, and on quality issues. o Support efforts to identify and monitor quality providers of specialized care. o Disseminate information on public funding to advise patients of availability of public sources payment of costs of care. o Provide public funds and direct services for custodial and supportive care for technology-dependent children. o Support local initiatives and pilot programs for coverage and management of benefits. o Continue support for development of alternative care arrangements. 281 (213) 660-2450 DEPARTMENT OF PEDIATRICS School of Medicine ) University of Southern California DIVISION OF NEONATOLOGY AND PEDIATRIC PULMONOLOGY — DEVELOPMENTAL LUNG BIOLOGY CENTER Faculty: Arnold C.G. Platzker, M.D., Head Angela D. Ramos, M.D. Thomas G. Keens, M.D. Cheryl D. Lew, M.D. David Warburton. B.Sc., M.B., C. Michael Bowman, Ph.D., M. Henry Jay Forman. Ph.D. Raymond J. Dorio. M.D. Sally L. Davidson Ward, M.D. Postgraduate Fellows: Lance Parton. M.D. Meena Garg. M.D. Sharon Kurzner, M.D. Jerry Schwartz, M.D. David Bader. M.D. , Michael Flavin, M.D. Manuel Ortega-Elias, M.D. M.R.C.P. D. dministratire Assistant Sharon Lau. M.S. Infant Assessment Coordinator Toni A. Nield. RP.T. MA. . Pediatric Nurse Practitioner Lucy Ann Kunzman, RN, M.S., C.P.N.P. Ambulatory/Home Care Nurse Mary Jansen, L.V.N. Clinic Nurse Imelda Domingo. L.V.N. Social Workers Ann Atia. MSW. Karyn Spear, M.S.W. Bioengineering/Technical Director Charles W. Sargent, BS.B.M.E. Chief Pulmonary Physiology Technician Michael W. Stabile, M.S., C.C.P.T. Coordinator of Pulmonary Research Daisy B. Bautista. B.S. Administrative Office (213) 669-2101 Neonatal Intensive Care Unit (213) 669-2531 Pulmonary Physiology Laboratory (213) 669-2162 Sleep Laboratory 213) 669-2162 -onatal Followup Clinic (213) 669-2162 Pulmonary Consultation Clinic (213) 669-2162 Basic Science Laboratory (213) 660-2450 ext. 2683 Emergency Calls — evenings and weekends (213) 660-2450 CHILDRENS HOSPITAL OF LOS ANGELES 4650 SUNSET BOULEVARD LOS ANGELES, CALIFORNIA 90027 MAILING ADDRESS: P.O. BOX 54700 LOS ANGELES, CALIFORNIA 90054-0700 April 16, 1987 Mr. Bill Pickens Executive Director Task Force on Technology-Dependent Children Health Care Financing Administration Department of Health and Human Services Room 4414 HHS Building 330 Independence Avenue, S.W. Washington, D.C. 20201 Dear Mr. Pickens: I am enclosing a copy of testimony that | would like to present before the Task Force * on Technology-Dependent Children at its hearing on May 7, 1987 at the Pentagon City Quality Inn, 300 Army-Navy Drive, Arlington, Virginia. As Head, Division of Neonatology and Pediatric Pulmonology at the Childrens Hospital of Los Angeles since 1973, | have had long experience in dealing with the care of these children and have been interested in the barriers these children and their families experience when attempting to make a transition from the hospital setting to home. I would like to share this experience, and my concerns and suggestions with the Task Force. | believe that this testimony represents a consensus of the opinions at our institution and reflects the sentiments of the membership of our Western Association of Childrens Hospitals. I am anxious to appear before the Task Force to present this testimony in outline form, to address any questions it may raise and to elaborate on possible solutions to some of the overriding problems the technology-dependent child and his family experience at the present time. Sincerely yours, OF ed Arnold C.G. Platzker, M.D. Head Division of Neonatology & Pediatric Pulmonology Childrens Hospital of Los Angeles ACGP:kd 282 stimony-—-Arnold C.G. Flatzker, MD sk Force on Technology-Dependent Children shington, D.C.--May 6, 1987 TESTIMONY to the Task Force on Technology-Dependent Childré&n May 6, 1987 Arnold C.G. Platzker, MD Head, Division of Neonatology and Fediatric FPulmonology Childrens Hospital of Los Angeles Doctor Kettrick and distinguished members of the Task Force: I am pleased to have been invited to address the Task Force. Childrens Hospital of Los Angeles, like the other member hospitals of the Western Association of Childrens Hospitals, is a major pro- vider of tertiary pediatric health care. As such, we provide 85,000 patient days of acute hospital medical and surgical care per year and over 90,000 ambulatory visits per year. An increasing portion of infants and children referred to our hospital have or will develop a chronic disease process for which complex ongoing care will be required. We have been engaged in all phase of the care of these children. We have found that the most challenging and rewarding aspect of their care is the formulation of a successful discharge and home care plan. With the development of new medical treatment options for children with problems previously not treat- able outside of an acute care setting, a new initiative has been 283 Testimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6, 1987 undertaken to move the chronic care of these children to an out of hospital setting. In particular, this approach to the care of children with chronic illnesses has been motivated with the goal of pediatric health care providers to treat the "whole child"; to pro- vide an environment in which the child will experience the optimal growth and developmental potential while assuming a rightful place within the family unit and the community. I will address the issues of specific concern to us in the context of the questions posed by the Task Force. TASK FORCE QUESTIONS: 1. What is your Association's position on the growing movement to provide care at home for technology-dependent children? Are there issues unique to hospitals in your membership’'s and similar areas of which we should be aware? a. As health care professionals dedicated to the task of providing the best possible medical care to children with complex disorders, we are strongly supportive and enthusiastic about this movement. Our philosophy of pediatric care places equal emphasis on the needs of the "whole child" and the immediate and continuing care of the child's medical condition. Even under the best of cir- cumstances, the acute care hospital by virtue of its mission is unable to provide an optimal day-to-day environment for the devel- opmental and social needs of infants and children who are chroni- cally ill or disabled but who are in relatively stable condition 284 ‘'estimony--Arnold C.G. Flatzker, MD ‘ask Force on Technology-Dependent Children lashington, D.C.--May 6, 1987 and, thus, can be graduated to a "lower" (i.e. less intensive) level of care. In order to provide the best environment and poten- tial for rehabilitation, the chronically ill infant and child should be returned to the home when acute hospital care is“no longer necessary. At this point the care of the "whole child" can only be satisfactorily met in a home-like setting which permits integration of the child into the family. b. Newer therapeutic and supportive techniques allow a greater degree of functional potential for independent living by the child with chronic disease and/or disability. An added benefit of home care is the relief the child and his family experience from the total dependence on the acute care hospital. Therefore, when a child's condition can be stabilized, even with the use of mechani- cal and/or technical assistance, the child may be graduated from the acute hospital setting. The child has then become an apptroptri- ate candidate for transfer to the least restrictive environment which provides the maximum opportunity for the highest degree of function. Thus, the home care option naturally increases, when the family demonstrates the motivation and capability of mastering the skills of home care and proficiency in the use of the technological support systems required for home care. C. Home care of children requiring chronic ventilator sup- port, and other children with complex medical care requirements, can be performed safely and relatively inexpensively and certainly less expensively than chronic care in the acute hospital. Many parents are highly motivated to care for their children at home. Home care of these children can be done safely from a medical standpoint. Advantages of such a management approach include: 285 Testimony—-—-Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6, 1987 optimization and improvement of psychosocial development; integra- tion of the child into the family and the community; improved developmental function; and at times unexpected improvements in medical status presumably from the salubrious effects of a nonin- stitutional environment. However, small children are more fragile physiologically than older children, adolescents and adults. Consequently, while home care of medically complex children, especially those dependent on ventilator assistance, can be managed safely, these younger chil- dren are particularly vulnerable to rapidly evolving life- threatening medical emergencies. Therefore, the success of home care is dependent opon a fairly intensive and skilled level of care provided by a well-trained home care team (including the parents). The potential for success of this program improves when there is regular monitoring of the patient's progress and supervision of the quality of home care by visiting health care team members. A multidisciplinary collaboration is necessary to assist in the transition of the medically complex or technology dependent infant or child from the hospital to the home. An experienced and expert health care team is the key to the successful management of these children. In addition to committed and motivated parents, specific components of this health care team include, but are not limited to: the staff (medicine, nursing and allied health profes- sionals) based at a pediatric tertiary care center, each member with experience and expertise in the care of, the discharge plan- ning for, and the ongoing outpatient care of these children; commu- nity based vendors of appropriate durable medical equipment (port- able ventilators; other respiratory care equipment; cardiorespira- 286 ‘estimony—-—Arnold C.G. Flatzker, MD ‘ask Force on Technology-Dependent Children lashington, D.C.--May &é, 1987 tory monitors; intravenous and feeding pumps) and disposable sup- plies. These vendors must have a "special" commitment to provide for the round-the-clock needs of technology-dependent children. Home health assistance from skilled nursing, homemaker aides, developmental therapy, and social work are required for the compre- hensive care and treatment of these infants and children. A school system committed to the reintegration of these children is essen- tial with both home-based and school-based education serving the needs of these children at different stages of their rehabilita- tion. d. The increased cost of providing the pediatric services for chronically ill and disabled children compared to the cost of providing these services for disabled adolescents and adults or for custodial care of severely cognitively impaired patients is due to the increased needs of young children for closer health care supervision and monitoring, and to the necessity of fairly inten- sive developmental therapy. Infants and young children who have normal or near normal cognitive potential have need of more than basic physical care in order to achieve their optimal potential. The increased cost of this care, in our experience, still repre- sents a much lower overall cost than continued acute care hospital- ization. In those instances in which the costs may be equivalent in either setting by virtue of cost contracting for hospitaliza- tion, the ultimate benefits to the individual patient clearly weigh in favor of home care. Therefore, we believe that these costs should be accepted in view of the ultimately improved function of medically complex child receiving home care and the potential for a more full and active participation in the family and community. 287 Testimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6&6, 1987 e. By virtue of the unique and changing physiological needs of medically complex children, certain types of durable medical equipment, in particular portable, battery powered ventilators must be adapted to use in the home. At present, due to low market share, Ventila- tor designers and manufacturers have been reluctant to devote suf- ficient research and development effort to the special requirements of ventilator dependent infants and children. As a consequence, there are relatively few portable ventilators which can be adapted to the needs of the small infant and child. The available ventila- tors lack desirable and even necessary versatility and safety fea- tures (alarm systems, pressure limit valves, etc.). If manufactur- ers are not impelled by altruism, then we believe that other incen- tives are necessary to encourage manufacturers, singly and/or col- lectively, to divert a portion of effort into R & D programs for pediatric patients. 2. How do you view the expansion of more and more previously hospital-based procedures being performed at home, e.g., out-patient chemotherapy, infusion, IV therapies? a. We believe that the acute care hospital setting is appropriate for management of critically and acutely ill children during a phase of illness associated with rapidly changing care needs when there is a high risk of life-threatening complications. Children usually recover rapidly and can be discharge home quickly, but some children enter a phase of chronic illness or prolonged convalescence during which often specialized, but non-acute care is required. Children suffering from chronic, often congenital, con- ditions frequently experience a long course of rehabilitation punc- 288 estimony—--Arnold C.G. Flatzker, MD ask Force on Technology-Dependent Children ashington, D.C.-—-May 6, 1987 tuated by episodes of acute illness during which hospitalization will often be necessary. Thus for the growing child, even one with chronic illness, the advantages of the least restrictive environ- ment, the environment (if not home) the most like home canmot be overstated. b. Children who are otherwise ambulatory without need for continuous health supervision/monitoring but who require continuing or intermittent forms of therapy such as intravenous therapy (anti- biotics, chemotherapy, total parenteral nutrition) are appropriate candidates to have this care delivered in the home. Home based therapy is less disruptive to the lifestyle of the older child, especially with regard to school attendance and other activities important to social and developmental growth. Home based therapy is also less disruptive to normal family life and minimizes separa- tion of the child from family life. It is clearly less disruptive to the lives of their parents and other their siblings. Home care is cost-effective, since the use of hospital care is minimized. An added benefit of home care to the community is that numbers of hospital beds needed are contained or even reduced. Ce. Many families are motivated and committed to acquiring the additional skills and to tolerating what inconvenience is involved in a home program. However, the intrusion of home care programs into family life is real] and must be recognized. In addition, some fam- ilies, regardless of how motivated and committed, have inadequate emotional and material resources to cope with home therapy even with maximal support from health care professionals and community sources. Therefore, the planning and delivery of a treatment pro- gram for the chronically ill, technology-dependent child must be 289 Testimony—--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6, 1987 individualized to the needs of each patient-family unit. Those families able and willing to enter into a home care program should receive the utmost in support both psychological and financial in order to maximize the chances for success. Those families, on the other hand, who are not sufficiently organized, chronically stressed and unable to cope, should be offered similar support in maintaining their medically needy children in alternate settings. These alternate settings include: the acute hospital if need be; the outpatient clinic setting with capability of delivering such care; pediatric transitional care facilities; and finally medical foster placement for the most desperate situations. I. What is the role of State/Federal regulations in achieving change that will increase care options for this population? The State and Federal governments can and must play a major role in facilitating quality, cost-effective non-acute hos- pital care options for the care of the technology-dependent child. a. Minimum standards must be established for each category and type of service which can be provided at home in order to ensure that home care is undertaken safely and results in the best possible outcome for the children involved. The issue of quality of the service and the professional care must be addressed. Regionalization of the medical management and obligatory case man- agement of care these children would promote adherence to the stan- dards for home care. However, sufficient flexibility within the system would be necessary to permit individualization of care plans 290 sstimony--Arnold C.G. Flatzker, MD isk Force on Technology-Dependent Children ashington, D.C.--May 6&, 1987 without sacrifice of quality. The case management system must also be efficient and "user friendly" so that planning and implementa- tion of home care can be timely and cost effective. Discharge of the technology dependent child should not be delayed for 3 months or more by bureaucratic delays in obtaining approval for and fund- ing of home care nursing. Finally, the case management system should be responsive to the continuing changes in care and treat- ment for chronic medical conditions so that newly developed advances in care, whether technology-based or not, can be imple- mented in the home environment on a timely basis. b. Currently, family access to funding for home care is unevenly distributed. Many insurance carriers refuse to address or provide for any sort of home care benefits, preferring instead to cover only hospitalization costs. In many cases, this stance results in the paradox of prolonged hospitalization (at greater expense) of some children who could be discharged at an earlier time if their families had use of durable medical equipment or assistance from home health care providers. Of those insurance carriers who provide some home care benefits, some refuse to pay for durable medical equipment (either rental or purchase), others refuse in-home shift nursing assistance, or have lifetime limits which are unrealistically low for those few children who have significant chronic illness or disability (particularly those children requiring chronic ventilator support). State and Federal regulations are needed to define and mandate min- imal home care benefits to be provided by the insurance industry. These minimal benefits should be determined according to diagnostic groups and age groups. Benefits should also be adjusted for the individual patient’s needs. 291 Testimony—--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6, 1987 [= Government funding plans are as inequitable as private insurance plans. An additional problem with government "coverage plans" is that while some home benefits are available, the applica- tion procedure is frequently convoluted and time consuming. In particular, the procedure is virtually Gothic when applied to chil- dren with high technical support needs, often requiring many months of continuous negotiation at many levels of bureaucracy as the per- sonnel and rules are in constant flux. We would expect that any guidelines set for private insurers concerning home care benefits would apply equally to government payors. Further, we would hope for and expect that some effort be initiated to decrease the intrinsic costs of a complicated, obtuse, frustrating, lengthy application process. 4. What do you see as barriers to appropriate care and services for technolology-dependent children and their families? What would you recommend to overcome these barriers? While the overriding barrier to appropriate care and ser-— vices for these children and their families rests with the inade- quacy of the present funding for home care, there are quite a num- ber of other barriers to home care of these children: Qa Under the best of circumstances, all families of children with chronic illness experience considerable stress. Although most parents, with adequate support from the hospital based health care team members and from community resources, are able to partici- pate fully in the discharge planning process and to take their children home, some family units are unstable, incapable or unable to tolerate the stress associated with the home care of the tech- 292 estimony--Arnold C.G. FPlatzker, MD ask Force on Technology-Dependent Children ashington, D.C.--May 6, 1987 nology-dependent child. These families are unable to participate in the planning and preparation necessary for their children to return to home care even when in-home health assistance will be provided. Some of these families will be permanently unable to cope with the .-needs of their children; others may only express tem- porary reluctance and with time will accept the concept and responsibility of home care of their child. Some alternative steps to home care can potentially ameliorate the stresses of discharge planning for families tempo- rarily unable to cope. These include: 1) Development of pediatric transitional care facilities which bridge the gap between hospital and home by permitting the discharge planning and home care training to be accomplished in an environment which is more home like and comfortable for both patient and family. 2) Short and long-term medical foster care by experi- ence, well-trained foster families who are also experienced and committed to promoting of ongoing contact between patient and bio- logical family. In order for this much desired option to be prac- tical for the numbers of patients who would benefit from it, there must be a concerted effort, particularly on the part of government agencies, to recruit, train and fund additional foster homes. JF) Community based group homes are less desirable for young infants and children for whom a "family" environment is key to normal cognitive and social development. However, such homes have been successful for adult patients and nay be an appropriate alternative for older school age children and adolescents. The primary barrier to any of these sorts of undertakings is 293 Testimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.—--May 6, 1987 the difficulty in access to funding. It is desirable that insurers and government payors recognize that these options are cost effec- tive, but more importantly, lead to improved function and long-term outcome for chronically ill children if circumstances do not permit returning them immediately or ultimately to their own homes. b. Once a medically complex child is successfully discharged home there are significant barriers to keeping him at home. The child will require close outpatient follow-up. Even with the best of care by parents and home health professionals, these children experience intercurrent illnesses which require close medical moni- toring and attention. The more severe illnesses will cause the child's clinical condition to become sufficiently unstable so that the monitoring and care requirements may exceed the resources and capacity of home care. Then, rehospitalization will be necessary. However, particularly as these children grow older, many of these illnesses can be managed on an outpatient basis under the close supervision of physicians and other health care professionals familiar with the needs and special problems of these children. For children who reside in the vicinity of pediatric tertiary care centers, the management of interval illnesses and rehospital- izations is usually not difficult to arrange. However, those chil- dren who are many miles distant from tertiary care centers must rely on immediate community resources. We have found that those community resources (private pediatricians, emergency care centers, paramedics, etc.) are frequently: 1) unskilled in handling the immediately or even short-term care of these children; 2) unwilling to consult with tertiary care centers when presented the need for giving emergency care for these children; 3) unwilling to provide 294 stimony--Arnold C.G. Flatzker, MD sk: Force on Technology-Dependent Children shington, D.C.--May 6, 1987 even a modicum of pediatric care for these children (e.g. routine immunizations) because of an unwillingness to accept government insurance reimbursement; 4) unwilling to provide the additional time and effort that the pediatric care of these complex children require. Consequently, these children often must rely completely on tertiary care center staffs for all of their care, general pediatric as well as subspecialty care. C. Families who are successful in caring for their children at home find innumerable, unanticipated stresses and disruptions in their own lives. This is particularly true of those families who have in-home health assistance. These families are subjected to the intrusion of nurses with a variable commitment and skill in the care of children and especially the technology-dependent child. Due to the stress of caring for these children and the lack of a positive professional image to home-care nursing, the nurses change frequently and the continuity of care is interrupted. Even under the best of circumstances, nursing shifts are often uncovered due to unexpected circumstances, leaving the families with additional care burdens. Because of the variability in quality and availabil- ity of nursing staffing in the home, parents often find themselves the most consistent, well-trained and skilled caretakers of their child. The parents must also monitor the skills and activities of the various shift nurses to assure compliance with the care plan and to maintain consistency of care. This situation places the parents in an adversarial position with the very personnel who have been recruited and employed to help reduce the stress of having the chronically ill child at home. Such an atmosphere of contention results in increased turnover of nurses and additional stress for 295 Testimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May 6, 1987 the family. Of course, not all parent-nurse relations are so difficult. Even when relations are fairly good, there is still loss of privacy and the sense on the part of the family that they must live with strangers. Ferhaps out of defense, family members may look upon their nurses as friends and family members. This may result in difficulties with compliance with the management plan as the parents and nurses are mutually unable to assess the child's condition objectively and, thus, are unable to implement accurately the physician's orders. d. A major consequence of the continuing disruption and stress of caring for the chronically ill and disabled child is the inter- ference with the life and career options of family member. Frequently family members become ambivalent over having to forego a normal lifestyle for the daily chore of caring for a chronically ill loved one. This leads to problems in school or the workplace, excessive fatigue, incessant worry, feelings of being chronically neglected, and guilt over having ambitions which have been set aside because of the need for participating in the care of the sick child. Because funding options are sparse and convoluted in appli- cation, many families are restricted in the job market because of fears of losing much needed insurance coverage. A family may be inhibited in acquiring some of the moderate accoutrements of "the good life" such as.a modest house, some savings, and other assets because government payors make their services contingent on the absence of these assets. Marital partners often find that the only way to keep home, family, and life intact is to seek divorce so that the child remains eligible for certain funding options not possible in the "legally intact" family. 296 stimony--Arnold C.G. Flatzker, MD sk: Force on Technology-Dependent Children shington, D.C.--May 6, 1987 e. Even with the optimum of home support, family members require periodic respite from the emotional and physical demands of providing care for their chronically ill children. The opportunity to have a "vacation" away from the situation is severely limited eveh if the child has home nursing care. There are often difficulties about garnering the additional funding necessary to ensure adequate nursing coverage for the family vacation. Ironically, in California, the MediCal program provides 24-hour/day in-home nursing assistance for 2-4 weeks per year for medical foster parents of ventilator dependent children so that the foster parents can have some respite. However, biological parents of such children who are covered under MediCal are not allowed similar services. Needless to say, lack of respite care results in parent burnout and may result in unnecessary rehos- pitalization when the parents become too emotionally and physically exhausted to provide safe and reasonable care for their disabled children. f. Medically complex children frequently require a variety of home care equipment and supplies to be used with them. Some of the equipment is essential for life support (e.g. ventilators, oxy- gen); virtually all of the equipment in use in the home is essen-— tial for the ongoing care of these children. Since the equipment may malfunction, it is desirable to have duplicates of the most critical pieces of equipment for back-up and ready access in the event of an equipment malfunction. Malfunction can be minimized by regular maintenance and servicing. Most vendors are willing to provide maintenance service. However, many insurers and government agencies do not appear to understand the need for regular preventa- tive maintenance and for "back-up" of the most critical types of 297 Festimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May &, 1987 equipment. Even if the payors approve the initial rental or pur- chase of equipment, they are frequently unwilling to provide for duplicate spares or to pay for the necessary service contracts. In the rare event of loss of certain equipment through "Acts of God"--e.g. theft or house fire or accident, a very lengthy rea- Prplication process may precede replacement of the equipment. Under these circumstances, children dependent for survival on these tech- nological support hardware items may be rehospitalized at consider- able expense while awaiting their replacement. It would behoove insurers to routinely provide mainte- nance contracts (surely cost effective in the long run) and to expedite replacement of critical life support items when necessary. 9. A final barrier to the return of medically complex children into the community perhaps reflects poorly on the prevalent attitudes in our society towards the medically disabled. Many of the children who are medically complex and dependent on technical support systems for survival, are nevertheless of high cognitive function. These children should be "mainstreamed" since they have good potential for becoming productive members of their communi- ties. The initial barrier to this potential is the difficulty of achieving school entrance, even if academically gifted. School administrators and educators are often unwilling to accommodate the special needs of these children by arranging classes in locations that are wheelchair accessible and by not permitting patients who have a chronic tracheostomy or a feeding tube to attend "regular" school. Families of these children are frequently informed that it is permissible for their child to attend the one school in the dis- trict designated for handicapped students. Such schools may be 298 stimony-—-Arnold C.G. Flatzker, MD sk Force on Technology-Dependent Children shington, D.C.--May &, 1987 quite distant from the family home. The "gpecial schools" are often less than adequate for college preparatory students who are bright and ambitious though having the misfortune of a chronic med- ical problem which does not substantially interfere with academic performance, though it limits their mobility. Segregation of medi- cally complex children of normal cognitive function from the main- stream makes for a less enriched and varied environment for all children, depriving the "normal" children of the opportunity and the experience of interacting and learning to understand and befriend the child with a handicap. These experiences are equally important to the "normal" and the handicapped child as they form the basis of future interactions of these children with individuals who are "different" from themselves. Implementation of the "least restrictive" experience for these children should mean full inte- gration where possible and not "separate but equal.” CONCLUSIONS: We believe that the home care of medically complex children presents the following benefits for the children, their families and their communities: 1. Normalization of growth, development and family life for these patients. 2. Resultant improved long-term function and potential productivity of these patients. 3. Is cost effective in terms of health care expenses. Accordingly, we believe that a considerable effort is warranted to remove the funding and logistical difficulties which represent barriers to the return of these children to home and community. 299 Testimony--Arnold C.G. Flatzker, MD Task Force on Technology-Dependent Children Washington, D.C.--May b, 1987 These remarks were prepared with the assistance of: Cc. Thomas G. Cheryl D. Sally L. Mary Jansen, a: tskforc4.3I87 Michael Bowman, MD, FhD Keens, MD Lew, MD Davidson Ward, MD LVN 300 DEPARTMENT OF DEFENSE OFFICE OF CIVILIAN HEALTH AND MEDICAL PROGRAM OF THE UNIFORMED SERVICES AURORA, COLORADO 80043-6900 APR 17 1987 Mr. Bill Pickens Executive Director Department of Health & Human Services Task Force on Technology-Dependent Children Room 4414, BHS Building 330 Independence Avenue, S.W. washington, D.C. 20201 Dear Mr. Pickens: Enclosed for your information are my planned remarks for the May 7, 1987, meeting of the Task Force on Technology-Dependent Children. I look forward to seeing you at the meeting. Sincerely, LD thats Jimmy D. Helton Colonel, USA, MSC Director Enclosure 301 Comments Before the Task Force on Technology-Dependent Children by Colonel Jimmy D. Helton, USA Director Office of the Civilian Health and Medical Program of the Uniformed Services Thank you for giving me the opportunity to meet with you today to discuss the Civilian Health and Medical Program of the Uniformed Services (CHAMPUS). I am representing Mr. David Newhall, Principal Deputy Assistant Secretary of Defense for Health Affairs, who could not be here today. CHAMPUS is a program of medical benefits provided by the U.S. Government under public law to specified categories of individuals, primarily dependents and retirees of the seven Uniformed Services. Although similar in structure in many of its aspects, CHAMPUS is not an insurance program in that it does not involve a contract guaranteeing the indemnification of an insured party against a specified loss in return for a premium paid. Our beneficiaries number more than 6.2 million. In Fiscal Year 1986, we expended over $1.7 billion and processed over seven million claims for medical care. Most of our claims are currently processed under contract by five well established health insurance organizations. A large number of our beneficiaries are children, and among this group are individuals who require a mechanical medical device to sustain life either in the home or institutional setting. I would consider these individuals to be among the population for which the Task Porce on Technology-Dependent Children was established. The benefits available under CHAMPUS to the patient requiring medical care in the home setting are extensive. Benefits include: --physicians' visits --skilled nursing care/visiting nurse services --rental or lease/purchase of durable medical equipment --medical supplies -=-drugs and medicines --physical therapy -=-occupational therapy --oxygen and oxygen equipment 302 The CBAMPUS benefit structure offers three different options for beneficiaries interested in receiving home health care. The CHAMPUS Basic Program offers outpatient benefits for skilled care received by patients whose care is noncustodial. The second CHAMPUS Program offering home care benefits is the Program for the Handicapped (PFTH). The PFTH is essentially a program of financial assistance for military personnel on active duty whose spouses or children are moderately or severely mentally retarded or seriously physically handicapped. Through this program virtually all skilled home care services, supplies, and equipment may be approved. However, benefits are limited, by law, to a maximum of $1,000 per month. The third program CHAMPUS has been authorized, by Congress, to implement is the Home Health Care (HEC) Demonstration from July 1, 1986 to July 1, 1988, for dependents of active duty members. HHC benefits may be approved when a determination is made that home care, including all medically necessary supplies and services required by the beneficiary, will be less expensive than ongoing CHAMPUS reimbursable hospital care. If approved, the BHC benefit may only be authorized for the period of time the patient would have remained in the hospital. This demonstration allows the cost sharing of homemaker services and home health care agencies that are approved by Medicare, JCAH, or other CHAMPUS-recognized accrediting bodies. Durable medical equipment and repairs may be authorized when ordered by a physician as necessary in the treatment of the beneficiary requiring transition from inpatient care to home care. All costs, except the amount in excess of the CHAMPUS determined allowable charge for professional services, will be paid by CHAMPUS at 100 percent of the cost of care minus the sponsor cost share of $7.55 per day. Our current plans for enhanced benefits for technology-dependent individuals are centered around the HHC Demonstration. The majority of the HHC Demonstration Program requests received since the program began are for technology-assisted children supported by ventilators, oxygen therapy, total parenteral nutrition, and intravenous antibiotic therapy. We are finding it necessary to disapprove a number of requests because the demonstration is limited to those cases in which home care is a substitute for hospital level of care. Although many of these children do not qualify for the HHC Demonstration, alternative home care benefits are available under the CHAMPUS Basic Program or the PFTH. The HHC Demonstration is a fledgling CHAMPUS benefit which provides the opportunity to examine alternative care environments for technology-assisted children. The five children and one adult currently participating in the Demonstration require the level of care usually provided only in an acute care hospital, but they are less expensive to care for at home. The challenge and opportunities are to provide comprehensive cost-effective health care within a nurturing home environment. 303 The HHC Demonstration is promoting early identification of high risk neonates who become our chronically ill and technology-dependent children. Early identification facilitates comprehensive discharge planning and case management to improve military families' access and utilization of the resources within the military community and networking with appropriate local, state, and federal community health and ®ducational resources and services. The barriers which exist for military families in obtaining appropriate care and services are perhaps no different than those barriers which exist for other American families. I would suggest, however, that military organizations have done an exceptional job in creating mechanisms to assist in overcoming these barriers. Military families with chronically ill, handicapped or technology-dependent children have special needs. To meet these needs and those of their families, military families need information, knowledge, support, accessible education and health care services, and financial assistance. There are numerous resources and services available to meet these needs within the military community and through networking with local community, state, and federal agencies. The availability of these resources and services may vary throughout the United States and overseas. For these reasons, CHAMPUS has launched an ongoing program to educate local Health Benefits Advisors (HBA), Commanders, Senior Enlisted Advisors, and beneficiaries about the benefits and limitations of the CHAMPUS programs. This educational effort strives to improve military families' knowledge and appropriate utilization of CHAMPUS Programs. The HBA is encouraged to establish and maintain contact with both military and civilian institutions and agencies and to offer information and assistance to CHAMPUS beneficiaries to facilitate their access to both military and public programs. The HBA is usually located on the military installation and is able to identify resources and provide technical assistance for military families with technology-dependent children. In coordination with the multidisciplinary medical and social service support from the Army's Exceptional Family Member Program, the Air Force's Children Have a Potential Program, and the Navy's Family Support Program and related military support services, the HBA can assist the military family to access and comprehensively utilize the available military and community health, education, and supportive services to overcome barriers and meet the needs of their chronically ill, handicapped, or technology-dependent children. 304 At this time children with special needs and their families are attracting attention at many levels of policymaking. In communities across the country, grassroots family resource programs and parent-to-parent networks are striving to support parents who are coping with the ordinary stresses of contemporary childrearing as well as families whoge children face special challenges. Military families face similar problems and special challenges. Military communities offer special support systems which are in addition to public and private resources available to military families as citizens of their local community. While some military organizations are mobilizing community-based resources to meet unique local needs, other groups are forming coalitions to press for widespread action to establish more adequate prenatal care and early identification of high risk pregnancies, increased family support services, and greater child care options. Overseas the DoD school system, in conjunction with the military community health and social services, are providing extensive programs for military children with special needs. There is an important military personnel effort to assign military families to overseas communities where services are available to appropriately meet the needs of their chronically ill or handicapped child. Military members may be compassionately reassigned to locations which appropriately support the needs of their family members. In response to such activities, but also out of independent recognition of the importance of the earliest years of life, a number of military communities are beginning to invest heavily in services for young children and their parents. Some have already incorporated health, education, and social services into coordinated systems of early intervention services for chronically ill and technology-dependent children. Military communities have also been revising child care standards for young children and those with special needs and are seeking to improve the training of providers. Several are mounting innovative prevention initiatives intended to reduce infant mortality and low birthweight, reduce the incidence of teenage pregnancy, and provide social support for young families. Some military communities are deeply involved in all three types of efforts designed to benefit children with special needs and their families. These initiatives represent practical efforts which need to be recognized and enhanced. Thank you for giving me the opportunity to express these views. In closing, I do wish to applaud the work of this task force to date and the goals you have established. While I do not have the answers needed to resolve the dilemma faced by the families of technology-dependent children across the nation, I do wish to offer this task force the assistance of my agency in solving one of the most difficult problems this country faces. Thank you. 305 TASK FORCE FOR TECHNOLOGY-DEPENDENT CHILDREN Panel: Private Insurance and Technology-Dependent Children: Access, Innovation, and the Role of State and Federal Regulation Panel Member: Jan Roughan, RN, BSN Product Manager Medical Case Management EQUICOR (Equitable HCA Corporation) 306 TECHNOLOGY DEPENDENT CHILDREN I ROLE OF COMMERCIAL CARRIERS A. Impetus for Involvement B. Action Plans C. Future Innovations II CASE MANAGEMENT A. Definition B. Process C. Substantiation III STATE/FEDERAL REGULATIONS A. Research B. Support C. Collaboration 0670A/atb 307 030387 3 DIGIT CODES 741 745 746 747 748 749 750 751 753 756 758 759 764 765 4 & 5 DIGIT CODES 741. 745. 746. 747. 747. 748 749, 750. 751 753 756 756 758. 759 764 765 .0 EQUICOR MEDICAL CASE MANAGEMENT (MCM) ICD-9 Profile: High Risk Infant 0 - 741.93 0 - 745.9 0 - 746.9 0 1 - 747.9 - 748.9 00 - 749.25 l - 751.9 .0 - 751.9 .0 = 753.9 .0 - 756.19 3 - 756.9 0 - 758.9 .0 - 759.9 .0 - 764.9 .0 - 765.1 NOMENCLATURE Spina Bifida Bulbus Cordis Anomalies and Anomalies of Cardiac Septal Closure Other Congenital Anomalies of Heart Other Congenital Anomalies of Circulatory System; Patent Ductus Arteriosus Congenital Anomalies of Respiratory System Cleft Palate and Cleft Lip Other Congenital Anomalies of Upper Alimentary Tract Other Congenital Anomalies of Digestive System Congenital Anomalies of Urinary System Other Congenital Musculoskeletal Anomalies Chromosomal Anomalies Other and Unspecified Congenital Anomalies Slow fetal growth and fetal malnutrition Disorders relating to short gestation and unspecified low birth weight 308 THE MEDICAL CASE MANAGEMENT (MCM) PROCESS REFERRAL PHASE: Sources include: Pre-Admission Review Employee/Employer/Dependent Eligibility Verification Source Claim Payment Source Health Care Provider(s) ne wn = SCREENING PHASE: MCM will: 1. Verify consistency with diagnostic profile 2. Verify claimant eligibility 3. Determine extent of financial liability and duration of coverage 4. Determine date of illness/injury and if possible, current medical status Advise referral source of acceptance/declination of referral with written substantiation for decision and a copy to client, benefit office, and field representative w ASSESSMENT PHASE: MCM will: 1. Contact claimant, family, and physician(s) 2. Ascertain current medical status 3. Obtain Authorization for Release of Information Form 4. Gather pertinent medical records 5S. Identify problem areas and/or needs 6. Establish MCM goals 7. Develop an action plan of suggested options to accomplish these goals 8. Substantiate that the action plan is both care-effective and cost-effective Prepare monthly Claimant Status Reports during assessment with a Comprehensive Individual Case Report at the end of the assessment phase and forward to client Oo INTERVENTION PHASE: MCM will: 1. Transfer claim records from Benefits Office to MCM office to manage claim payment from MCM office. Advise claimant and family of new procedure O090R/atb 309 071686 NOLL > WN Coordinate implementation of action plan Monitor progress and amend plan as needed Instruct claimant to forward all claims to MCM office Authorize and pay appropriate claims Prepare Claimant Status Report on a monthly basis and forward to client Prepare Client Summary Reports on a quarterly basis and forward to client CLOSURE PHASE: MCM will: 1. na wn [J Effect closure when there is no longer a need for further action and/or monitoring Advise client of rationale for closure Advise claimant of rationale for closure Transfer claim payment responsibility back to original Benefit Office Instruct claimant to resume sending all claims to original Benefit Office Pay bills to date and prepare and forward final Comprehensive Individual Case Report with inclusion of a Cost Benefit Analysis of the savings accrued to the client 0090R/atb 310 071686 Diagnosis High Risk Infant (see first case report) Medical History This claimant was born at a gestational age of 24 weeks. She required intensive care in the hospital for over six months. After discharge she was cared for in a home program suited to meet her needs and to promote optimal development. By January 15, 1986, total responsibility for the claimant's care was assumed by the parents. This was done with the physician's recommendations and approval. The claimant's current status includes: . Status post prematurity; developmental levels within normal limits of corrected age . Chronic lung disease; stabilized . Status post seizures . Status post heart failure; stabilized . Cleft palate of upper palate of mouth; resolved . Status post retinopathy; improving Tis claimant is developing and functioning at an appropriate level for hes adjusted age level. Her physician states she is ready to participate in day care services without unreasonable risk to her physical stability. All of the claimant's ancillary equipment and oxygen were discontinued by the physician. MCM Intervention Medical Case Management assisted this claimant in making the transition from hospital to home. This was difficult because she spent the first six months of her life in the hospital; five of those months she was on a ventilator. The parents and physician were unsure of how well the claimant could safely adjust to her new home. With Medical Case Management involvement, we promoted communication between parents, physician, and nurses. This was especially helpful to reduce the level of frustration by the parents. 2A Medical Case Management (oordinator home visit promoted more consistent care by the nursing agency and also clarified the parents' expectations for their daughter's care. Regular contact with the physician by Medical Case Management also assured the claimant was making progress. Equipment necessary for the claimant's care at home was also monitored to determine rental vs purchase and which would be more appropriate to the claimant's situation. Our involvement in the psychosocial aspects of this family wzs bzneficizl because of the claimant's prematurity and because of the father's severe burns (over 60% of his body) just one month before the claimant's birth. He was able to live at home but unable to participate in the care of his child or in any household chores. The mother worked full-time just to maintain the family budget. Medical Case Management offered emotional support to this stressed, anxious family. 0081C:kr/072286 311 (ost Benefit Analysis (November 3, 1985 - January 31, 1985) Studies done on high risk infant claim experiences in 1984 showed an average cost of $64,000 per case on non-MCM managed cases. In 1982-83, 472 non-MCM cases disclosed average costs of $67,437 per case. Our care plan reduces medical costs by providing the appropriate level of care and by assisting in stabilizing the home situation. Without Medical Case Management, this claimant's claims could easily have increased from prolonged hospital days, rehospitalization for respiratory infections, and shift LPN or RN care. The parents' psychosocial health was also at risk due to the tremendous emotional strains they were both under. This could have meant increased claims resulting from psychiatric treatment. 1. Projected Claim Dollar Expenditure Without MCM Involvement a. Rehospitalization of claimant for respiratory infection for 2 weeks at $1,450 daily charge; based on actual cost of previous hospitalization $20,300 b. Daily physician visits based on actual charges during last hospitalization ($134 daily) 1,876 Total $22,176 2. Actual Claim Dollar Expenditure With MCM Involvement a. LVN coverage for home care at $15.07 hourly rate $1,128 b. Companion level care at $6.95 hourly rate 2,834 Total £3,962 3. tal MCM Savings (November 3, 1985-January 31, 1986) $18,214 4. Actual MCM Savings (May 5, 1985-November 12, 1985) $99,241 5. CQumulative Savings to Date (May 5, 1985-January 31, 1986) $117, 455 0081C:kr/072286 312 TABLE 4-2 Economic Model Demonstrating Reduced Costs Intrapartum Intervention Added Prenatal Prevention (Current) (Proposed) % Candi- No. % Candi- No. dates Casos Cost dales Cases Cost Prenatal prevention 0 1000°* — 100 1000 § 65,000# Incidence of premature labor 8t 80 6° 60 Intrapanum inlervention 4% 40 $ 60,0008 4.5t1 45 § 67,500 Incidence of preterm binh 6t 60 33 30 Neonatal intensive care 3) 30 $2,400,000 1.51% 15 $1,200,000 Total perinatal cost $2,460,000 $1,332,500 Cost savings $1,127,500/1000 pregnancies * Index cases lor ihe purpose of projecting costs. t One quaner of instances of inlrapanum munagement for premalure labor may currently be elfeclive and thus an 8% Incidence of premalure lubor leads 10 a 6% incidence of preterm birth, {One hall of patients in preterm labor now present sutficiently early to be candidates lor tocolysis. § Cost of intrapanum management of preterm labor (3 days for each patent at $500 per day). 10ne hail of all premature infants will require neonatal intensive care. Average cost per infant (1977) = $40,000; wilh an adailional 15% inflation laclor per year lor 5 years, average cos! per infant (1982) = $R0,000. # Cos! ol prematurity prevention, above that of standard prenatal care, al $65 per palient. °* One quarter of preterm labors will nol occur as a result of the prematurity prevention program. 11 Wilh earlier diagnosis of preterm labor thvee quarters of patients will be candidates for locolysis. $1 Reduction by one half in preterm binhs. 313 PRESENTATION BEFORE THE TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN by Ruth Yoshpe (for Harriette B. Fox) on December 4, 1986 314 Lynn Squire had asked me, as part of my presentation, to talk about how states are using Medicaid's 2176 home- and community-based waivers to serve technology-dependent children -- a topic I usually like to speak on -- but since you heard so much yesterday about the waiver program, I thought I'd talk instead about what states cam and are doing jer Medicaid t t hild ithout . Medicaid As you know, the recently passed OBRA '86 legislation permits tal ! id f at-| irat . ! yentilator-dependent individuals without obtaining a waiver. Such services are defined as those provided on a part-time basis by a respiratory therapist, or other person skilled in respiratory therapy, in an individual's home. To be eligible for home-based respiratory care, an individual must: o be medically dependent on a ventilator for life support at least six hours per day; o have been treated as a ventilator-dependent patient on an inpatient basis for 30 consecutive days, or the maximum number of days authorized under the state plan, whichever is less; o have adequate social support services to be cared for at home; o want to be cared for at home; and o require inpatient respiratory care for which Medicaid would pay, if home-based respiratory care services were not available. The new coverage option should make it possible for all states to serve ventilator-dependent children at home without a Secretarial waiver. The basic service in addition to respiratory home care that usually is required by persons on ventilators is case management. 315 Comprehensive case management services may be built into a state's EPSDT program, but they also may be covered as a separate optional service. Since the enactment of COBRA, states have been permitted to offer case management services and target them to specific populations without having to meet Medicaid's statewideness or comparability provisions. If allowable Medicaid services other than case management are needed by ventilator-dependent children, but not generally provided for under a state's plan, they may be authorized as an EPSDT treatment service. (Home modifications and other unauthorized services, though, would have to be financed through other sources, possibly Crippled Children's Services.) Moreover, the state could also provide for expanded income eligibility, as it might under a 2176 waiver. This could be done by amending its state plan to cover disabled children who, because of the SSI deeming rules, otherwise would only be eligible if they were in an institution where their parents’ incomes would not be “deemed” or considered available to them. The option to cover respiratory home care became effective on the data OBRA "86 was enacted. Many states apparently are interested in using it. Our recent survey of Medicaid directors found 27 who already have decided to provide respiratory care to the ventilator-dependent. Of these, seven are in states with a state plan amendment to waive the SSI deeming rules for disabled children. Another four directors are seriously considering the respiratory care option and ten more were undecided. Only ten Medicaid directors told us that the new coverage option had been rejected. Some states, however, have already been providing home-based respiratory care as part of their regular home health care benefit. They not only have been serving ventilator-dependent individuals, but others who require extensive skilled home care as well. Current law mandates the provision of home health services, which must include part- 316 time nursing services, home health aide services, and medical supplies and equipment and at least one optional service. The extent of coverage is defined by each state. Maine, for example, covers up to 20 hours of home-based nursing care for ventilator-dependent individuals and others who require it. Kansas provides shift nursing care at home to ventilator-dependent and other severely impaired children as a necessary EPSDT treatment service. Both states require prior authorization for extensive home nursing services, and both ensure cost-effectiveness by limiting the cost of care in a nursing home or hospital, whichever would otherwise be necessary. Of course, not all poor children are eligible for Medicaid. Financial eligibility is linked to the AFDC payment standard, which varies considerably across states. Currently, seven states have payment standards at or above 75 percent of the federal poverty level, sixteen have payment standards between 50 to 74 percent of poverty, twenty-four have payment standards between 25 to 49 percent of poverty, and four states set their standards below 25 percent of poverty. Beginning on April 1st, however, states will have the option to cai faibili -i . . age of five. We recently surveyed Medicaid directors to determine their interest in this option and learned that about a third of Medicaid directors were planning to recommend expanding income eligibility, in most cases up to 100 percent of poverty. Given the exhorbitant health care expenses incurred by families with technology dependent children, though, Medicaid coverage is needed not only the poor, but by middle class families as well. In the thirty- seven states that have medically needy programs it is possible for these families to become Medicaid-eligible by deducting their incurred Medicaid expenses. Yet it must be understood that these deductions can be enormous -- sometimes greater than the families' take home pay. If the bill is for hospital care, and the family is unable to pay it, then the hospital usually absorbs the expense as uncompensated care, and the 317 child continues to receive treatment. But if the bill is for home-based nursing care and the family cannot pay, the uncompensated care option is not there, and it is virtually certain that the care will be discontinued. Since many technology-dependent children obtain Medicaid coverage as children who are or would be eligible for SSI benefits, I should mention that SSI income eligibility policies are not as generous as they are often thought to be. Although the income eligibility formula provides for certain living expense deductions that might be needed by a sensory or orthopedically impaired individual, it does not take into account the very high medical expenses required by technology- dependent children. This is an issue, in addition to the disability definition itself, that the Division of Maternal and Child Health has been interested in and one that I think the task force may want to examine. Again, as I mentioned earlier, it is possible for states to amend their Medicaid plans to provide income eligibility to disabled children who, because of their parents’ income, would otherwise only be eligible in an institution where such income would not be deemed available to them. Currently, nine states are using this eligibility option. Many states apparently view the option as being too broad and having the potential of extending eligibility to very large numbers of disabled children. That actually is not what has happened because states have established rigid criteria to determine whether the child would, in fact, require the level of care provided in a hospital, SNF, or ICF. Nevertheless, there remains the concern expressed by a large number of states that by waiving the deeming rules, middle class and even upper class families would become eligible for totally free care, and they feel that this is politically unacceptable. Perhaps the task force would want to examine proposals for cost-sharing under the Medicaid program so that at least some assistance could be available to larger numbers of non-poor families. 318 Private Health Insurance Now I want to turn to some of the issues relating to private health insurance coverage for technology dependent children. Unfortunately, no studies as yet have been conducted on the adequacy of private coverage for chronically ill children. What is known about private health plans generally suggests, though, that the vast majority f privately i | disabled child f | fit hich includ 1y | italizati but physic] . lat . ft) . | ti {i . that h child . Deduct ib] fic benefit limitati | trict the utility of these benefits for disabled children. This is particularly true for ancillary services -- such as outpatient mental health counseling, visiting nurses services, home health aide services, or speech and occupational therapy. As a result, private health insurance generally leaves the families of technology-dependent children with substantial and, in some cases, devastating out-of-pocket expenses. There are some positive recent trends, however. Employers’ growing concern about escalating health care costs has led them to offer Several industry surveys provide evidence of the sharp rise in coverage of services that have the potential for reducing hospital utilization -- especially extended care facilities and home care services. Labor Department data show, for example, that in the years between 1983 and 1984 alone, the number of employer group plan participants with extended care facility coverage increased seven percent, while the number with home care coverage rose by as much as 24 percent. The home care benefit being offered now appears to be more comprehensive that it once was. Home care previously had been defined primarily as a nursing or home health aide service. Today employers who 319 are revising or first introducing this benefit frequently specify a laundry list of services that typically include those of an occupational therapist, physical therapist, speech therapist, respiratory therapist, and medical social worker. Traditional limits on the total number of visits or amount of reimbursement may still remain, however, and, to insure cost savings, many employers require that the benef it be offered in lieu of hospitalization. Beyond the home care benefit, though, a significant proportion of employers are offering individual benefits management, a more flexible (non-specified) benefit that allows for reimbursement of a wide range of home and community-based services, provided that their total cost is less than hospitalization. Under this provision, 24-hour nursing, medical transportation, home modification, and other services normally outside the scope of the plan may be authorized. Virtually all of the larger carriers offer this kind of benefit, which may be variously called individual case management, large claims management, or medical care management, depending on the insurer. Of the thirteen major health insurers that we interviewed, only four could tell us what proportion of the group health insurance plans they underwrote or managed contained the individual case management benefit. Lincoln National Insurance reported that the benefit is written into 100 percent of its plans. The Blue Cross/Blue Shield Association told us that 58 percent of the local plans responding to its survey provided this benefit. Prudential estimated that 20 percent of its plans had it, while Metropolitan Insurance, which is only just beginning to market individual benefits management, indicated that only five percent of its plans currently contain the benefit. In addition, of course, these and other major health insurers all report that on a case-by-case basis, many employers will agree to the same type of flexible benefits arrangement even if it is pot specified in their group benefit plan. 320 The trend toward better nursing home and home care coverage is obviously a positive one for children with special medical problems. The growing popularity of individual benefits management is particularly significant for children dependent on sophisticated and costly medical technologies. It enables many families, who otherwise would have had coverage only if their children were hospitalized, to obtain reimbursement for their children's care at home. The utility of this flexible benefit can be limited, however, by the extent of the insurer's maximum liability and the amount of reimbursement already provided under the policy. Also on the positive side, trend data reveal that since 1980 employer provisions for maximum lifetime benefits and out-of-pocket spending limitations have improved significantly, providing greater protection against expenses for high-cost chronic conditions. According to the Bureau of Labor Statistics, which surveys plans of medium and large firms, 37 percent of plan participants in 1984 had either unlimited lifetime benefits or a one million dollar lifetime benefit maximum, while only 26 percent had this protection two years earlier. Similarly, the proportion of employees with a limit on their annual payouts for covered expenses (usually up to $1,000, $2,000, or $4,000) rose from 63 percent to 75 percent over the same two-year period. On the other hand, cost-sharing requirements are increasing for most privately insured individuals. The trend to greater cost-sharing with employees has been well documented. To keep their own health benefit costs down, employers have been increasing the financial obligations on their employees by raising the employee cost of participating in the plan and by raising the employee cost of using covered services. While cost-effective services, such as home care, are sometimes exempted, the families of children with special medical problems generally can expect to have higher out-of-pocket expenses for their children's care. 321 Yet, with private health insurance, as with Medicaid, many of the children that we would expect to have coverage do not. Children with serious medical problems are less likely than other children to be insured under a private plan. More detailed data on the general population of children under age 18 show that in 1980 approximately 23 percent -- 15 million children -- were without health insurance protection for all or part of the year. Those with the greatest likelihood of being uninsured were Hispanics and near poor children whose family incomes were between 100 and 200 percent of poverty. Although employment status generally is associated with health insurance coverage for families, most uninsured children, in fact, have working parents. A 1977 analysis of always uninsured children revealed that the majority of uninsured children had a parent working full-time. A significant proportion of uninsured children, perhaps as many as 25 percent, have parents who themselves are insured under an employer- based plan. More than twice as many, however, have working parents who also are without coverage. In addition to establishing or expanding indigent care programs, states have been considering a number of health care financing trategies that. if ly desi 1d t bl : jer i | uni hild ith long-t hit medical needs. State Mandated High-Risk Pools One such approach is the mandatory high-risk pool. A high-risk pool is an organization of insurers in which members share the financial risks associated with providing health coverage to persons considered “uninsurable." These are people who are high insurance risks and 322 otherwise would be unable to obtain comprehensive health insurance at a reasonable price. Through the pool arrangement, the risk of loss in covering this population is spread across all insurers so that each participating insurer's risk is reduced. The pool establishes the premium rate. Actual losses (or profits) are shared equitably by its members. A high-risk pool mandated by state law requires the participation of all health insurance carriers doing business in the state. Ten states have enacted such legislation. They are: Connecticut, Florida, Indiana, Iowa, Minnesota, Montana, Nebraska, North Dakota, and Tennessee. The Connecticut and Minnesota laws have been around for more than ten years; the Iowa and Tennessee laws were just enacted this year. All of the state-mandated pools are designed to serve people . who have no access to an employee or other group health plan and whose only option is an individual health insurance policy. Applicants to the pools generally are required by law to prove that they attempted to secure individual coverage from at least two carriers but either were rejected for insurance or were offered coverage with restrictions additional to those in a standard policy. Such restrictions are defined as pre-existing limitations, substantially higher premiums, or restrictive riders. Connecticut's statute is the only one that deviates from this basic eligibility scheme. It does not require applicants to prove high- risk status. Any uninsured group or individual may purchase coverage from the pool. In addition, since the law authorizes hospital and medical service corporations (Blue Cross and Blue Shield) to opt out of the pool and form their own residual market mechanism instead, Connecticut residents have a choice of obtaining insurance from either of two entities: the Health Reinsurance Association (HRA) run by the commercial insurers, and the Risk Pool (RP) operated by Blue Cross/Blue Shield of Connecticut. 323 The purpose of all the state-mandated pools is to provide eligible applicants the opportunity to purchase comprehensive health insurance coverage on a par with that available under a standard major medical policy. A minimum benefit package for a qualified=plan is prescribed by legislation in each state. The benefits include basic hospital and medical care services plus some others. The states typically require coverage for out-patient mental health treatment, home health care, and nursing home care -- though in each instance benefits are relatively limited and copayments and deductibles may apply. Plans offered by the pools also must meet certain conditions regarding deductibles, coinsurance, and similar features. High-risk pools in six of the states are required to provide a choice among two or three levels of deductibles. The low options range from $200 to $1,000, ‘and the high options range from $750 to $2,000. In the other states, eo single deductible between $200 and $1,000 is mandated for the qualified plan. Each state has a coinsurance policy in which insureds pay 20 percent of charges above the deductible. In addition, each imposes a waiting period on enrollees who have a pre-existing medical condition. These periods range from six months to a year, but in two states they may be waived if the enrollee had some form of health insurance coverage during the previous year. The maximum liability of insurers and enrollees is another benefit provision dictated by state statute. All states have established a maximum annual liability for enrollees (a limit on the out-of-pocket expenses that may be incurred in meeting deductibles and coinsurance requirements). These limits currently range from $1,000 to $3,000. Nine of the ten states also prescribe a maximum lifetime benefit level (a limit on the total claims amount that the pool is required to pay to any single enrollee). One state caps lifetime benefits at one million dollars; the others are at either $500,000 or $250,000, which, of course, is low for many individuals with severe physical impairments. 324 Financing for the high-risk pools is expected to come from premiums. All of the states, however, have sought to minimize financial barriers to enrollment by placing a ceiling on the amount that insureds may be charged. State laws dictate that the premium price_ cannot be more than a certain percentage -- from 125 to 200 percent, depending on the state -- of the average amount charged by major insurers for comparable coverage. If pay-outs for claims exceed premium revenues, then the losses incurred by the pool must be absorbed by its members. Nine states subsidize pool losses indirectly by allowing insurers to offset the amount of their assessment against their state premium or income tax liability usually as a dollar-for-dollar credit. Thus, while the high-risk pool usually is viewed as a private sector option, the pools generally are financed indirectly through state revenue because of the tax write-offs. Given the adverse selection of enrollees, it should not be surprising that with the exception of the - Connecticut pool, the pools' operating costs have been very high. In actual dollar amounts, underwriting losses have reached several million dollars. Yet the ERISA prevention provision prohibits states from requiring the participation of self-insured employers and most states accept the equity argument that the pool's financial burden cannot be placed on insurance companies alone. They acknowledge that mandatory high-risk pool participation would encourage large employers to self- insure, inevitably reducing the base on which to finance a high-risk pool operation. State premium tax revenues would be reduced as well. Thus, the seven high-risk proposals under consideration in the 1986 state sessions all included full or partial tax credits to offset insurers’ assessments. 325 Interest in promoting state high-risk pools as a mechanism to reduce uninsurance led Congress to attempt to incorporate into the Omnibus Budget Reconciliation Act of 1986 a modified version of the high-risk pool proposal sponsored by Kennedy and Stark. Under this provision, which was deleted from the Act at the eleventh hour of its passage a voluntary, rather than the originally proposed mandatory, high-risk pool program would have taken effect. The bill would have provided that in states that choose to legislate pooling associations, HMOs and self-insured employers, as well as insurers that write expense- incurred health insurance, be required to participate and share equitably in the pool's losses. Any employer with twenty or more employees would have been required to participate or face a five percent excise tax on gross wages (as defined in the Internal Revenue Code Section 3401) paid or incurred during the taxable year. Premiums for the plan's comprehensive health insurance policy could not have exceeded 150 percent of the average premium rate for comparable coverage of individual standard risks. All residents, without regard to pre-existing conditions, would have been able to purchase the pool's coverage. The state would have had the option of paying all or part of the premium cost for low-income individuals. Congressional staff indicate that there will be a second try during the next session to get the bill enacted. Clearly, many states are interested in the high-risk pool concept and, with the equity matters taken care of, would move to require the participation of all health care financers and insurers. Risk pools could have a significant impact on families with severely impaired children, but the pool's benefits would have to be designed with their special needs in mind. For example: o To make insurance protection affordable for low- and moderate-income families, states could subsidize premiums on a sliding scale basis using general revenue funds. (Sliding scale premium subsidies have recently been adopted in Wisconsin.) 326 To reduce the problem of delayed access to benefits, states could require the elimination of pre-existing condition clauses that establish waiting periods longer than one month. To offset the additional costs to the_pool, premium prices 15 or 25 percent higher than regular rates could be authorized for the first year of enrollment. To contain costs and establish flexible benefits, the pool could function as a prudent purchaser of care, contracting on a capitation basis with providers who can comply with prescribed cost-effective, medical care protocols. To encourage the enactment of state legislation mandating the creation of high-risk or catastrophic health insurance pools for children, Congress could amend the Medicaid statute to provide an incentive for states that pass such legislation and/or a penalty for those that do not. The incentive could include funds to be applied toward the premium subsidy and, if full or partial tax credits are provided, funds to offset a portion of state revenue losses. To enable children with inadequate group insurance to enroll in the pool, insurers could be required, at a parent's request, to cash out the value of the child's current premium. To assist state Medicaid programs that wish to purchase pool coverage for Medicaid-eligible children, the Department of Health and Human Services could facilitate the process of applying for the freedom-of-choice waiver that would be necessary if capitation contracts were used. 327 State Financed Catastrophic Coverage Another approach that states have considered to extend coverage for those with high-cost illnesses is a state-financed catastrophic health expense program. This is a program in which the state functions as the payer of last resort for persons who have incurred very substantial out-of-pocket expenses for medical care. It is intended primarily to benefit working families who have some financial resources but, because of inadequate health insurance, would be financially devastated by extensive medical bills that could result from a serious or prolonged illness. The program is designed to serve the uninsured as well as the underinsured who have exhausted their benefits. Five states enacted state catastrophic health expense programs. They are Alaska, Maine, Minnesota, New York, and Rhode Island. Only three of these programs, however, are operating currently. New York's program was never implemented following its initial pilot phase and Minnesota's was discontinued in 1981 after four years of operation. In addition Maine's was severely curtailed. In establishing catastrophic health expense programs, the states wanted to assist families with little or no health insurance, but they did not want to discourage enrollment in comprehensive health insurance plans. They were careful, therefore, to construct their eligibility and benefit policies so that those who could afford to purchase such coverage would find it preferable to do so. To be eligible under the catastrophic health expense programs, families are required to incur substantial uninsured health care costs that remain their liability. The program's benefit level only reflects whatever additional medical bills families incur. While the Minnesota program was operating, families also were required to pay coinsurance. 328 Although each program bases eligibility on uninsured medical expenses, there is some variation in the formulae used to calculate the required amount of family liability (sometimes called the deductible or spend down requirement). Generally, the amount of tied to a certain percentage of the family's income and assets. Under Alaska's formula, for example, families had to meet a medical expense deductible equaling 30 percent of adjusted gross adjusted income plus 10 percent of assets. Not all medical and health care expenses are permissible, however. Covered services are specified by statute or by regulation. Generally, they include those services usually covered under a standard comprehensive health insurance policy: hospital and physician services plus some other services such as prescription drugs, medical equipment, and limited long term care. Speech therapy, physical therapy, and psychiatric care are not covered under every program. Financing for the catastrophic health expense programs comes from general state revenues. Maine is the only state that uses an additional revenue source (a two-cent cigarette tax) to provide supplementary funding. This type of program proposal, packaged specifically for children, has come up several times in the New Jersey legislature and has been under consideration in several other states as well. But state-financed programs have not been very popular, basically because they require an ever increasing line item budget but also because, as the states defined catastrophic expense, the programs failed to serve moderate- and middle-income individuals that they were intended to serve. Instead, they benefited the uninsured poor whose medical expenses were relatively small. [Mention that task force on catastrophic health expenses dealt with this issue in its definition.] Moreover, in states that had medically needy programs in which all children up to age 18 were eligible, children were better served through Medicaid than through the catastrophic program. 329 State Mandated Availability of Catastrophic C A third option is one that, several years ago, was proposed by the National Association of Insurance Commissioners (NAIC).as model state legislation that would require each insurer to offer catastrophic health insurance coverage either individually or through a pool in which each shared in the gains and losses on an equitable, proportionate basis. The NAIC proposal was designed to provide protection against the potentially devastating costs of serious illness or injury. But unlike the state-financed programs, private insurers were to be the vehicle for making catastrophic coverage available; financing was to come from subscriber premiums; and, perhaps most important, eligibility for reimbursement of extensive medical bills was to be dependent on the prior purchase of catastrophic health insurance. Under the model act, any individual, family, or corporation would be eligible to purchase health insurance coverage. Applicants would not have to meet any specific eligibility criteria. Uninsured as well as insured persons could enroll. Benefits would be based on allowable expenses that exceed a certain threshold in any one year. These expenses would include any charges incurred by an individual or on his behalf -- without regard to who actually pays. In other words, catastrophic health insurance could function as either the first or second level of coverage. The family's liability under the catastrophic plan would be determined by the extent of its basic health insurance coverage: the more comprehensive the basic coverage, the lower the out-of-pocket deductible. The basic formula would be that all reasonable charges for the necessary care and treatment of any sickness or injury incurred during the year would be reimbursed if they exceeded $5,000 in the case of an individual, or $7,500 in the case of a family. 330 With respect to the premium, the NAIC proposal would require only that rates be reasonable in relation to the benefits provided. There would be no cap on the actual amount that insureds could be charged. An important optional provision under this proposal concerns the participation of state Medicaid programs. The model act permitted states to grant their Medicaid programs the authority to purchase catastrophic health insurance for anyone eligible under Medicaid. Although no state has ever enacted this particular proposal, a number have been taking up proposals to mandate the availability of benefits for long term care -- basically nursing home care -- or, more generally, catastrophic chronic care. The major difference between these and the NAIC proposal is that the states are specifying specific, catastrophic benefits, and NAIC leaves the benefit package broader and undefined. In addition, the NAIC proposal would have catastrophic health insurance function as either first or second level coverage -- thereby benefiting families with basic coverage enormously. The long-term care (LTC) insurance debate is taking place now in many state legislatures. Eight states have appointed task forces to study and recommend long-term care reforms. While some states are considering mandating the inclusion of specific benefits, most are focusing on separate, comprehensive policies. The Arizona long-term care task force, for example, has recommended a variety of proposals including risk pools, HMOs, PPOs, and life care communities all specializing in long-term care. A "model" policy including home- and community-based services is being written by the state insurance commissioner for distribution to private insurers. 331 By the end of 1985, four states had passed laws to require insurers to make available nursing home or home health care through optional riders. The New York law is particularly interesting. It is designed to increase the availability of long term care insurance by encouraging private insurers and health maintenance organizations to develop plans for coverage of services in residential health facilities and community-based settings. The new law authorizes the insurance superintendent to approve such contracts and spells out the terms insurers seeking to establish them must meet, including not jeopardizing their other contract obligations. Like the state-mandated high-risk pools, however, mandatory availability of long term care or catastrophic health insurance should be structured to address the needs of technology-dependent children. Again, states could provide for sliding-scale premium subsidies for individual purchasers, shorten waiting periods, and mandate case managed care consistent with cost-effective protocols. (The case management component certainly is a feature that employers would want to see incorporated.) The federal government also has a role to play in promoting the purchase of such policies. It could assist states with the financial burden of providing premium subsidies, and, along the lines of the recommendations of the task force on catastrophic illness expenses, provide tax supports to insurers and employers. 332 TESTIMONY TO DHHS’ TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN 9:00 A.M., THURSDAY, MAY 7, 19087 NATIONAL CLARION HOTEL ARLINGTON, VIRGINIA PRESENTED BY ROBERT YOUNES, M.D. ACTING EXECUTIVE DIRECTOR GROUP HEALTH ASSOCIATION REPRESENTING GROUP HEALTH ASSOCIATION OF AMERICA 1129 - 20TH STREET, N.W., SUITE 600 WASHINGTON, DC 20036 333 MR. CHAIRMAN, MEMBERS OF THE TASK FORCE, I AM DR. ROBERT YOUNES, ACTING EXECUTIVE DIRECTOR OF THE GROUP HEALTH AS8S80CIATION, HERE TODAY ON BEHALF OF THE GROUP HEATLH ASSOCIATION OF AMERICA, COMMONLY KNOWN AS GHAA. AS YOU MAY ENOW, GHAA I8 THE LARGEST NATIONAL ORGANIZATION REPRESENTING PREPAID, MANAGED HEALTH SYSTEMS, AND PRESENTLY REPRESENTS OVER 160 HEALTH MAINTENANCE ORGANIZATIONS (HMOs). IT IS A PLEASURE TO BE HERE TODAY TO SPEAK BEFORE THIS DISTINGUISHED GROUP ON CARE FOR TECHNOLOGY DEPENDENT CHILDREN. WHILE THE NUMBER OF CHILDREN DEPENDENT ON MEDICAL TECHNOLOGY I8 SMALL, WE ALL ACKNOWLEDGE THAT THESE CHILDREN ARE OF SIGNIFICANT CONCERN TO SOCIETY. THE EMOTIONAL AND SOCIAL BURDENS THEY AND THEIR FAMILIES FACE CANNOT BE OVERESTIMATED. WE ALSO READILY RECOGNIZE THAT THESE CHILDREN REQUIRE SUCH INTENSIVE, EXTENSIVE, AND EXPENSIVE HEALTH CARE THAT THE TIME, EFFORT, AND DOLLARS INVOLVED ARE SUBSTANTIAL. 334 THERE CAN BE NO DOUBT THAT THESE CHILDREN DESERVE THE BEST CARE SOCIETY AND MEDICAL SCIENCE CAN OFFER, IN THE SETTINGS THAT ARE MOST APPROPRIATE FOR THEIR NEEDS. TEE FAMILIES OF THESE CHILDREN ALSO DESERVE THE UTMOST CONSIDERATION -- CONSIDERATION OF WHAT WE CAN REASONABLY EXPECT TEEM TO GIVE EMOTIONALLY, SOCIALLY, AND ECONOMICALLY. THIS TASK FORCE HAS HEARD TESTIMONY THAT TECHNOLOGY DEPENDENT CHILDREN CAN BE CARED POR AT HOME MORE APPROPRIATELY AND LESS EXPENSIVELY THAN IN INPATIENT FACILITIES. UNFORTUNATELY, THIS IS NOT ALWAYS THE CASE. AMONG THE MYRIAD OF CIRCUMSTANCES, THE EFFORTS REQUIRED TO KEEP A CHILD AT HOME MAY PROVE TOO BURDENSOME: A SPOUSE MAY HAVE TO STOP WORKING; SIBLINGS MAY FEEL TOO MUCE BTRAIN; CONSTANT CARE NEEDS AND FINANCIAL BURDENS CAN EVEN JEOPARDIZE A MARRIAGE. HOME MAY NOT ALWAYS BE THE BEST PLACE FOR A TECHNOLOGY DEPENDENT CHILD, AND ANY POLICY, LAW, OR REGULATION ON THIS SCORE SHOULD ALLOW WIDE LATITUDE. 335 AT GHAA, WE HAVE NOT YET BEEN ABLE TO SYSTEMATICALLY DEVELOP AGGREGATE STATISTICS ON HOME HEALTH CARE FOR CHILDREN IN EMOs. ANECDOTAL INFORMATION INDICATES THAT A VARIETY OF COVERAGE POLICIES EXIST, A8 WITH OTHER THIRD PARTY PAYERS. WE WOULD WELCOME THE OPPORTUNITY TO WORK COLLABORATIVELY WITH DHHS IN STUDYING THE NEEDS OF TECHNOLOGY DEPENDENT CHILDREN AND HOW HMOs CAN BEST RESPOND TO THOSE NEEDS. PAYMENT MECHANISMS HAVE BEEN IDENTIFIED A8 A MAJOR BARRIER TO APPROPRIATE CARE FOR THESE CHILDREN. THIRD PARTY PAYERS HAVE BEEN FAULTED FOR PROVIDING LIMITED HOME CARE COVERAGE. FEDERAL LAW REQUIRES HMOs TO PROVIDE HOME HEALTH BENEFITS. HOWEVER, THESE ARE BASIC HOME HEALTH BENEFITS, AND ARE NOT GEARED TOWARD THE INTENSIVE CARE NEEDS OF TECHNOLOGY DEPENDENT CHILDREN. I WOULD LIKE TO POINT OUT THAT WE ARE NOT ALONE IN THIS REGARD -- COMMERCIAL INSURERS AND PUBLIC PROGRAMS HAVE RESPONDED SIMILARLY TO THE HIGH COSTS OF HOME CARE FOR SEVERELY ILL INDIVIDUALS. FOR THE HMO INDUSTRY TO TAKE ON FULL COVERAGE OF THESE PATIENTS WHEN OTHER THIRD PARTY PAYERS DO NOT WOULD VIRTUALLY BE SUICIDAL. 336 EMOs ARE COMMITTED TO DELIVERING HIGH QUALITY HEALTH CARE AT A REASONABLE COST. GHAA DOES NOT ADVOCATE A POLICY CONCERNING THE IDEAL LOCATION POR THE CARE OF TECHNOLOGY DEPENDENT CHILDREN. RATHER, GHAA BELIEVES THAT COVERING SERVICES FOR THESE CHILDREN MUST BE ADDRESSED BY EACH PREPAID PLAN, DEPENDING ON IT8 OWN COST EXPERIENCES, THE RESOURCES AVAILABLE IN THE COMMUNITY, AND MOST IMPORTANTLY, THE NORMS AND STANDARDS APPLIED IN COMPETITIVE S8YSTEMS. REIMBURSEMENT FOR SERVICES MUST NOT BE CONSTRUED A8 THE ONLY BARRIER TO APPROPRIATE CARE FOR TECHNOLOGY DEPENDENT CHILDREN. ANOTHER PROBLEM I8 THE LACK OF INTERMEDIATE CARE FACILITIES THAT CAN SERVE AS TRANSITIONS BETWEEN THE INTENSIVE CARE/INPATIENT AND HOME CARE SETTINGS. WHILE THE UNITED STATES MAY HAVE SURPASSED THE REST OF THE WORLD IN HEALTH CARE TECHNOLOGY, IT HAS NOT SUCCEEDED IN PROVIDING INNOVATIVE, ALTERNATIVE SETTINGS TO MEET THE NEEDS CREATED BY THAT TECHNOLOGY. 337 WE NEED TO EXPLORE ALTERNATIVE SETTINGS, BUCH AS GROUP HOMES, TRANSITIONAL FACILITIES, RESPITE CARE FACILITIES, AND MEDICAL DAY CARE, THAT CAN ALLEVIATE THE BURDEN FACED BY THE FAMILIES OF TECHNOLOGY DEPENDENT CHILDREN -- THE BURDEN OF DECIDING BETWEEN HAVING THEIR CHILD EITHER IN THE HOSPITAL, OR AT HOME, WITH NO OPTION ON MIDDLE GROUND. . THE STRUCTURE OF THE HOME HEALTH INDUSTRY MAY ITSELF BE A BARRIER TO CARE FOR THESE CHILDREN. NOT ALL COMMUNITIES CAN BOAST OF A QUALIFIED, COMPREHENSIVE HOME HEALTH PROGRAM. NOR DO WE KNOW WHAT IMPACT THE CURRENT NURSING SHORTAGE WILL HAVE ON HOME HEALTH. BEFORE WE CAN MAKE CONCERTED EFFORTS TO PLACE THESE CHILDREN AT HOME, WE NEED TO ASSURE THE QUALITY AND SCOPE OF HOME CARE AVAILABLE TO THEM. 338 OTHER BARRIERS TO CARE FOR THESE CHILDREN ARE THE COSTS ASSOCIATED WITH NON-MEDICAL CARE, AND THE EFFORTS WHICH FAMILIES MUST MAKE TO ACEIEVE APPROPRIATE SUPPORT. TRANSPORTATION, MAKING A HOME ACCESSIBLE TO CUMBERSOME EQUIPMENT, MAINTAINING DURABLE MEDICAL AND ADAPTIVE EQUIPMENT -- ALL ARE NECESSARY SPECIAL CONCERNS OF THESE FAMILIES THAT ARE NOT COVERED ADEQUATELY BY MOST THIRD PARTY PAYERS. WE NEED TO FIND CREATIVE WAYS IN WHICH SUPPORT SERVICES CAN BE PROVIDED TO FAMILIES IN NEED AT MINIMAL COST, AND EFFECTIVE MEANS FOR FINANCING THEM. THE HEALTH INSURANCE INDUSTRY -- WHETHER THROUGH PREPAID OR STANDARD INDEMNITY PLANS -- PACES THE PROBLEM OF EVER-INCREASING PREMIUMS. THIS 18 DUE AT LEAST IN PART TO THE HIGH COSTS OF CARING FOR CHRONICALLY, CRITICALLY ILL INDIVIDUALS. AS COVERAGE FOR THESE INDIVIDUALS EXPANDS, INSURANCE PRICES CAN ONLY RISE EVEN HIGHER -- SOMETHING NO ONE I8 EAGER TO SEE. 339 THE BURDEN OF FINANCING CARE FOR SUCH INDIVIDUALS SHOULD NOT FALL ON ANY SINGLE SEGMENT OF SOCIETY. ONE PROPOSED SOLUTION TO COVERING THE EXPENSIVE CARE TECHNOLOGY DEPENDENT CHILDREN REQUIRE I8 THE DEVELOPMENT OF INSURANCE RISK POOLS. RISK POOLS HAVE BEEN CREATED IN ELEVEN STATES TO MAKE INSURANCE AVAILABLE TO INDIVIDUALS WHO DO NOT RECEIVE HEALTH BENEFITS THROUGH EMPLOYMENT AND CANNOT AFFORD THE HIGH PREMIUMS OF INDIVIDUAL PLANS, OR, MORE COMMONLY, TO INDIVIDUALS WHO HAVE BEEN DENIED GROUP COVERAGE BECAUSE OF POOR HEALTH STATUS. SINCE ACTUARIALLY SOUND PREMIUMS FOR BUCH RISK POOLS ARE NATURALLY VERY EXPENSIVE, SOME MECHANISM MUST BE EMPLOYED TO PROVIDE FINANCING BEYOND THE PREMIUMS CHARGED. THIS CAN BE ACCOMPLISHED IN A NUMBER OF WAYS. ESSENTIALLY SUCH FINANCING MECHANISMS MUST S8PEAD THE COST OF CARING FOR VERY SICK INDIVIDUALS ACROSS A WIDE POPULATION BASE, IN OTHER WORDS, SPREADING THE RISK. WITH PUBLICLY SPONSORED PREMIUM 340 SUBSIDIES, LOW-INCOME FAMILIES AND THOSE WHO HAVE ALREADY MET SIGNIFICANT FINANCIAL OBLIGATIONS COULD PURCHASE INSURANCE COVERAGE AT AFFORDABLE PRICES. THE BENEFIT PLANS OFFERED MUST BE INNOVATIVE IN COVERING THE TYPES OF SERVICES NEEDED BY CHILDREN DEPENDENT ON TECHNOLOGY. HOWEVER, RISK POOLS ALONE ARE NOT AN ANSWER TO THE PROBLEMS OF THIS SPECIAL POPULATION. A BROADER CONCERN TO BE ADDRESSED 18 THE DEVELOPMENT OF POLICIES THAT CONSIDER NORMS AND STANDARDS WITHIN THE INSURANCE INDUSTRY. IN A COMPETITIVE MARKET SUCH AS THAT FACED BY INSURERS, ANY POLICIES CREATING INCENTIVES TO OFFER BENEFITS OR MANDATING BENEFITS MUST APPLY TO ALL PAYERS. WHAT THEN BECOMES "ACCEPTED PRACTICE” WILL BE OFFERED MORE WILLINGLY BY PROVIDERS AND RECEIVED MUCH BETTER BY THE PUBLIC. 341 WE NEED TO ENCOURAGE POLICIES ASSURING THAT, IN CASES WHERE THESE CHILDREN CAN BE CARED FOR AT HOME MORE APPROPRIATELY AND LESS EXPENSIVELY, THEY WILL BE, REGARDLESS OF WHO THEIR INSURER I8. WE RECOMMEND DHHS EXPLORE DEVELOPING MODELS OF COVERAGE BENEFITS 80 THAT THE INDUSTRY CAN TAKE A FRESH LOOK AT WHAT CONSTITUTES APPROPRIATE BENEFIT PACKAGES. TO THIS END IT WOULD BE BENEFICIAL FOR HHS TO WORK WITH TEE NATIONAL ASSOCIATION OF INSURANCE COMMISSIONERS, THE NATIONAL ASSOCIATION OF HMO REGULATORS, AND OTHER APPROPRIATE GROUPS. IN CONCLUSION, THERE 18 NO PANACEA FOR THE CARE OF THESE CHILDREN. WE NEED TO DO FURTHER 8TUDY IN THE AREA OF OPTIMAL SERVICES DELIVERY AND FINANCING. CONSIDERATION MUST BE GIVEN TO THE FACT THAT THIS PROBLEM EXTENDS BEYOND THE PRIVATE SECTOR, BEYOND PAYMENT FOR SERVICES. THE BURDENS FACED BY FAMILIES WITH TECHNOLOGY DEPENDENT CHILDREN ARE SOCIAL PROBLEMS, AND MUST BE VIEWED IN THAT LIGHT. THEY REQUIRE THE EFFORTS OF THE PUBLIC S8ECTOR IN FORMULATING RESPONSES. GHAA I8 PLEASED TO BE ABLE TO TAKE PART IN THE DISCUSSION, AND WE LOOK FORWARD TO WORKING WITH THE DEPARTMENT OF HEALTH AND HUMAN SERVICES TO RESEARCH SATISFACTORY SOLUTIONS TO THIS PRESSING PROBLEM. J8B/smw-MDDO061 342 TESTIMONY OF CAROL R. INMAN DEPUTY ASSISTANT SECRETARY - OFFICE OF SPECIAL EDUCATION AND "REHABILITATIVE SERVICES Good afternoon. Thank you for inviting me to discuss with you the present and potential role of public schools, under P.L. 94-142, in providing and co-ordinating services needed by technology-dependent children at all age levels in order to permit them to function in the least restrictive enviromment (LRE). The Office of Special Education and Rehabilitative Services (OSERS) considers the integration of all persons with disabilities to be of highest priority. We are particularly concerned with developing and evaluating models that will allow special needs children to go to school, work, play, and socialize in integrated, non-restrictive enviromments with their typical peers. In addition, we know know that these children's families may need a high degree of support - be it emotional and/or financial - in order for them to raise their children at home in non-restrictive environments. The parent training projects sponsored by the Office of Special Education Programs and many of the research activities funded by the National Institute on Disability and Rehabilitation Research focus on developing programs and strategies that will provide families with the supports that they need. A few years ago, Jean Elder of the Office of Human Development Services implemented a special initiative which stated, "Children Grow Better in Families.” OSERS wholeheartedly agrees with that statement. 343 The principles of (LRE) apply to children with all types of disabilities, but they need to be emphatically reinforced when talking about children who are dependent upon technology for survival. Fer it is these children, more than other special needs populations, who are most frequently found in restrictive environments -- hospitals, nursing homes, or intermediate care facilitaties for persons with mental retardation. These technology-dependent children pose new challenges to service delivery systems. They usually enter the world in a crisis situation and become part of the medical service delivery model for weeks and even months on end. All too often, insurance reimbursement problems then keep them trapped in the hospital, perpetuating the medical service model and neglecting the educational, developmental, and socialization needs of the child. It is imperative that we find ways to bring these children into less restrictive settings and see that they have the services needed to help them reach their maximum potentials. Society has a moral obligation to provide these children with aggressive, innovative educational approaches, just as their doctors provide them with aggressive, life-saving medical techniques. This is not an easy problem to solve, but I would like to discuss same of our views with you today. 344 when Public Law 94-142 went into effect a little over ten years ago, most of the technology-dependent children of today would not have survived. Therefore, the authors of the legislation did not foresee the possibility of large numbers of children caming to school with life sustaining machinery, an array of pharmaceuticals, and specially trained medical personnel. However, given the fact that the Office of Special Education Programs, within OSERS, is extremely interested in assuring that each and every child is educated in the least restrictive enviromment, it is possible for these children to be educated in appropriate settings. For example, one of the hallmarks of Part B of the Education of the Handicapped Act ( P.L. 94-142 ) 4s that it puts educational placement decisions more firmly in the hands of educators who are to make those decisions on educational grounds. This is because, under the "LRE" requirements, children are to be removed from the regular school en- vironment only when there is an educational reason to do so. Thus, the likelihood that a child's medical condition will pre-determine his or her educational placement is minimized. Instead, a child's educational needs came foremost, with a goal of bringing health- related services to whatever educational setting is needed by and is right for the child. A second piece of Federal legislation —— Section 504 of the Rehabilitation Act of 1973 — is also relevant to this population. This civil rights statute is important because it affects some handicapped children who do not receive services under Part B of P.L. 345 94-142, particularly children with physical disabilities who do not require specialized educational curricula. Section 504 requires that all Federally funded educational programs make reasonable accammodations to meet a physically handicapped child's need for access and health-related aid. These two legislative guarantees may often run into barriers when applied to technology dependent children who need to be constantly under the care of a person who has been trained to administer special procedures as emergencies may arise. The likelihood that a technology-dependent child will be educated in a regular classroom setting is camplicated by the question of who will provide and pay for whatever daily assistance is needed to maintain the technological and/or medical intervention. Under Part B and Section 504, schools are obligated to provide, without charge, necessary "related" or "supplementary school health" services, but are not obligated to pay for medical services other than diagnostic and evaluation services. [ The statutory citation for this 20 U.S.C. Paragraph 1401 (17). ] The dividing line between related health services and medical services is difficult to draw, and the issue has often been solved in the courts. In the leading case ([Tatro], the Supreme Court ruled that clean intermittent catheterization was a related service that must be provided, not a medical service that would extend beyond the school's obligations. In making this decision, the Court looked at the level of skill and training needed to perform the catheterization as well as 346 at the cost. Subsequently, the lower courts have applied the Supreme Court decision by looking at the complexity and cost of the requested service in each case. Because each child's needs are different, the courts have required that the schools provide and pay for same services and not for others. while there is no clear-cut rule, a few conclusions can be drawn from this. First, the fact that a service is prescribed by a doctor does not mean that schools are not obligated to provide that service. Second, because courts take into account the capacity and training of the school nurse, the more we do to train school health personnel, and the more we do to develop technology that can be tended to by teachers, the more it will allow technology-dependent children to participate in non-restrictive classroom settings. In an effort to improve the capacity of schools to provide same of these needed services, the National Institute on Disability and Rehabilitation Research (NIDRR) is supporting a research and demonstration project at Children's Hospital in Boston. Drs. Judith Palfrey and Deborah Walker are developing and evaluating a model that will create training protocols for schools to use when suctioning, tube feedings, catheterizations, and other medical procedures that might be required. A consultation team of a nurse and a pediatrician will provide case-by-case assistance to the schools to help them set 347 up safe and effective programs to meet the needs of children with complex medical problems. This consultation will begin as soon as a child is to be discharged from a hospital setting to the home. One or two persons in a school that is receiving a child with a camplex medical problem will be trained in the necessary medical procedures. These procedures include those used with children on ventilators, as well as those used with children who have naso-gastric tubes, cardiac monitors, and/or who have shunts or other feeding and breathing devices. Parents are asked to be part of the team so that they are fully aware of the procedures and any risks that might be involved. The ultimate goal of this study is to allow children with a range of medical complexities to go to their neighborhood schools to learn, play, and develop with their typical peers. As with so many of the services required by all of our children with special needs, the availability of services boils down to, "How are they going to be funded?" Since technology-dependent children usually require the presence of a person who is able to provide medical procedures during the school day, this problem must be jointly addressed by the educational and health care communities. The two groups need to develop collaborative models that will establish a new, comprehensive system that will address the divergent needs of this population of children and their families. Perhaps the new amendments to Part B of the Education of the Handicapped Act, included in Public Law 99-457, will lay the foundation and groundwork for this new model of services. 348 These amendments include two steps in the right direction. They are under the rubric of "sharing the costs of providing a free appropriate public education" to school age children. First, the amendments require that State Special Education Plans include policies and procedures for interagency agreements between the State Education Agency and other State and local education agencies involved in providing free and appropriate public education to children with handicapping conditions. This should be helpful because it will set up mechanisms for bringing education and health agencies together to allocate costs rather than leaving the child without services while education and health agencies try to decide who is responsible for which services. Second, the amendments make it clear that health services provided under the Maternal and Child Health program and the Medicaid program cannot be altered or diminished on the grounds that the child is being served under the Education of the Handicapped Act. This should stem the tendency to leave health-related services out of an Individualized Educational Plan (IEP) for fear that they will affect a persons's Maternal and Child Health or Medicaid benefits. It may also increase the State Medicaid agency's willingness to pay for health- related services for school-aged handicapped children. In fact, here in California, those children who have a hame health aide paid for by MediCal, bring that aide to school and the services are covered by Medical. 349 Health and education providers must seize this opportunity offered by Public Law 99-457, and develop innovative, camprehensive service models that combine the most salient and effective features of the developmental disabilities and the medical service models. In so doing, they will be opening many new doors and expanding many horizons for a growing population of children with special needs. These models can then be adapted and modified to meet the needs of the children as they progress fram early intervention and preschool to elementary and secondary school, thereby eliminating any service gaps and disputes over payments for services. I would be remiss if I did not take this opportunity to touch on how families fit in to the educational picture, particularly as States be- gin planning new programs under the amendments to the Education of the Handicapped Act. First, OSERS believes firmly that families must be part and parcel of every decision made by professionals on behalf of persons with disabilities. This does not mean that families' needs and concerns are after the fact. It does mean that families are working, active, participating members of health and education decision-making teams. Parents are not the water boys on the team -— THEY ARE THE CAPTAINS OF THE TEAM. All too often professionals say, "Parents don't really understand that." or "Parents don't know enough about this." Systems have to recognize the fact that parents are interested in and knowledgeable 350 about their children's conditions, programs, and futures. Institutions were not built by parents — they were built by professionals. It is essential that professionals tap this resource and be supportive of parents and work with them in positive ways. Services must be directed by parents. Families have their own goals, and these must be respected by professionals, even if they are not always what the professional feels "is best for the family." The second tenet to keep in mind when designing programs for all children is flexibility. Programs will be challenged to consider the needs and schedules of two-parent working families so that they will not be at risk of losing their employment due to excessive time away fram the job. For technology-dependent children in particular, the unpredictable nature of their conditions may result in sudden and acute illnesses, necessitating more support for the children's families. Therefore, the degree to which the educational program is able to blend with the child's stability and the family's support needs is the degree to which that program will be successful. A third basic belief that programs should have is the degree to which programs are accessible to parents. All too often parents are over- whelmed and exhausted fram the day-to-day care of their children. They need distinct channels of referral into systems. This is critical to ensure that children do not fall through the cracks and go without educational services for long periods of time. For example, a policy of having pediatric intensive care units, neonatal intensive care nurseries, and private pediatricians and clinics automatically 351 refer these children to State, county, public, and/or private sector early intervention programs would be extremely advantageous to families. Parents could be quickly contacted and made aware of the programs available to their children, allowing them to better understand and intelligently choose the options that they feel are best for the children and their family units. ‘A fourth and final cornerstone for the new @-2 programs for these children as outlined in P.L. 99-457 is that the Individual Family Service Plan that is called for in the law should be supportive of and not disruptive to families. Professionals should not view families as if all have pathology and cannot function. A great many families are fuctioning quite well, and others need varying amounts of support -from 24 hour a day nursing assistance to two or three hours of respite a week. The individuals in charge of writing these Service Plans must make sure that families receive the help that they want. Families use a multitude of community services. They can easily be barraged with "help", destroying what little privacy and semblance of normal family life they may have left. Professionals must trust families to make the right decisions as to which services they believe that they need and feel that they want. Gentle guidance and counseling in selecting and using services rather than mandatory attendance at programs will greatly enhance a family's ability to receive services in a positive way. 352 To summarize, in order for children who are dependent on technology to develop to their fullest potential, it is imperative that health and education join together to develop and evaluate a new model that will attend to their educational, developmental, and medical needs. The new amendments to the Bducation of the Handicapped Act, included in P.L. 99-457, offer ways in which these two service systems can develop collaborative efforts on behalf of the growing population of technology dependent children. These new models can hopefully be adapted as the technology dependent children enter elementary and secondary schools. As the legislation becomes a reality in each State, the resulting new programs have to keep in mind that families are active members of decision- making teams. The needs, schedules, goals, and values of families must be considered when planning any program for a child. Services that focus on the child, are directed by the family, and are seasoned with respect and balance among the parents and interdisciplinary professional team will result in the best care and most successful programs. 353 HIAA SUMMARY OF THE PROBLEMS AND SOLUTIONS FOR CATASTROPHIC ILLNESS INTRODUCTION The HHS Public/Private Sector Advisory Committee on Catastrophic lllness was charged with addressing the need for protection against three kinds of catastrophic medical expenses including those for: - acute care to those over sixty-five years of age who face coverage gaps under Medicare, Medicare supplemental policies and Medicaid; - acute care to the uninsured and underinsured who are less than sixty-five years of age; and = long term care which is typically excluded from public and private health benefits for all age groups. In listening to testimony from witnesses representing many perspectives and in debating these issues within our separate organizations, it became clear that each of these three categories of catastrophic illness contains several sub-populations at risk. The reasons for inadequate protection range from gaps in public programs to shortcomings in private markets, from poor choices made by consumers tO consumers too poor or too ill to have meaningful Choices. Accordingly, a variety of options, both public and private, are identified. ¥ost proposals made to the Committee will be found in these attachments. Some suggestions were dismissed as obviously beyond available resources for the forseeable future. The findings are presented in the following format: - each subpopulation at risk for catastrophic medical expense is identified; - gaps in existing coverage are described along with their causes and the extent of risk; - plausible solutions are outlined as are actions needed for implementation; and - funding sources are identified along with cost estimates if available. A chart summarizing this material is also enclosed. This summary by HIAA is intended to advance the national debate on the need for catastrophic coverage by offering a clearer picture of the people at risk and the most viable solutions for their problems. Submitted by HIAA August 6, 1986 354 L OVER 65 A. MEDICARE/MEDIGAP Population/Risk Approximately 70% of the elderly have private policies which supplement their Medicare benefits. The premiums for such policies are most often paid out-of- pocket although some twenty percent may be furnished by employers as part of retiree benefits. These policies are often called Medigap because they are Gesigned primarily to help fill the coverage and costsharing gaps in Medicare. Since Medigap policies are based on benefit definitions established by Medicare, Bost share the same shortcomings as Medicare in terms of true catastrophic protection. The gaps that remain include: limited inpatient days, spell of dllness restrictions, balance billing for PART B services, and non-coverage for certain outpatient benefits such as Arugs. Beneficiaries’ annual liability for these gaps is estimated at: $207 for Part A, $111 for balance billing and $160 for outpatient drugs. Solution/Action/Cost There are basically two approaches to enriching Medicare benefits with additional catastrophic features. The Medicare entitlement program could be extended to provide unlimited inpatient days per year and eliminate the spell of illness restriction. Such an expansion of Part A could be financed through increased payroll taxes, a restructuring of Part A deductibles and coinsurance, Or a new mandatory Part A premium. The alternative approach would be to revise current federal standards for Medigap policies to require unlimited hospital days, provide 100% (instead of 90%) coinsurance on non-Medicare covered days, and remove the current $5000 limitation on insurer liability. Such expansion of catastrophic coverage under Medigap would rave a negligible impact on premiums. 1f the Yedigap standard were also changed to permit sale of policies with PART B deductibles in excess of §200, premiums could be reduced, thereby making private catastrophic protection available to lower income Medicare beneficiaries. Balance billing by providers unwilling to accept Medicare fees as payment in full represents another substantial financial risk for most elderly. Although private supplemental policies with provisions for balance billing are available, they are purchased by very few Que to significantly higher premiums. To reduce Medicare beneficiaries vulnerability to balance billing, the federal government should publicize the names of physicians who accept Medicare fees as payment in full. The problem coulé also be remedied through a federal prohibition against balance billing, although access and freedom of choice would be reduced to the extent physicians declined to treat Medicare patients. The chronic need for outpatient Aarugs causes frequent and substantial out-of-pocket expenses for many elderly. Neither Medicare nor current Medigap standards provide coverage for drugs which can be self-administered by ambulatory patients. An outpatient Arug benefit could be included in an expanded Medicare PART B benefit but additional program expenditures would exceed $5 billion per 355 year. Such benefits could be made available as optional or mandatory coverage but in either case would most likely be financed through self-sustaining PART B premium increases. Alternatively, a rug benefit could be more narrowly implemented through income-related participation in coverage for high-cost maintenance Aarugs for Medicare or Medicaid eligibles with chronic conditions. At least four states have implemented such programs. Finally, private sector capitation proposals offer the possibility of expanding benefits to Medicare beneficiaries without additional federal funds or entitlements. Although primarily in the demonstration stage, capitation programs would compete for Medicare enrollees on the basis of expanded benefits, service and quality. Competitors include providers at risk (e.g. HMOs) and insurers at risk (via vouchers). A competitor's strategy would be to include Medigap coverage, unlimited inpatient care, absence of balance billing and/or coverage of outpatient drugs at little or no additional cost to the beneficiary. B. MEDICARE/MEDICAID Population/Risk The eleven percent of the elderly who are dually eligible for Medicare and Medicaid are really three separate populations: 1) 1.5 million very poor ‘elderly who meet the State's income standard; 2) 1.5 million near poor elderly who have few, if any, assets and whose excess income is quickly "spent down" to state standards by routine medical expenses; and 3) an undetermined number of elders who, when faced with long term care needs, shelter or exhaust significant assets in order to become eligible for Medicaid. Accordingly, a range of solutions are proposed in order to provide private financing alternatives to the non-poor elderly, target Medicaid eligibility to the poorest elderly, and possibly expand Medicaid benefits. Solution/Action/Cost The non-poor elderly turn to Medicaid, not for catastrophic benefits or cost- sharing supplementation of Medicare, but for long term care. Section 111 presents several options for expanding private financing of long term care. At the same time, the remaining legal avenues for the non-poor elderly to inappropriately transfer or shelter assets should be eliminated through federal legislation and strict state agency enforcement. Annual state and federal savings of $535 million could be realized if estate recovery options were effectively implemented nationwide. State and federal funds available for the poor elderly ought to be targeted to the neediest individuals. Accordingly, states should offer Medicaid to all elderly and disabled who are poor enough to qualify for Supplemental Security 356 Income (SS1). Federal legislation would be required to repeal the so-called *209(B) option” which permits states to set more restrictive standards thereby denying Medicaid to 270,000 SSI recipients. On the other hand, federal support for Medicaid could be redistributed if federal matching funds were no longer available for the 400,000 elderly who receive state supplemental income Dut whose income exceeds federal BSI standards. The federal cost of $130 million for covering all BSI recipients is less than the $150 million that could be saved through eliminating the federal match for state supplemental . Only recepients. One way to obtain extra benefit from limited federal funds is tO promote elder enrollment in capitation plans. HMOs should be encouraged to enroll both Medicare and dually eligible beneficiaries. Likewise, voucher demonstrations and the actuarial research on adjusted average per capita costs (AAPCC) should not overlook any subset of the Medicare or Medicaid population. Such capitation arrangements offer the greatest potential for expanded benefits from fixed but well managed premiums. Another means exists to target Medicare and Medicaid funds available for acute care to the elderly. A sliding scale for cost sharing could be established for both programs. Eligibility would not be changed but premiums could vary based upon the individual's income and assets. In theory, deductibles and coinsurance could also be varied. However, such variation would create administrative problems that would be considerable for eligibles with predictable income levels and potentially insurmountable for those with fluctuating income. C. MEDICARE ONLY Population/Risk Nineteen percent of the elderly have neither private Xedicare supplemertation policies nor Medicaid. It is highly probable that such individuals have little disposable income and few, if any, assets beyond a house and a @eath benefit policy. So for such individuals, purchase of private supplemental coverage would be unrealistic without tax incentives such as income-related refundable tax credits or enhanced tax deductibility of insurance premiums. Vouchers also hold some promise of expanding benefits without additional cos: to such beneficiaries. Solution/Action/Cost If Medicaid serves as a safety net for these individuals who are near-poor, then most are not likely to respond to tax inducements to purchase private coverage. A basic Medigap policy costs as little as $160 per year. This figure, combined with the standard $200 Part B deductible under Medigap, would subject these elderly to a total out-of-pocket liability of $360 a year in addition to physician charges and drug costs not covered by Medicare or Medigap. These elderly incur on average $136 a year in prescription drug expenses and $107 because of physician balance billing. Thus, if these elderly were unable to receive all of their care from a participating physician, their out-of-pocket expenses plus basic Medigap premiums would 357 total $603 per year. If this 4s more than the amount needed to spend Gown into Medicaid, then it is an economically wise decision to spend down into Medicaid which 4n most states is more comprehensive protection than that obtainable for $160 in the private supplemental market. nL UNDER 65 A. UNINSURABLES Population/Risk Some individuals with chronic medical conditions do not have access to group insurance through their employer or the employer of a family member. Under group policies, the risk for their expenses would be automatically spread across all employees. Such individuals, even with middle incomes, may not be able to purchase an individual health insurance policy. Policies are unavailable because the risk presented is too high for an individual insurer to underwrite and remain competitive with companies which shun persons with chronic conditions. A person is said to be uninsurable if he has pre-existing medical conditions, lacks access to group coverage and can afford individual insurance but none is available. As many as one million Americans may be uninsuradble, according to estimates by the American Medical Association. Solution/Action/Cost Appropriate solutions for uninsurables who are not low-income lie in increasing their access to private insurance coverage. Since many find themselves "uninsurable" while between employment with large firms, continuation of employer coverage is one solution. Recent federal legislation mandates that individuals be allowed to continue group coverage for eighteen months at 102% of the group preminum. Coverage of uninsurables could also be expanded where employers provide an option to convert time-limited continuation of group coverage to an individual policy without regard to pre-existing conditions. Conversion options are currently under consideration by Congress and are mandated to some degree by several states for insured, but not self-insured, employer health plans. For the remaining uninsurables, the availability of private coverage could be assured by the establishment of state risk pools for uninsurables. Eleven states currently have statewide risk pools for uninsurables with premiums set from 125% to 200% of the standard individual rate. Federal action is required to compel self-insured as well as insured employer health plans to share in losses generated by such state pools. Such broad-based sharing is essential to avoid distortions among competing employers and insurers. (Federal legislation is pending that would require equitable financing of such pools by all employee health benefit plans, all employers or general revenues). 358 B. UNINSURED POOR WITHOUT MEDICAID OR EMPLOYER COVERAGE Population/Risk There are more than 30 million persons uninsured at some time during each year. Of those under 65, thirty-five percent have family incomes below the poverty level and another thirty percent have incomes between ome and two times the poverty level. Medicaid is currently available to only 40% of all persons below the poverty level. Poor persons may be excluded from Medicaid coverage because they exceed the income standard or because they do not fit into any Medicaid qualified group such as children, parents of dependent children, the aged, blind and disabled. In addition to federally mandated eligibility groups, states may elect to cover several optional eligibility groups. Blightly less than half of the states have not elected to cover couples or their children even if both parents are unemployed. Even in states which have elected all optional eligibility groups, childless non-disabled adults cannot be eligible regardless of income and couples with children cannot be eligible if the principal wage earner is employed. Although 38 states opt to cover the near poor whose medical expenses have reduced their income to cash assistance standards, the medically needy must still fit into a Medicaid eligibility group and cannot have net income greater than 133% of the AFDC income standard. There are also significant inequities across states. For example, 270,000 poor elderly who receive federal supplemental security income payments (SSI) are excluded from Kedicaid in fourteen states. Meanwhile, federal dollars are used to match state Medicaid expenditures for 400,000 elderly with incomes above SSI because 23 states have opted to cover elderly who receive only state supplemental income assistance. Similarly, the percentage of poor children who are covered by Medicaid ranges from 72% in Massachusetts to 20% in Wyoming. A total of 31 states have income standards below $4425 or 50% of poverty. Solution/Action/Cost Federal and state Medicaid funds shoul@ be targeted to the neediest and to those generating the most uncompensated care. Pregnant women and infants account for approximately 45% of all uncompensated discharges and 28% of all uncompensated charges. Moreover, this group suffers from lack of prenatal care, complications and low birth weights. These conditions are largely avoidable with early medical attention. In order to target Medicaid funds, nev state options for eligibility could be enacted and some existing options mandated. Mandated eligibility categories might include: 0 a medically needy program; © all pregnant women and young children living in poverty (or below some percentage of the poverty line), and 359 © all elderly who meet federal 5S] standards of poverty; © parents whose families are in poverty despite employment. The combined state and federal costs of Medicaid eligibility expansions range from $330 million for coverage of all pregnant women and children below 50% of the poverty level to $2 billion for coverage of all categorically eligible below 100% of the poverty level. New state options might inclugde eligibility for working adults in intact families and those who are not as poor as the state cash assistance standard but poor enough that a requirement to spend down to that level presents a significant hardship. C. UNINSURED WORKERS Population/Risk Of the more than 30 million uninsured, nearly two thirds are uninsured workers Or their dependents. Half of these uninsured workers are employed only temporarily or part-time. Forty-six percent of uninsured workers have incomes less than or equal to 200% of the poverty level. Solution/Action/Cost Since the majority of these uninsured workers are employed by small firms, means must be found to encourage such businesses to offer coverage. Poss:ille solutions include technical assistance on forming small employer risk pools (e.g., multiple-employer trusts), tax incentives for small employers, the self employed and sole proprietorships, or a legislative mandate that all empioyers offer their enployees at least minimum health benefits. Jinen employers nonetheless fail to offer coverage, individual workers could be encouraged to obtain alternative protection. Tax incentives could be provided through medical IRA's and tax penalties waived when tax-favored savings vehicles are reduced for catastrophic expenses. This is a viable option since more than 18 million uninsured individuals are above 200% of the poverty level. Finally, government subsidies may be needed (through income related refundable tax credits or vouchers) to enable the working poor to purchase private insurance or to buy-in to Medicaid. D. UNINSURED NON-POOR AND NON-WORKING Population/Risk Of the total uninsured, 36% are the non-working and their dependents. This Population consists largely of those who have other sources of income besides wages. Thirteen percent are the uninsured dependents of an insured worker and thirteen percent are adults and their dependents who are no longer in the labor force and presumably retired. Ten percent are unemployed and may Or may not be receiving unemployment compensation. 360 Solution/Action/Cost For such individuals, public subsidies are inappropriate yet individually purchased policies, while available, may be difficult to afford on fixed incomes. Many of these families could presumably benefit from continuation and conversion provisions in their former employer's plan as well as penalty waivers for medically-necessitated deductions from tax-favored savings plans. E. UNDERINSURED WORKERS Population/Risk Although an exact definition of underinsurance has never been agreed upon, all parties acknowledge that some policies have cost-sharing liabilities that are catastrophic when compared to policy holder's income. Approximately 110 million Americans under 65 are covered through commercial insurers under major medical health insurance, a form of coverage intended to provide protection from large unpredictable medical expenses. Of these individuals S5% have stop-loss provisions less than or equal to $2000 per year. (Accurate non-duplicative statistics are not available for the remaining 50 million with either comprehensive or basic group coverage under Blue Cross. HMO's or self-insured plans.) Solution/Action/Cost Theoretically, all employers offering insurance could be required by new federal legislation to incorporate minimum catastophic benefits including out-of-pocket limits in order for the expenses of their plan to remain tax deductible. If such benefits were mandated, they would be financed, as other group benefits are, through a combination of employer and employee contributions. F. UNDERINSURED MEDICAID Population/Risk To qualify for federal matching funds, state Medicaid programs must include numerous mandatory services including inpatient hospitalization, physician services and drugs. While including these services, a few states have limited the amount of such benefits in order to contain costs. For example, inpatient hospital days are limited to fifteen or fewer days per year in four states. Providers argue that patient's medical needs often exceed such minimal benefits. The additional care that is nevertheless provided to Medicaid eligibles becomes an uncompensated cost to providers. Since providers with significant Medicaid caseloads typically have a disproportiorate share of uninsured, underinsured, under-reimbursed and bad debt cases, the lack of minimum catastrophic Medicaid benefits strains the safety net of access needed by other low-income patients. 361 Solution/Action/Cost Federal legislation and increased federal matching funds would be required to assure catastrophic coverage for Medicaid recipients in all states. Such increased coverage would be financed through increased state and federal Medicaid expenditures. G. RESIDUAL UNINSURED AND UNDERINSURED Population/Risk The numerous proposals discussed so far are not likely to be universally implemented; indeed some may not be implemented at all for lack of funds, political will, or even technical expertise. Neanwhile, the number of uninsured and the level of uncompensated care grows annually. In 1984 the level of uncompensated care was estimated to be $6.9 billion. Moreover, the care of the uninsured and the burden of uncompensated care are unevenly distributed. Public hospitals, representing 22% of the beds deliver 40% of the uncompensated care. They must struggle to replace revenues lost when costshifting practices were made obsolete by competition. Solution/Action/Cost There is a broad consensus that coverage of people is always preferable to coverage of uncompensated care costs because of the additional benefits of continuity of care, earlier intervention, and reimbursement of lower cost settings. But wherever insurance cannot be made available, access to essential hospital care must be otherwise assured to the residual uninsured and underinsured. Such access will, in some locales, require state and local grants to charitable providers. Some states may need to implement a mechanism to redistribute the noncompetitive effects of uncompensated care (e.g., a pool financed by a surcharge on hospital claims). Finally, more research on the uninsured and underinsured is advisable in order to wisely target limited public and private funds. Currently available data is fragmented, making correlations between uncompensated care and inadequate coverage highly speculative, and nearly all available data is quite out-dated. To collect integrated, comparable information from employers, providers and individuals requires a coordinated, joint venture by the public and private sectors. 362 IL LONG TERM CARE A. ELDERLY AT RISK FOR OR CURRENTLY RECEIVING SERVICES Population/Risk At 65 years of age, a person stands a 43% chance of entering a nursing home for acute or long-term care at some point in their lifetime. Of the 26 million persons over 65, about one-fourth are chronically 411 and currently have long-term health care needs. MNost of these elderly live in the community, although 1.5 million reside in nursing homes. Those frail elderly who are over B85 and live alone are at very high risk of entering a nursing home. In fact, 20% of the elders over the age of 85 reside in a nursing home. Sources of funding for institutional and community based care range from public programs to private savings and insurance to full care from families and friends. Seventy-five percent of the chronically ill living in their homes receive all of their assistance from family and friends. Nedicare and private insurance provide for little or none of the cost of home-based long term care. For the long term care population in nursing homes, 50% of the costs are paid for directly out-of-pocket. For the elderly who spend more tran $2000 out-of-pocket, in a year, over B0% will be spent on nursing home care. Private insurance, Medicare, the Veterans Administration, and other payors account for only 7% of nursing home expenditures. Medicaid has become the = payer for two-thirds of all nursing home residents and 42% of all nursing home expenditures. Because of the number of elderly in need of long-term care as well as the number of disabled who are institutionalized, it is not surprising that nearly three-quarters of all Medicaid expenditures are for the elderly and disabled. Solution/Action/Cost Regardless of the source of funding there is a dissatisfaction with the availability of home and community-based care options and with the gross match Detween the level of care an individual patient needs, the types of services available, and the reimbursement the provider receives. For current and imminent users of long term care services, a desirable objective would be to encourage appropriate use of necessary services in the least restrictive, cost-effective setting. To the extent this objective is met, all payors may see reduced expenditures and/or improved benefits. To do so will require a continued investment of research and demonstration funds into such managed care features as patient needs assessment, channeling, home and community- based care waivers, casemix reimbursement and social HMOs. B. NON-POOR ELDERLY Population/Risk Various estimates have been made regarding the economic status of the elderly. Although the average wealth of those over 65 now exceeds that of those under 65, the elderly are not a homogenous group. Forty-five percent of 363 older women living alone or with non-relatives are below the poverty level. This nonetheless leaves & substantial portion of the elderly with significant levels of disposable income and assets (both liquid and fixed.) For the non-poor elderly in need of long term care, there had until recently been no alternative except to rely on family and friends, or to qualify for Medicaid after exhausting or sheltering their resources. For example, in Massachusetts, 46% of single persons and 418 of married individuals who enter pursing homes exhaust their personal resources and qualify for Medicaid after three months and six months respectively. Solution/Action/Cost Recently, insurers have begun to offer private long term care insurance policies. Forty-one percent of those between the ages of 65 and 67 could, based upon income and assets, afford to buy insurance. If these individuals purchased insurance, Medicaid could potentially realize a 23% cumulative savings over time. Additionally, one-third of all those 65 or older could elicit $2000 a year from home equity conversion. Total home equity of this group is $600 billion. Insurance policies should be encouraged in order to reduce reliance by the . non-poor on Medicaid as the long term care insurer of last resort. However, elderly consumers have been reluctant to purchase insurance policies, even wher available. A survey shows that 79% of the elderly think that long-term care services will be paid by Medicare and 66% substantially underestimate the cost of care. In order to encourage private insurance, consumers need to be educated and disabused from their current beliefs that they are seldom at risk, that costs of care, if actually needed, are relatively low, and that such costs are, in any event, covered by Medicare or Medicare supplemental policies. Additional research on utilization and cost patterns is also essential to heip insurers design and price products appropriately. As data emerges, insurers will need a regulatory environment that is flexible enough to permit refinements to benefits and premiums, yet strong enough to assure that consumers are protected from uninformed purchases and unfair trade practices. Due to inflexible mandated benefit laws only one long term care policy can currently meet the law in Wisconsin and none qualify in Minnesota. The private market could also be encouraged through state and/or federal tax incentives to purchasers and sellers of long tern care insurance. Colorado has eracted such tax incentives. Finally, reliance on family members could be encouraged through tax incentives to related caregivers. Current tax lav allows each elderly person two personal exemptions. However, if an elderly person is the dependent of an adult child, only one exemption is allowed for that elder. Allowing a double exemption for dependent parents of adult children would provide some additional incentive to those children to take on 51% of their parents’ support. Another alternative would be to allow adult day care and respite care services to be a tax deductible expense much as child care is currently treated. 364 C. NON-POOR MIDDLE AGED Population/Risk Middle aged and younger workers would be the ideal market for private long term care products since premiums are affordable due to lower risk and a longer length of time to accumulate funds. A lower purchase price in younger years holds true not only for long term care insurance but for a variety of savings and asset accumulation products. For example, 27% of households with assets between 30 and 40 thousand dollars claim IRA deductions. Premiums could be reduced still further 4f private long term care protection were available through employer-sponsored groups Of active workers or retirees. Solution/Action/Cost The options for encouraging individual long term care insurance were offered dn the previous subsection. A more direct impact might be achieved by enhancing tax incentives for savings and asset accumulation, by waiving tax penalties for early withdrawal to cover long term care costs and by encouraging employer sponsored group coverage. Current tax incentives for employee health benefits would need to be retained and certain disincentives to prefunding of benefits would have to be overcome. These include recent provisions in federal statute (i.e., DEFRA), recent court decisions limiting employer flexibility, and proposed regulations by the Federal Accounting standards Board (FASB). However, the largest disincentives to group coverage are the massive unfunded liabilities, for pension and retiree health benefits which are currently facing employers. 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Provuic sssntonce for feb 10. Public or private fonds 10. Meghgible onsto ve 18. Supper © thew arpomicass, aad 1% oon Smsasered A A pobag seung employes we en edmeestes fepotcieans of rea0eed warham. Nearly oi . C . - of three wash Gor amal) ome & ass self 2b. Tos lacemives inchoding toa fh. Cogtributions by amphiye $6 bio coming © ib. Segpw otphayets deduction ue soil omphayed ant ond employes sad extused wa nl Erveene $0 biot sebovosa fae hadf of eoiecemd 1a. bender mime coverage 30. Bogie wa 0 condition of Lk Ll di fo beg han Bie afk GATORS OF 0S of employers by olf semployere emghoyer’s ton datestihalay » 3.27% of weston whe am vasamemd sit LE. Fat low sncems wurkbert, groves cher 2 Susbnutiae buy-in ho Slotted UD fodividel pemmen phe Bo to'omisane Be. Suppe yeas howe mveme below 129% of poany BEE SOVEINGE SPADES = vouchet for pushae of prvme Uniete sbestion eed peerider fond te edbfasnad 13 ae babes EYE 0. 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Sepps CA AO coveragh to on wderdeal pubicy whe tegnidee creat todoviduct mite seats hewn infevefon) uhderenieg eu rk 199% of covernd wathom bows eubob 1. Expand she bracts which oi sacha fo bioimbate Ermine cate Lo Coatribntions by cmpboyer aad Sho ctimme £ pio pada echt humo of $2000 & be o 18 plams affernd by employers sruphse beaefs nade employer poasdily amphayes, rogers seo LoL of fnood pleas tondaien of 1ab doductiiiay elndsskerernd tbedestd opens doy am hinted 19 18 or less. blondete minim Caloumphis bene: i Fedorel legolousa fo Sore end federal gooesst 4 blo patina £ pie pati pot yout ia 4 state ne wader nate plese vam + Poastdunl Yuingmmad 1a. 6.9 bellase uasempaansed cam 16.8 Aswid coateeod sores bo Tcausl 18. Evabdeh w 15. Sos sad boosh bos sree Uf, te geimene in wns 1954 inctudrag $1.3 bulla ia grass . asisal Gust thebugh poorest whan wah dmprpnetanse ye Seve 3h tori te eng me 15. Euablab sate guals for $5. Coat apwend to olf insureds vin 30. No cssionats Soe Sopp sanding tn Frondn amvmnpLonaed Shes Impl thems wssthonge ‘ 1 Ha progecuoma, depends on iagest of UL Duta seeded t9 182p0t srammscen 2. hunt puble/ private snesnh Be Pristic ond privee foadn Be fio ootimme & Swppont CATASTROPHIC OPTIONS Part ll: Under 65 ‘Sub Populations bY IMITLL) Action bv Hrtaperaiied Funding Soutves Cant Savings 8 Untesured Foe whe 056 nod oligibbe bos Modienid of gia Gommnge 69¢€ Lo One mullon (ee 30,0000 & Swe mab gods fer wtmsusabien 1 Stasc keginiatum 10 catabionh = adoviduoily ped premsms 5. Losess estimated at & Sapperne Se pd ee Dias =" a TT mem i 1178 to NS wi » wma ) mee pests beng implememedd - s ~ 8. Ad sich nates with an beeusnd 2. Copan ophoon fmm group corergs 2. Rogises sew federal an ie &. fadwideally pad graminee 2-100 of neadesd infirm form i630 motes with mandeies a A nf . 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Exablich shidhag scale for ound shateg £. Fodoool legniotmn pended to 08. Madicodd secipicets waeid | @0. Butimato net svadlehle 4 to policy. pon, ster poss and shove 00 by chgion above tune procestage of bent ound shatiag en moms pad has highar owt-of-pochat capenses pommy Cangevsd shigdmbay pony enacts - : sabaves h. Seate ond federd saviage Gime a tveilebis oumsldl be mead fat progenies apansians Olt _ATASTROPHIC OPTIONS ‘urt lll: Long Term Care AIL 1 IY AGING] Action LEGER TNT Cost Savings HIAA Palicw ih ghdadty of dat $00 © ae. AL 5%, 070 lulictians rh of oursiag L Eaceurege approgriae wee of ascgusiry 1 brpead stmunateat ions and mS Foders sotto fund 1 Relatrvely small soveriment UL Sugpuris oily saaehig Int ek ome Ubeme sbessesn. 30% of cide over 83 LSFVIOE 40 Ht Lonel PEMTICHNG, Sued RAR DUR CERO FORGENERL may seul ia tovinge te Meda. 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Bacoumge camgiviag by fomly 2. Tea sacentives such oo dovble- 2. Reduced fedomd tea sevens B. be entiemee 2. Seppo lang taren com oom engeld comgivee Ll —-wiA doductivics bug dependents » nh-gans chierly 8 0% of snghs sed 4% of mevind §. Esceurege grivese long serm cont ines $ Cumenmss efucsten £. Primarily public acres thoough § ble exticnase £ Supp shtors spend doom shar } vor 6 monghe | 20% 48 ovdhor 60 Feds the ond 10 apead agencies asrving the obdady in SNFHCE TO daa bieducass poy; deen. blokeod 4h eosenm of cotmng heme coe Be Oniy aie policy coo most meadued 2. Gacmemge aveilgbilay priv luag 2. A cunducive sate seguletary Re ans 8. bluse & Swppate tects low 10 Wiconue sed ssae guelify orm co iesureacs thet masts the mage of eovinment based an setem- 10 hlanseste. Oulamde hoo tos intenteme _paode of obdedly comumen mendetnme of NAIC end MME © eroshosemn ead seme Lang Term Com Comemamn 8 410 of age 65-47 cool buy imanmans Bh fecommge pruschees of privee long 8 Tos incentives tw puschesers £. fedeced nes sadier fodeesd 8 Slodicetd comuloes pave 5 Beppe tose a8 eves and sorts. Ous thisd ef £005 £089 ienamens pelicnss and maser iachading los coodits Gos sovenmme loge wp to 1D over tame far 28 63 + cond bove SIE poor fsa heme ood sndecsd premenmm ase jot this cohort. Total home SPAY CEEIEENED oqeity of 63 + is $400 bublson 4. abet date, pelecyboiden fece mene 4. Chass dus sseded bar mane Neos 4. Deter sossamh of oot ond wi G Smell sesensch epprepnianions 4. bo estes 4 Saggane oaremn pein and Rutindag premaas | eealae tatun patterns or-pege while ages £ torereecs in mess allsodle at §. Eaceumge carer puechose of proves £8. Sec above ku iodividuel loag 50. (See them 18. Seviogn om exthmmed to Sapper FEREgE apt feng t97m CRS sasuTRate orm cant pulacissd . 1b. $00 of employer pepvids slimes 0. Tes imensives for 1b. Coatcistiess £5. le cxthente Ls wah poms heohh bonefas (had foe BAZ I ya ant smphayees yp Seppe Gnlene io valunded ledulam {undong tg, smrad DEFRA) : } 5. TP of bowshetds batwaoe §30-40008 3 Sacewngs soviogs o con 3. Tes incentives fos hg term 2. Reduved bodesnl 00 tovennns Rio aetimase 2. Sppanie fined 504 dodoscns com panaly wmarvere Southern California Kaiser Permanente Medical Care Program REGIONAL PILOT PROJECT: HOME _CARE__FOR__HQSFEFITALIZED YENIILATIOR—-_DREPENDENT _PATIIENIS 1988-1987 Presentation to the Health Care Finance Administration Task Force March 5th, 1987 -- Torrance, California 376 DVULUTILU Valli vViuasee nalsoc” A wih ESNAMIWAII VLE NTWHAWwMLEe WHEL Ww 3 LWVEHs wae March 5th, 1987 HCFA Task Force Regional Pilot Project for Home Care of Hospitalized Ventilator—Dependent Patients Thank you for inviting us here today to discuss our experience with ventilator- dependent children and adults. We have tried to develop a reasonable broad clinical care strategy that includes: identifying and counseling those at high risk for future ventilator dependency; aggressive comprehensive medical care and weaning efforts for those on ventilator support; attention to ethical and medical appropriateness issues; and improving the life quality of those requiring long term ventilator support. Within this framework is our recent experience with care in the home and alternative community sites. This has been exciting and gratifying for our patients, their families, and our staff. 1 shall review our experience with ventilator-dependent patients, emphasizing children and our Pilot Project. We can identify twelve patients under age 21. I shall draw on this experience to identify further needs as well as barriers. Our experience may represent approximately a 10% sample of the population in this region. The process we developed relied heavily on the experience developed in other medical centers. Summary: 1. Home care for long term ventilator-dependent patients can be provided by acute care hospitals as well as tertiary care hospitals. The quality of care can be satisfactory and comparable to hospital care. 2. Patients and families who select home care prefer it, and judge their life quality as significantly better at home. 3. The cost of home care for these patients is less than in the acute care hospital. 4. A number of issues and problems are identified and discussed. Background: During the ten year period 1975-1985 at least 29 long term ventilator—-dependent (LTVD) patients were discharged to care at home or to skilled nursing facilities (SNF), from Kaiser Foundation Hospitals (KFH) in Southern California (see TABLE 1.). Some of these were totally ventilator dependent, but many were at a high functional level and are off the ventilator for some daytime hours. 23 are alive at this time: 20 at home of which 3 are under age 21; and 3 at a SNF. One additional teenage patient (D.T.) is at Rancho Los Amigos Medical Center. For most, the major cost was for durable medical equipment (DME) including oxygen. Many were able to manage the DME costs; often assistance was found from the community, or from special help funds from the KP Health Plan. One ALS patient (J.K.M.) obtains in-home LVN shift care through private health insurance. Although some specialized centers have had organized home care programs for LTVD children for many years, these have not served as models for community practice until recently. We had no home care experience with young LTVD children during the years 1975-1985. In 1982, a high average daily census for LTVD patients was identified at the Los Angeles KFH (4867 Sunset Boulevard) and at the Panorama City KFH. Many of these patients had a long length of stay, some measured in years, in KFH acute care and critical care bed locations. This was particularly true for children 377 KP Home Care Pilot Project (see Table 2.). A study was begun in 1983 by our Planning departments, to evaluate the dimension of the problem, and to present options. After a careful study of LTV patient bed utilization, our Program Planning projections for the average daily census for LTVD patients in the nine KFHs in Southern California were: 1987 1990 1995 Low estimate: 25 30 35 Moderate estimate: 30 35 40 High estimate: 30 40 50 The projections were based on a Health Plan membership of approximately 1.8 million in 1985; projected membership growth; and changes in age, illness, technology and care patterns, etc.. Based on this, one consideration was to provide additional KF beds for these LTVD patients, either in one regional center, or several sub-regiona locations. While the study progressed there were a number of major changes in hospital and community care practices: 1. PL 98-21 was passed in 1983. Implementation of the DRG system led to ae. decline in bed utilization and an alleviation of KFH bed shortages. 2. Increased interest and support for out-of-hospital care for LTVD patients by government and by professional groups (eg: AAP, ACCP, ATS, ALA). Standards an guidelines were developed. Respiratory units in some SNFs became available. Community residential facilities were approved for LTVD patients. DME vendors developed stronger respiratory home care services. 3. Increased public awareness of issues and choices related to ventilator support, as well as home care options. In May 1985 Rancho Los Amigos Medical Center presented an excellent professional educational program on home care for LTVD patients, at the time of the May 1985 American Thoracic Society scientific meetings in Anaheim. We were impressed that much more home care might be possible, with improved quality of life for our patients. The available U.S. economic data based on billable charges/services indicated a large savings for home care. We reviewed the Kaiser Permanente Medical Care Program (KPMCP) benefits and other resources available to our patients: (1) Physician and nurse visits to home or alternative sites have always been a benefit. Kaiser Home Heath Agency support is benefit for all members. (2) About 21% of our members have a DME benefit, some subscriber groups have elected this option, plus those on Medicare. (3) There is r defined benefit for in-home shift care, but a few members might qualify for MediCal in-home medical care services (IHMCS), see below. In May 1985 a proposal was developed by our pulmonary physicians requesting a Regional Pilot Project for Home Care of Hospitalized Ventilator-Dependent Patients. The objectives include: 1. To allow these patients to go home so that they might have a more normal life, reunited with family; 2. To provide continuity of care in the home which would include Home Health Agency, DME, supplies, MD management, and when needed in-home shift care; 378 KP Home Care Pilot Project 3. To formalize and evaluate this home care for both children and adults; 4. To relieve inappropriate hospital bed occupancy; and to evaluate the impact of the home care program on the KFH average daily bed census for these patients; and 5. To provide actual clinical and cost experience with our own patients. There was some concern that the project might not be a good decision; the questions included: 1. Possible increased liability risks by providing care in the home, for complex technologically dependent patients. 2. That this might provide a precedent for in-home services that could be claimed by others as a "right" for similar support (others not in the target population of hospitalized LTVD patients): the "woodwork effect". 3. Once started it might be difficult to stop even if the experience was not satisfactory. 4. Problems were anticipated in developing contract benefit language to properly define the home care benefit for the limited LTVD sub-population. It was decided to go forward with the pilot as a health care research project with a IRB-approved consent form. A number of aspects needed special attention: (1) Hours of shift care. Data from other centers reported at American Thoracic Society scientific meetings indicated that when more than 16 hours of in-home shift care is needed, the costs can be greater than hospital acute care costs. A 16 hour/day maximum was established. We also wanted a definite family commitment and involvement. (2) Shift care staffing. Although attendant level care has appérently worked well for many LTVD patients (at other centers), LVN in-home care was selected. LVN in-home shift care seemed to ensure higher quality, easier preparation and supervision, and possibly less liability. However the higher LVN hourly costs decreased the cost advantage of home care. It is not clear whether children might have more need for LVN level care than adults, when shift care is needed. (3) Agency vs other options. We decided to use Nursing Agencies to provide LVN in-home staffing in order to achieve more supervision and control of quality, and better staffing continuity. (Direct payment to individual homecare givers was considered; further consideration of this was deferred until more community experience is available.) Emphasis in developing the Pilot Project was given to: a physician-led multi-professional team approach; tight supervision; continuity of care; carefully defined roles, process and documentation; patient/family participation; quality assurance: concern about cost issues but priority given to optimal care: evaluation of care and costs. Next the process of selecting and preparing appropriate LTVD patients (and their families and other care givers) for home care was carefully developed, reviewed and formalized. Many working Eioups in the different professions, from all our medical centers, developed consensus. A project manual was prepared to guide the process. The data base needed was defined; data was collected on all the LTVD patients in the nine KFHs starting November 1985 (in addition to patients who were discharged to care at home). Quality assurance and quality of life assessment instruments were developed. The pilot project Steering Committee also decided to monitored care options at other out-of-hospital alternative sites (so far we have not found any available for younger children). Liaison was established with experienced centers in the community (eg: Rancho Los Amigos Medical Center, and Children's Hospital of Los Angeles); with the American Lung Association and the California Thoracic Society. We participated in the July 379 KP Home Care Pilot Project 1986 invitational State conference on "Care of the Medically Fragile Child Outside of the Acute Hospital". We have worked through related issues with many agencies, including: California Children Services, MediCal, the Department of Developmental Disabilities and Regional Centers, and the State LVN Board (Board of Vocational Nurse and Psychiatric Technician Examiners). A formalized process was established with DME vendors, and with Nursing Agencies to provide shift carey through an RFP and contracting process, the quality standards and expectations were defined as well as cost. The increased attention to care strategies for these patients, due to the Program Planning study and the new pilot project had some secondary impacts in our medical centers: (1) Some adult patients were moved out of critical care units into step-down units or to acute care beds with a nursing intensity of about 8 to 12 hours/day. (This was generally not felt appropriate for younger children.) (2) More attention was given to review of medical ethics, patient’s rights to make decisions, and medical appropriateness issues in ventilator care. Some comatose or persistently vegetative patients were then withdrawn from ventilator care at the request of the family. (3) Subacute care alternatives in the community were identified for LTVD patients inappropriate for home care. Prior to the Pilot Project our families were often frustrated and upset because they wanted their child at home but could not arrange resources. One family initiated legal action (and local newspaper advocacy articles) perceiving home care as 8 "right" despite no contractual defined benefit and previous medical instability of their child. Another family had their child at another major center temporarily, and was advised that they could either bleed their resources down to the MediCal eligibility level, or give their child up for adoption. Occasionally a family withdraws and no longer wants to be involved. Pilot Project Experience since November 1985: Nineteen LTVD patients have been discharged to home care (see TABLE 3.). Four of these (21%) are under age 21. Financial data for the first twelve months of the project have been analyzed; TABLE 4. presents the data for these four patients. The patients, families and medical center clinical staff have all been highly ~ committed to providing home care. The enthusiasm has been impressive. This required a major effort and many staff hours to develop the process at the seven KF} medical centers that have already had patients go home. The time needed was often squeezed into already busy staff schedules. This effort and enthusiasm demonstrates the high value perceived for the home care of these patients. The possibility of regional or sub-regional centers for LTVD patients was considerec but not supported by the staff at the nine medical centers. We have found that the care of these patients can be managed effectively in nine hospitals, of which one is a tertiary referral and teaching center. Continuity of care is better. The regional coordination has worked well. TABLE 2., presents information on the eight LTVD patients in our hospitals under age 21; since November 1985. The average hospital length of stay is 33 months, prior tc discharge home. The four on home care now average over 14.5 months at home each. Three are no longer ventilator dependent; one due to successful weaning, one other comatose for 78 months, had ventilator support withdrawn at the request of the family (a medical ethicist worked with staff and family first). Only one other 380 KP Home Care Pilot Project remains hospitalized because the family does not want to take responsibility at home and cannot deal with the poor prognosis. Pre-discharge preparation/teaching and competency certification required at least two to three weeks for each patient and the home care givers. But in many cases this lasted six weeks, or more, when delays occurred for medical reasons, or when there were problems with support arrangements. 20-30 or more hours of staff time is often needed for teaching and preparation (this increases staffing needs during the predischarge period). A "team approach” and team conferences are essential although time consuming. The DME vendor can help with teaching and preparation related to the respiratory care and other equipment. Documentation of skill competency is best done by the hospital staff prior to discharge. The special preparation LVNs need most is related to respiratory care skills, tracheostomy care and suctioning, the ventilator and other equipment. Other special skills may also be needed (eg: gastrostomy care). Many DME vendors available are quite good and have developed special training and support systems for LTVD patient home care. DME vendor documentation materials, and printed teaching aides, are often very good. The 24-hour/day, 7-days/week response from the DME staff has generally been reliable. Equipment is rented in order to obtain this DME vendor support. Identical back-up ventilator equipment is provided for those who cannot sustain respiration themselves for at least an hour. The home equipment system is checked and used in the hospital prior to discharge home. Home respiratory equipment, including portable ventilators and alarm systems, Jhave improved greatly over the last ten years. There are still some safety problems. Careful maintenance and contingency planning is essential. The patients and families have generally learned the needed care skills quite well. They are able to do considerable teaching and supervision of the shift care staff in the home; and tend to be critical of the level of LVN skill available. After months at home the skill levels of the patient and/or family usually become quite impressive. The LVNs are essentially providing surrogate staffing to replace/extend help from a family member who must work or sleep (the family member is usually not a trained or licensed nurse). It is important to ensure their competency and proper supervision. The skill competency and continuity of in-home shift care staffing is often not satisfactory. The LVN staffing available for LTVD home care patients, through Nursing Agencies (Registries) is a new need in our communities. The number of LVNs with prior critical care, respirator, and tracheostomy experience is less than adequate. The curriculum in LVN schools does not cover these skills. There is no program to formalize the teaching or competency standards needed, nor any State certification process yet for these special skills. The LVNs working in Registries usually do not want steady work; so the turn-over experienced by our patients is too high. This is a problem. The Board of Vocational Nurses has concerns about the LVN role in home care of respiratory patients. We have agreed that: the expectation and care plan must be clear; the LVNs must be well supported by MD and RN evaluation; that they must be competent in the special skills before taking responsibility in the home: that the Home Health Agency registered nurse must regularly visit the home and be available regarding problems; that a RN nursing supervisor from their Agency must support them and provide both in-service and supervision. The LVN Board has allowed this so far; this includes emergency tracheostomy changes and competency training. But this is an area of continued concern regarding nursing practice. Also, the registered nurse who supervises the Nursing Agency often has not had special training or experience with ventilator-dependent patients. Other staffing options may be worth exploring. 381 ™ ‘Tome Care Pilot Project The KFH Home Health Agency from each medical center manages the home care. The complexity of care is a challenge and requires special resources (more skill and time). Increased intensity is needed initially, and for periods of instability. Case management is done through the KFH Home Health Agency. Other community resnurces are coordinated. For children this often includes special educational arrangements, assistance from the Regional Centers for rehabilitatton support, financial resource counseling, and psychosocial assistance. Quality assuarance evaluations by the KF Home Health Agency registered nurses have identified care problems and initiated corrective action. The LVN staffing has been a recurrent source of problems. The health impact of these has been low due in part to the regular supervision. In one instance an adult patient had to be rehospitalized because the family repeatedly neglected care. No major adverse occurrences have been identified. We have used a standardized assessment questionnaire; over-all, the assessments from patients, family, staff and physicians indicate a high confidence in the quality of the care at home, and a judgement that it is satisfactory and comparable to their hospital care. Quality of life evaluations by standardized questionnaire (as above) found that patients are much happier at home than in the hospital, and have more control over themselves and their care. They enjoy more time with family and friends. For children this appears to be particularly important, and development seems to be mucl more normal at home. In many cases functional level improves greatly; increased time off the ventilator (J.M.C.), or even full weaning (M.L.S.) that could not be achieved in the hospital. Financial Data: Ventilator-dependent children at Kaiser Foundation Hospitals in Southern California are generally cared for in a critical care unit. Because the KPMCP is a pre-paid medical care program, we do not usually prepare bills for services, or track in detail the services a patient receives, and supplies used. Other Los Angeles community experience suggests that the daily billable care cost in critical care units are: $ 1500 to $ 2000 or more for these patients. (Wher documentation is prepared for patients applying for MediCal, or for other purposes, then the KFH financial department prepares this data as a special report.) Our financial data is not complete. It is gathered to allow a reasonable administrative evaluation for decision making; further data is collected if any cost/savings comparisons are found to be borderline and need greater detail. The financial evaluation seeks to answer the major question: "Does home care for these patients save money?". And, "Does the magnitude of the savings make home care worthwhile when considered with other issues?". In addition we-are interested in analyzing data in enough detail for planning and policy purposes. (1) Our actual home care costs. This includes outside charges from: DME rental, anc Nursing Agency for in-home LVN shift care. And the cost of: RN or PHN home visits from the Kaiser Home Health Agency, and supplies. It does not include: Home Health Agency administrative and supervision time, nor any physician time. (2) The "operational costs" in the hospital. This is not full cost data as might be reflected in Medicare charges. Our data strategy is to do a strict construction of incremental cost for these patients. This should responsibly reflect cost savings that occur when these patients are discharged, assuming 382 KP Home Care Pilot Project other aspects of hospital operation are unchanged. This is the marginal cost of caring for the patient in the KFH compared to having the bed empty. It varies with bed location (eg: critical care vs other bed locations). The evaluation is a conservative approximation after reviewing the pilot project patients. It is not based on a detailed on-site full cost accounting. It focuses on: hourly cost of nursing and respiratory care staff, dietary and linen costs, respiratory equipment, and daily supplies. This may be an under-estimate since the following costs are not included: administration and supervision, daily physician visits for hospital patients, in-service teaching, and a variety of possibly low frequency items (tests, consultants, other professional staff support, etc...). With these reservations in mind, the operational hospital cost for a LTVD child in a critical care unit is estimated at: $ 430 per day ($ 156,950 per year). For an teenager or adult who might appropriately be placed in a "step-down unit”, or in a medical unit designed for LTVD patients, the estimate from our KFH experience, ranges from $ 312 to 274 per day ($ 113,880 to 100,010 per year). The actual home care costs for the four who were under age 21, during the first year of the pilot project are presented in TABLE 4. These averaged $348/day. Their home care costs were high because they required the maximum hours of LVN shift care per day; this represented 79% of the home care costs (see pie chart). The operational hospital cost for these four patients was $430/day; they were all in critical care bed locations until discharged home. (See discussion, above, for limitations regarding hospital cost data.) MediCal reimbursement: The cost to KFH will be decreased when confirmation of reimbursement for IHMCS (under PL 97-35, section 2176 waiver program) for one MediCal patient (M.L.) and perhaps a second (M.L.S.); since this would cover most or all the home care costs. However the process needed to qualify a MediCal patient for the IHEMCS under the 2176 waiver program is often slow, frustrated by intricacies, and seems to be unnecessarily difficult. Compared to our adult Pilot Project patients, the cost for LTVD children may be higher because: (1) they are medically more dependent (and vulnerable) and require higher hours of LVN shift care; (2) they are less often off the ventilator for some daytime hours; (3) they are less able to be responsible for themselves; and (4) they receive no Medicare reimbursement. Also, the hospital cost savings is lower, since many of the adult LTVD patients are not in critical care unit beds (thus the difference between home care and hospital costs, is smaller). The Pilot Project has had only 18 months experience so far and probably is over-represented with children with high dependency status. They were not able to leave the hospital until the additional resources were available. We note other children who were able to go home in the past with less support (see TABLE 2.). L.A. (age 20 - spinal cord injury) is on a rented PLV portahle ventilator 24 hours a day. MediCal pays for this and a back-up. He is having difficulty getting his wheelchair repaired. His family assist him. MediCal pays about 6 hours a day for attendant level care (minimum wage) which enables his sister to stay with him. G.M. (age 19 - muscular dystrophy) has a rented LP-6 portable ventilator which he needs over-night, but up to 24 hours/day when he has a respiratory infection. His family assist him. He has been home ten years, since age 9. He is hospitalized about twice a year for short periods. Nurses and respiratory care staff from the Fontana KFH stop in to see him regularly. The Elks Club provides a physical therapist visit once a week. 383 KP Home Care Pilot Project Our Future Plans: 1. Medical care and Benefit recommendations. After we have more experience and have a cledrer sense of accepted community practice and government policy, we will be able to make recommendations for the KPMCP. . Subacute facility care needs for LTVD patients. We are looking into subacute facilities for some LTVD patients at this time. Issues include: _justification for selecting subacute alternative sites rather than home care; quality and cost. At this time the average daily cost for LTVD adult patients in an excellent SNF is $400/day; and at a residential community facility would be about $350/day. . Possibly extending the Pilot Project to selected LTVD patients outside of a KFH; particularly "prehospital evaluation" to avoid unnecessary hospitalization. . Respite care and other support will need to be considered. This includes psychosocial support, special transportation and socialization needs, and the role of support groups for patients/families. . General concern to increase quality and standards while avoiding impossible cost consequences. Discussion of Problems related to Home Care of these patients: 1. Factors which tend to drive costs up: A. Cost for licensed nursing shift care. Attendant or aide level care would be less expensive. There is an enormous cost saving potential if trained non-professionals are used to supplement family caregivers, under professional Home Health Agency supervision. It is not clear whether quality and competency of care would be significantly different. . Contracting with Nursing Agency (Registry) for shift care. The alternative of direct payment to patient/family (as MediCal and Blue Shield have done) would save some cost and could increase the patient's control. The patient/family might ensure better quality. Or, loss of Agency management might decrease competency/quality of staff, decrease supervision and increase liability. . Renting equipment from DME vendor. This greatly increases cost but indirectly enables purchase of 24-hour/day back-up services from skilled respiratory care staff. Improvements in equipment are quickly available. If reliable technical back-up and teaching support could be achieved separately from the DME vendor (as apparently occurs in England and France), then cost savings would be possible. D. Malpractice and liability risks. 2. Lack of standards of care for LTVD patients in SNFs. We are not aware of any formalized standards for subacute care in alternative sites. SNF regulations in California do not address this. At this time standards are being written for community residential facilities, pursuant to State law AB 3535. There is some reluctance to address quality issues for fear that costs or. profitability will suffer. Since about 50% of SNF care is paid through State and Federal programs, there should be an opportunity to establish standards with participation of professional organizations (AAP, ACCP, ATS, etc.), the American Lung Association, etc.. . Lack of licensing or certification for persons who work as home—maker health aides with LTVD patients. The competency certification needed includes skills related to all aspects of home respiratory, tracheostomy and ventilator care. This question needs consideration to avoid improperly qualified persons renderin such care. (This applies to LVNs also.) 384 KP Home Care Pilot Project . Community Agency or Organization to Coordinate Care for LTVD patients s at home. At this time professional staff, patients and families are often uncertain and confused as they try to arrange home care. Reliable information, advocacy and support is not regularly available for the special needs of these patients. The American Lung Association, SKIP, or other possibilities might be explored. The experience in other countries, such as England and France (as discussed by Dr. Allen I. Goldberg) should be considered. 5. A State Plan to support the Care of Ventilator—Dependent Patienfs in the Home or Alternative Sites. A task force is needed in California to evaluate needs, . make recommendations, and facilitate action. (This should tie in with the HCFA Task Force.) Concerned groups have already been meeting, but support is needed from high levels of government and health care in order to move forward. The time is right. The American Lung Association of California and the California Thoracic Society might be able to coordinate this process if such a task force were appointed. It might be useful for this to be jointly sponsored by DHS, ALAC, and CTS. Emphasis should be on solutions which would ensure improved care, facilitate the process, and avoid any unnecessary new public cost burden. 6. Documented and evaluated education for patient/family, home care givers, and hospital staff. Considerable experience is developing, but further effort is needed to ensure the needed quality and competency. 7. The MediCal waiver program, under section 2176, for IHMCS should be simplified, for the benefit of the intended patients, and for MediCal cost savings (compared to hospital care charges). Edward Anthony Oppenheimer, M.D. Chairman, Regional Steering Committee; and Chief, Pulmonary Medicine Los Angeles Kaiser Permanente Medical Center Office address: 1526 N. Edgemont Street Los Angeles, California 90027 (213) 664-4022 EAO/hmvt 3/5/87 385 KP Home Care rilot rroject TABLE 1. (ee .Prior to Pilot Project...) (Discharged prior to start of Pilot Project, November 1985.) VENTILATOR PATIENTS out—of-—KF—HOSPITALS At HOME or at an ALTERNATIVE SITE Original KP Reason for being PATIENT: Hosp Locat: Ventilator-Dependent: Ventilator-Dependent Patient at Out-side Hospital: D.T.* 18 ? Medicare and MediCal San Diego Cervical cord injury [at Rancho Los Amigos Medical Center) (applied for) Ventilator-Dependent Patients at Home: A. Under Age 21: L.A.® 20 Fontana MediCal Cervical cord trauma J.B.* 20 Fontana me Sleep Apnea Syndrome G.M.* 19 Fontana MediCal (G) muscular dystrophy, kyphoscoliosi: B. Adults (over age 21): R.B. 57 Los Angeles Kyphoscoliosis, Cor Pulmonale L.D. 59 Los Angeles ——m—- post-polio respiratory failure C.DeC 65 San Diego Medicare Quadriplegia E.D. 27 Fontana MediCal Muscular dystrophy H.H. 56 Fontana ALS V.K. 70 Fontana Medicare Kyphoscoliosis J.M. 61 Harbor City -——m ALS L.M. 55 San Diego MediCal (G) ALS + cervicolumbosacral scoliosi: J.K.M 61 Los Angeles Prvt.Insur. ALS L.O. 45 Los Angeles Medicare C3 cord compression due to mening S.P. 56 Los Angeles —— post-polio D.R. 45 Los Angeles — - post-polio; kyphoscoliosis J.S. 62 Los Angeles — Diaphragmatic paralysis;acid malt D.S. 26 Los Angeles Medicare Cervical cord injury Cl-2 Fx and MediCal (motorcycle accident). 4 patients under age 21. 386 KP Home Care Pilot Project LTVD PTS prior to Pilot Project - at Home or Alternative Site Original KP Reason for being PATIENT: Age: Hosp Locat: Ventilator-Dependent: = = = — ———— — — — — — — — — — — — — ——— — — — — — — — — — — ——————— TES SS SS SS SS SS SS SS SE SS SS SS SS SS SS SSS SS SS SS SS ESS SS SS SS SS SS SSS SS SS SS SS SS Ss sess ======== Ventilator-Dependent Patients Weaned after leaving Kaiser Foundation Hospital: G.L. 52 Los Angeles C3-4 injury; quadriplegia M.M. 31 Harbor City --————- — anoxic brain damage Patients at SNF: M.L.F. 76 Harbor City Medicare COPD T.G. 74 Harbor City Medicare C-2 spinal cord injury S.0’S. 68 Bellflower Medicare COPD Ventilator-Dependent Patients who have died after KFH discharge to home or SNF care: S.A. 47 D.G. 57 E.G. 56 C.I. 62 F.O. 36 H.O. 69 Los Angeles Los Angeles Anaheim Harbor City Los Angeles Los Angeles Medicare resp.arrest, anoxic brain damage ALS Cl-2 spinal cord injury COPD Interstitial Lung Dis.; rheumatoid Aspiration; anoxic brain damage Note: There may be additional LTVD patients discharged home 1975 through November 1985, who were not identified by the retrospective review bone in 1985-86. EAO/hmvt 3/2/87 387 KP Home Care Pilot Project TABLE 2. F/U all LTVD PTS since 11/85 LONG—TERM VENTITATOR—DEPENDENT CHILDREN: Ventilator- dependent. * Months in Kaiser Disposition: Diagnosis and PATIENT: AGE: HOSPITAL: {months home} Comments: J.M.C 5 24 Home Care Guillian-Barre syndrome. since 3/86. Gastrostomy & tracheostomy. Stable. Doing well at home; goes to {12 mos.} regional elementary school. M.L. 4 21 Home Care Bronchopulmonary Dysplasia since since 12/85; neonatal period. Tracheostomy. multiple hosp Soft diet. Fragile medical status. readmissions. {13 mos.} L.S. 6.5 62 Home Care Werdnig-Hoffmann syndrome. since 12/85. Tracheostomy & gastrostomy. Stable. Parents very pleased with home care. {24 mos.} M.L.S. 20 8 Home Care Cervical cord injury from MVA. since 5/86. Tracheostomy. Weaned off ventilator Stable. after being home 4 months. {9 mos.) E.B. 1 13 Died in ICU Carpenter’s syndrome; brain damage since 8/86 birth; ICU on ventilator last 4 mos. J.B. 7 78 Ventilator Near SIDS, resuscitated but anoxic brain withdrawn, damage and coma since age 4 months. died 11/86. Gastrostomy & tracheostomy. Parents decided to stop ventilator. D.S. 3.5 32 Weaned 7/86. Neonatal asphyxia due to prolapsed” Still cord. Anoxic brain damage; comatose. requires Gastrostomy & tracheostomy. hosp care. No likelihood for improvement. D.T. 13.5 24 Still Hosp. Massive intracranial bleed (aneurysm); anoxic brain damage; comatose. Gastrostomy & tracheostomy. No likelihood for improvement. These are all the patients under age 21 identified at Southern California Kaiser Foundation Hospitals since November 1985. Additional patients were discharged from KFHs prior to that time (see TABLE 1.). EAO/hmvt 388 3/2/87 KP Home Care Pilot Project TABLE 3 PIITLOT PROJECT HOME CARE VENTILATOR—DEPENDENT PATIENTS: Original KP Reason for being PATIENT: Age: Hosp Locat: Ventilator-Dependent: EP EE ET TT EE ET EE ET EE EE EE EE ET EE EE EE EE EE EE EE EE EE EE ET EE EE EE = or oe = = or = =o =P TT = = > = = = = ER EE a EE A Nr ttt tr Pt tt + + + 3 A. Patients at Home at this time: 1. CHILDREN: J.M.C. 4 LA - Peds ICU —— Guillian-Barre syndrome M.L. 3 Bellflower ICU MediCal Bronchopulmonary Dysplasia L.S. 5 LA - Peds ICU Werdnig-Hoffmann’s Disease M.L.S. 20 San Diego ICU ?-MediCal C3-4 cervical cord trauma, head injury (weaned off ventilator after 4 months at home) 2. ADULTS (over age 21): Z.B. 69 Panorama Medicare post-cardiac surgery phrenic nerve damage J.A.C. 69 Panorama Medicare COPD T.A.C. 62 Panorama -_ Asbestosis, Interstitial Lung Disease F.H. 60 Los Angeles Medicare kyphoscoliosis, restrictive lung disease R.A.H 69 Harbor Medicare COPD E.L. 51 LA - ICU ———-— Polyneuropathy, dermatomyositis R.N.M 84 Los Angeles Medicare s/p respiratory arrest; multiple Diagnoses B.M. 46 Fontana — - syringomyelia, quadriplegia AM. 63 Panorama _ Muscular dystrophy V.M. 69 Bellfower Medicare COPD C.V.S. 70 Panorama Medicare COPD : L.W. 63 Fontana ICU High Cervical Cord Injury D.W. 57 Harbor - kyphoscoliosis, restrictive lung disease B. Home Care Patients readmitted to Hospital and Died: P.R.B 66 Harbor ICU Medicare ALS A.W. 33 LA - ICU — Scleroderma EAO/hmvt 3/2/87 389 KP Home Care Pilot Project TABLE 4. FINANCIAL DATA for PATIENTS under AGE 21 November 1985 through November 1986 Total Total Average Patient Savings: Savings J.M.C. M.L.* L.S. M.L.S.®* Days: per day: DAILY COSTS and SAVINGS: KFH operational cost saving per Hosp Day!: $430 $430 $430 $430 $430? Home Care Costs DME rental: $33 $75 $71 $44 LVN shift care: $280 $285 $283 $253 [av.# hrs/d] [16 hrs] [16 hrs] [16 hrs] [14 hrs] Home Health Agency visits: $10 $10 $10 $10 Supplies: $7 $7 $7 $7 Total Home Care (costs/day): ($330) ($377) ($371) ($314) ($348) Net Daily Savings: $100 $53 $59 $116 $82 Days at Home: 261 308 340 194 1103 TOTAL SAVINGS: $26100 $16300 $2000 $22500 $84900 Aver.Savings/day: $ 76.97 1 This is based on a strict conservative construction of incremental cost; not the full cost. The estimate includes KFH operational or marginal costs for a limited core of daily costs for these stable LTVD patients, in a critical care unit bed. See text (above) for discussion. * Note: Home Care costs might be covered by MediCal reimbursement for patients M.L. and M.L.S., under IAMCS, section 2176 waiver program. This would further improve cost savings of home care to KPMCP. EAO/hmvt 3/2/87 390 L6€ KAILER PERMANENTE REL.ONAL PILOT PROJECT HOME CARE COSTS ~—(16%) ey —(2) —(s%) (79%) VEMNTILATOR-DEPEMDENT CHILDREN Sd DME rental LVN Shift care H.H.Agency Supplies 309f0ad 3011d 24) 3WOH Southern California Permanente Medical Group Los Angeles Medical Center Pulmonary Medicine Regional Pilot Project for February 1987 Home Care of Hospitalized Ventilator-Dependent Patients REFERENCES: A. GENERAL: 1. Amer Lung Assoc: ALA Position Paper on Home Health Care. A.L.A.; 13 pages (1982). (Suzanne C. Lareau, RN, Chairperson: A.L.A. Pediatric & Adult Lung Disease Subcommittee on Home Health. ] 2. Bell, W.C., PhD: Home Care & Rehabilitation in Respiratory Medicipe (book) J.B. Lippincott Co.; 322 pages (1984). 3. California Thoracic Society: Position Paper on Out-of-Hospital Ventjlator Care. C.T.S.; 2 pages. (June 1985). 4. Callas, T: Home Mechanical Ventilation. Rx Home Care pages 45-50; (July 1985). 5. Crittenden, F.J.: Discharge Planning for Health Care Facilities (book) R.J. Brady Co.; 211 pages (1983). 6. Frownfelter, D.L., RPT, RRT: Chest Physical Therapy apd Pulmonary Rehabilitation (book) Year Book Med Publ.; 2nd Bdition (1987). 7. Gilmartin, M., BEN, ERT: Home Care of the Ventilator Dependent Person. Respir Care 28:1490-149 (Nov 1983). 8. Giovannoni, R., BRT: Chronic Ventilator Care: From Hospital to Home._Rx Home Care, page 51 (Jan 1985). 9. Giovannoni, R., RRT: Chronic Ventilator Care: Hospital to Home irato Therapy, pages 29-33 (July/Aug 1964). 10. Goldberg, A.I., MD: Regional Approach to Home Care for Life—supported Persons. Chest §6:345 (Sept 1984). 11. Hodgkin, J.B., MD: Pulmonary Rehabilitation (book); Butterworth Publishers; 440 pages (Oct 1984). 12. Indihar, F.J., MD: Experience with a Prolonged Respiratory Care Unit - Revisited. Chest 86:616-620 (Oct 1984). 13. Maguire, M., BRN, BSN: Teaching Patients’ Families to Provide Ventilator Care at Home. Dimensions in Crit. Care Nursing 4:244-255 (1982). 14. Make, B., MD: Rehabilitation of Ventilator-Dependent Subjects with Lung Disease. Chest 86:358-365 (Sept 1984). 15. Prentice, W.S., RN, BSN: Outpatient Management of Ventilator-Dependent Patients. Pulmonary Rehabilitation -J.E.Hodgkin, et al (Ed.)(book), Chap 19.; 323-352 (1984). 392 Regional Pilot Project for Home Care of Hospitalized Ventilator-Dependent Patients REFERENCES, continued 16. Rancho Los Amigos Medical Center: Ventilator Dependent Adult & Child: Hospital to Home. Prof Staff Assoc Rancho Los Amigos Medical Center. 129 pages (May 10-11, 1985): course syllabus. 17. Heoppner, V.H.: Nighttime Ventilation Improves Respiratory Failure in Secondary Eyphoscoliosis. Amer.Rev.Resp.Dis. 129:240-243 (1984). 18. Sivak, E.D.: Pulmonary Mechanical Ventilation at Home. Respir Care 28:42-49 (1983). 19. Splaingard, M.L.: Home Positive-Pressure Ventilation. Twenty Years’ Experience. CHEST 84:376 (Oct.1984). + Editorial page 365. 20. Sivak, E.D.: Home Care Symposium. Cleveland Clinic Quarterly 52:283-355 Number 3. (Fall 1985). Many excellent articles in this collection. 21. Votava, K.M.: Home Care of the Patient Dependent on Mechanical Ventilation. Home Care Policy Development and Goal Setting Used as Outcome Criteria for Quality Assurance. Home Healthcare Nurse 3:18-25 (1985). 22. O'Donnohue Jr., W.J., et al.: Long-Term Mechanical Ventilation. Guidelines for Management in the Home and at Alternate Community Sites. American College of Chest Physicians. CHEST 90:1S5-37S supplement (July 1986). 23. Goldberg, A.I1.: Home Care for Life-Supported Persons. Is a National Approach the Answer ? CHEST 90:744-748 (Nov.1886). 24. California Thoracic Society: Lung Patient Financial Services Guide. (1986) B. PEDIATRICS: 1. American Academy of Pediatrics: Brook Lodge Symposium: Ventilator Dependent Child (Report of Symposium) 35 pages (Oct.1983). Copies may be obtained from the Children’s Home Health Network of Illinois, East 65th Street at Lake Michigan, Chicago, Illinois 60649. 2. Burr, B.H., MD: Home Care for Children on Respirators. N.B.J.M. 309:1319-132 (1983). 3. Frates, R.C., Jr., MD: Outcome of Home Mechanical Ventilation in Children. _J. Pediatrics 106:850 (May 1985) . 4. National Association Home Care: Pediatric Home Care (Collection of 12 articles). Caring 4:3-96 (May 1985). NOTE: Many more references are available; those above provide many additional citations. The July 1986 supplement of CHEST, and the May 1985 syllabus from Rancho Los Amigos Medical Center (above), both include a large bibliography. 393 EAO/hmvt 2/22/87 (rev.) Robert Essink Director, Enrollment & Group Relations Remarks to Task Force on Technology-Dependent Children Health Care Financing Division Department of Health And Human Services Torrance Marriot Hotel March 5, 1987 Introduction Good morning. My name is Robert Essink and I am currently the Director of Enrollment and Group Relations for Kaiser Foundation Health Plan in the Southern California Region of the Kaiser Permanente Medical Care Program. Dr. Edward Oppenheimer and I are pleased to be here today to briefly describe the Kaiser Permanente Medical Care Program's experience with chronic ventilator dependent children in a home care pilot project which has been in progress since November, 1985. Dr. Oppenheimer will be addressing the specifics of our pilot project and I will be discussing the questions of benefit development and contractual interpretation as they apply to the project. Kaiser Permanente Medical Care Program Although Dr. Nomura has no doubt familiarized you with Kaiser Permanente, I'd 1ike to briefly acquaint you with our Program, particularly in Southern California. The Kaiser Permanente Medical Care Program is a group practice prepayment plan providing comprehensive medical and hospital service to about RE:df :EGR87-161 394 five million voluntarily enrolled members in twelve geographic regions. Each of the Program's established Regions is a Federally qualified health maintenance organization. In 1986 the Program's resources and scope of activity included: 5,500 physicians, representing all specialties, who devote all their professional time to the Program. 48,000 nonphysician health care professionals and administrative, clerical, and technical employees. 28 medical centers with 6,757 licensed hospital beds and more than 140 medical office locations for outpatient services. Kaiser Permanente is organized on a decentralized basis, with each of its twelve Regions having substantial responsibility for managing its own operations. Almost all decisions on the day-to-day management of health care services and facilities are made at the Regional level, through a structure consisting of separate but closely cooperating organizations with the common purpose of providing comprehensive health care to that Region's Health Plan members. Among these cooperating organizations, the Kaiser Foundation Health Plans, nonprofit and charitable corporations, contract with individuals and groups to arrange comprehensive health care benefits. Permanente Medical groups are partnerships or professional corporations of physicians-one in each Region. Each Permanente Medical Group is responsible for its own physician recruitment and staffing patterns, and for the quality of medical services for the Health Plan population. This organizational structure represents a RE:df :EGR87-161 395 cooperative approach by the professions of medicine and management, and assures physicians and managers an opportunity to present their views on all major policy decisions. The Southern California Region currently serves the health care needs of more than 1.8 million Health Plan members in most of southern California including the San Diego area. The Southern California Permanente Medical Group has approximately 1800 full time physicians supported by ancilliary and support staff based at 8 major medical centers and approximately 30 outlying medical offices. Mental Health Services are provided at eight additional locations and in a 60 bed Mental Health Center. Benefit Structure 1 believe the primary questions in the pilot project from a total Program perspective are those addressing the clinical appropriateness of home care for these patients, the patient, family and provider satisfaction with this level of care and the economic trade offs of caring for these patients at home rather than in an acute care hospital. In many ways the issues of benefit definition are secondary. If home care proves to be the optimal setting for a selected number of chronic ventilator dependent patients, we on the contract and rate setting side of our Program will work closely with our Medical Group to remove any legal, contractual or regulatory barriers to providing this level of care in the home. As you may know, Kaiser Foundation Health Plan provides a defined set of benefits and services to members in each Region. As a Federally qualified RE:df :EGR87-161 396 HMO, these services are, at a minimum, those necessary to receive and maintain the Federal qualification status. Although these services are extremely comprehensive and include most basic health services in addition to hospice and home health services, "basic" coverage, or the level of benefits and services provided to all members does not include in home "shift care” or durable medical equipment provided in the home. As I am sure many of you are aware, skilled personnel must be present in the home on a 24 hour basis for certain chronic ventilator dependent patients. Ventilators currently fall under our benefit definition of durable medical equipment and are not provided in the home unless the member's group has purchased the supplemental, Durable Medical Equipment benefit. If our Medical Group and Health Plan conclude that shift care and ventilators should be provided at home as portion of basic Health Plan coverage, we are faced with a possible expansion of benefits for a relatively small number of our Health Plan members. The legal and benefit definition questions are not fully answered at this point. However, I would like to give you an idea of what these questions are, and why we believe they are pertinent. 1. If we create specific Shift Care and DME benefits for only this small class of patients and not create equal benefits for other categories of patients who would desire or need this level of care, are we in any way arbitrary in our benefit development? 2. Would it be appropriate to provide this care on an extra-contractual basis? Would extra contractual provision of shift care create a "benefit" which we could then be legally obligated to provide to all patients regardless of diagnosis? RE:df:EGR87-161 397 3. Would the provision of, for example, 16 hours of shift care to one respirator dependent patient obligate us to provide this level to all patients even though one family could provide all or all but 8 hours of shift coverage needed? 4. Rather than a specific benefit addition for a relatively small category of patients, should all levels of coverage be improved to provide for this care? As we are currently discovering in the pilot project, questions such as these can be resolved. The project has clearly served to help us identify potential contract, group relations and member concerns which may not have been discovered had we taken another approach. Robert Essink is currently the Director of Enrollment and Group Relations of Kaiser Permanente Health Plan in Southern California. He has been with Kaiser Permanente since 1973 and has held administrative positions in Kaiser Foundation Hospitals and Health Plan, Prior to the current assignment, he was responsible for rate, benefit and contract development and was a member of the Region Steering Committee responsible for the chronic ventilator dependent patient pilot project. RE:df :EGR87-161 398 May 1, Mr. William Pickens Executive Director Task Force on Technology Dependent Children Room 4414 HHS Bldg. 330 Independence Ave., S.W. washington, D.C. 20201 Dear Mr. Pickens: ROBERT H. SWEENEY President 1987 I am pleased to send to you a copy of our presentation for the Task Force on Technology Dependent Children's meeting on May 6, 1987. NACHRI is pleased to participate in the meeting and would welcome the opportunity to support the task force in their efforts to further implement the recommendations. I look forward to seeing you at the meeting. Sincerely, Fax Patricia Sealing Director of Child Health Analysis PS/stb The National Associatiomsof Children’s Hospitals and Related Institutions, Inc. 401 Wythe Street, Alexandria, Virginia 22314 Phone (703) 684-1355 399 nachri An Association Statement STATEMENT OF THE NATIONAL ASSOCIATION OF CHILDREN'S HOSPITALS AND RELATED INSTITUTIONS BEFORE THE TASK FORCE ON TECHNOLOGY DEPENDENT CHILDREN DEPARTMENT OF HEALTH AND HUMAN SERVICES MAY 6, 1987 The National Association of Children's Hospitals and Related Institutions (NACHRI) is a voluntary association dedicated to promoting the health and well-being of children. NACHRI is the only national organization of children's hospitals in the country. It represents 94 children's hospitals, virtually all of which are teaching hospitals. Many are involved in conducting research. Many are also regional medical centers, receiving referrals from across the country and the world. In the past few years children's hospitals have confronted the challenge of caring for a growing number of technology- dependent children. Recognizing that the acute care unit is an inappropriate setting for the development of these children, a The National Association of Children's Hospitals and Related Institutions, Inc. 401 Wythe Street, Alexandria, Virginia 22314 Phone (703) 684-1355 400 number of children's hospitals have implemented extensive discharge services and 22 have established successful home care programs in their communities. Indeed three SPRANS grants are based in children's hospitals in Chicago, New Orleans and Philadelphia. A few hospitals, such as the Hospital for Sick Children in Washington, D.C. and Children's Rehabilitation Hospital in Philadelphia, have developed transitional care units to ease the movement of children from acute care settings to their homes. Unfortunately, home care 1s not feasible or suitable for many children and other alternative settings are few and limited. Because children's hospitals play such a pivotal role in the care of technology-dependent children from birth throughout their early years, they are very interested in finding ways to overcome the barriers that prevent these children from receiving care in the most appropriate setting. Through interviews with a number of these hospital's home care coordinators, site visits to member hospitals, and review of the literature NACHRI has prepared this report. This presentation will first discuss six barriers to providing the most appropriate care and services for technology-dependent children and their families. Recommendations on how to address these issues and enhance services to these children will then be presented. 401 BARRIERS Six common barriers were identified. Financial hurdles were named as the number one barrier. The other barriers include: limited availability of information, referral and support services in the community; lack of a system to coordinate care; lack of alternative care settings; lack of respite care for families; and the imminent nursing shortage. Financial Barriers Cost of care for technology-dependent children is by its nature catastrophic whether care is provided in the hospital, home, or other settings. Adequate financing from health insurers, Medicaid and other sources is essential to the care of these children. Unfortunately far too often third party payers have not covered services in the most appropriate settings. Fortunately the situation appears to be changing. Today the home care benefits which are offered appear to be more comprehensive than those of five years ago. An increasing number of private insurers will provide technology-dependent children a broad range of home benefits, including physician services, drugs, skilled nursing care, occpational therapy, physical therapy, speech therapy and psychosocial services. However, traditional limitations on the total number of visits or the amount of reimbursement may 402 still remain. Frequently, insurers require that the benefit be offered in lieu of, rather than in addition to hospitalization. This requires extensive negotiation. Beyond the home care benefit, a growing number of insurers and self-insured employers are offering individual case management, a more flexible benefit that allows for broader coverage of home and community-based services, provided their cost is less than hospitalization. This popular trend toward individual case management is particularly significant for technology-dependent children with complex and changing needs. A number of established home care programs are very enthusiastic about this collaborative approach with the private sector. Medicaid has also made progress toward expanding coverage of home care for technology-dependent children over the past five years. Federal legislative changes have allowed states, which elect to do so, to expand Medicaid eligibility to pay for home and community care for technology-dependent children who otherwise would receive Medicaid support only while institutionalized. Home and community care waivers have also allowed states to expand and tailor services to fit the children's specific needs and to provide case management. In spite of recent improvements several significant barriers still impede provisions of most appropriate care. 403 Families with technology-dependent children often experience difficulty in obtaining and maintaining adequate private health insurance coverage. For example while the child might have been insured at birth, a change in the parent's employment may result in the loss of coverage for the child. Generally, this is due to the individual or group plans including riders that exclude coverage for treatment of the child's specific pre-existing condition and any medical problems that result from it. These exclusions may be time-limited (e.g., 1 year) or may last for the child's lifetime, depending on insurer's policy and the type and severity of child's illness. Because the expense of care for the technology-dependent child is typically catastrophic in nature, insurance coverage which is subject to life-time maximum limits can be depleted rapidly. Due to the child's pre-existing condition, he may be ineligible for insurance from any other company. For families with disabled children, the fact that they are insured does not necessarily protect the family from financial hardship. First, there is a growing trend toward greater deductibles and co-payments meaning higher out-of-pocket expenditures for many families with chronically ill children. Costs incured to care for the child such as special transportation, home modification, and 404 increased electric and phone bills, are almost exclusively borne by the family. While Medicaid may come to the aid of hospitalized technology-dependent children who have no insurance or have exhausted their coverage few can be assured that Medicaid will finance home or alternative care. Unfortunately many states have been reluctant to take advantage of the home and community based care options for serving technology-dependent children due to uncertainty over the cost of expanding their current programs and the enormous cost in staff time of filing an application with HCFA without any guarantee of approval. In states which have received home care waivers, the number of technology-dependent children served varies dramatically depending on state choices regarding "deeming" of income, waiver eligibility restrictions, cost-saving criteria, and services covered. These policy restrictions are usually intended as a gate-keeping mechanism to control costs, but often prevent technology-dependent children from receiving home care. Lack of public and professional awareness often limits full utilization of the waiver program. Eligibility is limited to the poor and near poor unless a state opts for a waiver allowing it to use SSI institutional deeming rules even though not opting for this waiver results in children from middle income families remaining hospitalized at Medicaid expense. 405 In addition, access to health care financing is also limited in CCS services and home-and-community care waiver programs because they choose to serve only certain disease categories, specific institutions or geographical areas. Cost-savings criteria may also restrict the number of technology-dependent children served under the waivers. For example, in a number of states, children are served only if home care costs are less than skilled nursing or intermediate care facility costs, not hospitalization costs. In 15 states, hospital coverage for acute care is limited to 45 days or less. As a result, savings from reduced hospitalization would not be sufficient to justify a waiver. The technology-dependent child has complex needs requiring a multidisciplinary range of services, such as skilled nursing care, social work, occupational therapy, and physical therapy. Generally the services covered under model waivers are more appropriate to the specific needs of the technology-dependent child than is the case with services covered under the regular waivers or the state plan. When a mismatch in covered services and needed services exists, a technology-dependent child cannot receive home care. Likewise limits on the total monthly cost of waivered services, particularly when extended skilled nursing care is needed, can prevent a child from coming home. 406 In many of the model programs CCS agencies supplement the Medicaid services by providing a wide range of those rehabilitation services, such as occupational, physical, and speech therapy, needed by the child. In addition, CCS also collaborates with the tertiary health care providers to provide case management, a crucial element of the successful home care program. Unfortunately, not all CCS programs across the country provide these additional services. Lack of Availability of Information, Support Services and Coordinated Care System Despite recently legislated changes in the Medicaid i.e. home and community care waiver program and progressive approaches by a handful of national insurers, the probability of a child receiving home care still depends heavily on the information his parents and health care team have about home care options, their aggressiveness and persistence in pursuing these options, and the state's or insurer's willingness to support such care. The coordinators of home care programs and parents have repeatedly expressed frustration with the inordinate amount of time required for case-by-case negotiation with third party payers. Parents often find the experience very demeaning. In many areas of the country, particularly rural areas, no home health care services are available for the technology-dependent child. In other instances home care services may be available but the other local providers are unprepared to carry out the care plans 407 developed by the medical specialist. This lack of a coordinated system is potentially dangerous to the child and family and increases the liability for the professionals involved. Lack of Alternative Care Settings A continuum of services including acute/intensive care, transitional care, home (or home-like setting) care and long-term care are needed to ensure an appropriate level of care is available for the full population of technology-dependent children. Although progress has been made in home care for the technology-dependent child and his family, other settings for care in lieu of hospitalization are very limited. For example, a child may be medically stable but it is not feasible for a family to care for the child at home. Without the development of home-like settings, transitional care or long-term care, these children remain hospitalized. Across the country a few transitional facilities are being developed, particularly in children's rehabilitation facilities; however, most are located in the northeastern section and urban areas of the country. Transitional units are not yet available in other areas of the country. Group homes, foster-parent care, and day care offer expanded options for care of the technology-dependent child in a home-like 408 setting. However, experience with these possible options 1s very limited. Currently these services are being considered for future feasibility studies by the SPRANS projects 1in Louisiana and Maryland. In addition, a day care facility is being considered by the Minneapolis Children's Medical Center. Long term placement is also an issue for further consideration. Most nursing and non-hospital facilities do not accept young children. If they do, only a few beds are designated for children. Medically stable technology-dependent children may wait 60 to 90 days for placement. Lack of Respite Care Families of technology-dependent children live with a continuously high level of stress and multiple demands. The parent(s) are often required to be medical managers, financial planners, employers, educational advocates and community resource specialists in addition to caring for the sick child and parenting their other children. They usually have no backup support other than formal nursing support. These demands often fall upon a young, single mother with other children. The parent(s) have no breaks, no evenings on the town, and no vacations. Even if respite care can be found, reimbursement from third party payers is often unavailable. If the child receives coverage for skilled nursing care, creative 409 scheduling of nurses can provide some needed relief, but such opportunities are rare. Nursing Shortage Enrollment in nursing education programs has been declining at an alarming rate in the last few years. Hospitals and home health care agencies fear this decline, coupled with the current exodus from the nursing profession, will result in a shortage of qualified professional nurses in the next few years. How will the skilled nursing care required by the technology-dependent child be provided? What incentives and retention programs can be created to attract nurses to this specialty? How can the professional isolation and burnout of the nurse giving home care be decreased? What impact will the projected increase in salaries have on hospitals and home health care agencies ability to provide this care? RECOMMENDATIONS This section outlines recommendations on how to address the six major barriers in order to provide technology-dependent children with care in the most appropriate setting. The recommendations parallel the discussion of the barriers. 410 Financial Employment-related health insurance will continue to be a major mechanism for providing home care. To strengthen this resource public policy initiatives must: 1. Encourage states to require health insurers to provide home care in lieu of hospitalization in all health insurance and major medical policies: 2. Establish state level insurance pools for small employers, self-employed or seasonally-employed individuals; 3. Establish state or regional catastrophic insurance pools to supplement the minimum private insurance policies; and 4. Establish a federal entitlement program to assist families with catastrophic illness expenses not met by third party payment and resulting in excessive out-of-pocket expenses. Public policy initiatives must also protect those dependent on Medicaid and other government programs. These iniatives must: 1. Mandate Medicaid coverage for pregnant women and children under age six whose family incomes are below the federal poverty level; 2. Eliminate flat limits on the amount or duration of mandated home care and other medical services and replace them with individually tailored medical service care plans; 411 3. Encourage the state CCS agency, Medicaid and other service divisions to work together to develop waiver programs, to define appropriate populations and criteria for home and community-based care, assure financing and delivery of appropriate care and services, and streamline the waiver intake process; and 4. Include children and young adults in demonstration projects and studies of catastrophic insurance coverage conducted by the federal government and private foundations. Regionalized Comprehensive Information, Referral and Care Delivery System for Technology-Dependent Children The absence of a coordinated information, referral, care delivery system is a barrier to the placement of technology-dependent children in the most appropriate settings. Several pilot prograns, funded by the Division of Maternal and Child Health have shown how this barrier can be overcome. Between 1983 and 1986, Illinois, Louisiana, and Maryland received demonstration project funds to develop model programs aimed at appropriate long-term care for ventilator and other technology-dependent children. These programs focused on two goals: (1) to develop a regionalized system of care for such children, and (2) to develop a comprehesive, coordinated model of care. 412 All three projects focused on transfer of children from institutional settings to home or home-like settings through the use of multidisciplinary team and collaborative efforts among tertiary, intermediary, and primary care settings. All utilized a case management approach and extensive training of parents and professionals to provide care in non-hospital settings. These projects, and programs in a few other states, demonstrate the effectiveness of comprehensive, regionalized systems which can coordinate the essential services for home care that are often provided by a variety of organizations. Regionalized comprehensive systems to coordinate care of technology-dependent children need to be developed throughout the country. The components of the system should include: (1) Multi-tiered institutional networks among the tertiary center, transitional units and community services; (2) Specific discharge care plans supervised by the medical specialist and multi-disciplinary team; (3) Coordination of care with specific case management to assure continuity of care from tertiary center to community setting; (4) Extensive parent training programs; (5) Respite care for families; (6) Regional educational programs for professionals to attain and update knowledge of home health care; and (7) Continuipg data collection and information sharing between regional centers to evaluate the status of the programs. 413 To develop these systems it is recommended that the Division of Maternal and Child Health: 1. Convene a national consensus conference with the purpose of developing model plans for home care and alternative care options for adaptation and adoption by state maternal and child health agencies; 2. Provide technical assistance to institutions and private insurers in development of home care programs. In addition, health care providers should seek private and public funds to support the development of a regional system. Alternative Care Options and Respite Care Throughout the country, additional alternative care settings and respite care are necessary. A number of children's hospitals, children's rehabilitation centers and skilled nursing homes are completing studies which attempt to determine the feasibility of these options. Public and private policy initiatives that implement payment policies to support the development of transitional care units, group or other home-like settings, skilled nursing units, specialty long-term facilities and respite care must be adopted. For example, in Maryland, the Coordinating Center for Home and Community Care is currently working with private and public sectors 414 to fund a feasibility study of group home care. This funding approach presents a model that might be used in other areas of the country to develop these needed care services. Nursing Shortage Certainly children's hospitals and home health care agencies recognize the skilled, experienced nurse is a key player in the care of the technology-dependent children. To assure supply of such professionals in spite of the growing shortage, children hospitals, home health care agencies and others need to implement new initiatives such as creative scheduling, self management programs and professional development opportunities to recruit and retain nurses in this vital role. OTHER ISSUES While exploring the barriers to providing home care to technology-dependent children other issues that impact on the well-being of these children surfaced. This section briefly outlines two of these concerns for further consideration. Education In the near future many technology-dependent children wil be entering the school system. This poses a number of issues that need 415 to be considered proactively. How will the public school system handl their care needs? Who will be financially and legally responsible? what will be the impact on the home bound program? Will these childre receive the education that they are entitled to receive? Research A program of research is crucial to our joint efforts to prevent and improve the care of technology-dependent children. In addition to the need for important physiological studies, it is necessary to investigate the developmental, psychosocial, behavioral, societal, and financial impact of caring for these children, particularly as we explore other alternative care options. The care of these children an future generations depends on the results of these studies and the dissemination of their findings to the public and professional communities. CONCLUSION Children's hospitals play a crucial role in the well-being of technology-dependent children. From their admission, it 1s the children's hosptials' expertise, services and research that prolongs their life. It is the hope for their future. Children's hospitals have been among the leaders to confront the barriers to providing the most appropriate care in the most appropriate setting. In the future, they will continue this important work. 416 As the Task Force on Technology Dependent Children considers these recommendations NACHRI welcomes the opportunity to work with you to further explore the feasibility of their implementation. Thank you for giving NACHRI the opportunity to speak on this issue. 417 REFERENCES Battle, Constance U., "Beyond the Nursery Door: The Obligation to Survivors of Technology," Clinics in Perinatology. W.B. Saunders Company, Philadelphia, 1987. "The Crisis of Chronically Ill Children in America: Triumph of Technology Failure of Public Policy," Report by the Caring Insitute of the Foundation of Hospice and Homecare, March, 1987. Duggar, Benjamin, et al. "Financing Care of Chronically Ill and Disabled Children in Home and Other Ambulatory Care Settings," prepared for DHHS--Division of Maternal and Child Health, April, 1986 Fox, H., and Yoshpe, R., "Private Health Insurance Coverage of Chronically Ill Children," prepared for The National Center for Networking Community-Based Services Georgetown University Child Development Center, March, 1986. Fox, H., and Yoshpe, R., "Technology-Dependent Children's Access to Medicaid Home Care Financing", OTA contract paper, June, 1986. Hobbs, Nicholas, et al. Issues in the Care of Children with Chronic Illness. Jossey-Bass Publishers, San Francisco, 1985. Koop, C. Everett, "Report of the Surgeon General's Workshop on Children with Handicaps and Their Families Case Example: The Ventilator Dependent Child," Presented by the U.S. DHHS in conjunction with The Children's Hospital of Philadelphia, December 1982. National Association of Children's Hospitals and Related Institu tions. Guide to Children's Hospitals and Manual of the National Association of Children's Hospitals and Related Institutions, Inc., October, 1986 Perrin, James M., "Chronically Ill Children in America," Caring, May, 1985. 418 April 21, 1987 Bill Pickins Executive Director Task Force on Technology-Dependent Children Room 4414 Health and Human Services Building 330 Independence Avenue, S.W. Washington, D.C. 20201 Dear Bill, This is to confirm our fifteen minute presentation to the Task Force on Technology-Dependent Children at 3:15 pm on May 6, 1987. Our presentation will be broken into two separate parts. Harold Leitz, of United Medical Mart of Florissant, Missouri, will illustrate through a slide presentation the seating and positioning problems of technology-dependent children. Jim Retel, Director of Marketing, Travenol Home Respiratory Division, will demonstrate the needs of the respiratory technology-dependent pediatric patients also through a short slide presentation. We will therefore need your assistance in having a 35mm slide projector with remote control and a slide screen available at the meeting for these presentations. I have asked each individual to spend only 5 minutes each on their presentation so that there would be adequate time available for Task Force members to ask pertinent questions. Enclosed are NAMES' comments along with those of Baxter Travenol. Foster Medical Company is sending in their comments separately. If you have any questions, please feel free to call upon me. Looking forward to seeing you May 6th. Sincerely, — Zr Timothy J. Redmon Director of Regulatory Affairs National Association of Medical Equipment Suppliers, 625 Slaters Lane, Suite 200, Alexandria, Virginia 22314, (703) 836-6263 419 Response to Questions Posed by the Task Force on Technology-Dependent Children The National Association of Medical Equipment Suppliers is the largest association of durable medical equipment (DME) professionals, representing 3,000 service sites nationwide. Our members continue to pioneer in providing ventilation, infusion therapy, monitoring devices, and other high-tech equipment to children in their home. Before responding to the Task Force's specific questions, we would like to briefly summarize our experience on where a commitment to care for the technology-dependent lies in today's society. Twenty years ago, Medicare, Medicaid, and a few smaller programs were created in the belief that appropriate medical care is a basic right that should not be denied because of a patient's financial status. Unfortunately, technology-dependent children were not clearly and unequivocally protected under these programs. NAMES President Tom Antone and Task Force Member Fred Abbey have first-hand experience attempting to manipulate Medicaid rules to accommodate some of these children, and met with modest success. But the need for this exercise demonstrates the lack of comprehensive recognition accorded the needs of technology- dependent youth. And even the fragile commitment that can be squeezed from existing public and private programs is wavering as government engages in a guns vs. butter debate regarding social programs, and charitable sources dry up. It is ironic that breakthroughs in home technology coincide with a period of questioning even the spotty commitment made to children thus far. But the fact remains that this Task Force is fundamentally a participant in the debate over where priorities will be set in a time of both charitable and governmental budget constraints. Against this backdrop, we appreciate the opportunity to address your specific questions. 1. NAMES fully supports home care for technology-dependent children. Financially it is preferable to the alternatives of permanent or frequent ingtitutionalization. Clinically, there is evidence that patients achieve and maintain optimal functional status better at home. Finally, home care is infinitely preferable for many patients and their families and is thus more humane. DME suppliers have already pioneered in introducing technology to the home-bound. They have the technical capacity ‘National Association of Medical Equipment Suppliers, 625 Slaters Lane, Suite 200, Alexandria, Virginia 22314, (703) 836-6263 420 to expand use of such technology even further as it gains increased acceptance among family, patients, health care practitioners, and third party payers. 2. High-tech equipment is often custom made and is always used in conjunction with a program designed for a particular patient. As a result, suppliers rely on a team approach embracing rehabilitation engineers, skilled craftsmen for manufacturing, and a variety of health professionals including nurses, physical therapists, orthotists and prosthetists, respiratory therapists, pharmacists, and others as appropriate to the patient's needs. The very limited availability of third party coverage ensures we must be both cost effective and skilled at begging before Easter Seals and other charitable groups on behalf of our patients. From our experience, it is impossible to overrate the extent to which such charitable institutions work with DME suppliers, particularly in the area of customized seating and positioning technology. 3. The problems and concerns expressed by the DME industry in providing service to technology-dependent children include: a. There is a need for some generally recognized quality assurance mechanism as technological capacity increases. NAMES currently is working closely with the Joint Commission on Accreditation of Hospitals (JCAH) to develop accreditation standards that both offer guidance on how to achieve and a means of measuring acceptable quality in the DME industry. We and JCAH are presently on our third draft and field testing is currently underway. b. High-tech is often associated with high risk. We attempt to minimize both patient risk and our related liability wherever necessary and possible by placing two items with the patient to ensure a back-up system is available (e.g. oxygen therapy). However, this further increases overall costs which are never reimbursable. c. When dealing with state and federal programs, the amount of paperwork needed to obtain approval for any homecare service is horrendous. d. The spotty coverage available under current governmental programs means suppliers provide services and incur related expenses only to learn coverage is subsequently denied. This frequently happens, and as a result both families and the DME supplier are in a dilemma. There should be some type of prior approval for care after a detailed accounting of the services to be provided has been approved by the attending physician and submitted for third party payer approval. This process should take no more than ten working days. 421 e. The Medicare Carrier system is virtually to the point of collapse as claims volume grows under all of Medicare while Medicare contractor budgets are shrinking. These problems are particularly acute in the area of claims for customized equipment. Reimbursement for even regular DME is running 90-120 days after the cost of providing the service is incurred. Customized equipment takes even longer because of the one-on-one negotiations involved between care-givers and Carriers. The Carrier system must be adequately funded to do its job. f. Understanding and acceptance of the high-tech home care alternative among families and practitioners is growing, but by no means optimal. Education programs in professional school curricula, before professional societies, and as in- service programs in institutions would help greatly. g. Patients and their families logically believe health care of any sort is too expensive. Care-givers, on the other hand, believe there is no understanding or appreciation of the true costs of providing services. The public needs to be better educated in these costs. Care-givers have a corollary duty to be forthcoming about their expenses, both direct and indirect. (See attachment A) As a more general and effective means of addressing these and other problems and concerns, at least under Medicare, NAMES urges adoption of a Six-Point Plan (See Attachment B) to set prices which are fair to government, patients, and suppliers; simplify program administration and therefore reduce administration costs; and return a measure of reimbursement stability to this area. We also urge compliance with the Prompt Pay provisions of the Medicare Act enacted last Fall. Finally, NAMES is also a member of the Specialized Product Equipment Council (SPEC). This group consists of manufacturers, suppliers, third party representatives, government representatives, and beneficiaries. This group was formed to find solutions to payment problems for specialized equipment. We are now in the process of developing a manual that establishes standard nomenclature and descriptions for various equipment. 4. The major barriers can be summarized in two broad points: A. Government approval to market new technology is extremely slow. For example, data indicate that the FDA approval process-- where required-- takes nearly two years from the date an application is submitted. Admittedly, prudence is called for and prudence is often time, consuming. At the same time, NAMES supports proposals made by the Health Industry Manufacturers Association (HIMA) to streamline this process without compromising safety. 422 B. The Task Force needs to assess whether the current patchwork of Federal, State, and private (insurance or charitable) programs is sufficient to ensure coverage for an acceptable number of these children where personal funds are inadequate. It may be that while complicated, coverage is available and a channeling or clearinghouse mechanism would aid parents in finding appropriate assistance. If the Task Force finds currently available coverage inadequate, perhaps it should evaluate the appropriateness and potential effectiveness of Task Force members serving as a catalyst for developing a more rational and coherent public policy commitment to the needs of technology-dependent children. Such a statement would necessarily become a part of the larger guns vs. butter debate. In addition to NAMES' comments on the four specific questions posed by the Task Force, we would recommend that the Task Force members supplement these remarks with the additional detailed input from Baxter Travenol and Foster Medical. We applaud the Task Force's work to date and offer any assistance we may provide in the future. 423 ATTACHMENT A DIRECT COSTS Direct costs are the sum of labor. equipment (including a backup system) and supplies. Labor costs are based on services which include: o Preparation before installation. o Installation. o Maintenance check. o Maintenance overhaul. o Return. o Repairs. o Customers’ record keeping. INDIRECT COSTS Indirect costs are defined associated with operating a list contains apparent duplications, some of these items as direct costs, our intention is that all possible costs are taken into account. as nonlabor and equipment expenses DME business. While the following and while you may allocate to ensure o Rent. Office and Warehouse. o Utilities. o Telephone. o Inventory and carrying costs. Oo Accounting, billing and collection. o Auditing. o Depreciation. o Cost of Capital. o Taxes. Income, real estate and property. o Alarms and protection devices. 424 ATTACHMENT A PAGE TWO Emergency service. Trash removal. Furniture and office equipment. Office supplies and stationery. Postage. Maintenance and repairs. Training, recruitment and relocation. Insurance. Property, liability and employee benefits. Legal fees. Marketing and advertising. Bad debts. 425 ———l Chee am FIT nn : / A 4 ( SAMEED i ‘a 1 b ATTACHMENT B DME REIMBURSEMENT PROPOSAL: SIX-POINT PLAN NAMES proposes a program to control Medicare costs while preserving bath the DME benefit and the rental nature of the industry. Reimbursement Methodology: 1. Retain current program for inexpensive equipment. 2. Establish three categories for expensive equipment: Category A: Rental of high risk, service intensive equipment (e.g., ventilators); Category B: Rental of other equipment, capped in terms of .a number of months (e.g., hospital beds); Category C: Defined exceptions where purchase is appropriate (customized equipment, for example). 3. Establish a national pricing system which moves away from reasonable charge methodology. 4. Reduce administrative expenses by a substantial reduction in the number of carriers. 5. Establish a "ProPAC" type advisory group. 6. Enforce collection of co-insurance and deductibles. National Assocation of Medical Equipment Suppliers. 623 Skaters Lane, Suite 200, Alexandria, Virginia 22314, (703) 8306-6263 426 NATIONAL ASSOCIATION OF REHABILITATION FACILITIES John E. Lapidakis John A Doyil ! e President Executive Director April 17, 1987 Mr. Bill Pickens Executive Director Task Force on Technology- HAND DELIVERED Dependent Children Room 4414 - HHS Building 330 Independence Ave., S.W. Washington, D.C. 20201 Dear Mr. Pickens: Enclosed are the original and three copies of NARF's statement to the Task Force on Technology-Dependent Children. Please contact us if you require further information or data. Sincerely, Dos Corrine Propas Parver Assistant Counsel/ Medical Rehabilitation Enclosure P.O. Box 17675, Washington, D.C. 20041 « (703) 5564-8848 427 NATIONAL ASSOCIATION OF REHABILITATION FACILITIES John E. Lapidakis John A Doyle President Executive Director STATEMENT of the NATIONAL ASSOCIATION OF REHABILITATION FACILITIES to the Task Force on Technology-Dependent Children for the record of Task Force Meetings of May 6-7, 1987 P.O. Box 17675, Washington, D.C. 20041 « (703) 556-8848 428 NATIONAL ASSOCIATION OF REHABILITATION FACILITIES John E. Lapidakis John A Doyle President Executive Director STATEMENT of the NATIONAL ASSOCIATION OF REHABILITATION FACILITIES to the Task Force on Technology-Dependent Children for the record of Task Force Meetings of May 6-7, 1987 Members of the Task Force: This statement is submitted on behalf of the National Association of Rehabilitation Facilities (NARF). NARF is the principal na- tional membership organization of fadilities rendering medical and vocational rehabilitation services. The membership includes almost all freestanding rehabilitation hospitals in the country, a large number of rehabilitation units of general hospitals, outpatient rehabilitation facilities, and vocationally-oriented agencies. Medical rehabilitation facilities deal with the miti- gation and remediation of physical and mental disabilities caused by disease and trauma and help people become independent. Voca- tional/developmental disabilities programs assist people with such disabilities to go back to work. Most, if not all, of P.O. Box 17675, Washington, D.C. 20041 « (703) 556-8848 429 NARF's medical membership participate in the Medicare and the Medicaid programs. BACKGROUND Rehabilitation facilities and professionals serve people suf- fering from- major illnesses or the results of accidents. For example, there are over 10,000 people, many of them children and young adults, with spinal cord injuries per year; the majority are the result of automobile accidents. There are between 700,000 and 900,000 head injured people per year, of which at least 10% (70,000) are considered severely traumatically brain injured. Rehabilitation specialists also treat children who suffer from burns; congenital deformities; cancer; and neurological, musculo- skeletal, pulmonary and cardiovascular diseases. These indivi- duals require extensive services both from the time of the injury or illness frequently through outpatient care, home health, day health care, residential living care and, in some cases, continued support on a daily basis. Rehabilitation programs have significant costs attached to them. As a result, facility administrators and financial officers face the personal, emo- tional, and financial trauma that occurs when the existing health care payment system does not help these special patients, which include technology-dependent children. The primary function of rehabilitation facilities is to provide diagnosis and treatment of patients for specified medical condi- tions both surgical and non-surgical. The average length of stay 430 in a rehabilitation hospital is long because the objective is restoration of impaired functions which generally follow serious disease or injury. The ultimate purpose and goal of rehabilita- tion is to restore patients to their optimum level of function and thereby to reduce dependency. This includes restoration of strength, mobility, and all activities of daily living. Provision of timely and effective rehabilitation services and programs to a child who has experienced disease or trauma can greatly reduce that child's subsequent dependence and need for acute and long-term care. Once a patient is released from a rehabilitation facility, he or she may require outpatient and home care services. Rehabilitation can minimize the need for long-term care although some children with disabilities require continuing institutionalization when home and community care is inadequate. RESPONSE TO SPECIFIC QUESTIONS FROM THE TASK FORCE ON TECHNOLOGY- DEPENDENT CHILDREN NARF is pleased to respond to the series of questions posed by the Task Force Executive Director. (1) What is the Association's view of the growing movement to provide in-home care to technology-dependent children and what role do rehabilitation hospitals play in providing services to these children? Do you believe rehabilitation facilities have a special role to play? Rehabilitation facilities that specialize in serving pediatric cases have learned that they can and should play a significant role in providing services to technology-dependent children. Children who are born with a severe disability, and who are 431 dependent on technology, need to be introduced into a habilita- tion environment as soon as they become medically stabilized. Pediatric rehabilitation facilities which serve this population offer an environment that provides medical services in addition to infant stimulation, evaluation/diagnostic services, parent and child caretaking training, psychology, counseling, education and case management/referral. These services are coordinated through an interdisciplinary team which is supervised by a physician trained in rehabilitation and pediatrics. Pediatric facilities have seen an increase over the past five to ten years of technology-dependent children who need a habilita- tion program following acute care and prior to being discharged to the home. Our experience indicates that when such children are discharged from the acute care hospital directly to the home, re-hospitalization may result. Families and in-home providers may not generally be able to provide the habilitation environment which is critical in light of the complex medical, psychosocial and neurodevelopmental needs of the child. As such, NARF believes that pediatric rehabilitation facilities can and should play an increasing role in the transition from acute care insti- tutionalization to the home setting. (2) How many rehabilitation facilities have pediatric units and of these, how many are equipped to handle technology-dependent children? Today, there are over 500 rehabilitation hospitals and units, 100 comprehensive outpatient rehabilitation facilities, 500 rehabili- tation agencies and other outpatient providers and numerous home 432 health agencies providing rehabilitation services throughout the country. Currently, there are approximately fourteen (14) children's hospitals which specialize in rehabilitation and other specialties. Some fifty-two (52) children's hospitals contain pediatric rehabilitation units. These facilities are located primarily in the North-East and West, with very few facilities in the South and Mid-West. For example, Pennsylvania has five (5) pediatric rehabilitation hospitals and one (1) rehabilitation hospital with a pediatric unit. Two of these hospitals currently are providing services to oxygen and ventilator-dependent children. Two to three others would be able to provide the service if adequate resources were available. NARF has learned that a number of other rehabilita- tion facilities across the country, including pediatric rehabili- tation hospitals, are not yet fully geared to provide the level of technology these children require, primarily due to lack of trained staff and inadequate equipment. (3) what is the role of state/federal regulations in achieving change that will increase care options for this population? Federal and state regulations must recognize the need for compre- hensive, habilitation programs for technology-dependent children. Rehabilitation facilities specializing in providing services to technology-dependent children can only do so if all the therapeu- tic services cited above are recognized as medically necessary and thus reimbursable. In addition, a high number of children with these severe needs come from economically-deprived family 433 environments. As a result, Medicaid regulations in particular need to be revised to support the provision of adequate, high quality services. This also applies with other payors who often resist paying for services other than those that are acute in nature. These children have long-term, chronic needs that have to be addressed.. Federal and state regulators must be made to realize that treat- ment for chronically ill children and young adults may be better and less expensive when given at home. It has been shown that many children dependent on medical technology develop more normally when they are taken care of at home and allowed to interact with their family, friends, community and school. Also, home care is usually more cost-effective than hospital or institutional care. Studies show home care costs ranging from 1/2 to 3/4 that of inpatient care. Savings from one baby born with breathing and feeding problems cared for at home is $40,000 per month. Aetna Insurance company estimated $36 million in savings in 1985 by financing home care for 800 patients. See Attachment A. (4) What do you see as barriers to appropriate care and services for technology-dependent children and their families? What would to overcome these barriers? Despite the widespread acceptance of the home-care concept, pub- lic policy has been slow to respond. The vast majority of pri- vate insurers will not pay for home care for the chronical ly ill child, while the same care will be reimbursed in a higher-cost institutional setting. Further, a number of insurers provide a 434 disincentive to home care by limiting costs for such care at a lower level than for inpatient care. Service needs are not being met because existing programs and private policies do not recog- nize nor cover them given the institutional bias that exists. While a more progressive approach has been adopted by a handful of insurers; it is clear the marketplace is not meeting the need. Other barriers to the provision of necessary services include: inadequate reimbursement; federal and state regulations which do not require public and private payors to provide comprehensive, habilitation services; inadequate community support services such as home-health care; and few long-term care options for this population. NARF recommends that this Task Force support programs to move away from the institutional bias for long-term rehabilitation services and needs of technology-dependent children. Services that can be delivered by home or through community-based organi- zations such as rehabilitation facilities, allowing children to live in as independent a setting as possible, are preferred. States thus should be allowed to provide home and community-based waivers without going through the cumbersome administrative waiver process. Along with some 25 other organizations, NARF last year supported S. 1793, the Alternatives to Hospitalization for Medical Techno- logy-Dependent Children Act of 1985. NARF recommends serious consideration of the following four main provisions in that bill: (1) The Congressional Office of Technology Assessment (OTA) must convene a task force to develop a model plan for 435 employee health benefit plans to pay for home care for children dependent on medical technology. The model will include services to be provided; specify that insurers not be required to pay more for home care than for hospital based care; and allow insurers to cap home care at the same level as hospital care - but no lower. (2) If less than 80% of the employee health benefit plans offer coverage similar to that recommended by the OTA model within one year after its development, such coverage will be required by law. (3) The Secretary of HHS shall monitor and evaluate the implementation of the law with respect to the number of children with various conditions receiving home care, the costs of such care compared to inpatient care, and the health status of these children. (4) Authorizes $20 million to Title V agencies, academic medical centers and children's hospitals to develop community based services to provide home care and to develop training and technical assistance programs. Finally, NARF believes it is critical that resources be spent on educating health care, education and human service providers on the complex needs of technology-dependent children. 436 ATTACHMENT A (1) Visiting Nursing Service of Greater Indianapolis Data: Comparative Analysis of Hospital and Home Care Costs for One Ventilator Dependent Child Cost Hospital Home Care $ Savings Total Cost, eight month period $291,411 $56,327 81% Average monthly cost $ 29,113 $ 5,201 82% (2) Aetna Life and Casualty Data: Cost of Acute Care Diagnosis per month in Hospital Home Care $ Savings Infant born with breathing $60,970 $20,209 67% and feeding problems Spinal cord injury with $23,862 $13,931 52% .quadriplegia Neurologic disorder with $17,783 $ 196 99% respiratory problems (3) "Sick Kids (Need) Involved People" (SKIP) Study: 30 Children Studied Hospital Care Home Care § Savings Average Daily Cost $ 1,000 $ 300 70% Average Yearly Cost $360,000 $120,000 67% (4) Children's Memorial Hospital (Chicago, Illinois) Data: Hospital Cost/Month Home Care Cost/Month $ Savings Case 1: (Partially $23,330 $7,010 70% Ventilator Dependent) Discharge Age: 3 years, 4 months Case 2: (Partially $31,540 $7,610 76% Ventilator Dependent) Discharge Age: 1 year (5) State of Pennsylvania Department of Health Survey: Average Monthly Institution Average Monthly Home . Cost/Patient Care Cost/Patient § Savings 260 Technology-Dependent Institutionalized $30,000 $1,000 96% Children (6) Massachusetts Study: Hospital Cost/Year Home Care Cost/Year §$ Savings Six Families with Venti- lator Dependent Children $150,000-400,000 $1,000-75,000 50-95% Source: New England Journal of Medicine, Nov. 24, 1983, pp 1319-1323, article by Burr, Guyer, Todres, Abrahams and Chiodo. 437 Testimony of Protection and Advocacy, Incorporated Before The Task Force On ; Technology-Dependent Children Protection & Advocacy Incorporated March 5, 1987 Mandated to protect and ardin rier m 3 - advocate for the rights of Regarding Barriers to Home and Community-Based Care for Californians with Technology-Dependent Children developmental disabilities. I am Michael Kluk, an attorney with Protection and Advocacy, Incorporated. Protection and Advocacy, Inc. (PAI) is a nonprofit, public benefit corporation established in 1978 pursuant to the federal Developmentally Disabled Assistance and Bill of Rights Act to protect and advocate for the rights of Californians with developmental disabilities. Each state and territory has established a protection and advocacy organization with the use of federal funds either as an office within state government or as a private nonprofit corporation as in California. PAI's services are available to persons with developmental disabilities as defined in federal legislation. (42 U.S.C. §6001(7).) The definition includes any severe, chronic disability of a person which is attributable to a mental or physical impairment, manifests before the age of twenty-two, is likely to continue indefinitely and results in substantial functional limitations in three or more major life activities including self-care, learning, mobility, etc. 2131 Captor Ave Suite 100 Virtually all technology-dependent children would fall xacramento CA 95816 946/447-3324 within this definition. Tollfree hotine 800/952-5746 TIV §16/447-3331 438 PAI is currently in the process of implementing a 1986 federal mandate to protect and advocate for the legal and constitutional right of mentally ill individuals who are in residential facilities or who experience disability related problems within 90 days of discharge from such a facility. PAI provides a range of advocacy services: (1) information about the civil and service rights of developmentally disabled persons and about procedures and sources of assistance for obtaining and enforcing those rights, (2) referral to other sources of assistance, (3) technical assistance and training to developmentally disabled persons, their families and/or other advocates in the resolution of individual problems and (4) legal representation to developmentally disabled persons in administrative and judicial proceedings to establish and enforce their civil and service rights. PAI does not charge fees for services rendered. However, in individual cases, PAT may ask for reimbursement for costs incurred in the course of providing representation based on a client's ability to pay. Such costs may include expert witness fees, court costs, travel costs, etc. Based on its publicly developed priorities and subject to resource limitations, PAI represents eligible persons with respect to any problem related to their disability. This typically includes special education services and rights, services under California's Lanterman 439 Developmental Disabilities Services Act (California's case management and service delivery system for DD persons), vocational training and rehabilitation services, state and federal antidiscrimination law compliance, and access to financial entitlements and services to provide for subsistence, personal care, homemaking, therapy, health care, etc. (The latter includes programs such as Supplemental Security Income (SSI), In-Home Supportive Services (IHSS) through the Department of Social Services, Medi-Cal services including in-home medical care services and medical services provided through California Children's Services (CCS),California‘'s Title 5 program for crippled children.) In testifying here we have three objectives: (1) to provide information about the real world problems faced by technology-dependent children and their families in attempting to secure services adequate to allow their children to live in their own homes, or in community care facilities - small group homes and foster parent homes providing home-like settings; (2) to share with you some of the successes; (3) to provide PAI staff's perspective on the legal, practical and program barriers which may need to be addressed on behalf of technology-dependent children. PAI staff have represented several children who are technology-dependent in order to secure home or community-based care. We are grateful for the opportunity to present our view of the legal and practical barriers to such placement to this committee. Our testimony is based 440 on that experience and on research undertaken as part of our representation. The option of placing medically fragile children in noninstitutional settings is relatively new and results from advancements in medical technology. The importance of allowing technology-dependent children to live in community settings, preferrably their natural home, cannot be overemphasized. When feasible, living in a nurturing home environment is extremely positive for the child both medically and psychologically. The child's developmental progress is enhanced. Parents are more confident of the care their child is receiving. In-home services are generally less costly than in-hospital services. Such services are favored by federal and state laws which require placement of handicapped children in the least restrictive environment. Unfortunately, the law governing entitlement programs and the thinking of the agencies that administer them has not kept pace. Private health insurers also seem to lag behind in the effort to develop mechanisms for providing cost effective in-home medical services to children and their families. Ten years ago the barriers to placement of technology-dependent children at home were often centered around medical feasibility. Now, the barriers are more often created by a lack of necessary resources. First, there are significant gaps in the availability of services. For example, California's In Home Supportive Services (IHSS) Program will pay for medical services such 441 as suctioning of a tracheostomy tube, but will not authorize payment for services necessary to monitor a medically fragile child's condition in order to determine the need for suctioning and other intervention. California's IHSS program also considers some children who in fact can successfully live at home as too disabled to be entitled to live at home. California's Medi-Cal wiavers which provide for in-home medical care offer fragmented coverage which often results in the child being required to remain in the more costly hospital setting. Second, benefits and services are not coordinated among various providers, and agencies will often deny services based upon their determination that the responsibility may lie with another organization. Parents experience a great deal of added frustration when they are forced to go from agency to agency often ending up where they began still without any services in place. In many instances, the agency with a responsiblity for in-home medical services is not responsible for hospital care. As a result, there is actually a financial disincentive to in-home placement even though the cost to the tax payer and society is greater if the child remains in the hospital. Third, in some cases, agencies have policies that conflict with existing law or decisions are made on the basis of local policies that conflict with state-wide policies. Finally, neonatal intensive care discharge planning sometimes fails to explore or advise the family 442 concerning alternatives to obtain services adequate to serve a technology-dependent child in a community setting. The Possible Resources Medi-Cal is California's Medicaid program which provides medical coverage for low income families. For those families that meet the financial eligibility requirements this program may provide funding for In-home Medical Services that will allow a technology-dependent child to live in the home. There are significant limitations however. The restriction to the availability of services begins with a federal regulation which limits home health services provided by licensed personnel (R.N. and L.V.N.) to those provided on a part-time or intermittent basis. (42 C.F.R. §440.70(b)(1).) There is no such restriction in the authorizing statute. (42 U.S.C. §1396d(a)(7).) The regulation forces states to provide ongoing in-home nursing services only as part of a waiver program . Absent that regulation, in-home nursing could be provided at least to the extent the cost for in-home nursing was less than the alternative out-of-home medical placement. California currently has two waivers that can potentially assist technology dependent children to receive medical services necessary to allow them to move into their homes or the community. The first is administered by the state Department of Developmental Services. It is only available to 443 developmentally disabled children (under the state definition which is somewhat narrower than the federal definition) who are placed in intermediate care facilities for the developmentally disabled or in skilled nursing facilities. The waiver does not provide nussing care but does allow for the addition of medically necessary services such as transportation, case management services and health aid services into these facilities and can result in children being allowed to move out of acute care hospitals. In-home medical care services are available as the result of a home and community based services waiver administered by the Department of Health Services. It is reserved for children and adults who require an acute level of care. The proposed in-home care must be less costly than available institutional care. Up to 24 hours of nursing care can be provided in the home as well as other medically necessary services. Currently, this is the only waiver available in California that will help eligible families bring their technology-dependent children home. Problems include the fact that the deeming requirement is not waived so families must be financially eligible for Medi-Cal services. Further, California has also chosen to define acute level of care with reference to specific illnesses or conditions rather than the amount of care needed or the practical availability of any skilled nursing facility for placement. Such conditions include 444 serious wound infection, need for continuous intravenous fluids and antibiotics, urinary complications, pulmonary complications such as heart failure and embQlic phenomena, etc. For the most part, this requirement excludes children who are stabilized but require intensive nursing services over a long period of time. Therefore, it is common that a child who is not accepted by any skilled nursing facilities because he or she requires too much care will be denied In-home Medical Care for failure to demonstrate the existence of one of the required conditions. This policy is contrary to the representations made by the California Department of Health Services to HCFA as part of the state's 1915(g) waiver application: All of the patients served by the IHMC Program have severe, chronic, medical conditions, most of which require around-the-clock care, licensed, skilled nursing care... The factor that distinguishes the waiver population from the typical resident of an SNF in California, is the amount of licensed skill nursing required. The average SNF resident receives 45 minutes of direct skilled nursing per day. This reflects the nurse-to-patient staffing ratio required of licensed SNFs in California. The IHMC patient however, requires almost one-to-one skilled nursing care because of the frequent medical procedures required to maintain him/her and the observation and monitoring required of the patient and medical/life support equipment. These patients reside in acute hospitals because they are the only facilities with adequate staffing and equipment to provide the care needed. The patients do not meet the criteria of the typical acute patient because, although their medical problems are severe, the conditions are chronic. and stabilized. However, SNFs which accept Medi-Cal patients, staff at the minimum required level and cannot provide the quality or quantity of care required by these patients. (Excerpt from a July 22, 1983, Letter by Peter Rank, then 445 director of the California Department of Health Services, to John L. O'Hara, Jr., Associate Regional Administrator, Health Care Financing Administration, Department of Health and Human Services.) A second significant restriction prohib#ts provision of home health care services under the above-mentioned waiver in most licensed community care facilities. Community care facilities include small group homes and foster homes. While a limited exception is made for some ventilator dependent children in foster homes, this does not apply to small group homes. The result is that unless a technology-dependent child can live at home, access to a community living environment is virtually impossible. Probably equally great barriers are caused by a difficult to document but quite apparent dislike of the program in some Medi-Cal field offices. For example, one office began telling applicants that treatment authorization requests for in-home medical services could not be submitted unless and until the office director had granted prior approval. Field offices have refused to issue written decisions of denial, thereby stalling appeal rights. Some field offices have limited care to 16 hours per day rather than the 24 allowed by the waiver despite the need. Parents have been told that they could not leave the house when the nurses were present, that they could not go on vacation and that nurses were not allowed to take the child out of the home even if this was otherwise medically allowable. 446 Medi-Cal field office staff have also stated to PAI staff that the program should not be available to children with severe cognitive impairments. This criteria is not included in policy or regulation but is found in a model fair hearing position statement provided by the Department of Health Services to Medi-Cal field offices. In that document the Department suggests that "[t]he program is aimed basically at those ventilator dependent patients who have the physical and mental ability to participate in a meaningful way with their family and/or community." Later, the Department suggests that, if possible, the field offices argue that in-home medical services should not be provided "because the claimant's awareness of his/her surroundings as well as evidence of mental emotional functions remains undetermined." However, even children with severe cognitive impairments can benefit from living at home. The model fair hearing position statement also excludes children who would be eligible for state hospital placement. Technologically dependent children who are eligible for regional center services under the above-mentioned State Lanterman Act are also eligible for state hospital placement. Regional Center eligible children are those who satisfy the eligibility criteria in California Welfare and Institutions Code Section 4515(a). The disqualifying criterion of eligibility for state hospital placement would, therefore seem to exclude all technology-dependent children who are mentally retarded, who are substantially handicapped by reason of epilepsy or 447 cerebral palsy as well as substantially handicapped children under the age of three years who are at risk of becoming developmentally disabled. Thus excluded are children who have one handicap too many. Additional limitations could be caused by the development of sub-acute level of care units. While these services may be necessary, they could also act to deny additional children access to in-home medical services since it may prove feasible and less costly to serve the child in a sub-acute unit. Despite the problems, the current waiver has allowed many children to return to their families rather than grow up in a hospital. For those parents who want to have their children move home and who meet the eligibility requirements, it has provided the means of reuniting families and allowing the child to live the most normal life possible. California is planning to initiate two new waivers in the late spring. One will allow for waiving of the Medi-Cal income deeming requirements for children who are at the skilled nursing level of care. The second will also allow skilled nursing level children to return home but will not waive the income deeming requirements. Unfortunately, these waivers will be limited to purchasing $6,000 worth of services per year and are capped at 50 recipients each. California Children's Services (CCS) is a statewide program which is administered at the local level through 448 county health departments. The program is funded in part by Title 5 of the Social Security Act. The program provides medical assistance for children with certain listed medical conditions whose parents meet financial eligibility criteria. Coverage criteria and willingness to provide in-home nursing services varies greatly from county to county. CCS policies limit in-home nursing services to 16 hours per day for a total of three months. There is no apparent statutory authorization for this limit. Still, some CCS offices have been willing to provide additional nursing services under the category of “respite” which is limited to 504 hours per year. Some CCS offices have been willing to provide equipment and supplies as well to technology-dependent children who are living at home. California's regional center system consists of 21 private nonprofit corporations under contract with the State Department of Developmental Services. Centers are mandated to provide case management and purchase services necessary to enable client's to "live a more normal and productive life" pursuant to California's Lanterman Act. Regional centers serve only persons who meet California's definition of developmental disability which is somewhat narrower than the federal definition. It excludes, for example, persons who have a solely physical condition Regional center services tend to vary substantially from center to center. Some have agreed to provide in-home medical services for their client's while others 449 have refused based upon their own policies that prohibit purchase of “high-tech” medical services. These policies appear to conflict with Lanterman Act policies and priorities, including the priority to provide for services to enable a child to remain with his or her family if other agencies do not provide such services. Regional centers have a statutory responsibility to provide necessary services when other sources of support are unavailable. The In-home Supportive Services program is funded through the Department of Social Services and administered at the local level by County Social Service Departments. This program is available only to low-income disabled persons. It can provide some funding for personal care services and protective supervision under the supervision of a treating physician. The amount of care necessary is determined on a time-per-task assessment which excludes the time necessary to monitor the individual's condition to determine when a paramedical function, such as suctioning, should be performed. Moreover, the state has interpreted the program to provide broader "protective supervision” only for those who are mobile and therefore at risk of injuring themselves because of their mobility. This policy excludes those persons who require supervision because they are nonself-directing and who have medical problems limiting mobility - as is the case with persons who are mentally retarded and quadriplegic. This policy, which we 450 believe to be inconsistent with state law, was represented to a PAI attorney by IHSS staff as being based on the belief that such persons should be in out-of-home medical placements. Private insurers and health maintenance organizations are an additional source of funds for in-hcme medical care services in some instances. However, policies often fail to provide for, or severely limit, the availability of these services. In addition, there are often dollar policy limits which can be reached quickly if a child requires substantial nursing care. Private insurers sometimes can be convinced to provide in-home medical services even without specific coverage where it can be shown to be cost effective to do so, i.e., cheaper than covered alternatives including frequent ICU hospital admissions. Twelve states have set up state insurance funds for individuals that are "uninsurable.” All insurers are required to contribute to the fund in order to do business in the state. In some instances, such a fund may provide in-home medical services for children who otherwise would not be covered under a private policy. Other states, such as Massachusetts, have mandated that insurers provide certain minimum benefits. This practice was upheld in the recent U.S. Supreme Court Case of Metropolitan Life Vv. Massachusetts. California has not yet chosen to set up 2a fund for the uninsurable or to mandate that insurers offer in-home medical services. With respect to private 451 insurers, the question is more one of public policy than currently unenforced legal rights. The Children JK is a thirteen-year-old child who currently resides in the intensive care unit of a Northern California Kaiser Hospital under a Kaiser Health Maintenance Plan. She is the victim of a brain tumor that was partially removed in 1982. Subsequently she suffered a sudden cardio-respiratory arrest in 1985 and underwent further surgery shortly thereafter. She is currently respirator dependent and functionally blind due to scarring of her corneas. She has no swallow or gag reflex and a gastrostomy tube is in place. She is partially paralyzed although her left side is somewhat functional. It is impossible to accurately determine the extent of cognitive impairment she may have suffered. She has been able to learn to use some sign language however. She reacts meaningfully with her environment and is capable of some self-initiated activities. Her emotional status indicates that she is responsive to those around her and her needs for family and companionship are obvious. She expresses her anger and frustration by frequent attempts to detach herself from the ventilator. Such self-destructive actions are minimized when her environment is supportive and receptive to her expressions of needs. In the words of her doctor: "The patient has multiple 452 needs that cannot be met in the hospital setting. These include the normal interactions of home and family, the presence of consistent caretakers who can learn to communicate with the child, and the provision of appropriate physical and occupational therapies to develop her mobility, self care, recreation, and relieve frustration and fear.” JK's parents are interested in having her return home. Her doctor believes this is medically feasible and may result in significant reduction of the anger and frustration she currently feels. Unfortunately, this currently would require the provision of 24 hour nursing care until the hours could be reduced to 16 hours a day following hands-on parental training to enable her parents to assume the responsibility for an 8-hour shift. JK's Kaiser coverage does not provide for in-home nursing service. Kaiser has not responded favorably to requests to modify the policy limits in this instance. The family is not financially eligible for assistance through the Medi-Cal program. The regional center serving the child has so far refused to provide assistance for in-home nursing citing an internal policy against providing "high-tech" nursing services. CCS has verbally agreed to provide up to three months of nursing services for 16 hours per day and 500 hours of “respite” services per year thereafter in accord with their policies. JK's family is frustrated by the situation they find themselves in. They have particular difficulty 453 understanding Kaiser's position since the Southern California Kaiser has placed ventilator dependent children at home in some instances with nursing assistance as part of a pilot program. They do not believe it is feasible or fair to the other members of the family to decline Kaiser coverage and reduce their resources and income to a level where they will qualify for public benefit programs. Most of all they agree with the statement of one of JK's nurses: "An ICU is no place for a child to grow up.” SA is a one-year-old. She suffers from a rare disease know as Ondine's curse or hypoventilation syndrome. It renders her unable to control her own breathing. This is particularly critical when she sleeps. Her brain's failure to respond to her body's need for oxygen can result in death within minutes if she is not hooked up to a ventilator. She requires 24 hour care. Her tracheotomy tube must be suctioned every few hours when she is asleep. When she is asleep, she has frequent attacks and often disconnects her ventilator when she is restless. When she is awake she must be watched to insure that she does not fall asleep. In this instance, a private health maintenance organization is paying for 12 hours per day of care on week days and 8 hours per day on weekends. The parents, who have three other children, were expected to provide the remainder of their daughter's nursing care which was an impossible burden. CCS and the child's local regional center have agreed to contribute funds to allow for 16 454 hours of nursing care on week days, pending the family's appeal of their HMO's decision. JR is an eight-year-old boy who suffered a near drowning accident at the age of two. He has severe cognitive, motor and sensory impairments. &#e requires total care including air-way management of his tracheostomy and gastrostomy feeding. He lives at home with his mother and two brothers. He receives 24-hour care from nursing and trained lay staff. Funding is provided by a combination of resources. The family's private insurer was again convinced of the cost effectiveness of providing care at home rather in the hospital. The local regional center is also contributing to the cost of care. In this instance it was necessary for the parent to file for and prevail in a hearing against the regional center in order to secure funding. JR also attends school on a full time basis in a special day class for severely handicapped children. He is provided with an in-class health aide to perform his airway care and meet his other physical needs. These services also were only provided after JK's mother prevailed in an administrative hearing filed against the responsible school district. AR is a one-year-old boy who suffered severe brain damage at the age of one month as a result of sudden infant death syndrome. He has severe mental retardation, spastic quadriplegia, seizures and cortical blindness. He has a tracheotomy tube in place and a gastrostomy. The 455 ICU unit of an acute care hospital where he currently resides has indicated he can be discharged to his home with nursing care. Remaining in the hospital is contraindicated because he is susceptible to acquiring respiratory infections in the hospital environment. Medi-Cal refused to provide in-home medical care saying AR did not require an acute level of care. A hearing was pursued and the final administrative decision agreed with the initial denial. A skilled nursing facility willing to accept AR has not been found. The current regional center proposal is to place AR in a state hospital, against his mother's wishes, prohibitively far from his family and most likely on an acute ward. EL is a fourteen-month-old infant who currently resides with his mother and eight-year-old sister. His mother, who is a single parent, works as a seamstress. EL, who was born prematurely with a cleft palate, suffered full cardio-respiratory arrest in a neonatal ICU at the age of 3 months due to food aspiration. He has cerebral palsy, a seizure disorder, apnea and bradycardia spells and breathes through a tracheotomy tube, and is fed through a gastrostomy tube and requires daily IPPB treatments. EL was initially sent home with 24-hour nursing coverage paid for by a private insurer. The insurer later determined that the provision of home nursing services was not a covered benefit and terminated services. The grounds for the termination was the insurer's conclusion 456 that he did not require "skilled nursing care". A law suit filed on behalf of EL against the insurer is to date unsuccessful. Medi-Cal denied the in-home.nursing request on the ground that PAI had filed suit against the insurer to force the insurer to provide in-home nursing and that Medi-Cal did not have to consider the request until the law suit is resolved, possibly years in the future. The field office suggested that EL's mother quit her job so that there would be no third-party payor in the picture. EL's local regional center initially agreed to provide 16 hours per day of in-home nursing care but later denied responsibility. The regional center took the position that in-home nursing is not a service provided by the regional center except on a short-term basis. An administrative hearing against the regional center is pending. The mother is receiving 16 hours a day LVN in-home nursing pending the fair hearing. She is providing her son's care for an 8-hour shift in addition to working 7 hours a day. The regional center is proposing state hospital placement for EL contrary to the mother's wishes. SM is a semi-comatose or comatose child as a result of a near drowning incident in 1978. She requires total care including airway monitoring and suctioning. She lives with her mother and meets the financial requirements for California's In Home Supportive Services Program administered through the Department of Social Services and 457 County Social Service Agencies. This program will provide payments for “paramedical” care for eligible recipients. SM's mother requested payment for the 24 hqQurs care she felt her daughter required. The request was denied and a hearing requested. The hearing decision upheld the initial agency determination granting approximately 115 hours per month. The decision was based upon the conclusion that the IHSS program is designed on a time-per-task standard. While time was allowed for required activities such as range of motion and percussion and suctioning of SM's tracheotomy tube, no time was allowed for monitoring her status to determine when the various activities were required. CG is a two-year-old girl who lives with her mother and grandmother. She has multiple congenital abnormalities including severe retardation, cortical blindness, cleft palate and obstructive apnea. She has tracheotomy and gastrostomy tubes in place. She requires ongoing care including frequent suctioning and airway care, gastric feeding and routine monitoring of health status. CG's mother requested In-home Medical Care Services from Medi-Cal at the rate of 16 hours per day. The services was denied on the determination that CG required only a skilled nursing level of care, not acute level care. An administrative hearing was requested by CG's mother. The hearing officer found that there was no skilled 458 nursing facility within 50 miles of CG's home willing to accept her. All hospitals contacted would have placed her in acute care wards only and two would have‘placed her in intensive care. The hearing officer further found that CG required more nursing care than the minimunr daily average of 3 hours required in skilled nursing facilities. On this basis he concluded that CG was eligible for In-home Medical Care Services. The Director of the Department of Health Services alternated the hearing officer's decision however, relying upon a section in the Medi-Cal Manual of Criteria which sets forth the indications for acute prolonged care in terms of medical problems such as serious wound infections, severe vomiting, bowel obstructions etc. This definition does not consider the amount of care required by the individual. The Director concluded that evidence that no skilled nursing facility could or would accept CG was not relevant. CG remains at home with her mother and grandmother sharing the responsibility for her care. They refuse to place her in an acute care hospital. An appeal of her case is being considered. KH is a four-year-old developmentally disabled child suffering from a severe gastrointestinal dysmotibility and related complications. He currently resides in a licensed community care facility. He is receiving Total Parenteral Nutrition (TPN) or hyperalimentation, a method of providing life sustaining nutrition of 14 hours duration per day. While routine monitoring during the feeding may 459 be performed by anyone, the start up and take down of the feedings may be performed by a Registered Nurse. His community care provider requested In-home Medical Care Services for the purpose of administering the TPN. The request was denied on the basis of a Department of Health Services regulation which prohibits the provision of In-home Medical Care Services in community care facilities because it is not the parental home. The hearing officer granted the request, finding that the regulation was not supported by the controlling statutes and was therefore invalid. The Director of the Department of Health Services alternated the decision, relying upon the regulation. The state regulation appears to be inconsistent with the federal regulation (42 C.F.R. §440.70) which provides, for purposes of the delivery of home health care services, that the home is any place of residence other than a medical facility. KH's local regional center has agreed to provide the necessary nursing services pending appeal. Conclusion The inability of families to receive benefits for needed support services often results in children remaining for long periods of time in hospital settings. As the above testimony demonstrates, this can stem from a lack of coordination among agencies, arbitrary decision making at the state or local level and from an actual lack of resources. While resource limitations are very real, 460 the quality of life as well as money should be factored into the consideration of whether governments are going to make a commitment to technology-dependent children adequate to allow all of them to live in the most normal environment possible. The conclusion we have drawn from our experience in assisting and representing technology-dependent children is that the primary barrier to their returning home does not lie in a lack of desire in their families or a lack a knowledge of available resources but in a lack of coordination between responsible agencies and often in a lack of affirmative administrative implementation of existing legislation. In addition, it will be necessary to initiate new and creative approaches to providing critical resources to those children and their families who currently are not covered by existing private or public programs. 1064k 2/24/87 461 SKIP, INC. SICK KIDS (NEED) INVOLVED PEOPLE NATIONAL HEADQUARTERS 216 NEWPORT DRIVE SEVERNA PARK, MARYLAND 21146 301-647-0164 301-261-2602 April 27, 1987 Mr. Bill Pickens Executive Director Department of Health and Human Services Room 4414 HHS Building ) 330 Independence Avenue, SW Washington, DC 20201 Dear Bill: Enclosed you will find my remarks which I will present to the Task Force on May 6th. I have also enclosed some additional organizational material, with accompanying attachments, which I hope will be of some assistance to the Task Force in formulatirg their recommendations. Thank you for inviting me to participate in this program. I look forward to hearing about the progress made to date by the Task Force. Sincerely, SKorn— Karen A. Shannon National Executive Director Enc. KAS: 11 462 SKIP, INC. SICK KIDS (NEED) INVOLVED PEOPLE NATIONAL HEADQUARTERS 216 NEWPORT DRIVE SEVERNA PARK, MARYLAND 21146 301-647-0164 301-261-2602 MAY 6, 1987 TESTIMONY before DEPARTMENT OF HEALTH & HUMAN SERVICES to the TASK FORCE ON TECHNOLOGY-DEPENDENT CHILDREN given by KAREN A. SHANNON FOUNDER AND NATIONAL EXECUTIVE DIRECTOR 463 cod morning Mr. Chairman ard Task Force members. My nare ‘s Xaren Srarron and I am wearing two hats this morning. I a~ crin Sharnon’'s motrer ana I ar tne Founder and National Executive (: 0 yirecteor of SKIP (SICK KIDS (NEED) INVOLVED PEOPLE). SKIP ss a ~~ ss-ronts parent professional organization that was started ara el yy nurtured ny a srared parent professional commitment to cptimizirg the quality o* ite for children who are technology aeperdent/assistea. Tre workirg definition that we use to describe the population we serve is "children with complex medical care needs wno require technology, services, or scme form of on-going meacical support for survival." SKIP was started quite informally but the needs of the families grew and each of the thirty chapters throughout tre country have adapted a service/support configuraticn to meet the needs of the children and fariiies that they serve in their own state. The philosophy ard mission of all the chapters is sharec out tne evolution of each state is as varied as the indiviaual reed manrcates. The basic thrust of our effort is tract parents and consumers must have girect input into their service cenfiguration and the families must have support in their care giving effort. The mechanics and evolution of SKIP have been defined by a of the families that are SKIP. Programmatically, our activities inc liude: a '. information and referral to families, 464 lies, © .ecucation and peer suppo~t to fami 3.advocacy and assistarce ‘n securing services 4 helping the a lied rea len care nrctfessiona s understanding the reeds of families [#1] .deveioning public awareness anout tne needs cf tre noruiaticn we serve. Ads SXIP evoives a number of issues become ciearer ang clearer Families Co wart to make informea decisions about nealth care alternatives, they do want extensive pre-home care preparaticn ard planning, they must have adequate financia! assistance and they must either be trained in the management of tne cn-goirg care cenfiguration or they must have the cpportunity to identify tneir manage-s. This is the essence of tne composite mode i. Who are the SKIP families? They are families that are are varied both ecoromicaliy and ethnically. The configuration ara cemogrannics of the individual families is representative o° tre changing family structure in the entire United States. Tre annears to be one universal truth tnat all of us as families have shared is that we really can do this ard live if we are “fully supportea in our mission. This truth seems to have defined many of our goais ang objectives as an organization. It is realiy quite difficult to nrovide ail this care in a vacuum. Families need info-~maticn arc perhaps that is the key to success. Tney need to pe corpete~t and sxii.ed in so many ‘areas and that is perhaps the sing e factor that makes them a new ard distirct populaticn. we nr x MODEL that is not exclusively a medical model! but one that represents a multifaceted ccnfiguration of services. Trese 465 criidren are cri.cren ara ycurg aduits ard rot simply extensions of advances in modern techroiogy. “hey nave to attend school, they pave to experierce life 2rd trey have to be able to bpecore “uncticral and indenerdent mempers OT society. How do “we do this and earn from other mcdels that have been researched ana Tha =ovement to deinstitutionalize is on-going throughout the United States. I think that the ma ority of people invoiveca in the caring pn-ofessions have learned that this is what is best for chilcren. We know that if chilacren are to maximize their growth they must pe nurtured and grow up in a community that accepts and welcomes them. If nind sight is 20-20 then let this pe a guide for us when we examine the options for the children that we have all been asked to serve. The first option must he tre Natural Tarily. - There will be cases where this simply wi’! not be possibie. We must look at piacerment witn “ami y substitutes. Most of the SKIP families that have ventured inte foster or adoptive care situaticn love the children very much but have found it very discouraging to deal with the ancillary system ard these true saints are being tested and retested in a manrer that would make St. Peter shake. I would like to share with you components of a model that we would consider appropriate for the families we serve. There are five ccmporents that have been identified as mandatory ingredients Tor ‘ong term care in the community. This is not a rew automobile club but something we call the five A's: CARE m~ust be: 466 availabie accountable accessible anpropriate ana a*fordahbhie. Ase ~ave enciosed a chart of tnis model to enable us to secure furcs fcr small scale impiementation of this mccel. The outco~e of on 0 imnierentation of tnis model will hopefully generate data to better defire SKIP's home care agenca. The beauty of this rode! ‘is that it has extrapoiated what families have described as what has worked best for trem and made it truiy family centered and community based. The ccncent arc structure of many of the existing programs have served as tre sxe etch of this model. The primary difference is that our rca=i is a networking model as opposed to a service delivery system. There are some major ethical issues that are generated when a single service system must be a'!l things to a!l peopie. Fow can a system tnat provides services monitor themselves and remain impartial? This is an unfair demard to place upon a singie system and not realistic, with the enormous pressures that ail tne providers are feeling to reduce costs. I think that we must all recognize the fact that tne ccst cf trese chilcren has generated a great dea! of concern. We co fee: at 35%IP that tne cost containment must come through innovation and not througn reduction in services. We feel that if both tre nrivate and public sector would compete to deveiop functional models that would cost contain care for these childrer in pcth 467 rural ard wurpan areas as opposed to suppianting care witn an 0 1 unskilled lanor force tnis would renresent a cecnstruct ive approach to solving a most pressing issue. mgiviciia. fami igs nave been cuite innovative and have incorporatea tnerseives to eiiminate paying exorbitant acercy fees. we a'soc ‘fee! that =a State pool of qualified nurses snould be exarired where the sta+¥ ras fu! berefits, is salaried, and has a'! tne advantages of full time employment but is not paid at a costly hourly rate. Trese methcds wouid e'iminate scme of tne voracious proliferation of agencies that are driving the cost of these services un. The need for appropriate individualized furdirg poiicies and nrocedu~es fcr managing financial support and assistance to these families is critical. There is a dramatic need to recognize that some families can cope with fairly miniral supports, while others may reauire high levels of support ard assistance. We cannot nlace ourselves in the position of punishing the child because we are inflexible. We must recognize that these differences exist. The funding structure must be flexible because families are dynamic and situations change. The demards of these children are great. They have many needs which we cannot ignore, and tnrose needs will interface with many facets of the social, ~edical, educational and vocational systers. The way to achieve a ccmposite service delivery system is through infomation dissemination. we must exarine tre nrossibiliity of a central system that is automated to share ara identify anpropriate resources for families. There is a most urgent reed to develop and centralize stardards and to bank this 468 information for monito~ed so that there is families. a ja . These City standards assurance for 469 must care. al - - SKIP, SICK KIDS [reed] INVOLVED PEQP_E, renreserts tne families of cniicren who are tecnnology-denendent across tre country. SKIP is the on'y natioral ocrganizaticn that exclusiveiy represents these children and their families. SKIP is a volunteer based agency with a primary mission of assistirg families in expioring the option of home or alternative care to that of iong term institutionalization. - "he definition of our kids and how we cefine the family since the organization's conception and incorporation Nov. 1982, (concentio~ of the organization was Nov., 1879) (Attachment #1) was formally written and distributed in October 1985. The definition as written and continuously being usec is: A SKIP KID is a chiid with complex health care needs who requires technoiogy support, service support or a form of skilled nursing judgment/assessment support for survival, linked with a critical time element that requires immediate intervention or tne child will die or suffer irreversible damage. (Attachment #2) All family lifestyles are recognized: traditional! two parent families, single parents, and adoptive and foster parents. From time to time we have expanded our definition to meet the neeas of the extended family also. At tre core of our organization are farilies of technology deperdent children, with the PARTNERS IN CARE or membership, being composed of the medical community, rehabilitation community, mental health, service providers, private insurance, 470 ega' advocates, resources (prctit/non-nretit), data coilection acercies, iegislative policy-makers, community organizatic~, volunteer crgarization, family services, eaucation, fedemal/state YY funding agercies, maternal child ard health/children’'s medica: services, as we'!! as other interested incividuals and families as thre supporting ring (Attachment #5). This is the very dynamics for a national moael of service/support. The ccmpletion of all SKIP activities are dependent on volunteer manpower as well as donated resoures due to the fact that al) directorship positions are volunteer. Present v, only special project dollar are available. Qur current activities and goals include: 1) to provide information and referral services to families 2) to provide parent support and education services 3) assist in the location of funding for ncme care 4) information develonment and dissemination to providers on the needs of the child and their family 5) to provide individual case advocacy services (this is often confused with case management by the professionals) 6) conduct educational and awareness activities through national lectures 7) participate in program and policy expansion on state and national! levels The average number of families requesting informaticn or assistance per state is approximately 100+ joined ny approximately another 10C+ professiorals requesting information and assistanrce in ceveloring their programs so that they can better serve this pcouliation. 471 SKIP is often described as tre "2genrcy of last resort. when the traditional system fails, then SKIP is callec Goon usually py the nrovider: coctor, nrurse, therpist, etc. but seidom tre family. The reason is that the families are not aware of our existence. The families at this stage are first learning thei~ chi'd's care, neeas ana rea flags. Only after ail of this co they start to iearmn the people in the system and all tre «eys TO make the system work. It is not that they don't care or ack the commitment or motivation to call for help, they are just too tirea o~ experiencing the begirning of "hu~n out". It. is only when the families are able to dig more or find trat spacial someone who is wiliing to give a little more of themselves, for they (the parents) don't know that there is more help cut there for them. They do not know we exist. It is only when their situation iooks the bleekest that they find us. Additional organizational information will be made available at your request. What would an ideal system for providing care, services anc support to technology-deperndent children ard their families crganizationally as well as functionally look like? We must first understand that the initial point of entry for ail tecrroicqgy aenenadent «ids is eithre~ from pbirtn, an illress, or an accident, so trey pegirn their jourrey frem the medical, usually hRospita cgeiivery division. This means that they begin a'l ca-e, services, and support frcm a medical model, which is 472 understandably appropriate. However, as they progress ard ae thanks to medical technolcgy, we must then broaden those to include all areas: ecucaticn, sccia , renap-recreatioral ail areas to promote norma: fiving and deve ion a a r YA [I cemprekensive system trat wi accress tre child and family as a total entity. Our recormengation for a model would De very similar to the SKIP model earlier described. “here iz a mode! that we wouid consider appropriate for tne famiiies that SKIP serves. It consists of five components that ~ave bHeen ‘identified as randatory ingrecients for long term care in the community. Care must be: TM) available 2) accountabie 3) accessible 4) appropriate 5) afforaanle witn a consistent reinforcement tO insure program SUCCESS ny requiring a: 1) comprenens ive 2) coordinated 3) collaborative 4) communicative annrmoacn tO service delivery. Becauze of the multi-service ang si.cpert needs of this population, it will pe essent = cra = Joint effort with a!l ailiecd service providers, families ana acencies meet this challenge together in developing 20 imniement ing this new comprehensive service/support moae ll. Always z an reinfcrcinrg trat the family 473 must maintain the core nositicn 2 enual ana active member of the team. I have inclucea a suggestea diagram of service/support (Attachments #4 §& BS) that was included in a grant proposal to tne Department of Hea'!th arc “uman Searvices as well as the Department of Maternal Child ana Health. SKIP is presently using this mode! as we continue witn tne deveionment of The Children's/Family Home Care Agenda Qur uitimate goal! is to assist families in becoming their child's and family's primary team manager. NETWORKING SYSTEMS Information as well as service network systems are the backoore for children and their families to insure survival. Is there a national or regional networking system aiready established? Unfortunately, at present there is no one exempiary ~oge! that wou l!d be recommended Jointly by families and providers alike. However, the corcept and structure of many of these networks wnen extracted and redefined could produce a more functional system. First, we must recognize that tnere is a difference between a service system and a network system. The primary difference is celivering services in a hands on/off manner with a potential conflict of interest brought on when the service provider is receiving direct reimbursement, often for case managerent services. Whereas a network system provides only information, training and referral services, a service network will provide support and resources to families. It is difficult at best to represent or truly advocate for the families due in part. to tne 474 sunainrg scurce in which pays tne systems to service the families. It is the monetary attachment that restricts the system “from cenu‘nely representing t"e fami!ies - understanding that atl systems must rave funding to stay in operation The quest ion is now to bhliena tne service and support nNetwo"kKs tcgetner —- or ackrowiedge that they cannot move forward. Case in point: a family is unable to meet funding providers documentation/ authorization requirements, so the family is being faced with a non-compliance suit and withdrawal of funding. The family contacts the funding source in writing to request a hearing, which is granted. At the hearing, the hearing officer, upon reading the case, recommends to tre family that they withdraw the hearing request because in reaiity the agercy providirg the services is -& non-complying source, at risk for losing their vendors license. Case in point: The beaside documentation does not support tTnat proper medical care is being given, recognizirg that numercus community health care providers are invoived in cnild’'s care. The parents are cited for medical neglect ard a cri'c apuse suit is pursued by the system. what is the system's responsibility for cdecumentation, as we ll as giving the supportive services as prescribed by the physician? When the system fails/is non-compliant, is it tre family's responsibility to cover for them? These are but two examples of tne numerous inrcinerces of 475 the system's inability to support tne needs of the techroicgy dependent child and family. where can a family go to get help? Often times when the system reccgnizes trat they are talking to a narent the credibility of their information is questioned” Attachec is 2a list of projects in progess with the goal! of rectifying this pronlem, including the identification of the newest resource guides available. It is titled "1986-19237 Resource Guice to Organizations Concerned with Develionmantal Fardicans" prepared by the American Ascscociaticn of University Affiliated Programs. (Attachment #6) BARRIERS Barriers facing the technoiogy dependent population is not unlike tnose faced by other health impaired population. Thein oniy difference is the intensity in which the service ‘= delivered. The main issues include the identification of funding dissemination of program information, addressirg ecducationai ard sociai needs of the child and family, providing for quality assurance, education of both professionals and the public on tre issues and needs of these children and their families and scciety's commitment. Identifying Funding Programs: The need for appropriate individualized furding policies ara procecures for handling finarcial support and assistance to these MD families is critical, both in private and public sectors. Ther is a need to recognize that some families can cope with fairy minimal supports, while others may require high levels of sunno-t 476 and assistarce. Flexible funding is vital because tre famiy situation changes over time and home care arrangements need to adapt accordingly. Meeting the Educational, Developmental and Social Needs of the Child and Family: The technoiogy aependent child places unique, new aerands on our established educational and social systems. It is important that we not neglect preparing and integrating him/her into our society. Provisicns for educating this child must be establisrea both in public ana special education settings. Peer acceptance must be fostered through understanding as wel! as exposure. Encouragement through educational and support systems will one day allow for the self-sufficiercy of the technology dependent children. Disseminating Information: “here is a great number of existing, well established programs promoting maximum family growth for specialized care in smal localized areas of the nation. A system must be established to collect and distribute information throughout the nation on how different programs/resources were planned, developed and how they now operate. The system must snare information on available treatment centers and costs to families, health care professionals, medical insurance carriers, regulatory agencies, and non-profit organizations - ultimately linking a’ systems in order for specialized health care to survive throug" coordinated management on all levels. 477 Quality Assurance: “he development of standards of care must be estanlishec that are flexible, diverse and individuaiized “cr each _ child. Avenues for ronitoring are needed tc assure that the services and the products are being delivered in tne community are of the nighest caliber possible. Education of Professionals and the General Public: It is vital that professional's in all sectors of society, including medical, business, law, financial, education, social, religious are made aware of this growing trend to home care. Professionals must incorporate in their educational! curriculum specialized home health care management and the development of new skills that are needed to service home healtn care recipients. The general public needs to become aware of tre reecas ana issues facing home health care families. This awareness will hopoefully develop the volunteer system for assistarce and promote legislation to make life smoother for these families invoived in specialized nome care. Commitment by Our Society: Our society places great vaiue on science and techno 'ogy. These children are products of our techrolegical advances ir medicine. Though their survival today is assured, the degree to which they thrive, grow ard lead productive ard full lives is the degree to which the child and family are offered support when the acute medical crisis is over. The struggle for life is dramatic and exciting ard in many instances is won or lost in a period of 478 days or weexs. Our efforts core to fruition often bringing shining successes as a life is saved. These children however are scmetirmes ‘eft with co~ti~u‘ng 'ife-long denendence on meaical suprort, or permanent physical limitations from their .ildresses Cver time, tne enthusiasm and vigor with wnich their care is giver begins to wane. They do not get petter but rather beccre “chronics"” Often times the planning and follow-up then becor~es sketchy and the child with compiex medical needs is released to an unpreparea family. Cur commitment rust pe as a society to continue to support these children and their families after the acute illness is over and for indeed a lifetime. The quality of their lives very much depends on our commitment as individuais and as a society to support ard encourage ther and their families. 479 TESTIMONY: Attachment #1 SKIP Sick Kids need involved People SKIP (Sick Kids [need] Involved People), Inc. BACKGROUND On July 18,1883, NBC broadcasted the results of a nationwiae study completed in San Francisco by a team of physicians. Tne study revealed that 4% of all infants born in the United States are afflicted with one or more birth defects. This percentage has doubled in just one year. Dramatic advances in medical technology have allowed the survival of many chronically ill and high-risk infants ana children. "These children would not have survived just a few years ago. Today they are alive. But they represent a new category of disabled children...a category created by technology® Now our challenge is to help the parents understand, love, and care for their child. Medical and social services cannot take the place of the family, rather, the professionals snould use their talents and expertise to help the family survive ana function, to renew its strength and foster its cohesion. Fir it will be the family that will provide the long-term help required by the disabled infant. The family's daily decisions, routines, and relationships will translate into the support, the therapy, the special education, the recreational efforts, and all the other aspects of the best possible quality of life for the disabled child." (Dr. C.E.Koop, U.S. Surgeon General, December 1882, Philadelphia, PA) Some of these children recover completely, others wiil continue to require some level of medical intervention throughout their lives. National attention was focused on this issue in the "Surgeon General's Workshop on Children with Handicaps and Their Fanmilies," Philadelphia, Pennsylvania, December 1882. Throughout the proceedings, there was overriding endorsement for long term care of technology dependent children in the home rather than the hospital. There is currently a national movement to develop a regionalized system to prepare families and communities to care for these children at home or the least restrictive - environment. A handful of families and communities to care for these children at home or the least restrictive environment. A handful of families in the nation have succeeded in bringing their medically intensive care sustained child home with a strong complete network of support from all facets of the medical, bus iness, social and religious aspects of their own community througn their own volition. 480 TESTIMONY: Attachment #2 SKIP Sick Kids need involved People "A SKIP KID" Medical technology is the instrument used to compensate for the missing component necessary to sustain life, demanding a complete array of medical management. If the technology, support and services they are receiving are interrupted or denied, the child will, within a short period of time (5 to 15 minutes), experience irreversible damage or death. The technologica’ assistance received by the child is essential to the optimal growth and development and well being of the child and family. Across our nation today we have a new generation of children created by medical technology, in the diagnostic categories: cardio-pulmonary, gastroenteral/l.V. therapy, renal and neuromuscular. These children are a product, because we as a society offer state of the art medical care after premature births, serious illnesses, and catastrophic accidents. These children survive. However, many of them will remain on life sustaining advanced medical technology. Their very survivai will depend on ventilators, oxygen, intravenous therapy , dialysis, feeding tubes, etc. 481 &L U.S. GOVERNMENT PRINTING OFFICES 1988-210-048/80264-1 | RETURN PUBLIC HEALTH Lio... TOm=mp 42 Warren Hall U. C. BERKELEY LIBRARIES C0bL9u4ud0le