eee. Sashes! g Co - National Institute of NCare Health National XCM ay Mental. fetevien (Oeyreradl Outta aco hatha evere Mental A National Planof lites’ AG ONO Improve Services Ces a GS [Soe DEPARTMENT 05 HEALTH AND HUMAN SERVICES Public Health Service ‘Alcohol, Drug seca and Mental ea italia, us isorders: % ns Cl "ia & ''PUBLIC HEALTH LIBRARY / BERKELEY \ | LIBRARY | UNIVERSITY OF } nt About the cover: In 1990, this picture appeared on the cover of Schizophrenia Bulletin. The artist, Robert Szpak, provided the following description: The painting features a black man resting after he has been posing. I found the young man, sitting and resting, more interesting than his pose. I painted the picture in simple sketching on canvas and used playful colors. After I painted the picture, I called it "Fantasy Nightmare,” ' which I felt or thought reflected my own condition. '' As for me, you must know I shouldn't precisely have chosen madness if there had been any choice. What consoles me is that I am beginning to consider madness as an illness like any other, and that I accept it as such. -Vincent van Gogh, 1889, in a letter to his brother Theo U.S. DEPosiTorY MAY 09 194] ''Ul) Bw In its report on the Fiscal Year 1992 Appropriation Bill for the Department of Health and Human Services, the Committee on Appropriations stated: “The Committee also understands that the National Advisory Mental Health Council is in the final stages of developing a national strategy to improve the care of individuals with long term severe mental illness. The Committee requests that this report be transmitted to the Congress in a manner consistent with section 406(g) of the Public Health Service Act prior to presentation of the 1992 budget request.” (Report 101-516. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Bill, 1991, p. 161.) This report was prepared by the National Advisory Mental Health Council in response to this request. The material contained in this volume is in the public domain and may be used or reproduced without permission from the Institute or the authors. Citation of the source is appreciated. Suggested Citation National Institute of Mental Health. Caring for People With Severe Mental Disorders: A National Plan of Research to Improve Services. DHHS Pub. No. (ADM)91-1762. Washington, D.C.: Supt of Docs., U.S. Govt. Print. Off., 1991. DHHS Publication No. (ADM)91-1762 Printed 1991 ''Foreword Our Nation faces an extraordinary public health problem: to improve the care provided to the mil- lions of people with severe, persistent, disabling mental disorders, individuals who suffer from con- ditions that devastate their lives and often the lives of those around them. The urgency of this problem can be seen in statis- tics, such as presented in this report, and it can be seen on the sidewalks of large cities. But it is too little noted and too seldom discussed. The people who suffer from these conditions typically have had little political or economic power, and the very idea of an illness that strikes at human qualities of thought and behavior provokes fear and alienation in many citizens. Only slowly is public recognition growing that, like physical illnesses, mental illnesses have causes that can be explored, under- stood, and treated, and that it is possible to develop systems of care that benefit the individuals with the disorder, not abandon them to a life of anguish and lonely isolation. The purpose of this report is to focus attention on this problem and to propose a national strategy for bringing the full power of scientific research into the ongoing effort to find ways to improve services and ultimately the quality of life of people stricken by these illnesses. Since the mid-1950s, when State and county men- tal hospitals across the Nation began discharging their long-term patients and moving to a policy of short-term admissions, a series of initiatives has been inaugurated to provide community-based care to individuals who in years past would have been kept for the rest of their lives in these large public institutions. In the 1960s, the community mental health e movement was intended, among other goals, to care for people with these severe, persistent disorders. e In the 1970s, widespread discussion about programs of “deinstitutionalization” attempted to focus more sharply on this target population and address their mental health and other needs that were being largely neglected. In the 1980s, a new Community Support Pro- gram, conducted by the National Institute of Mental Health (NIMH) in conjunction with State mental health agencies, was successful ili RATIO & U5 [97] a) in elevating the problem to a high priority, and pointed the way to developing models of care that included components of other human services, like housing support, as well as coordination across the fragmented human service system. Despite these well-intentioned initiatives, implementation of comprehensive community- based service systems has been slow and uneven at best. One of the major issues has been a concern that the very limited resources that have been available for care in the public sector need to be spent in the most effective way. But without careful studies of what works, under what circumstances, and for which kinds of individuals, there is little factual guidance available to policymakers, system manag- ers, care providers, and consumers. To develop this national research strategy, three panels of experts and many special consultants have systematically reviewed the state of knowledge in relation to quality of care, organization and financ- ing, and resources available to conduct the studies. They have produced comprehensive panel reports that are being published separately. This report, prepared under the direction of the National Advi- sory Mental Health Council, summarizes the panels’ findings and recommendations for research that will be of immediate use in improving services. But the report goes beyond research, as it also serves as a forceful statement on the need to use knowledge more rapidly and with greater determination in the coming decade. The ultimate goal of this report, and of the NIMH programs in this field, is to improve the quality of life for individuals disabled by these conditions. With that goal, and with research acting to provide feedback on how well or how poorly progress is being made, our hope is that the new millennium will dawn with our rich and powerful Nation using its resources wisely to deal with this tragic problem of unnecessary suffering. Alan I. Leshner, Ph.D. Acting Director National Institute of Mental Health Jack D. Burke, Jr., M.D., M.P.H. Director Division of Applied and Services Research National Institute of Mental Health ''''FOREWORD ...... 1... ee eee eee eee eee eee eee e eens ili EXECUTIVE SUMMARY ........ 0... cee eee ee eee eee ee eee eee ee eee vii INTRODUCTION .... 1 cece eee eee eee eee e eee e ee en tees 1 Nature of the Problem ..... 0... cece cece ee cece ee ee teen eee ees 2 Schizophrenia ......... cence eee eee cece eee eee nett eens 2 Major Mood Disorders ....... 0. ccc ccc ect eee ee eee eee e een ee eees 2 Other Severe Conditions ........... eee eee ee eee eee cent eee ne es 3 History, Purpose, and Scope of This Report .... 0.6... cee cee eee eee eee eens 4 CLINICAL SERVICES RESEARCH: ENHANCING THE REAL-WORLD APPLICATION OF CLINICAL SCIENCE ....... 0. ce cee cece eee eee eee ences 9 Characteristics of Mentally Ill People .. 1... . cece cc ccc eee teenies 9 Epidemiology and Service Settings 0.0.0... ccc cece cee eee eee teens 10 Impairments of Physical and Psychosocial Functioning .............00005 12 Family Matters: Problems and Resources ....... 0.00: eee cece cece ences 12 Assessment Research ..... 0... cece eee een en ee ence ence ene n ence ens 13 Making a Diagnosis and Measuring Severity and Disability .............. 14 Assessing Physical Health Status ....... ccc cece cee eee eee eee 14 Measuring the Quality of Life... 1... eee eee eee eee eee eee 15 Understanding the Family’s Burden ....... 0... cc cece ee eee eee e eens 15 Determining Rehabilitation Status 2... 0... ccc ccc cece eee eee 16 Treatment: Extending Clinical Research... 0... 0... cc cece cece eee teen nee 17 Types of Treatment ... 0... . cece cece e eee eee eens 17 Treatment Settings 20... .. cece ccc ee eee ee eee eee nent n eens 19 Integration, Continuity, and Quality of Care 1... ... cece cece eee ee 20 Special Populations, Special Treatment Issues ......... 0.0.0.0 e eee eee 21 Rehabilitation: The Road Back .... 0.0... ccc cece eee eee eee eee eee 21 Social Skills Training ..... 0... cece ccc eee een teens 22 Vocational Rehabilitation 2.0... cc cece cee eee eee eee 22 Independent Living ......... cee cee cee eee teen eee eens 23 Minority and Cross-Cultural Issues 2... 0... cece cee eee eee ee eens 24 Consumer and Family Perspectives ...... 0... 0c cece eee eee eee eee eee 24 Habilitation Services 1... . cece eee eee eee eee ens 25 Outcome Research: The Effects of Caring ...... 0... 0c cece eee eee ee eee 25 Clinical Domain 1.1... ... eee cece ee eee eee eee een een eens 26 Rehabilitative Domain 2... 0.0... cece ccc ee ee eee eee eee 27 Humanitarian Domain .... 1... eee eee eee ene ee 27 Public Welfare Domain ....... 0... cece cece eee eee ene e nen 28 General Recommendations ....... 0... cece eee eee eee eee eee eee 28 ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS “k SERVICE SYSTEMS RESEARCH: IMPROVING THE ORGANIZATION AND FINANCING OF CARE ....... 0... cece cee een eee eee e eee eens ¢ Improving Service Systems at the Local Level .......... 0... cece eee eee eee Identifying the Nature and Scope of Local Needs ............. 0.0. e eee Matching Local Services to Needs ....... 0. ccc cece cece eee eee eens * The Structure of Care: Improving Service System Organization ............... Integration of Care: Reaching the Consumer .......... 0000 cece eee eens Using New Concepts and Methods in Organizational Research............ * The Allocation of Financial Resources ..... 0... 0c ccc cece eee LewabTasties oo. icc cee cee eet ce hee e sede o veer bape amigas tie The Role of the Criminal Justice System ....... 0.6... cece eee ee eee Persuasion, Coercion, and Dangerous Behavior ........... 00.000 eee eeee The Law as a Help or Hindrance .... 1... eee ee ee ees ‘ Human Resource Development ......... 0... cece cece ce eee teen eee Overcoming Stigma .......... cece cece ee eee ete teen ees RESEARCH RESOURCES 2.0... cc cece ccc ew eee steers eee n ec ee eeevorbee van Forging Administrative and Scientific Links ........ 0... cece eee eee eee Relationship to Administrators ..... 0... cece cee eee eee ee eens Relationship to Health-Policy Research ......... 0. cece cece eee eee eee Relationship to Clinical Care 2... 0... cee cece eee eens Research Strategies 0c ee ce eee ee OR Es peed eee sete evewRees Formative Research Demonstrations ....... 0... sce cece eee ee ee eens Controlled Setvices Trials... 0.0. cc ke ee veces ete bebe ebenes Modeling Studies of Service Systems .......... 0.0 cece eee eee eee Uncharted Approaches (000000. i ce Se etter cece eds e been eteped Research Management and Leadership ......... 0.0... cece eee ee eee eee ee Mental Health Services Research Centers ......... 0... cee eee eee eee Improved Data Bases and Research Methods ......... 0.0... 0c eee eeueae Targeting Reseateh Priotities 2... 000 ii OG oes Oe a cas Leadership Issues ... 1.0... cece cee eee eee een n eens Seriously Mentally Ill Persons As Research Subjects ...............00005 Research Personnel and Careers’... 1... ccc tee eee deessgeveteeset Recruitment Incentives ....... 66 ccc ce cee vee bebe eweesoetteedeas CAtCOT BUUCHTE oe. ee haere deme ns a bp bas wn eel as Lae Strategies for Implementation ....... 0.0... cece eee eee eens The Dissemination of Research ........ 0... cece ee cece ence nents PROSEGPCHOTS ok Waals ce en ce eden eee vane caste en euva tees Clinicians. 2 ec et eee tees et eee cepa cbenet caw eee ed TRG PUG oi on 6 cognac eke ve wee Te CEA pak 8 8m we oe Cow eH Administrative Staff and Policy-Makers ....... 0... cece cece eee een eee PEA ose ee PBs es oo os viele Vesta FSM OS BU ek Hees Cus Cette BUDGET RECOMMENDATIONS ........ 0... cece cee eens ACKNOWLEDGMENTS: 00.0.0... eee ce ee epic NG SE eae ke es vi ''Executive Summary Dramatic progress in clinical and basic research over the past two decades has led to advances in diagnosis and treatment of mental disorders. As in the rest of health care, though, this knowledge base may not be well used, and many questions about how to provide the high- est quality of care are not yet answered. For people with severe, persistent, disabling mental disorders, this situation means that an individual diagnosis may be in error, a treatment plan may be inadequate or ineffective, essential services may not be available, and life consists of a lonely struggle to overcome not only the despair of illness but the confusing, fragmented maze of bureaucracy created by a wide range of human service providers and agencies. With any illness, but especially with these disorders that endure and disable people, pro- viding the right medication is essential, but not enough. A full range of services attending to rehabilitation, independent living, and enhanced quality of life is needed. Finding ways to improve the standard of care and ways to provide it through better organization and financing of services are compelling public health needs. This plan is based on a firm belief that the quality of life of people with severe mental disorders can be improved by making the deliv- ery of services an object of rigorous scientific inquiry to determine what works, and by assur- ing that the results are applied to systems of care throughout the Nation. RECOMMENDATIONS The plan contains a systematic review of knowledge about the best ways to provide care for people with severe, persistent, disabling mental disorders, with an emphasis on finding gaps in knowledge that can be filled by careful research that answers the question: “What works, for whom, under what circumstances?” vii One focus of the report is on ways to improve the quality of care being provided. A general theme of this concern is to find better ways to integrate the goals, and lessons from past expe- rience, of consumers and family members into treatment planning. Another theme is that the population is heterogeneous, and what works in some instances may not be appropriate in others. That concern for the individual is especially important in terms of designing culturally sen- sitive treatment approaches. The priorities for research on quality of care include: Assessment—For both clinical manage- ment and rehabilitation services, accurate and comprehensive assessment of the person’s condition is important. Establish- ing an accurate diagnosis to guide treat- ment planning is only the first step; comprehensive assessment of functional impairments, impaired quality of life, and potential strengths for rehabilitation serv- ices are equally important. Treatment and rehabilitation—Better understanding of how to provide, and inte- grate into an overall plan, the various ele- ments of medication, psychosocial intervention, and rehabilitation is needed for all aspects of care. How to provide coordinated treatment and rehabilitation services, and how best to select modalities to match the client’s needs, are issues that require more systematic study. Outcome—More emphasis on measuring benefits across a full range of dimensions, including quality of life, as well as assess- ing costs in relation to outcome is essential in future research. A second focus of the report is on ways to improve the organization and financing of care; as effective services become known, it is essen- tial to ensure that they are available to the full ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS range of people who would benefit from them. identify the best strategies to reintegrate Coordination and continuity—In a frag- mented system, with multiple providers offering the range of services needed— from clinical management to rehabilitation to housing to income support—an individ- ual consumer faces a major challenge in trying to negotiate the maze of agencies and providers who are responsible for the services. Studies on better ways to provide integrated care, including changes in the system and use of case managers to coor- dinate care, need to be expanded. More generally, finding ways to recruit, train, and retain clinical manpower in the mental health system is an important task. Law and mental health—Studies of new ways to provide care to consumers, includ- ing mentally ill offenders, such as outpa- tient commitment or community alternatives to incarceration, need to be undertaken. Research on better prediction and management of violent behavior is also important, especially in the context of fam- ily and community housing. Financing—The impact of public financ- ing, including beneficiary programs like Medicaid as well as use of State expendi- tures and investment in old hospitals and other capital assets, is clear in its magni- tude, but poorly understood in terms of effects on the system and likely effects of potential changes. Private financing, through State mandates for coverage in private plans or use of new systems like Health Maintenance Organizations, has also been poorly studied. Stigma—Public attitudes may be slowly improving as a result of dramatic improvements in clinical and biological research on mental disorders, but the bur- den of living with a mental illness is always made heavier by fear and concern felt and often expressed within the community. Studying effective ways to overcome the barriers that result from stigma will help Priorities for research include: people with mental disorders into their community. A third focus of the report is on developing the research resources needed to undertake such a challenging scope of work. Capacity—Foremost among these is the need to develop skilled services research- ers of a variety of disciplines who can work collaboratively on complex, multidiscipli- nary tasks. Also important are efforts to establish more national Centers for Serv- ices Research to Improve Care for Severe Mental Disorders and to use to better advantage the mechanisms available in the Institute’s programs. For example, more vigorous use of research demonstration projects, including large-scale, multisite projects testing a common intervention under different conditions in different set- tings, would be important to develop for the most promising innovations in service delivery. Knowledge exchange—A major effort is also needed to enhance the usefulness of research knowledge once it does become available. Communicating with service providers and policymakers must go beyond the normal scientific practice of publishing in peer-reviewed journals, and the Institute needs to help the field develop more effective ways of making research findings accessible and applicable in real- world settings. IMPLEMENTING THE PLAN One scholar who has examined the barriers to improving care of people with mental illness over the past two centuries has identified four problems that still hamper public health efforts today. Three of them are addressed by the plan itself: - The heterogeneity of mental illness - The emotions stirred by mental illness - The insufficient use of science Vill ''EXECUTIVE SUMMARY A fourth barrier remains; it is “extensiveness” or “too many goals and too few priorities.” To address this fourth problem, the National Advisory Mental Health Council has adopted a strategy of funding the initiatives called for in this plan, with an early priority on strengthening the areas that are weakest, especially those that may lead to promising innovations in service delivery. This recommendation for future ix spending is contained in the first appendix and calls for increasing expenditures from the Fiscal Year (FY) 1990 level of $47 million to $90 million in FY 1992 and $369 million by FY 1997. As part of the effort to expand these research efforts, the National Advisory Council has con- vened an Implementation Advisory Group to assist in setting priorities for future years and monitoring progress achieved under the plan. ''''Introduction Dennis was apprehended by police inside a fast-food restaurant. He had been screaming and throwing tomatoes from the salad bar after he was unable to pay for his order and was asked to leave. The police officers could not calm him, and they felt he was talking in a confusing way about being followed and tortured. After being seen in an emergency room, Dennis was admitted to a public mental hospital. His delusions and auditory hallucinations seemed to respond to medication, and he became cooperative in talking about himself and his treatment history. The hospital staff learned that he had no home or job, but they saw no need to contact his family in California. He was discharged with a prescription, an address for a city shelter, and an appointment slip indicating a time the following week that someone at a nearby clinic could see him. A nurse loaned him money for bus fare, but he never made any of those contacts. There is no further information about him until one day about 5 weeks later; police in an Eastern city called his parents to say Dennis had been killed the night before when he walked in front of a truck on an interstate highway. Paul is a 20-year-old, lost in the darkest aspects of his own mind. For the past year, his behavior has turned increasingly erratic. Lately, he has begun to lock himself in his room for days on end, where he writes unintelligible notes in a strange code, dropping them from his window into the yard below. Unkempt, bundled in three sweaters, he recently emerged from his seclusion to announce that the end of the world had come, and that God could be found at the corner store. One day, when he ran from his home naked into the oncoming traffic, he was arrested by the police and taken to the local mental health center. Following a period of hospital-based intensive treatment with drugs and psychotherapy, Paul was pro- vided with a comprehensive program of community care, involving his family as well. He was assigned a community-based case coordinator who will be available around the clock to help with crises, as well as with more predictable difficulties coping with various bureaucracies providing support. He will have an opportu- nity to resume his training to be a mechanic. His living arrange- ments, in a supervised group home, appear to be secure and congenial. His medical, psychological, social, and vocational needs promise to be well met. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS hese two episodes, whose details have been changed slightly to preserve con- fidentiality, demonstrate the huge gap between the worst and best care avail- able today. It would be a mistake to imagine that the second scenario is representative of the state of mental health services generally available today; rather it indicates what can be done based on what we know so far. At every step, from the initial assessment through reintegration into the community, an intolerable breach often remains between the wound and the healing. Countless victims of mental illness, languishing at home, in run-down hotels, or on the heating grates of a city’s downtown streets, testify to the gap that still exists in filling the Nation’s urgent mental health needs. The actions of our forebears toward the men- tally ill were often based on unfounded theories and misguided convictions, with results that were contrary to the best interests of either the victims or those around them. Today our fund of knowledge is considerably greater, but still inadequate for the task at hand. Knowing how to best care for those consumed by mental ill- ness is possible only from a base of knowledge generated through research and from tested ways to put that knowledge into systematic practice. This report is intended to help realize these objectives. NATURE OF THE PROBLEM A host of abnormal psychological conditions can be severe, persistent, and disabling. To address the most acute public health problem, this report focuses on the central core of these conditions: schizophrenia, major depressive disorders, and a varied group of equally serious pathological states that either incorporate or mimic certain elements of both. Schizophrenia In its various forms, schizophrenia comprises the most prevalent, malignant, and baffling of all the major mental illnesses. More than 2 million Americans will be stricken by the disor- der in the course of their lives. Its impact is profound, attacking in its victims the traits and talents—intellectual, emotional, social—that allow us to function in the varied contexts of our lives. To begin with, the individual with schizo- phrenia suffers from disordered thinking —evi- denced, for example, by incoherent speech and rapid shifts of ideas from one topic to a totally unrelated one. Often there are delusions, or false and bizarre beliefs, such as the conviction that other people can hear their thoughts, that they no longer exist, or that their heads and arms are missing. Second, the disease is marked by per- ceptual difficulties—for example, the inability to understand others’ speech, to identify people, to gauge the passage of time, or to know what is real and what is not. Frequently there are hallucinations, or false sensory experiences— seeing things, hearing things—that have a com- -pelling sense of reality. And finally, the schizophrenia victim displays emotional distur- bances, including the absence of any feeling, a sense of remoteness, and inappropriate reac- tions such as laughing in the face of a sad episode. Most investigators have concluded that schizophrenia is not just a single disturbance, but that it is made up of many types that have been grouped together merely because they exhibit certain resemblances. Moreover, an increasing number of studies suggest that these different types have different causes, manifes- tations, and responses to treatment. Although genetic factors seem to set the stage for schizo- phrenia, the specific biological vulnerability is not yet known. Major Mood Disorders All of us know from personal experience that events—both major and minor—can affect our mood. There are times when life is marred by grief—when a friend dies, a treasured relation- ship breaks up, or hard work ends in failure. For most people, the resulting feelings usually mir- ror the significance of the event. The loss of a favorite book and the loss of a child normally do not evoke the same dip in mood. Moreover, ''INTRODUCTION no matter how painful the stress or loss, we can expect after a reasonable period to bounce back from the blues and feel like our old self again. Many people, however, suffer from a clinical, or severe, depression—a plunge in mood so steep and prolonged that it ultimately over- whelms the entire personality and causes many of life’s functions to grind to a halt. Severely depressed people experience not only unrelent- ing sadness but intense helplessness and hope- lessness as well. They lose all semblance of self-esteem and are filled instead with grinding self-recriminations and guilt. Severe depression aborts the capacity for both work and play. Even routine acts of thinking and speaking are slowed to a halt, and delusions and hallucinations may fill the mind’s void. Depression causes incapacitating physical problems as well. Sleep is disturbed—espe- cially by early morning awakenings—and the appetite for food and sex tends to diminish or disappear. Depressed people may also complain of poor digestion, heart palpitations, headache, visual disturbances, or dizziness. Although the most prominent signs of depression may differ from one person to another, all severely depressed people share an inability to experi- ence any pleasure whatsoever, or to imagine that they ever will again. Those in the grip of a depressive episode feel hopeless about virtually everything, and with the outlook apparently so dark, about 15 percent of depressed people eventually choose self-destruction as a way out of their misery. When people suffer recurrent episodes of depression like the one just described, the dis- order is called unipolar depression. But there is another severe mood disorder—known as bipo- lar depression, or manic-depressive illness—in which the lows alternate with exaggerated highs. For those beset by this illness, the emo- tional pendulum swings wildly from deep mel- ancholy to intense excitement, at first with long intervals in between, but later with frequent and abrupt shifts from high to low. In the manic phase, people with manic- depressive illness tend to be talkative, restless, boastful, aggressive, and often destructive. They develop a false feeling of intense well- being and even ecstasy; sexual and moral inhi- bitions disappear, and life is one uninterrupted high. Their thoughts become disconnected, jumping from one idea to another without any apparent logic. Sometimes the condition resembles schizophrenia, and indeed, some manic-depressives are mistakenly diagnosed as schizophrenics. Soon, however, most manic individuals plummet back to the depressed phase, becoming so gloomy and hopeless that they are virtually immobilized. As with schizophrenia, evidence suggests that mood disorders have a genetic basis and that they are related to disturbances in the chem- istry of the brain. The most widely held theory is that some people are genetically vulnerable to these biochemical imbalances, which are likely to occur in response to levels of stress that other people would not find so disrupting. Other Severe Conditions In addition to the various forms of schizo- phrenia and depression, there are other, less prevalent but no less destructive forms of men- tal illness that cruelly afflict a significant num- ber of individuals. One of these, termed schizoaffective disorder, features episodes in which both schizophrenia and mood-disorder symptoms are prominent, usually simulta- neously, or at least within a few days of each other. Sometimes the abnormality of mood takes the form of manic elation, accompanied by grandiose ideas, excitement, and aggressive behavior. In other cases, schizophrenic symp- toms merge with a mood of deep depression— including such typically depressive symptoms as withdrawal, insomnia, loss of energy, loss of appetite for food and sex, impaired concentra- tion, feelings of despair, and ruminations of suicide. Another disorder, or, more accurately, group of them, is known as delusional disorders, in which persistent and unshakably entrenched delusions comprise either the sole or primary symptom. Included, for example, are delusions characterized by the conviction that other indi- viduals, groups, or the government have malev- ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS olent intentions and are “out to get me”; that one’s body is misshapen or emits a foul smell; or that one is about to take over the presidency of the United States or to be crowned as the new pope. Although the condition is viewed as dis- tinct from schizophrenia, many of the delusions are reminiscent of the kinds sometimes present in that disorder. But in contrast to schizophrenia, there is little abnormality of speech, emotion, or overall behavior. What makes delusional disor- ders such a severe condition is that the false beliefs are so omnipresent and deeply held that they distort all of life and cause the patient to become severely and chronically disabled. The distinctions among the various severe disorders just described are, in some respects, still hazy, for there is overlap among them. What they clearly share in common, however, is the destructiveness of their impact. No clinical categorizations can portray the full anguish of such conditions in human terms. These conditions can be lethal, as they lead to higher rates of suicide, and the pain of severe mental disorders compares with that of life-threatening cancer. A recent study has demonstrated that depressive conditions are even more disabling than most serious, chro- nic physical illnesses, on a par with severe cardiovascular disease. HISTORY, PURPOSE, AND SCOPE OF THIS REPORT In keeping with its scientific mission, the National Institute of Mental Health (NIMH) has consistently devoted a portion of its effort to careful studies of service delivery programs. Nearly 35 years ago, with the passage of the 1956 amendments to the National Mental Health Act, research on services formally began. Title V of that Act authorized funds to support project grants, studies, experiments, and demonstrations to improve the quality of services available to the mentally ill. In effect, Title V officially recognized what had been implicit all along—to ensure the effective deliv- ery of optimum services to the mentally ill, those services must be viewed as an important subject for formal scientific inquiry. At first, progress was slow in the services research field because of methodologic prob- lems in undertaking complex studies in real- world settings and because of significant limitations of resources and the relatively low national priority assigned to this area. Neverthe- less, like the mental health field itself, services research has made substantial progress in the recent past. While its inventory of projects has been varied—from the evaluation of existing services to the testing of innovative ap-- proaches—its underlying agenda has been con- stant: To achieve a level of cost-effective mental health care commensurate with the suffering and impairments inflicted by severe mental ill- ness. The plan embodied in this report repre- sents still another important step in the achievement of that goal. Three years ago, the NIMH National Plan for Schizophrenia Research provided a review of current basic and clinical studies of schizophre- nia and outlined the most promising research agendas to solve the enigmas of that disorder. The plan called special attention to the unmet need for determining how well day-to-day clin- ical practice in the community reflects accepted standards of care for individuals with schizo- phrenia. Thus, in 1988, the director of NIMH initiated an effort to extend the recommenda- tions of this plan for schizophrenia research to cover the growing field of research on delivery of mental health services—not only to those with schizophrenia, but those suffering other major mental illnesses as well. The result is the National Plan of Research to Improve Care for Severe Mental Disorders, which this report summarizes. Three panels of expert consultants were assembled to develop recommendations for strengthening both services research and research resources. The panelists were instructed to review and evaluate existing data and to identify the foci of greatest need and opportunity for new knowledge and new approaches in three domains: ''INTRODUCTION e The Clinical Services Research panel considered areas of immediate clinical relevance, ranging from diagnosis to out- come assessment, with a major focus on improving the quality of care and enhanc- ing the impact of services. e The Service Systems Research panel focused on studies related to the structures and processes of mental health service delivery, ranging from the organization and financing of services to legal issues and society’s attitudes toward the men- tally ill. e The Research Resources panel concen- trated its efforts on the infrastructure of the field, highlighting such concerns as personnel, leadership and coordination, and the dissemination of services research information. Although the three resulting reports of the panels are comprehensive and lengthy, the pan- elists were aware from the start that not every relevant area would be covered and that some would be dealt with only briefly. For example, the critical area of services research related to children and adolescents was specifically not addressed in view of the earlier special report on the subject by the Institute of Medicine, followed by a related plan prepared by the National Advisory Mental Health Council. Sim- ilarly, detailed consideration of issues in report- ing mental health statistics was deferred to a closely related panel engaged in examining the National Reporting Program on Mental Health Statistics. Critical areas related to mental health services for AIDS patients and for the homeless, while raised, were not covered in depth, since separate programs have been established within NIMH in the recent past to undertake systematic program development activities in these vital areas. The reader should keep in mind that the indi- vidual panel reports are richly detailed and that no relatively brief summary can pretend to exhaust the wealth of ideas and recommenda- tions embedded in them. This report focuses only on the major themes that emerged, along with highlights of specific recommendations for future research. '''' At this point in my life, I cannot imagine leading a normal life without both taking lithium and being in psychotherapy. Lithium prevents my seductive but disastrous highs, diminishes my depressions... But, ineffably, psychotherapy heals... Psychotherapy is a sanctuary, tt is a battleground... But always it is where I have believed- or have learned to believe— that I might someday be able to contend with all of this. -A patient with manic-depressive illness, quoted in Manic-Depressive Illness, by F.K. Goodwin and K.R. Jamison, Oxford University Press, 1990, p. 725. '' ''Clinical Services Research: Enhancing the Real-World Applications of Clinical Science ‘The use of antipsychotic drugs has proved to be wtal m the therapeutic regimen of schizophreme patients. . .” his conclusion, and others document- ing the tremendous progress made by clinical research in diagnosis and treatment over the past decade, appeared in A National Plan for Schizophrenia Research. They are based on a host of meticu- lous studies of patients’ responses to carefully controlled therapeutic interventions. There remains, however, a challenging issue, central to this chapter: How effectively is such knowl- edge being applied in the day-to-day care of individuals experiencing severe mental illness? Clinical services research begins where clin- ical research itself leaves off. It is concerned with the application of clinical knowledge, gained in a controlled research environment, to the larger, relatively uncontrolled environment in which the mentally ill actually function. Its goal is to improve the quality of care of every- day clinical practices so that they consistently meet existing state-of-the-art criteria. The premise of clinical services research is that the true value of clinical research, with its rigorous diagnostic and treatment data, cannot be known until answers are provided to such questions as these: How carefully are clinical assessments of patients made in everyday prac- tice—including assessments not only of psy- chological functioning, but of physical and social functioning as well? How accurately are diagnoses arrived at and later utilized in treat- ment? Are the most appropriate treatments for a given disorder, as revealed through clinical studies, actually provided to those who can profit from them? Only through answers to these and related questions can we be certain that clinical findings are, in fact, being used to assure the highest quality of care. The organization of this chapter, mirroring the series of papers prepared by the Clinical Services Research panel, spans five major ele- ments of clinical concern. The first section deals with the salient characteristics of severe mental illness, including demographics, risk factors, cultural influences, and family issues. The sec- ond section focuses on the assessment of severe mental illness not only in terms of specific diagnoses, but in the broad context of the patients’ physical, social, and vocational func- tioning. The next two sections deal with specific interventions, first of treatment, and then, equally important, of rehabilitation. The final section addresses the critical issue of out- come—how to assess the effectiveness of services. CHARACTERISTICS OF MENTALLY ILL PEOPLE Efforts to improve the quality of care avail- able to severely mentally ill people must depend on more precise information than is now avail- able about their characteristics and their envi- ronments. Such data are critical in order to ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS understand how serious mental illnesses of var- ious kinds affect various subpopulations, and, therefore, where mental health services of dif- ferent types are most critically needed. This information is required with equal urgency to gauge the outcome of service delivery efforts directed toward specific target groups. Only by knowing in considerable detail the characteris- tics of recipients of mental health services is it possible to determine whether those services have had any impact on particular groups, and if so, to what degree. Unfortunately, statistics descriptive of men- tally ill populations often tend to impersonalize the flesh-and-blood realities being cataloged. It should be made clear at the outset, therefore, that the collection and analysis of such data in no way negates the requirement to view each patient as a person and not a case. However skilled and insightful, scientists need to enrich their perspective by understanding as fully as possible what it is like to suffer mental illness, or to be a family member struggling to find help for a loved one. Indeed, implicit throughout this report is the view that clinicians and researchers must regard patients and their families as allies in the pre- scription of care, in setting service goals, and in the research enterprise itself. Epidemiology and Service Settings In an overall sense, severe mental illness is no respecter of persons. People with mental illness may be found in an elegant mansion or a decrepit prison, a modern nursing home or a wind-swept street corner. Mental disorders affect people of all ages, races, and walks of life. Exactly how many has been difficult to deter- mine, but a national survey conducted in the early 1980s gives us some estimate. The survey sampled more than 20,000 household and insti- tutional residents in 5 communities around the country, using carefully constructed interviews that permitted approximate diagnoses to be made. The results showed that about 20 percent of the U.S. population suffers from a diagnosa- ble mental disorder during a 6-month period. 10 Among the Nation’s victims of mental illness are those whose conditions are truly severe— individuals who suffer from long-term, persist- ent, and disabling disorders that have a profound impact on their everyday existence and on that of their families and communities. It can be conservatively estimated that at one time or another in their lives, at least 15 million Ameri- cans have met this painful criterion, and that from 1.7 million to 4 million Americans are now seriously mentally ill. Of these, 900,000 are resident in institutions and the rest are living, many of them homeless, in the community. These estimates, it should be noted, are now about a decade old and undoubtedly understate the actual case today. Needed for a more accu- rate accounting are not.only up-to-date studies of the epidemiology of the major mental disor- ders, but also of the epidemiology of the disabil- ities that result from them. For epidemiologic researchers, it is even more challenging to assess the disability related to a disorder than simply the disorder itself. To date, the mental health field is without an accurate portrait of the nature and extent of impairment that severe mental illness imposes on its victims. Nevertheless, closer study of the mentally ill suggests the presence of important differences among various population subgroups. Defining these differences and understanding their likely origins are essential in order to appreciate who among us is most at risk and to plan service programs adequate to the challenge at hand. Such planning is dependent as well on a fuller understanding than is now available of the nat- ural course of severe mental illnesses. e Well-targeted epidemiologic studies of the severe, persistent, disabling mental disorders should be conducted to deter- mine prevalence as well as to identify variations in rates that could lead to inves- tigation of risk factors for these condi- tions. Special emphasis should be placed on occurrence of new cases, to aid in studying risk factors, and on characteriza- tion of more persistent cases, to aid in examining the functioning (and non- ''CLINICAL SERVICES RESEARCH functioning) of mental health and other services for this population. In these studies, it is especially important to assess the impairment and resultant disability associated with these condi- tions. It is known that severe mental ill- ness ushers in a broad array of behavioral disabilities, but their nature and scope remain ill-defined. Epidemiologic studies of both treated and untreated populations are urgently needed to assess the types, durations, and patterns of disability; their mutability over time; and the role that socioeconomic and cultural influences play in their development and course. Severe mental disorders can disable a per- son for a lifetime, continuously or inter- mittently. Yet in the case of every such disorder, some individuals improve dra- matically while others languish. Except to some extent for schizophrenia, little is known about the symptoms and patient characteristics that are likely to lead to good or poor outcomes. More must be learned, therefore, about the natural his- tory of all the major mental disorders. The information gained from long-term, natu- ral-history studies will enable clinicians to define the kinds of care that are required as well as the anticipated effects of treatment interventions at various stages of the illness. Current data suggest that, controlling for socioeconomic class, schizophrenia occurs at an equal rate among members of various ethnic and racial groups. How- ever, further intensive study of the matter is essential, since group differences may provide clues to etiology and the effects of existing services. Available informa- tion for blacks and Hispanics is based on limited samples and is, therefore, suspect. Lacking also are reliable data for Central American refugees as well as for the large and diverse population of Americans of Asian origin, Native Americans, and other minority groups. 11 Schizophrenia is found among the poor in disproportionate numbers. Indeed, the odds of having this disorder are eight times higher in the lowest socioeconomic status group than in the highest. On the one hand, it is possible that poverty is a result of the illness for when it strikes, it tends to destroy the victim’s chances of earning a living and of maintaining a decent standard of living. But on the other hand, it is not unlikely that environmental factors among the poor raise the biologi- cal risk of developing schizophrenia. For example, programs to improve prenatal and infant care might be found to curtail the atypically high incidence of schizo- phrenia among the destitute. Only care- fully crafted studies will clarify the importance of such factors and their rele- vance to planning services. Substance abuse often occurs along with severe mental disorder, with grievous effects. The overlap has been found, for example, in nearly a third of all those suffering from depression. Research is needed to better define the scope of this problem and thus to more wisely plan. appropriate service interventions. Both prisons and nursing homes house large numbers of individuals with histo- ries of schizophrenia and bipolar disorder. It is important to define the needs for services of those suffering severe mental illness in institutions other than mental hospitals, paying particular attention to appropriateness, effectiveness, and conti- nuity of care. The men and women who live on the streets or in shelters for the homeless dis- play a much higher rate of profound psy- chiatric disability than do those in the population at large. The newly homeless, for example, have atypically high rates of major depression, perhaps as a response to their plight. In contrast, schizophrenia is common among the long-term home- less, suggesting that this disease may con- ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS tribute to homelessness. In any case, research efforts must focus on models of care for the homeless who are severely mentally ill, with emphasis on continuity of care over the long term. The aging process itself can produce a new set of problems. The aging process adds physical disabilities to the woes of the severely mentally ill person, and the ability to function will diminish even fur- ther. In addition, severely mentally ill people are often able to operate in the community only with the social support they receive from relatives. As these rel- atives themselves age, suffer poor health, and die, they leave the mentally ill bereft of critically needed support. Researchers must focus more intensively on these needs related to aging of the individual, as well as aging caretakers in the family. Impairments of Physical and Psychosocial Functioning The fabric of everyday life is woven out of familiar tasks and events—going to work, cleaning one’s apartment, seeing a movie with a friend, cooking dinner, planning a weekend at the beach. For most of us, such routines help set a basic rhythm in our lives, but for those suffer- ing a severe mental disorder, that rhythm is shattered. Daily tasks and ordinary human inter- actions become as hard to negotiate as an obsta- cle course, and the bedrock of everyday existence turns to quicksand. Indeed impairments of daily functioning rank among the major problems facing the severely mentally ill. e Impairments of daily living are often compounded by physical incapacities among the severely mentally ill, particu- larly if they are also substance abusers. The inability to function is exacerbated by such conditions as diabetes, cardiovascu- lar disease, arthritis, and chronic lung dis- eases. Moreover, serious physical illness may either mask or reinforce underlying 12 symptoms of severe mental disorders, making the psychiatric condition harder to evaluate and treat. Researchers must, therefore, probe the parameters of major physical illness among the severely men- tally ill and consider how health problems complicate their everyday existence and their resulting service needs. Studies are needed to define the capacities of the severely mentally ill to practice the ordinary personal techniques of preven- tive medicine that would protect and pro- mote their well-being. This means studies of ways to promote good health habits, encourage early screening to detect dis- ease, and minimize limitations on func- tioning caused by physical disease. A major priority should be assigned to studies of the risk of acquired immuno- deficiency syndrome (AIDS) in this pop- ulation, either as a result of group living patterns or of difficulties in understanding and practicing appropriate sexual safe- guards. Family Matters: Problems and Resources Families of severely mentally ill people shoulder staggering financial and emotional burdens. Sixty-five percent of discharged psy- chiatric inpatients, approximately 1.5 million per year, return home to live with family mem- bers. Largely as a result of cost, many of these patients return home earlier than they otherwise might, still severely disabled by psychiatric symptoms. As a result, the stress and disorgani- zation of family life often becomes overwhelm- ing. Indeed, probably no form of illness so completely destroys the well-being of the family. e Researchers must carefully assess the ramifications of family involvement in the care of a mentally ill member— including the characteristics and condi- tions of caregiving families; the degree ''CLINICAL SERVICES RESEARCH and varieties of family stress; the effec- tiveness of various coping and adaptation patterns; the timing and extent of care- giver burnout; and the impact of various kinds of respite care for family members. A notable resource development for fam- ilies was the formation in 1979 of a national grassroots network, the National Alliance for the Mentally Il] (NAMI). This organization serves in an advocacy role in behalf of mentally ill persons and their families, bringing problems and issues to the attention of local, State, and Federal Governments. NAMI has become an effective champion of research and of improvements in the systems intended to serve the needs of mentally ill citizens. Among the critical areas highlighted by NAMI is research designed to identify ways to help patients readjust to the com- munity within the least restrictive envi- ronment possible and to prevent relapse through early intervention. NAMI families have also advocated important studies that would enable fam- ilies to function more effectively and with less turmoil. Such studies would provide effective education in techniques for deal- ing with mentally ill persons without suc- cumbing to overwhelming anxiety; motivating the patient to become more self-sufficient; and understanding and communicating appropriate expectations. An essential need is for research on the long-term effectiveness of such family education programs—both in helping the patient and in reducing the family’s burden. For generations, families with mentally ill relatives have dealt with the problems of violence toward family members, exacer- bated now as a result of substance abuse by seriously mentally ill people. Investi- gators must focus on the unpredictable, frightening, and violent behavior that patients may exhibit toward family mem- bers, with the goal of developing more 13 efficient criteria for predicting such behavior and more objective ways to manage and prevent it. Such studies must place a high priority on meeting the needs of families for early education, preven- tion, and intervention. In this connection, attention should be given to identifying techniques of family adaptation that have proved effective. Dealing with mental illness is expensive. Families become frustrated and angry as their savings dwindle, often with meager results. A guide on how to obtain the most effective services even with limited per- sonal resources would be a welcome aid. Such a guide—based on evaluative re- search, not on opinion—could help fami- lies make informed decisions about more selective use of mental health services. ASSESSMENT RESEARCH Marcia, a 38-year-old waitress in a small midwestern town, has been fired from her job at the local diner. A few months ago, she began missing work for days on end, or suddenly disappearing in the middle of the day. Marcia’s husband, an unemployed con- struction worker, says that his wife has been “upset” over family problems. He reports to friends that she has spells of weeping, often without provocation; begins wandering through the house before dawn each day, moaning and wringing her hands in agitation; and is plagued by feelings of guilt so punishing she is sure that God is about to take her life. Some days she does not leave her bed and is virtually mute. Yesterday, she spoke only to her frightened and confused 10-year-old son, whispering to him that she will soon be dead, “with the help of Daddy’s shot- gun.” Disturbed and disheveled, accompanied by her husband, Marcia sits now in the waiting room of a mental health clinic 30 miles from ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS home. A psychologist will soon appear and ask her to come into the office—and so will begin the first step in the process of attempting to heal Marcia and restore her mental health. That first step is to assess what is actually wrong with Marcia, how wrong, and what might possibly be done to help her. Although such a process of assessment seems logical and straightforward enough, the truth is that the mental health field is still without an adequate arsenal of instruments and techniques to fully accomplish the task. That gap needs to be filled. No aspect of clinical services—or of research designed to improve such services—can pros- per without the availability of meaningful and valid techniques for assessing the status of men- tally ill patients, not only in purely clinical terms but also in terms of their everyday functioning in the real world and their strengths on which rehabilitation can build. Small wonder that researchers have spent a great deal of time, effort, and ingenuity in the creation and evaluation of assessment instru- ments. The measurement of human misery is no simple matter. Needed are the means to accu- rately diagnose the psychiatric problem and the degree of psychopathology —that is, to establish the client’s need for services. But required, too, are ways to assess general health status and physical functioning, the quality of the patient’s life, the nature of the family’s burden, and the patient’s rehabilitation potential and progress. The delivery of meaningful services depends on the availability of a continuing portrait contain- ing all these elements in the life of Marcia—and of the millions of others whose lives, like hers, threaten to be destroyed by grave mental illness. Making a Diagnosis and Measuring Severity and Disability Diagnostic accuracy is important not only to provide appropriate clinical interventions, but for administrative purposes as well. In many public mental health care settings, eligibility for services is determined in part by diagnosis. Moreover, little research progress is possible without the capacity to categorize mentally ill subjects in accurate and meaningful terms. For 14 all the same reasons—clinical, administrative, scientific—it is equally critical that the mental health field develop an improved capacity to determine, for any given diagnosis, the severity of symptoms and degree of disability suffered by those who are mentally ill. e It is essential to explore the best ways to make an accurate diagnosis. In particular, research needs to examine what sources of information—for example, client self- report, medical records, family members, friends—can best be used to obtain valid data regarding the symptoms and behav- iors of mentally ill individuals. It is important, too, to determine how the util- ity and validity of such information can be enhanced and how to integrate these perspectives into the assessment process. Some progress has been made in develop- ing standard criteria for assigning diagno- ses to subjects in research studies, at least in certain relatively well-defined disor- ders such as manic-depressive illness. But it is still unclear to what extent personal, cultural, and environmental factors may affect their utility. It is important, there- fore, to ascertain the generalizability of diagnostic assessment techniques across major social and cultural groups and spe- cial populations: men compared to women, underserved ethnic minorities compared to majority populations, and those in institutions compared to the homeless. Assessing Physical Health Status In the case of general health services, there already exist standardized measures of health status whose validity and practical utility have been extensively assessed. These are routinely used as a means for evaluating the effectiveness of health care delivery systems. But such meas- ures, developed for nonpsychiatric populations, have not been extensively tested for use with persons who are severely mentally ill. That void needs to be filled. ''CLINICAL SERVICES RESEARCH Studies of the severely mentally ill popu- lation have rarely assessed the degree to which these individuals also suffer from other, physical illnesses—much less assessed them with the rigor typical in research on general health services. There are indications that such concurrent con- ditions are common. Researchers must carefully assess the implications of such conditions—especially the degree to which they interfere with treatment and rehabilitation efforts and the danger that the presence of a mental disorder may create difficulties in the recognition and management of medical disorders. The domains of health currently being assessed typically include general health perceptions; physical functioning, or the capacity to perform exercise and physical activities necessary for daily living; role functioning, or the ability to fulfill major life tasks such as jobs, school, and house- work; social functioning, or the ability to maintain and develop relationships with friends and family members; and a variety of other dimensions, such as extent of bodily pain, quality of sleep, and level of energy and fatigue. Theoretically, these domains may all be viewed as relevant to assessing the health status of persons with severe mental illness. But valid concerns remain about the sensitivity of existing measures, developed for general or med- ically ill populations, when used with mentally ill patients, whose overall health status and functioning are often extremely poor. The utility of existing measures, therefore, needs to be carefully explored, especially with special populations like minorities or the homeless. Measuring the Quality of Life Beyond the measurement of both psycholog- ical and medical pathology, there remains an even more elusive variable: the quality of the patient’s life. The concept of quality of life has become an increasingly important component 15 of research on persons with severe mental ill- ness. It encompasses such factors as access to resources and opportunities; fulfillment of life’s roles; and degree of well-being or life satisfac- tion. With such factors in mind, the patient’s quality of life may be assessed in a variety of contexts—for example, with regard to housing, finances, work, family and social relations, and leisure activities. Studies are needed to determine the rela- tionship between quality of life and both psychological and physical well-being. Researchers should explore how the reli- ability and validity of quality-of-life measures are affected by social class, eth- nic and racial group membership, and housing status. Attention should be given to determining the stability of quality-of-life measures over time and their sensitivity to major shifts in life status. Understanding the Family’s Burden Because of the gaps in existing mental health services, individuals with severe mental disor- ders must often depend on the care provided by family members. As many as two-thirds of chronically mentally ill persons live with their families, who become service providers by default. The resulting emotional and financial burdens are often enormous. It is far from clear how to assess the extent of the family’s burden and of the risk of breakdown in the family’s supports. Such assessments, however, are criti- cal—not only to understand how to respond in individual clinical situations, but also to conduct research aimed at identifying and strengthening appropriate means for supporting families who must face the challenge of caring for a mentally ill member. e Research is needed to identify those aspects of the family’s burdensome expe- rience that are most critical to measure, in terms of their impact on both family mem- bers and on the course of the patient’s mental illness. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS e To date, measures of family burden have not emphasized positive aspects of the family experience, or the potential contri- butions of families to the quality of life of the member. Studies are needed to opera- tionally define the role of the family as a rewarding and healing source of support and care and to test ways to maximize that positive role. Studies are required to clarify how meas- ures of family burden may be used in planning services. For example, how should information on family burden be applied in formulating a treatment plan? Determining Rehabilitation Status Disability is a hallmark of severe mental ill- ness, and the focus of rehabilitation efforts is, to quote Webster, “the restoration of the individual’s former capacity.” The goal of reha- bilitation is to provide ways for teaching indi- viduals disabled by mental illness to work and live independently, to overcome blocks in both opportunity and motivation, and to follow regi- mens of living likely to maintain or restore the highest possible level of well-being. Because severe and disabling mental illness often strikes early in life, an additional goal is to provide patients with skills they had never had the opportunity to acquire and with compensatory measures to overcome deficits. There is an established mental health litera- ture on the assessment of functioning and needs for services from various rehabilitation perspec- tives. The specific components addressed are social skills, vocational status, and independent living skills. Social skills. Considerable diversity exists in the conceptualization and definition of social skills for persons with severe mental illness. Indeed, there is no empirically established list of the social skills thought to be required for daily functioning. While various authors have recommended that studies assess motor, physi- ologic, and cognitive aspects of social skills, 16 such a comprehensive assessment has seldom been attained. It is recommended that future research on assessment of social skills examine the relationships among components of social skills and move toward a standard- ized operational definition. Assessment techniques have included self-report questionnaires, structured interviews, naturalistic observations, and role-play. Rigorous studies of the psycho- metric properties of alternative social skills assessment techniques should be conducted so that their relative advan- tages and disadvantages for particular research applications can be better under- stood. Vocational status. There is little research on the specific vocational impairments of severely mentally ill persons or on the need for specific types of vocational rehabilitation services. In general, relatively few of the measures that have been developed are in widespread use, and their reliability and validity among persons with severe mental illness have not been rigorously studied. Researchers should work toward the goals of providing a standardized opera- tional definition of vocational status and skills and of developing suitable methods of assessing vocational skills in individu- als with severe mental disorders. e Measures of vocational status need to be developed that take into account the job market (e.g., unemployment rate) in the community, especially for assessment of severely mentally ill individuals from minority backgrounds. Independent living skills. The rehabilitation literature focuses on such components of inde- pendent living as community tenure—that is, the amount of time spent in the community versus institutions; degree of independence or extent of financial assistance required; the abil- ity to perform basic activities of living such as ''CLINICAL SERVICES RESEARCH cooking, cleaning, shopping, and budgeting; and degree of community participation—for example, friendship and support networks and leisure activities. Additional studies are needed to deter- mine which aspects of independent living skills are most critical to assess. It is important, too, to evaluate the extent to which the status of the severely men- tally ill person is a result of the environ- ment—including residential options available—versus the client’s limitations and strengths. Studies are needed to define what residen- tial arrangements are appropriate for patients who differ in their levels of inde- pendent living skills. TREATMENT: EXTENDING CLINICAL RESEARCH A considerable amount of effort has been expended in an attempt to improve the efficacy of treatments available to the mentally ill. Most of this effort has been devoted to clinical research itself—that is, to painstaking, carefully controlled studies in which specific forms of intervention such as psychotherapy or drugs are applied and evaluated. This line of research needs to be extended to include studies of the real-life factors that influ- ence the impact of such interventions. Required are programs of research that focus not on the efficacy of treatments applied in an experimen- tal setting, but on the effectiveness of complex service interventions delivered in a variety of settings, from hospitals to homes. For example: Do providers actually use the most efficacious treatments? If so, for which patients? Under which circumstances? With what results? If not, why not? What can be done to enhance the transfer of new treatment modalities and tech- nologies into clinical practice? Can practice guidelines and standards of treatment be estab- lished for these patients, and can these guide- lines actually improve care? These are just some 17 of the questions that challenge the ingenuity of investigators in the field. The field is beset by considerable problems. Foremost is the limited knowledge concerning which treatments work and which severely mentally ill patients benefit in various circum- stances. It is often hard to determine whether a patient has improved at all, much less to what extent. Often, different opinions are held by the therapist, the patient, and outside observers such as the client’s family and friends. Even when the efficacy of individual clinical modalities is known, empirical information is usually lacking about how to combine or sequence these modal- ities to achieve optimal outcomes. This picture is further complicated by the heterogeneity of the population, of potential providers and set- tings for treatment delivery, and of the relevant outcomes. In this section, recommendations for research are provided in four related areas. They concern types of treatment; the settings in which such treatments are applied; the integration, continu- ity, and quality of care; and the treatment of special population subgroups. Types of Treatment In the last few decades, drug treatment has come to the fore as an effective way to treat schizophrenia, depression, and mania. Yet psy- chotherapy and sociotherapies also continue to be important in treating severe mental illness. Moreover, broader aspects of care—including programs of crisis intervention, self-help serv- ices, peer support, and educational programs for consumers and families—are also often part of the treatment agenda. Often, studies of the latter types of interventions have been less well con- trolled than formal clinical trials of a new med- ication. Yet such studies need to follow the same scientific principles—including, for example, standardization of interventions and use of appropriate sampling techniques and rigorous experimental design. e All of the available drugs used in the treatment of severe mental illnesses pro- duce major side effects. Partly for this ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS reason, many patients do not take their medication regularly. Experiments should continue on noncontinuous and low-dose strategies as a way to reduce side effects and increase patient accep- tance. Unfortunately, many people with severe mental disorders do not respond to the drug treatments currently available. Fur- thermore, the neuroleptic drugs pre- scribed for schizophrenia have little effect on the disorder’s so-called negative symptoms—withdrawal and apathy. New drugs that hold promise for people suffer- ing from severe mental disorders are now being tested. Some of these drugs may help patients who cannot benefit from currently available medication; others may have fewer side effects or prove more effective in reducing the negative symp- toms of schizophrenia. Testing of new and better drugs will continue, but, in addition, researchers should test ways to transfer the newer drugs into clinical prac- tice safely, economically, and efficiently. The most difficult challenge to research comes from promising new drugs that are scarce because of their expense. For example, clozapine has proven dramati- cally effective for some schizophrenia patients who do not respond to treatment with other drugs. Yet the cost of the drug in the first year of its availability included a large fee for mandatory monitoring of side effects, as these can be life threaten- ing. Because of the added cost of the monitoring, it appears that clozapine has not been used by many who need it most. These include patients at large State men- tal hospitals, those who are dependent on Medicaid because they are too disabled to work, and those whose unremitting symp- toms have depleted family savings. These circumstances make it difficult to know how to ration clozapine or what consti- tutes a fair trial of the medication for those people who seem not to respond early. For these reasons, the problem of assuring 18 access to clozapine for those who may benefit from it has become an urgent pub- lic health issue, and studies addressed to it and to alternative models of delivery are essential. In addition, studies of the cost- effectiveness of such new medications are important in helping policymakers esti- mate the cost-benefit balance, and studies of how to integrate such new agents with other important treatment approaches such as rehabilitation counseling are essential. Electroconvulsive therapy (ECT) contin- ues to be an effective treatment for severe depression and, at times, for acute manic states that do not respond rapidly enough to neuroleptic drugs. Because of widely publicized past abuses, ECT remains con- troversial, despite clear standards of care and a record of effectiveness. Research is needed to clarify the specific indications for and risks of ECT, to delineate its cur- rent use in treatment, and to develop ways to educate consumers, families, and the public. An important goal for research is to assess the role of psychotherapy in conjunction with drug therapy, rehabilitation, and other approaches. How does the use of psychotherapy fit in with the growing evi- dence that schizophrenia is essentially biological in origin? One answer is to develop psychotherapeutic approaches that recognize the biological roots of the disorder. Recently, for example, re- searchers have done this by incorporating innovative cognitive techniques into psy- chotherapy. One researcher uses group therapy to help patients with schizophre- nia master the various steps of processing information; another uses psychotherapy to remedy inherent neurological deficits and sensitivity to stress. However, re- search is needed to test the effectiveness of these newer psychotherapies. There is some evidence that good social support lessens psychological distress for ''CLINICAL SERVICES RESEARCH severely mentally ill people. Yet peer sup- port has been studied only in combination with other assistance, such as family sup- port. If peer support is indeed found help- ful in severe mental illness, there then remains the question of how to encourage its development. Self-help groups offer one type of peer support, but these are almost totally absent among severely mentally ill patients. Studies are needed to explain this gap and to identify ways to fill it with the most effective self-help and peer support approaches. e In the past decade, a variety of family interventions have come to the fore offer- ing families support, information, practi- cal advice, and training in coping with the challenges that arise when a family mem- ber suffers severe mental illness. Researchers should compare the various types of family interventions and test which ones should be offered to which patients and families, ideally to develop a sense of how to match a given person’s degree and type of disability with the appropriate intervention. A related ques- tion is whether different interventions are best for different stages of mental illness. Priority must be given to research on ways to maximize the role of families in devel- oping and delivering effective care. e Even when new therapeutic approaches are found to be efficacious in highly con- trolled clinical trials, they still must be translated into general practice. Priority should be given to research on how best to accomplish this transfer and how to maintain the highest standards of quality. Treatment Settings The settings in which mental illness is treated range from drop-in centers to major psychiatric hospitals. A full understanding of the appropri- ate match between treatment context and patient remains a critical goal for research. 19 Although short-term hospitalization is currently the norm, studies are needed to determine precisely under what circum- stances severely mentally ill patients should actually receive short-term hospi- talization as well as to try to discover what distinguishes effective from ineffective short-term hospitalization. With the shift to community-based care, the role of long-term hospitalization has been unclear. Researchers should explore the question of whether longer hospital- ization helps some severely mentally ill persons. Some patients may require long- term hospitalization not only for survival but for a decent quality of life. Studies to determine which patients benefit from the total structure of extended hospitalization are crucial. Research should also focus on what specific interventions are indicated during long-term hospitalization. Day treatment, partial hospitalization, home-based care, and well-designed community treatment programs often work as well as or better than hospitaliza- tion—especially in fostering social inter- actions and adaptation. The various alternatives to full hospitalization often include new forms of care settings, such as clubhouses and drop-in centers. All of these approaches seem promising, but lit- tle is known of what benefits they bring or how to use them most effectively in planning treatment. In particular, it would be important to determine how best to match them to a given patient’s needs and stage of illness. Like other sick people, mentally ill patients first come for help to the general medical sector. Unfortunately, virtually no studies exist on how general practition- ers provide care to patients who have serious mental illnesses. It is important to determine what treatment approaches are actually used in various types of general medical settings and with what effective- ness. Finding ways to provide cost-effec- ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS tive mental health care through general medical settings may be especially im- portant in remote rural areas, for example. Integration, Continuity, and Quality of Care A major question in health care generally is whether guidelines for clinical practice can help improve everyday care. As more knowledge is developed about what works and about how to choose among various options for treatment, studies will need to examine ways to ensure that high standards of care are available to every person with a severe, disabling mental disorder. Quality-of-care research is needed to find ways to improve care in everyday practice, perhaps through development of practice guidelines. Development of appropriate treatment plans combining pharmacologic, psy- chosocial, rehabilitation, and other inter- ventions raises questions not only about how to formulate such plans, but also about ways to coordinate and maintain the needed combination of services. The wide variety of approaches has led to some confusion about the best strategy. This area needs study. A more difficult problem, in view of the variable and serious resource constraints that often affect public services, may be to determine how to achieve continuity over time, not just over different thera- peutic and rehabilitative service settings. Since these disorders are persistent, the individuals who have them will need secure and stable relationships with pro- viders who can establish ongoing rela- tionships, assess changes over time, and modify treatment goals and measures appropriately. How to achieve such con- tinuity in treatment over the long term is not clear. Without it, lasting benefits of even the best treatment plan may be hard to achieve, and the individual confronted with discontinuities and shifts in treat- ment may feel little reason to stay engaged in the service delivery system. 20 Some research has been conducted on case management, but the wide variety of models has led to some confusion about the best approach and about their effec- tiveness in different situations; there is even confusion about the definition implied in any specific use of the term “case manager.” Research must address the question of how well the different models of case management work, com- paring, for example, clinically based ver- sus rehabilitation-based, provider-based versus family-based, and team versus individual management. Severely mentally ill patients receive clin- ical services to alleviate their symptoms and rehabilitation services to help them overcome their disabilities. These two types of services arise from different tra- ditions, use different terminologies, and are delivered by different providers. Pri- ority must be given to research on how to integrate the various types of clinical services with rehabilitation. One question to be explored is how different regimens of medication affect a person’s ability to benefit from psychosocial treatment and rehabilitation. Another is how psychoso- cial treatment and rehabilitation should be timed in the process of recovery from an episode of disabling mental illness. Researchers should attempt to identify what characteristics of patients, provid- ers, and particular communities or health care delivery systems affect the quality of care for severely mentally ill persons. For example, it is critical to examine the val- ues that underlie care for people with severe mental illness. Such studies might focus upon the ethical implications of public fund allocations, of priorities set by treatment programs or individual provid- ers, and of attitudes toward providing care for severely mentally ill clients. ''CLINICAL SERVICES RESEARCH Special Populations, Special Treatment Issues The focus on quality of assessment and treat- ment in day-to-day settings is especially import- ant for groups with special characteristics that may make routine assessment or treatment more challenging. e Culturally and linguistically specific fac- tors make it important to identify ways to provide care that will be appropriate and suitable to the individual’s needs and per- sonal background. Research on other characteristics, such as age or homeless- ness, that appear important in treatment planning is also needed. Other groups, such as those whose conditions are com- plicated by AIDS or other medical disor- ders, substance abuse or dependence, or mental retardation, appear to present ther- apeutic challenges, but their special needs have not yet been well studied. Different cultures view mental illness and its treatment in different ways; there are variations in support networks among ethnic groups, and there exist a number of broader cultural issues such as degree of acculturation among different members of a particular group. All of these factors complicate treatment of seriously men- tally disordered individuals. Attention must be devoted to the impact of such cultural and ethnic issues on the treatment of minority patients, and ways to improve treatment for these patients must be developed. Other subgroups of severely mentally ill persons are also likely to receive inade- quate diagnosis and treatment. Substance abuse, mental retardation, and serious medical illnesses among severely men- tally ill patients frequently go undiag- nosed. Almost no health services research has been done in this area. Research should investigate which treatments— and which treatment settings—work best for the various types of dual disorders. 21 e While a body of research exists on home- less mentally ill people, a number of areas still need to be explored. There are prob- lems with the definition of homelessness, lack of accurate data on the prevalence of severe mental illness, and difficulties in identifying specific cases of severe men- tal illness. Although many homeless men- tally ill persons suffer from substance abuse and other conditions, there have so far been only a few well-detailed and well-quantified studies of service needs among them. A prime area for inquiry is determining the most effective methods for delivering services to homeless men- tally ill persons and showing how these services can be adapted to meet the needs of various subgroups of homeless people with mental illness. Many severely mentally ill people live in institutional and group settings. These people may have special treatment needs. For example, little is known about such public health issues as drug abuse and sexual behaviors that pose potentially serious risks to patients in group settings. The needs arising from the social contexts of these new community-based institu- tional settings must be examined. REHABILITATION: THE ROAD BACK Rehabilitation services research differs from treatment research in its emphasis on outcomes such as the patient’s functional status, access to resources, and quality of life rather than on symptoms, relapse, psychological well-being, and problem behaviors. The focus is on rehabil- itation specialists, occupational therapists, reha- bilitation centers, and vocational programs rather than on clinicians and the hospitals, clin- ics, and other care-providing settings in which they work. Psychiatric rehabilitation services seek to provide individuals suffering severe mental dis- orders with the skills and support needed to function in their own environment and with the ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS least professional support necessary. Services include training to secure and maintain paid employment, training in skills for social func- tioning and independent living, and residential services. Most rehabilitative treatment plans are multidimensional, consisting of integrated sets of services designed to remedy a series of skill deficits. Ideally, the training provided by reha- bilitation services helps individuals with severe mental illness to obtain and hold on to jobs, get along with other people; and live as indepen- dently as possible. Although clinical and rehabilitation services are distinct, it is important to study how the two can be creatively linked for each individual. In addition, rehabilitation services in particular need to be coordinated with other human serv- ices, such as housing and income support. Social Skills Training Training in interpersonal skills, such as main- taining appropriate eye contact or voice volume, has been successful, but it is not at all clear whether the skills learned in this kind of training can be extended to other situations and whether they endure over time, e Research efforts are needed to determine whether the social skills learned in spe- cialized training programs can be extended to the real world of social inter- actions. There is some evidence that indi- viduals can generalize their newly learned skills to daily life after intensive, long- term training, particularly if training involves a number of partners and if out- of-class assignments are given, but more research is needed. e The lessons learned in social skills train- ing not only must be incorporated into daily life but must endure there. Thus, researchers need to determine how to reinforce social skills so that the severely mentally ill person can maintain them in daily life. One way to accomplish this is through refresher training. Needed are prospective, longitudinal studies that can examine the development, maintenance, 22 and long-term success or failure of learned skills. e Other special factors in research include the need to consider culturally appropri- ate services for racial and ethnic minority populations; the services needed for indi- viduals who have never had experience with some areas of independent function- ing—for example, who never worked or lived away from aging parents—and rehabilitation services needed for an aging cohort whose principal support has been their parents, aging themselves. Vocational Rehabilitation Some approaches, such as transitional and supported employment, stress working for real employers alongside nonhandicapped workers. Studies have found that severely mentally ill persons in transitional programs require ongo- ing agency involvement to maintain their jobs. Other vocational models have the severely men- tally ill individuals living and working together in a consumer-owned business. Studies show that people with a psychiatric disability take longer to find jobs than others in this kind of program and are unlikely to retain the jobs they do find. It may be that severely mentally ill people need more long-term supports once they become employed. e Different models of vocational rehabilita- tion have been shown effective for some individuals, but little is known about how to match a given model with a particular individual or about how effective differ- ent models will be in different communi- ties and environments—for example, urban versus rural. Integration of findings from basic cognitive and perceptual research on individuals with schizophre- nia and related disorders may help iden- tify strategies to overcome attentional or other deficits that can impair people pre- paring to reenter the job market. e Vocational services can be either ongoing or limited to a specific period of time. ''CLINICAL SERVICES RESEARCH Research needs to discover which types of clients benefit most from each approach. How to provide ongoing sup- port without encouraging unnecessary dependence is another topic for investiga- tion. Research should also try to deter- mine the relative cost-effectiveness of the two vocational methods. It is important to learn how vocational rehabilitation services interact with other services that are combined with them. How, for example, do the other goals of psychosocial rehabilitation programs underway today affect their delivery of vocational services? So far, approaches that offer a number of services have gen- erally been found to work better than those that offer only one or two. Employment of the handicapped also depends on general employment and hir- ing trends. To take a hypothetical exam- ple, if young black men have a hard time finding a job, this will hurt the job pros- pects of young black men who are men- tally ill—no matter how good their vocational training might be. Yet little is known about the effects of race, sex, class, and age on employment among mentally ill people. Research needs to focus on how general trends affect voca- tional programs for severely mentally dis- ordered individuals. State vocational rehabilitation systems provide many of the vocational services to persons with psychiatric disabilities. Research must address how well the States do this, identifying who is, and is not, referred and accepted for vocational services, as well as their outcomes follow- ing rehabilitation. Greater attention should also be given to ways of educating State rehabilitation personnel about the unique needs of persons with severe men- tal illness. The Americans with Disabilities Act of 1990 requires employers to make accom- modations for workers with either physi- 23 cal or mental disabilities. Studies that assess the most effective ways to integrate workers with mental disorders into the work force would be valuable, as would descriptive studies of how the law’s requirements are being met. Independent Living Mental health professionals and consumers may have quite different ideas about what types of living situations are possible and desirable. Professionals often favor transitional residential programs in the company of staff members, while clients prefer to live in their own apart- ment with flexible supports. Much research has been devoted to comparing various arrange- ments, but the priorities for further research should place an emphasis on asking where indi- viduals with severe mental disorders want to live, what services are needed to succeed in their preferred living arrangements, and how well such approaches work. e Although living in their own apartment with flexible support works well for some: people with serious mental illness, it may be that some people fare better in some- what structured residential settings or transitional housing programs. If this proves to be the case, research should address the service needs and outcomes of these different groups. In addition, some severely.mentally ill people are unable to live independently in the com- munity even though they might like to do so; others can do so only with large amounts of support and structure. The housing needs of these people is another area that should be investigated. Recently, a new model of supportive housing services has been developed; this approach focuses on consumer goals and preferences, individualized and flexible rehabilitation, and normal housing. Stud- ies of how this supportive housing model works in areas with little low-income housing can help determine whether this ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS approach can be used in large cities and in areas with housing shortages. There is a general shortage of low-cost housing. People with severe mental ill- ness often cannot use rent subsidy or voucher programs to compete effectively for low-cost housing. Because of this, they may change residences frequently or even become homeless. Research detail- ing the effects of the low-cost housing crisis on persons with mental illness may allow better service development, as would studies of targeted community efforts to develop housing for this popu- lation. Research on how to maximize the effective use of assistance programs available now would also be helpful. Research should also be undertaken on the disincentives that operate against independent functioning and living. For example, Social Security or Social Secu- rity Disability benefits, including Medic- aid coverage, are phased out as a person returns to employment, even though the job may not bring adequate health insur- ance benefits with it. Perhaps demonstra- tion studies that test alternatives to these current disincentives could be developed jointly with the appropriate Federal agencies. Minority and Cross-Cultural Issues A member of a racial or ethnic minority group may resemble or differ from nonminority group members in a number of ways, ranging from the music enjoyed to the closeness of ties with the extended family. In addition, minority group members may have different life experiences due to discrimination or because of lack of economic or educational opportunities. Research is needed on the effects of such factors on the course of disability among persons with severe mental disorders who are members of a minority group. e Investigators should attempt to discover whether being a member of a minority 24 group makes a difference either in the effectiveness of rehabilitation or in the extent of rehabilitation services received from the State. More studies are needed to identify how to make service programs culturally appropriate and sensitive. One question, for example, is whether minority group members are more likely to use and be comfortable with culturally specific men- tal health centers. These centers target a particular ethnic or racial population using staff from the community. Another important question is whether being of the same ethnic group as the therapist is par- ticularly helpful to a minority client or whether it is more important to have a therapist—of any ethnic group—who has been trained in multicultural competence and sensitivity. Research on ethnic-spe- cific mental health centers might also explore varying cultural perceptions of psychotic disturbance, cultural styles of help-seeking, and cultural appropriate- ness of services. Rehabilitation of severely mentally ill persons emphasizes the importance of fostering independence. Yet in many minority cultures, interdependence is highly valued. Researchers should study the therapeutic use of interdependence in minority cultures that value it. This may mean permitting family members to take an active part in a client’s rehabilitation. Not only does this spread the burden over a larger network, it is also consistent with the role of families in many cultures throughout the world. Consumer and Family Perspectives Mental health professionals come and go in the lives of people with a severe mental disor- der, but families remain the one consistent force. Past research has shown that relatives often feel inappropriately excluded from deci- sions about treatment goals and types of treat- ment. Rehabilitation counselors often create ''CLINICAL SERVICES RESEARCH expectations for improvement and change that families do not view as being in their best inter- ests or that of the client’s. For example, a reha- bilitation counselor’s goal of return to full employment may inadvertently jeopardize Medicare or Medicaid benefits. Suggestions that the client live apart from the family may also create conflict between families and reha- bilitation professionals. e As in the case of clinical treatment plan- ning, family members often are the one source of continuity in a consumer’s life and even in provision of care. The ten- dency to exclude families from rehabili- tation planning is unfortunate, given their long-term and intimate knowledge of the ill individual. Sometimes, families can identify areas of interest that predate the illness, as well as talents and strengths that might help promote rehabilitation. Research on ways to maximize effective use of family expertise in planning reha- bilitation services needs to be conducted. Individuals with severe mental illnesses themselves also feel excluded from pro- fessional decisionmaking about their care. Their desires—as distinct from the needs of family and clinicians—must be recognized in any efforts at rehabilitation. More attention should be paid to the role of the client in setting rehabilitation goals. This will require further research into what consumers want from rehabilitation. This can cover all aspects of rehabilita- tion, from philosophy and structure to the kinds of services and service providers. The need for peer support has been iden- tified by consumers and confirmed by research. It is often difficult to isolate the effects of peer support on client outcome, and evaluations of peer support programs are scarce. Studies of the most effective ways for severely mentally disordered people to develop and sustain self-help and peer-support programs could be con- ducted in partnership between researchers and consumers. How to maximize the 25 effectiveness of these services and their interaction with the professionally led service system would be an important goal of such research. Priority should also be given to determining which type of self-help approach would be best for any given individual. Habilitation Services Some people with severe mental illness never learned certain skills before the onset of their illnesses. They may, for example, never have been employed or never have lived away from their parents. Services for these people are referred to as habilitation rather than rehabilita- tion. e Research must further develop the con- cept of habilitation for persons with severe and persistent mental illness. For example, women may be learning some job skills for the first time rather than relearning previously acquired employ- ment habits and values. Similarly, men may be learning homemaking and self- care living skills for the first time. More research must also occur in the area of rehabilitation and habilitation for older persons with mental illness. Despite the graying of those who were first deinstitu- tionalized, the role of age in the habilita- tion-rehabilitation process is poorly understood. As families, especially par- ents, age and die, increasingly larger cohorts of middle-aged and older persons with severe mental illness are requiring rehabilitation services, including residen- tial and social skills training. OUTCOME RESEARCH: THE EFFECTS OF CARING Certainly one of the most critical elements of clinical services research is the study of the impact of the services provided—whether spe- cific treatments, broad social interventions, or both. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS Such studies of outcome are not easily accomplished. To begin with, serious mental illness manifests itself in a variety of complex ways, not only in profound deteriorations in intellectual and emotional functioning, but in marred social and vocational adaptation, the destruction of well-being and personal poten- tial, and massive impediments to a normal exis- tence in the community. The assessment of such factors is difficult to achieve, no less after the provision of service interventions than before. Moreover, even when useful measurement tech- niques are available, the design of studies that permit definitive findings and conclusions regarding outcome pose a continuing challenge to researchers. Despite the difficulties, efforts to evaluate the outcome of service interventions are critical. Outcome is a multidimensional concept and needs to be assessed more broadly than by clin- ical measures alone. One helpful framework includes four domains that encompass the important areas to be assessed. e¢ Clinical: reduction or elimination of symptoms of psychopathology or the cure of a specific mental illness e Rehabilitative: improvement or restora- tion of social and vocational functioning e Humanitarian: increase in sense of well- being and personal fulfillment of both patient and family members e Public welfare: prevention of harm to the patient, family, and community The recommendations offered in this section are organized in terms of these four goals, fol- lowed by a set of general recommendations relevant to all of them. In addition, studies of outcome must increasingly consider measures of cost, since policymakers and administrators will be confronted over the next decade with demands to justify the cost-effectiveness of new or different public programs. 26 Clinical Domain Although a good deal of productive research has been devoted to studies of clinical outcome, much of it has focused on specific changes in psychopathology. As a result, there now exist many reliable and useful assessment instru- ments, ranging from structured diagnostic inter- views to scales that permit the rating of symptom severity. With this background, it is now possible to emphasize broader, less well studied aspects of clinical outcome. e Relatively little is known about the real- world implications of scores made on scales measuring symptom patterns and degree of psychopathology. For example, existing scales do not portray how trou- bling or intensely painful a particular symptom is to the individual, or precisely what certain symptom clusters portend for the quality of life, physical well-being, or chances of falling ill once again. Stud- ies that include measures of symptom- atology should, therefore, also include measures of other, more personal out- come implications, thus providing a richer and more textured portrait of the results of service interventions. e Understandably, most outcome studies have focused on positive consequences— that is, the prevention of further deterio- ration or the enhancement of functional capacity associated with reduction or elimination of symptoms. But some men- tal health outcomes are clearly negative, including such unfortunate sequelae as deteriorated neuromuscular and brain functioning, immunological disorders, and psychosocial problems arising from drug-induced sedation, drowsiness, and neuromuscular retardation. Such negative consequences need to be forthrightly addressed in future outcome studies. e Traditional health status concepts, such as mortality, morbidity, and life satisfaction, used in evaluating general health services, are equally applicable to the assessment ''CLINICAL SERVICES RESEARCH of outcomes of mental health services. Indeed, increasing evidence points to a close relationship between general health status and mental health status; change in one domain can lead to change in the other. While several studies in the health services arena consider mental health fac- tors as a part general health status, the reverse should also be the case. That is, researchers focusing on psychiatric out- come need to incorporate measures of general health status when assessing the impact of mental health interventions. Rehabilitative Domain Mental health research has traditionally focused on the obvious deficits of mentally ill persons rather than on their underlying strengths. The goal of mental health service interventions, however, is to restore the capaci- ties of the patient to function, day to day, in the real world. This places an important focus on rehabilitative strategies that target the patient’s resilience potential. Three broad outcome realms are relevant to rehabilitation status: social skills, vocational adaptation, and skills for independent living. e Individuals suffering from severe mental illness often face enormous difficulties in social functioning. Their relationships may seem fleeting and superficial, or exploitative and suffused with conflict, agitation, reckless behavior, depression, and anxiety. Yet many chronic patients function within a loose-knit social net- work of people who, in emotional terms, are equally disenfranchised. More important, these networks are often quite sustaining and meaningful. In effect, they constitute the patient’s community; more- over, they facilitate the evolution of self- help organizations. Therefore, studies of the origins, nature, constitution, and evo- lution of informal social networks should be pursued to determine what factors pro- mote their development. 27 e Virtually all severely mentally ill individ- uals are unable to work at some time, and many appear totally unable to do so, at least in competitive employment. They often require sheltered employment for some period of time. Yet relevant meas- ures of varying levels of sheltered work have not been devised. Careful develop- ment of valid measures is important if this research is to be conducted successfully. Perhaps the most uniform consequence of severe mental illness is a vastly compro- mised capacity for independent living. In addition to the ability to work, indices of rehabilitation must include such func- tional adaptation as the capacity to attend school, receive relevant treatments, obtain and maintain housing, maintain social relationships, and care for oneself. Such factors need to be more carefully organized, defined, and measured as indi- ces of rehabilitation. Humanitarian Domain The humanitarian goals of mental health serv- ices are to maximize the sense of well-being and personal fulfillment of patients and ‘family members. Such outcomes are the least well developed because humanitarian goals for severely mentally ill people have traditionally been the most neglected. Future clinical services research must address this situation, in part by recognizing that there are very severe limits to our therapeutic strategies with severe mental illness, and that humanitarian considerations demand the provision of a supportive haven at the boundaries of these limits. The nature of such a sanctuary is only beginning to be articu- lated in our society’s consciousness: good clin- ical and rehabilitative care, but also all the supports and shelters in the community that patients would have received in an optimum State hospital system 40 years ago. Future clinical services research needs to help articulate the humanitarian out- comes, that is, the positive function of community asylum. Some of these are ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS clear, at least in principle; for example, adequate food, clothing, and shelter. But other questions require careful study: how to maximize a patient’s self-care capaci- ties; how to recognize the limitations of these capacities, and how then to tailor a living situation that matches these limita- tions; and how providing such a match affects an individual’s well-being and quality of life. e A logical step in assessing the outcome of a treatment is to assess consumer satisfac- tion with the treatment. Work in this area has demonstrated that such measures can be useful and psychometrically sound. In general, these measures have focused on patient satisfaction. But such work needs to be extended to include satisfaction with services experienced by family members and other significant participants in the patient’s life. Especially in the case of chronic mental illness, some treatments satisfactory to the consumer could place significant burden on those around the consumer. Such work allows compari- sons between different criteria for satis- factory services. It is quite possible that patients have different criteria for good services than do those around them. Public Welfare Domain The admirable devotion to individual civil liberties for those suffering from mental illness, particularly for many who are homeless, may have unfortunate side effects. It may compro- mise the pursuit of general well-being and occa- sionally endanger life by allowing patients incapable of realistic planning to struggle through life alone and isolated. Like ships with- out rudders, mentally ill homeless people are free—but at risk. e Major goals in the domain of public wel- fare include (a) preventing injury to others and to the patient, whether from assaul- tive or self-destructive behaviors that arise out of the illness, and (b) preventing health problems resulting directly and 28 indirectly from mental illness, including such problems as inadequate sanitation and nutrition. Greater attention needs to be paid to such factors in studies of out- come. e Public safety outcome dimensions should no longer be restricted to frequency of actual assaultive or self-destructive behaviors. They should be expanded to include an environment perceived by the community as physically safe and a life lived without erosions of well-being. e Individuals in many States can be com- mitted to treatment only if they are extremely and imminently dangerous to themselves and/or society. It is time to confront the dilemmas created by the ten- sion between civil liberty and the urgent need for care, and to assess the clinical, rehabilitative, and humanitarian conse- quences of differing civil commitment statutes. General Recommendations Whether the emphasis of outcome studies is on clinical, rehabilitative, humanitarian, or pub- lic welfare goals, certain methodological and conceptual principles need to be incorporated in future outcome studies. e It is essential to carefully establish stand- ardized outcome criteria and measures in order to make possible valid and mean- ingful generalizations drawn from studies conducted at various sites and settings. e It is also critical to carefully define and control case mix so that it is possible to establish differences in outcome that are attributable to differences in samples. It is essential to identify the sources of vari- ance in outcome results—for example, individual differences in those receiving treatment or variability in the processes used in applying the treatment. e Researchers must begin to assess the role of such factors as culture, race, minority ''CLINICAL SERVICES RESEARCH status, gender, and age in what is defined by individuals, families, and communities as desirable outcome. In services research, the individual study that produces a definitive result is very rare. Instead, findings generally must be replicated, and judgment must rest on expert assessment of sometimes conflict- ing results from multiple studies. More effort is needed to understand ways to combine and interpret findings from a variety of studies on a particular issue. For this reason, it is also especially important to be sure that individual studies adhere to the most rigorous standards of research design and measurement from the outset. Much more effort will be needed to under- take studies that assess outcome over time, rather than at a single arbitrary point, so a more complete picture can be drawn about the effectiveness of a partic- ular intervention. Strategies for analyzing the multidomain outcome data from these complex longitudinal studies also need to be developed and used. If outcomes are to have an impact on the organization and financing of services, then they need to measure relevant vari- ables and present the findings in a usable form. Organization and financing issues are given full consideration in the next chapter; however, these variables are fre- quently overlooked in clinical services research. Such variables include meas- ures of continuity of care, of costs, and of interorganizational linkages. The need for 29 research to impact on organization and financing issues as well as to include these variables in outcome measurement, in general, points to the importance of link- ages between clinical and service systems research. Research is needed to determine how aspects of the system of care (such as organization and financing of the sys- tem, its comprehensiveness, continuity of care, and degree of integration of the var- ious components) affect the way that clin- ical services are linked to particular outcomes. The direct economic cost of caring for the mentally ill population has been esti- mated at close to $55 billion a year. The total cost of mental illness, including lost income and productivity, was estimated at $129 billion for 1988. These figures portray the enormous financial toll exacted on society by mental disorders, as well as the greater cost of allowing them to go untreated. Small wonder that dollar costs of services have received consider- able attention in outcome research, espe- cially among program managers and policymakers. There is a danger inherent in focusing too narrowly on this criterion of service effectiveness. Albeit important in itself, the cost criterion needs to be considered as part of a larger matrix of outcomes of the kind discussed earlier. Moreover, if cost of services is to be measured in future comparative treatment studies, the cost to patients, families, and society of the absence of such services must also be estimated and factored in. '''' After 35 years of deinstitutionalization..., it is time to go back to the drawing board and re-evaluate the economics of the mental health services system. What is the proper mix of federal, state, and local funding? How can various levels of government and different departments be encouraged to cooperate toward the common goal of better services? -E.F. Torrey, in Hospital and Community Psychiatry, 1990, vol. 41, page 530. '''' Service Systems Research: Improving the Organization and Financing of Care he previous chapter offered a series of recommendations for research designed to improve the quality of care for people with severe mental disorders. But even if knowledge from such research were to be available, an overriding challenge would remain: how to provide these services most efficiently, economically, and equitably. _ As the 21st century approaches, it is clear that the needs of countless of the Nation’s severely mentally ill population are still not being effec- tively met. A broad range of organizational, financial, and social problems continue to be faced by those seeking to use “the system” to receive appropriate care. Although considerable progress has been made in developing commu- nity-based mental health services and evaluat- ing their effectiveness, an understanding is still lacking about optimum ways to organize and finance mental health service systems to meet the varied needs—psychological, social, eco- nomic—of individuals with severe mental illness. Multiple challenges confront those who seek to develop effective service systems. For exam- ple, the organizational and procedural arrange- ments for providing health insurance coverage, housing, income maintenance, and rehabilita- tion encompass a complex array of agencies, eligibility criteria, and recertification require- ments. In many areas, adequate resources may not be available—and, when they are, they may 33 not be staffed, organized, managed, or financed adequately. Moreover, when individuals with severe mental illness come into contact with the criminal justice system, they may not be referred for appropriate services or even recog- nized as needing care. And negative attitudes of the public, as well as professionals, toward indi- viduals with severe mental illness often create barriers to effective care. Indicators of system failure are abundant: high hospital readmission rates, low employ- ment, substantial numbers of homeless mentally ill people, reliance on jails and the penal system to cope with psychiatric crises, and increasing complaints from patients and their families about the inadequacies of society’s responses to their needs. Research directed at developing and evaluating strategies for improved community and State systems of care for individuals with severe mental illness needs to be given priority. IMPROVING SERVICE SYSTEMS AT THE LOCAL LEVEL The development of effective service systems at the local level rests on the availability of answers to two key questions: e Which services are especially needed ina given location? ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS e How can the needs of the community as a whole and its various elements best be met? A research agenda that provides service sys- tem planners with resolutions of these issues is critical. Some general research strategies and specific research suggestions toward this end are provided here. Identifying the Nature and Scope of Local Needs Assessment instruments developed for re- search purposes may not be ideally suited for routine use in service settings, for example, to establish eligibility for services or benefits or to identify the need for a comprehensive examination. e Improved screening methods are needed for identifying individuals with severe mental illness in the various community settings in which they are found. In shel- ters for the homeless, hospital emergency rooms, jails, and other community set- tings, opportunities exist for recognizing and referring those in desperate need of care. If such opportunities are to be seized, brief screening instruments are required. Their use will allow swift and appropriate referrals to specific types of services such as crisis management, day care, or supervised housing. Such instru- ments must be able to assess a combina- tion of factors—for example, symptom status, disability status, and nature of impairment and other clinical and per- sonal characteristics—yet be capable of being completed in a brief time period. Success in this endeavor will do much to clarify the limits of knowledge, ensure equity of access to treatment, and encour- age state-of-the-art care of individuals with severe mental illness. e Past research has given limited attention to the preferences of individuals with severe mental illness and their families for specific types of services and service-pro- viding arrangements. This weakness in 34 the service system is reflected in the refusal of many severely mentally ill indi- viduals to engage in treatment. Research on treatment preferences and the accept- ability of alternative treatment models is thus clearly essential. To date, research has revealed clear-cut ethnic and racial differences in the use of mental health services. Some groups may not utilize available services sufficiently, while others make inappropriate use of them. Much more research is needed in order to document patterns of differential use and to understand the range of con- tributing factors, including insensitivity or discrimination. Knowledge about the origins of racial and cultural differences in the use of mental health will help over- come existing barriers. Because beliefs about mental health prob- lems and the acceptability of alternative solutions can vary greatly by culture, research is also needed to understand what services are most valued and effec- tive for persons of various ethnic and racial groups suffering serious mental ill- ness. Although there has been a recent emphasis on culturally adapted programs, these must now be systematically evalu- ated. For example, do such factors as out- reach, minority staffing, and cultural sensitivity actually improve the use of mental health services and positive out- comes? The impact of natural support groups such as the church, civic organiza- tions, and neighborhood community cen- ters needs further study as well. More must be learned about the financing of mental health care for minority group members. Much of this work will focus on public sector mechanisms for subsidiz- ing the care of low-income individuals, who are disproportionately minority members as well. But private sector financing should not be ignored. Such studies should yield insights into the degree to which differences in service use '' SERVICE SYSTEMS RESEARCH by minority and majority citizens are attributable to differences in financing. As noted throughout this report, a special population of increasing importance is made up of dual-diagnosis patients—spe- cifically, individuals with severe mental illness who are also substance abusers— often found in younger groups. Research is needed to subcategorize this population in order to identify which patients should be managed primarily by mental health agencies and which by substance abuse agencies. Studies are needed as well to determine how to integrate a single treat- ment approach that is based on two treat- ment philosophies that are quite different. In drug abuse treatment programs, the use of medication is often discouraged, con- frontation is encouraged, and noncompli- ance may lead to expulsion; all of these run counter to the treatment philosophies of mental health agencies. There is evidence that many homeless individuals with severe mental disorders will accept a supportive living program if offered. Researchers have concluded that chronic homelessness is often related more to a lack of suitable housing alterna- tives than to the individual’s psychopa- thology. It is important to know what housing and treatment alternatives are most acceptable to this population and which have the best outcomes. Matching Local Services to Needs The building blocks of an effective local serv- ice system are those interventions that have been empirically demonstrated to be necessary and helpful in reaching desired outcomes for clients, family, and community members. Clin- ical services research can provide information about which approaches are likely to be most effective, but service system planners need information that goes beyond the current find- ings of clinical research to shape the organiza- tion of an effective system. 35 A common finding of many studies is that the structure and processes of mental health serv- ices are complex, fragmented, confusing, and often counterproductive from the perspective of the patient and family members; traditionally available services, whether medical or psy- chosocial, are often mismatched to the needs of many individuals. Not all needs of individuals with severe mental illness are comparable, nor are their capacities to respond positively to the services provided. Thus, studies are needed of special subgroups among indi- viduals with severe mental illness who fail to become integrated into the service system. These studies can reveal weaknesses in the system and clarify the unmet needs of distinct groups, varying, for example, in age, gender, cultural back- ground, marital status, economic level, and geographic location. Tools for measuring the quality of the patient’s life—living arrangements, social and economic opportunities—lag far behind traditional clinical assessment _ instruments. Priority, therefore, needs to be given to research that develops and refines such instruments for use at the local level. Still another critical research priority is to determine the most effective ways of enabling persons with serious mental illnesses to meet their basic needs in the community. Given a link between quality of life and risk of relapse, the paucity of research in this area needs to be rectified. For example, the merits of skill training designed to teach clients to participate in entitlement programs, manage their money, and seek out necessary health care might be compared with interventions that rely to a greater degree on environ- mental support, such as use of outreach workers. Much more attention needs to be paid to studies aimed at learning the characteris- tics of safe, predictable, and health- ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS engendering local environments—the kind that allow clients to call upon their already existing skills and adaptive capacities. Such research has been limited to family environments and now needs to be extended to residential and work envi- ronments. For example, the newer sup- ported-housing and supported-work approaches require rigorous evaluation. The goals of client satisfaction and quality of life need to be studied as valued out- comes of these models, along with the more typical measures of relapse and level of independent functioning. THE STRUCTURE OF CARE: IMPROVING SERVICE SYSTEM ORGANIZATION One of the most striking features of the national mental health care system is its organi- zational diversity. Such variations may be attributable to the many historical, political, social, scientific, and economic forces that have influenced the evolution of mental health care systems in the United States. But it reflects also society’s shifting attempts to respond to the difficulties of meeting the multiple and complex needs of individuals with major and often life- long illnesses and disability. In the past, mental health services research has focused more on descriptive studies of the nature of mental health organizations than on analytic studies intended to improve the organi- zation of care. Thus, a major aim must now be to understand how best to structure a mix of services to meet the needs of individuals with severe mental illness. More needs to be known, too, about the various organizational approaches needed for different subgroups of severely mentally ill persons, such as children, the elderly, multiply disabled, minorities, homeless, and victims of AIDS. This section addresses research issues sur- rounding the integration of care—especially the testing of organizational approaches designed to increase the effectiveness with which services actually reach the intended consumers. Because of the complexity of such studies, a series of recommendations of research methods are pre- sented for use in organizational studies. Integration of Care: Reaching the Consumer A consensus exists among policymakers, providers, patients and their families, and researchers that one of the most serious contem- porary problems in the mental health field is the widespread fragmentation of mental health services. There is no comparable consensus, however, on the policy changes needed to over- come the problem. Available research does not suggest what does and does not work best from a systems perspective. The components of the mental health care system are many and varied, including hospi- tals, clinics, nursing homes, jails and prisons, shelters for the homeless, hospital emergency rooms, health maintenance organizations, youth service agencies, and private practitioners. The diverse interventions and services needed by people with severe mental disorders are often provided by different agencies or persons, working under different administrative direc- tion, and supported by different funding streams and levels of government. Trying to overcome these administrative and bureaucratic obstacles is even more difficult when burdened with symptoms like despair, fear, decreased motiva- tion, impaired concentration, and heightened suspicion. A leading premise of many proposals for reform is that greater centralization of authority and integration of both administrative and clin- ical functions would significantly improve the care of individuals with severe mental illness. This section presents proposals for research designed to help realign authority and responsi- bility in mental health care systems and to foster better integrating mechanisms. Although it is useful to assess the degree to which different arrangements result in better coordination and continuity of care, it must be remembered that, ultimately, positive client outcome—not coor- dination itself—must be the goal. 36 ''SERVICE SYSTEMS RESEARCH Family participation in the planning and delivery of mental health services is a crucial ingredient to their success. Increased focus is needed, therefore, on studies of the ways in which family mem- bers can best be involved in the organiza- tion of service systems and the integration of their various elements. Researchers should now assess the most effective long-term roles and responsibilities for family members in planning, governance, support, and monitoring of both tradi- tional and newly developed services. In addition, studies are needed to identify ways in which systems of care can reflect more understanding of families in their respective roles both as recipients and as providers of care. In recognition of the importance of serv- ice coordination, increased interest has been directed toward case management in dealing with individuals with severe men- tal illness. Many different models of case management have emerged, most of them functioning primarily to increase individ- ual client access to appropriate services, to facilitate and monitor specialized care, and to provide responsible and consistent interpersonal contact between individuals who are desperately ill and the service system intended to serve them. In effect, case management is viewed as the glue that holds the fragmented service system together. Despite their widespread use by State and local mental health authorities and the opportunity afforded by numer- ous natural experiments, there have been few carefully designed studies of the effectiveness and cost-benefit tradeoff of different models of case management. Enough is now known to be able to design such studies, carefully testing hypotheses regarding the impact of case management on both the process and outcome of com- munity services. A somewhat different approach to organ- izing service systems consists of the use of continuous treatment teams. This 37 approach attempts to overcome the prob- lem of a fragmented system by employing teams of mental health personnel who are responsible for designated clients and who, themselves, actually deliver most treatment, rehabilitation, and social serv- ices. Because a given team remains with a client over time, the potential for conti- nuity of care is enhanced; moreover, because teams practice assertive out- reach, they may help prevent dropout and provide needed supports in the clients’ natural environments. Findings from studies of continuous treatment teams have been encouraging, but the model has been evaluated only with relatively small samples of patients and in only a few settings. It remains an important goal to determine whether such an approach is effective in integrating services on a broader geographic basis. Numerous other approaches have been attempted for linking systems compo- nents—for example, the restructuring and realignment of authority within local mental health centers, and administrative procedures such as contracting for serv- ices in order to expand the potential for smooth interorganizational arrange- ments. Although the effectiveness of such integrating mechanisms are being stud- ied, more rigorous analyses, using improved methods and multiple sites, are needed in order to determine their long- term clinical impact. One of the cross-cutting issues in the organization of mental health services is the relationship of the mental health sys- tem to the general medical care system on the one hand, and to the non-mental- health service system on the other. Sev- eral specific areas need early investigation: - Inlight of recent advances in both med- ical treatments and psychosocial reha- bilitation, it is time that researchers systematically examine the relative ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS contributions of medical, nonmedi - cal, and combined treatment ap- proaches for different disorders and conditions. The benefits and limita- tions of mainstreaming patients treated for serious mental disorders need to be rigorously analyzed. - Urgently needed, too, is a better understanding of the role of the hos- pital in the overall service system— including the mechanisms that facilitate smooth and rapid transfer of clients from community to hospital and vice versa. Al-though large num- bers of patients are now seen in both psychiatric hospitals and psychiatric units of general hospitals, very little is known about how these facilities are used or how they fit into the rest of the mental health system. The ideal roles for these hospitals in a comprehensive system need to be determined. - Despite their critical importance in the provision of mental health services, the role of nursing homes remains vastly understudied. Research on access to care in nursing homes is critical. So, too, are studies designed to evaluate the impact of the nursing home preadmission screening pro- gram now being put into effect and to define the role of the mental health care system in evaluating and treating nursing home patients. - These same issues apply to the prison system. A large number of persons with severe mental illness inhabit the Nation’s penal institutions. Most do not receive adequate treatment, and studies are needed to determine what changes—including possible place- ment in mental hospitals—are needed. The strengths and weaknesses of the com- munity mental health center (CMHC) as an organizing concept need to be studied carefully. For example, the drawing of 38 catchment boundaries in large urban areas has often resulted in the creation of zones with no real meaning; some of them divide local ethnic and racial communi- ties, school districts, and other meaning- ful entities. On the positive side, however, all elements of centers have been account- able to one administration, which is not the case when the system is altogether fragmented. There is a need to study the pros and cons of various models of vocational rehabili- tation, including transitional approaches and newer supported-employment options in which patients receive training and support in actual job slots. It is important to determine the most helpful model, those who benefit from it, and at what stages in their rehabilitation. An especially critical issue for study is whether severely mentally ill clients should be mainstreamed in vocational rehabilitation programs with the physi- cally or developmentally disabled or instead be placed in special programs for individuals with severe mental illness. A major component of the service system for persons with severe mental illnesses is housing. Research must address the effi- cacy of various housing models, ranging from highly structured special residential settings to normative integrated commu- nity housing in which patients receive support from outreach staff. Which patients do best in what kinds of models and at what stages of their illnesses? How are decisions made to move patients from one level of supportive housing to another less structured one? The entire issue of sequencing needs to be studied. Using New Concepts and Methods in Organizational Research Despite the obvious importance of issues of service system organization, numerous concep- tual and methodological problems need to be resolved if productive organizational research is ''SERVICE SYSTEMS RESEARCH to be carried out. This section highlights only a few of the major obstacles facing researchers in the field and identifies a number of salient approaches. e Some changes in the organization of men- tal health services occur in incremental fashion over the years, while others are driven by narrow changes in the law, reimbursement practices, or regulatory policy. From time to time, however, States introduce major service systems changes that can serve as natural experi- ments. Such changes occur, for example, with a shift from a system of separately funded State hospitals and local boards to a new system for inpatient and outpatient services whose funding is controlled by local community mental health boards with extensive use of contracting for care. The study of the effects of such changes on patient functioning and on costs needs to be a priority for services researchers. Because of the potentially enormous im- pact of changes in service systems on clinical and social functioning of individ- uals, a continuing need exists for the de- velopment of data bases to make possible the measurement of effects over extended periods. Extensive amounts of informa- tion need to be collected about both the service systems and the patients embed- ded in them in order to be able to identify, in controlled studies, specific variables that are likely to affect outcomes. A major limitation of research on the organization and delivery of care to date is that it has been on a small scale. For instance, studies of case management or continuous treatment teams have dealt with relatively small groups of patients, and the episodes studied have often been specially arranged. As such, these models end up being additional parts of an already functioning system and do not address the issue of how to organize an entire system. Research is also needed to tackle an entire area—for example, a catchment area— 39 and evaluate the pros and cons of various sociopolitical models of system design. Much more attention needs to be paid to clearly defining and measuring the inter- ventions, as well as the service systems context in which they take place. Needed are studies not just of the piece that is added, but of the entire system. The nature of the system as a whole is likely to change when an element is added. Issues of confidentiality require study. Mechanisms need to be developed and evaluated that protect clients’ rights while allowing for exchange of information be- tween agencies working with the same individual. Consumers and families should be involved in the development of options and research addressing their utility. Research on problems identified in implementation of community-based services under the State Planning Act (P.L. 99-660) should be a priority. THE ALLOCATION OF FINANCIAL RESOURCES Although there has been considerable research on the economics of mental health care, precious little is relevant to the financing of care for individuals with severe mental illness. A number of overwhelming problems continue to confront policymakers seeking to apply scarce resources to the treatment of an array of costly illnesses. Four problems stand out. The first concerns the allocation of resources across treatment settings. Since the late 1970s, there has been a growing consensus that most severely mentally ill persons can be success- fully maintained in the community at a cost comparable to that of mental hospital care. Yet, roughly 63 percent of State mental health bud- gets are used to support mental hospitals. This imbalance persists even though many State pol- icymakers are committed to community care for those suffering severe mental disorders. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS A second problem is posed by the high rate of indigence among individuals with severe mental illness. They are typically unemployed and uninsured. Most lead catastrophic lives. Unlike the elderly, who receive income support from Social Security and many medical expenses from Medicare, they must depend on a complex variety of problematic sources— among them Social Security Disability Income (SSDI) if they have worked long enough; Sup- plemental Security Income (SSI) if they meet Federal disability criteria and are not qualified for other support; the Veterans Administration if the mental disability is military service con- nected; State welfare; families; or a job, usually connected to a rehabilitation program. But the fact is that many individuals with severe mental illness receive no income at all—and, moreover, are overrepresented among the uninsured. Lat- est available estimates are that only about half of those in the community are covered by either SSDI or SSI. A third problem is posed by the rise of homelessness among individuals with severe mental illness, an issue raised throughout this report. Housing for this population is character- ized by low quality and inadequate supply. Although community living for mentally ill people has great potential, some of the most shameful abuses—of individuals and public funding—have occurred in these settings. Finally, a fourth problem is embedded in the gap between the critical needs of individuals with severe mental illness and the economic resources available to meet them. Failure to understand treatment needs of the mentally ill, coupled with tighter budgets and rising costs of all health care, have led to disproportionately lower allocations to mental health care. Medic- aid, intended to be a major funding source, has been under pressure by both State and Federal legislatures to limit the growth in expenditures; consequently, there is a reluctance to expand the definitions of reimbursable services for innova- tions in community treatment technology. State Medicaid, for example, defines case manage- ment and psychosocial rehabilitation as optional. When such services are covered, reim- 40 bursement is so low that providers are often unwilling to participate. Such funding patterns encourage institutional care, especially since eligibility is often linked to that setting. Also, many policies attempt to induce users of mental health care to behave like traditional consumers, which they may be unable to do. As a result of this set of problems, treatment quality varies dramatically from one commu- nity to another—and in many, the breach between what is available in the private and public sectors is agonizingly wide. There are few research data to guide policymakers in choosing among competing models of care. e Toovercome these problems, research on economic and financing issues related to the delivery of services for individuals with severe mental illness must be based on an understanding of the unique char- acteristics of this population. Most significant is the degree and nature of the disabilities suffered by severely mentally ill people. Contem- porary treatment goals focus on reha- bilitation and maintenance of functioning, thus assuming that severe mental disorders represent long-term disability in which the goals of social adjustment, indepen- dence, and the meeting of basic human needs are central. Second, individuals with severe men- tal illness rely on the public sector for material support and treatment. The number of them who are enrolled in SSI rose by nearly half in the 1980s; since 1984, those on the rolls of SSDI have grown by two-thirds. Public hos- pitals and general hospital psychiatric units treat a disproportionately large number of indigent psychiatric patients, as do public clinics and reha- bilitation and residential programs. These facilities are the sole providers of care for most severely mentally ill persons, and Medicaid is the largest source of Federal funding. ''SERVICE SYSTEMS RESEARCH - Third, finding appropriate treatment is a complicated and fragmented obstacle course that mentally ill indi- viduals and their families must run. Making choices among the many human, medical, and social programs offered by a wide variety of providers and government bureaus is frighten- ing for the healthiest of individuals. For those who are psychologically incapacitated, it can be nearly impossible. Moreover, the client must comply with treatment regimens, obtain and remain in housing, apply for and maintain entitlements, and participate in an array of rehabilitation programs. In this difficult situation, a number of broad areas of research on financing stand out. Studies are needed that focus on analyz- ing and understanding the array of orga- nizational and financial arrangements that most effectively strengthen consumer interests. A first step might be to investi- gate the various vehicles—for example, case management—for the coordination of services. The relative effectiveness of the different arrangements could then be systematically studied, with Medicaid as an excellent laboratory. Some additional questions to be examined: What is the best way to centralize responsibility for care of individuals with severe mental illness? To what extent are financial incentives and organizational structure compatible in meeting the needs in specific political and cultural conditions? What system will best serve the consumer? Is there a way to make the “dollars follow the patient”? Public financing of care for individuals with severe mental illness needs to be carefully reviewed. This area is very broad and includes examination of the terms for transferring Federal and State funds to community programs; compari- sons of the use of privately owned provid- ers to deliver publicly financed services 41 versus direct public provision of care; determination of the types of contracts that best meet public policy objectives when privately owned providers are used; identification of the types of payment, regulatory, and eligibility policies for Medicaid that most sensibly balance con- cers over access to care and public bud- get restraints; examination of the structure of incentives in income support programs; and, most globally, a determi- nation of the optimal combination of State policies to finance care, given the struc- ture of the delivery system, Federal policy constraints, and the needs of individuals with severe mental illness. An inordinate share of public mental health resources tend to go toward public mental hospitals. One reason lies in the traditional method of financing: State governments fund community treatment and then offer use of the State hospitals as a “free good.” Thus, heavy use of State hospitals presents no adverse financial consequences to communities. Some States recognize these flaws in the sys- tem. Wisconsin, Ohio, Texas, Michigan, and Rhode Island, for example, are exper- imenting with alternative financing. Strat- egies for study include making local programs financially responsible for all use of State hospital services, offering communities budget bonuses for decreas- ing State hospital use, and providing new community resources to treat those at high risk of hospitalization. Such strategies should be studied in terms of their systemwide consequences. Dur- ing the early 1980s, Medicaid payment policy in several States limited the num- ber of reimbursable inpatient days. That policy greatly increased chances for a psychiatric patient’s being transferred from a general hospital to a State mental hospital. This suggests that anticipated savings from such policies will exceed actual savings, because there is signifi- cant cost shifting from Medicaid to the ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS State hospital. In addition, this cost-con- tainment policy conflicts with the public policy of decreasing use of public hospi- tals. Clearly, economic research that empirically establishes key systemwide linkages is sorely needed. The role of supported housing in the con- tinuum of care for individuals with severe mental illness requires economic study. Understanding the links among clinical services and supply and quality of board and care homes, SSI payments, and the local housing market would be a major step in dealing with homelessness and inadequate housing for individuals with severe mental illness. For example, because SSI payments are not linked to local market conditions, supported hous- ing tends be in low-rent districts. These locations often limit access to transporta- tion and community treatment and offer low-quality housing. It is evident from a review of the literature that there has been tremendous growth in eco- nomic analysis of mental health care problems. But much of it is not applicable to individuals with severe mental illness, whose needs go beyond those of traditional markets. This gap needs to be filled. LEGAL ISSUES The young man with schizophrenia obliged to submit to outpatient drug therapy, the suicid- ally depressed woman committed to a State psychiatric hospital, the prison inmate whose longstanding mental illness has gone unrecog- nized—all of these individuals experience the impact of legal policy. Legal issues also impinge upon those who provide care for the mentally ill population. The law, for example, defines standards of minimally acceptable care and describes what can reasonably be expected of mental health professionals in the perfor- mance of their duties. Legal issues, in short, set the limits and define the ethos of care provision for patients in the community. Research is 42 needed in a variety of important areas—among them the role of the criminal justice system, inpatient commitment and the relatively new phenomenon of outpatient commitment, the accuracy of predictions of patient violence, and the role of the law generally in the lives of mentally ill individuals and their families. In all of these areas, it is critical to learn more about family perceptions and involvement. The Role of the Criminal Justice System Many individuals with severe mental illness reside from time to time in such institutions as jails, prisons, and juvenile justice facilities. Some of these people are periodically served by the mental health system as well. Research must address the role played by the criminal justice system in our mental health system and how it affects the provision of care. e Many persistently mentally ill individuals are being processed at local jails—sites that are ill equipped to manage them. More research is needed on ways to screen, refer, or treat severely mentally ill individuals who enter the jail system and on alternatives to incarceration in correc- tional institutions. A considerable amount of exchange appears to occur between the criminal justice and mental health systems. There has been no formal investigation of such movement from the perspective of the client. Systematic attempts to track the careers of patients through both systems could yield information about the fre- quency of such involvement as well as its most common patterns. Researchers could then design or evaluate services for particular points in a patient’s involve- ment in one system or the other and try to identify subgroups of patients at legal risk for involvement in both systems. - It is especially important to gather infor- mation about the movement of adoles- cents through different treatment and ''SERVICE SYSTEMS RESEARCH justice systems. Evidence of lower ages of onset for some disorders and a sky- rocketing rate of institutional placements of adolescents argue for greater concern about younger patients. An increased bur- den on systems serving minors can be expected to continue. As a result, the involvement of the family, the effects of early mental health treatment, and the fac- tors that appear related to involvement with the juvenile justice or child welfare systems instead of the mental health sys- tem all deserve research consideration. In researching treatment histories, it is particularly important to consider cul- tural, ethnic, and racial differences. Infor- mation about biases in clinical judgment as well as about variations in family approaches might help account for the widely differing rates of hospitalization and involuntary commitment across groups. A continued effort should be made to discover how race and socioeco- nomic class affect whether a person is likely to be treated or arrested as well as how a person fares within these two sys- tems. The formulation of policies aimed at achieving equity in service provision rests on obtaining such information. Persuasion, Coercion, and Dangerous Behavior With deinstitutionalization and the legal expansion of patients’ rights, many people with severe mental disorders moved from the hospi- tal to the community. Yet once in the commu- nity, some of the people with severe mental disorders exercise their right to refuse mental health treatment. Some are homeless; others live with a friend or relative, but function at a mar- ginal level. Thus, the ideal of living, function- ing, and being treated within the community is all too often replaced by the reality of benign neglect within the community; the alternative is often ineffective, revolving door institutional- ization. One response is to look for ways to 43 make services attractive to those with mental illness who refuse mental health care. A quite different response is being explored by a number of States. With the help of new or existing laws, these States seem poised to initi- ate outpatient commitment or community mon- itoring systems. The general strategy is to issue court orders requiring individuals to comply with certain conditions of outpatient treatment or face commitment to an institution. From a policy perspective, outpatient commitment seems to offer a promising alternative to the deficiencies in the current system. Yet it raises fundamental questions of patient rights and the efficacy of coerced treatment. This development, and other legal issues sur- rounding those who suffer severe psychopathol- ogy, suggest a number of recommendations for future studies: e Itis important to follow the demonstration programs now being undertaken on out- patient commitment. Careful documenta- tion of these efforts—in terms of assessing systems changes and patient outcomes—could help greatly in designing community patient monitoring that is acceptable both legally and clini-. cally. It is particularly useful to obtain empirical information about such pro- grams while they are still in their forma- tive stages and not yet hampered by organizational inertia. More must be learned about the activities of families of individuals with persistent mental illness.- Although families are often the gatekeepers to both the legal and the mental health systems, the processes by which families access services and accommodate legal changes have been poorly explored. Studies about how fam- ily members view and use treatment serv- ices or legal regulations would help in devising or evaluating various strategies that rely on family members to persuade or coerce patients into treatment. Commitment law, the emerging interest in outpatient commitment, and the debate ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS about the right of patients to refuse med- ications all rest on assumptions about coercing patients into treatment. Unfortu- nately, little is known about what strate- gies are presently used by clinicians to coerce patients into treatment, how patients experience this coercion, and how effective coerced treatment really is. Further, there has been no clear study of the interplay between a patient’s compe- tency and the suitability of differing levels of pressure to comply with treatment. This initial work on defining the theory and practice of coercion could lay the groundwork for more systematic efforts to determine when the use of psycholog- ical or legal pressures with patients is detrimental or helpful. The practices of criminal and civil com- mitment rely on untested assumptions about violent behavior and about the abil- ity of professionals to predict such vio- lence. More study is needed on the extent of clinical accuracy in predicting violence by individuals with severe mental illness. Particularly informative would be inves- tigations of the relationship between vio- lence and specific aspects of mental illness—for example, the nature, extent, and effect of delusions. Also useful would be comparisons of vio- lence by normal individuals and by men- tal patients. Such research would shed light on what, if anything, distinguishes patient violence from violence by any other citizen. In comparing patient with nonpatient violence, different subgroups of patients must be studied. Merely look- ing at violence by patients in general will lead to broad stereotypes, vague theories, and stigmatizing, relatively ineffective legal policy. Deciding on ways to group patients may not be easy since diagnostic categories may be too broad or inexact for this purpose. Grouping patients according to such variables as treatment history, liv- ing arrangements, or cognitive style could 4 prove more useful in developing signifi- cant practical theory. In examining dangerous behavior, it would be desirable to examine violence in the family and in public separately, because each implies different strategies for clinical intervention and regulatory policy. There is increasing awareness that patient violence is not a unified phenom- enon and that research on patient violence against family members may prove par- ticularly important. It is much easier and cheaper to do research on inpatient violence than on violence by mental patients in the com- munity. It should, however, be under- taken with certain goals in mind. Its highest priority should be on discerning types of interaction that are likely to be present in patient violence in the commu- nity as well. Inpatient studies should also concentrate on factors that have meaning for clinical or legal intervention. For example, inpatients frequently complain that they have too little control over their environment. Investigating the role such feelings play in inpatient violence could offer valuable insight into the dynamics of violent encounters and might help in developing interventions. The Law as a Help or Hindrance Researchers have largely ignored the ques- tion of whether the law promotes or hampers effective care. There has been little systematic exploration of ways of using the law to improve service delivery. Several issues seem especially worthy of more investigation. Restrictions on the sharing of patient information have become commonplace, with the laudable goal of allowing the patient more control over the flow of po- tentially stigmatizing or inaccurate infor- mation. Investigators should study what effect such strict confidentiality has on the coordination or consistency of care. This ''SERVICE SYSTEMS RESEARCH would help lead to a reasoned discussion of balancing competing interests. Researchers should investigate creative ways of using the law to promote long- term planning for individuals with per- sistent, serious disorders. A major concern of families of mentally disabled adults is how to ensure that the necessary care will be provided after the parents or responsible siblings become disabled or die. To address this issue, several States have established organizations that help families make plans, serve as trustee to manage transferred assets, and provide some case management or care. Investi- gations of the attractiveness of such mod- els to family members, the feasibility of regulatory strategies to guarantee the fis- cal soundness of these organizations, and the effects such organizations have on the provision of public sector care could yield valuable information for providers. Ways of using the law creatively to pro- vide safe, affordable housing for individ- uals with serious, persistent disorders should be addressed more aggressively. A variety of programs in different localities have used creative financing to establish or renovate housing. Entrepreneurial service providers have maximized the use of tax laws and pursued investment strat- egies that combine resources of founda- tions, housing authorities, and developers with some success. Unfortunately, infor- mation about these efforts has remained scattered and generally unavailable to the social service community. Systematically studying and disseminating information about these projects could spark innova- tive efforts in other localities. More information is needed on the family’s relationship with the individual having a serious, persistent, disabling mental disorder and the views of family members and patients about legal pro- ceedings in which they have been or might be involved. 45 The research outlined in this section will require ongoing interdisciplinary collaboration. Often legal, organizational, and clinical knowl- edge is needed. A high priority would thus be to encourage settings in which such collaboration can occur and to build interdisciplinary training components into research projects. Pursuing the above issues with an interdisciplinary emphasis could move the field a long way toward policy that is as well informed as it is well intentioned. HUMAN RESOURCE DEVELOPMENT The mission of a mental health delivery sys- tem is inexorably tied to human resources, its most valued asset. The most urgent issue today in mental health human resources development is the modification of the values, roles, and skills of the core mental health professionals—psy- chiatrists, clinical psychologists, clinical social workers, and psychiatric nurses—as the focus shifts from State hospitals to innovative, com- munity programs. Community treatment will not be successful if the available personnel, professional organi- zations, and academic programs are not recep- tive to changes in the delivery of services to seriously impaired persons. Ways must be found to motivate staffs to work with these clients, especially in community settings. Col- laboration between academic and State mental health agencies needs to be enhanced. Of great concern is redeployment of staff from mental hospitals to community, and, within the com- munity, from practitioners’ offices to the client’s natural environment. Finally, forecast- ing models of service delivery are needed to correct staff imbalances at both Federal and State levels. Needed especially is research to build on current knowledge in a number of categories of concern. In the area of human resource information and planning, data are needed for estima- ting current and future work force need, improving program efficiency, and assessing the outcome of services. Early research focused on trends in mental ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS health personnel in different treatment settings. No clear standards for optimal staff mix emerged. Recent studies have sought to determine who is serving vari- ous target populations. Results demonstr- ate that the case loads of medical professionals, including physicians and nurses, have a higher percentage of chron- ically mentally ill clients than do other mental health professionals. In further studies, human resource needs must be projected, and major factors affecting supply and distribution of mental health caregivers need to be identified. To avoid shortages or oversupplies, forecasting models should relate the need for mental health professionals to services and clien- tele in given localities. In the area of professional education and training, much attention is being paid to identifying problems in the substance of professional training, training needs, and preferred training formats. Generally, studies indicate a consensus among pro- viders on training needs of students and continuing education needs of practition- ers. However, certain areas remain rela- tively unexplored. - Preservice education and training, which prepares students to enter a given profession, must be evaluated. - Research efforts are required to eval- uate the success or failure of collabo- rative training. Indicators of success would be university curricula that reflect new technologies and recent research, quality field placements for students, and joint research projects. - Studies are needed to assess the out- come of collaborative relationships in terms of the public sector’s ability to recruit and retain mental health pro- fessionals. - Itis essential, too, to evaluate existing and new programs to determine the factors in successful collaborations. 46 - More information is needed on the best way to train technicians to become managers and administrators. The outcomes of less costly experien- tial training supplemented by formal skills training and packaged materials must also be evaluated. The core mental health professions of psychiatry, clinical psychology, clinical social work, and psychiatric nursing have been changing since the beginning of the community mental health movement 25 years ago. Each profession has been try- ing to define its role and enhance profes- sional standing. The result is often confusion and conflict. Research needs to determine the effect on these core profes- sions of regulations, which include licen- sure requirements, professional standards, reimbursement mechanisms, and the emergence of new classes of pro- viders. It is important to know how changes in personnel, cost of services, and range and quality of programs vary with changes in regulations. Licensure, for instance, used as a means of rationing, can alter the cultural, racial, and gender mix of the mental health work force. Recruitment and retention of psychiatrists are major issues in the mental health industry today. The number of psychia- trists employed in the public sector has been declining for two decades, with those in CMHC leadership in even greater decline. Medical schools are having prob- lems recruiting psychiatric faculty and fellows. Shortages are most acute in rural areas where CMHCs have fewer affilia- tions with training institutions. The rea- sons for this dilemma and how to overcome it is an important arena for research, not only in the case of psychia- try, but other mental health professions as well. Various staff configurations need to be identified to provide optimal treatment and rehabilitation for specific client ''SERVICE SYSTEMS RESEARCH groups. Models of staffing patterns in given settings should be tested in relation to quality and appropriateness of care, use of services, access to them, client out- come, and cost. Such research should cover: the effectiveness of certain categories of professional and paraprofessional workers in specific contexts; the impact of specific configurations of staff treatment teams; the effects of matching clients and providers based on gender, culture and ethnicity, and age; and the effects of consumer and family members as providers of services. The decrease in State mental hospitals and increase in community care have many implications for mental health workers. Fewer inpatients means smaller hospital staffs. States must give those displaced professionals and paraprofessionals opportunities for comparable employ- ment in the community. The roles of com- munity care providers are also changing as outpatient programs shift from office- based therapies to rehabilitation-oriented outreach programs. Studies are needed on many aspects of redeployment. Growing professional opposition to the shifting locus of care to community mental health staffs is a major problem. Research should identify incentives for profession- als to work with severely mentally ill patients in nontraditional settings, away from office practice. OVERCOMING STIGMA For the past three decades, the primary goal of the American public mental health system has been to shift from an institutionally based system of care for people with severe mental disorders to a community-based system. The underlying vision of community mental health is of mentally ill people living freely as an 47 integrated and accepted part of the community. Stigma is one of the major barriers to achieving this vision. As long as mentally ill people are shunned and feared, they will not be truly inte- grated into the community. The consequences of stigma are many, and they can be devastating. They include exclu- sion from, or limited access to, adequate hous- ing, meaningful work, routine social interactions, and essential services like educa- tion, loans, health insurance, and even drivers’ licenses. Stigma produces discrimination, lone- liness, and loss of hope. To date, research has focused on descriptive studies, revealing how people view mental ill- ness and its victims. It has been shown, for example, that those recovering from mental ill- ness are less desired in the community than ex-convicts. Future research on stigma should concentrate on generating effective strategies to alter attitudes and behavior toward mentally ill people, and on rigorously testing those strategies. In addition, past research has focused on attitudes rather than behavior. It is critical, therefore, to learn more about how people act toward mentally ill people and their families, and why, and how their actions can be changed. Strategies to win community acceptance fall into two broad categories, global and targeted. e Global strategies to change attitudes and behavior among the general public have at times worked effectively for physically handicapped people. Many believe they can work for mentally ill people as well. Primarily, this means countering typical media presentations of mental illness, often by using the media themselves. Questions as to what message to convey to the public open up a number of areas for research. For example, should the biological causes of mental illness be stressed in order to increase the percep- tion of such illness as medical in nature, thus reducing the tendency to blame the victim? Or would it be more advanta- geous to portray the full range and variety of behavioral problems experienced by ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS mentally ill people, showing that, despite disabilities, many are able to function in many aspects of life? In evaluating global strategies, it is important to keep in mind that the media are not the only forces that shape attitudes. Data are needed, for example, to determine the degree to which court- room uses of psychiatry reinforce per- ceptions of mentally ill people as violent. Studies should be directed at testing the power of self-help groups to help change public attitudes toward mentally ill people. Stigma cannot be eliminated in the abstract. Targeted strategies must, there- fore, be aimed toward specific problems. Different approaches will need to be developed and tested in order to over- come discrimination in housing, social isolation, stigmatization by professionals, internalized shame, and discrimination in health insurance, to name some examples. It is important to determine the role of legal and political action in improving public attitudes. Such research could point the way toward a more widespread use of effective approaches to win com- munity acceptance of mentally ill people. Work on targeted strategies provides many opportunities for natural experi- ments and for testing innovative approaches. For example, much unrec- ognized antistigma work occurs in the day-to-day efforts to develop services for mentally ill people. Setting up commu- nity residences, finding jobs, building constituent organizations, advocating for funds, and publicizing positive aspects of mental illness—all these involve de facto antistigma efforts, and they offer a superb natural laboratory for the study of targeted antistigma strategies. It is important to determine the prevalence of various types of violence, as well as the frequency of arrests for different kinds of 48 acts—for example, property crimes as opposed to loitering. Research that ad- dresses other common fears, such as loss of property values near community resi- dences and child molesting, would also be helpful. Studies have shown that although mental health professionals know more than the general public, their attitudes resemble the attitudes common in their socioeco- nomic group. One study showed, for example, that when a patient visits a doc- tor complaining of physical symptoms, the doctor is much less inclined to accept the complaints as valid if the patient is believed to have a history of mental ill- ness. It is thus particularly important to explore the stigmatizing behavior of pro- fessionals and seek ways to reduce it. It is also important to understand how such stigmatizing attitudes develop. Research on attitudes and behavior among segments of the public should con- centrate on tracking changes over time; targeting particular groups who can be helpful; understanding ethnic, cultural, and class differences; and generating hypotheses about how to foster accepting attitudes and actions. It may prove useful to learn more about people who are accepting and helpful rather than focusing on negative attitudes and behavior. Other critical areas for research include the origins of stigma in childhood; how stigma is transmitted; how mentally ill people themselves experience mental health services, particularly if their expe- riences lead them to reject help; and how ethnic and cultural differences shape the attitude and behavior of mentally ill peo- ple and their families. A related problem is public rejection of new housing for individuals with severe mental illness in the local community. How to overcome stigma with its related fears is a critical issue. ''SERVICE SYSTEMS RESEARCH Research on the stigma of mental illness is far more than a matter of theoretical social sci- ence interest. It is a vital component of any overall research effort designed to help enable seriously mentally ill people to lead decent lives in the community. Mental health personnel work hard with their patients to overcome their symptoms, realize their potential, and take their 49 rightful place in society—but full recovery requires society’s willingness to accept them as fully capable members of the community. This acceptance itself is powerful therapy. In this sense, overcoming stigma is absolutely key to fulfilling the vision at the heart of the commu- nity mental health movement. '''' The time is right for significant advances in quality-of-care research for mental health services. -K.B. Wells and R.H. Brook in The Future of Mental Health Services Research, DHHS Publication No. (ADM)89-1600, 1989, page 219. ''''Research Resources s in the case of the earlier National Plan for Schizophrenia Research, it is recognized that the research agenda summarized in this report can be acted upon only if adequate resources are available. Special attention needs to be paid to the foundations required to implement the sub- stantive recommendations offered here for mental health services research. This chapter, therefore, provides recommen- dations for strengthening the links between mental health services researchers and other components of the mental health services com- munity; improving the management of research and strengthening leadership in the field; pursu- ing important research strategies; developing critically needed cadres of services research personnel; and disseminating mental health research information to a variety of target audiences. FORGING ADMINISTRATIVE AND SCIENTIFIC LINKS Mental health service research does not take place in a vacuum. Its success depends on the creation of mutually reinforcing connections with administrative staff and with researchers from related fields, notably health policy and clinical research. Steps for establishing such links are recommended in this section. Relationship to Administrators Unlike the bench scientist or even the clinical researcher, who can work in relatively con- trolled settings, the mental health services researcher works in the field, studying dynamic mental health delivery systems and the finan- cial, organizational, and political environments in which they are embedded. 53 Understandably, the collaboration required between administrative and research staff is not always achieved. Mental health care delivery systems operate in difficult environments and are buffeted by uncertain political and economic forces, and thus, they are sometimes not fully open to objective inquiry and evaluation. Administrators are naturally protective of their agencies and programs, whereas the researcher seeks to objectively ascertain the benefits and efficacy of alternative approaches. Although, in the long run, they share a common interest—the improvement of mental health services—their short-run interests sometimes diverge. Admin- istrators and researchers are also part of differ- ent “cultures,” and thus respond to different expectations and reward systems. Administra- tors seek to enhance their programs, attract new funding, and improve their standing among competitive agencies. On their part, researchers seek to publish scientific articles that meet peer standards and to attain recognition among other researchers. Too often, researchers feel thwarted by administrators, and administrators feel that there is no quid pro quo for the time, inconve- nience, and political risks they assume by mak- ing their organizations vulnerable to research that may question their programs. In bringing these universes together, mutual respect and trust must be developed. ¢ Mechanisms to facilitate greater collabo- ration between service delivery systems personnel and university researchers— for example, the NIMH Public-Academic Liaison (PAL) mechanism—should be encouraged. Those engaged in such efforts must recognize the responsibilities of both parties but also remain cognizant of the difficulties and the time required to develop the necessary trust. While the PAL program represents an important ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS mechanism, it is directed to individual projects and not to the stimulation of a continuing collaboration. It is recom- mended, therefore, that the mechanism be expanded to permit the development of long-term collaborative arrangements between university-based researchers and service systems staff. An important standard in mental health services research is represented by con- trolled clinical trials of mental health service interventions, conducted by ran- domly assigning patients to different interventions. Despite the large numbers of untreated and undertreated patients in public mental health systems that render such studies feasible and ethical, rela- tively few are done. Clinicians and administrators may resist such trials because of an unwillingness to substitute randomization for their own judgments about referrals to particular programs. In developing new collaborative relation- ships between researchers and delivery systems, there must be a recognition of the significance of randomization and the mutual responsibility for facilitating re- search efforts incorporating the process. Services researchers depend on access to data from State and local mental health service systems—for example, data describing specific patient populations, treatment services, and expenditures. Efforts are necessary to help mental health researchers access State informa- tion systems and to evaluate the reliability and validity of data items necessary for research and analytic work. The research community may have con- siderable difficulty in gaining access to study important mental health demonstra- tions. Administrators at the demonstra- tion site may have a stake in the idea being pursued, but not in its evaluation. There is little value in demonstration projects that are not rigorously evaluated, and efforts to ensure and upgrade the evalua- 54 tion of these demonstrations must be pur- sued. In the long term, such a policy will yield more value for the money than the funding of freestanding, unevaluated demonstrations no matter how innovative they appear. The proper function of demonstration monies is to focus on the issues of service development most likely to affect the quality of care, functioning, and welfare of persons with serious mental illnesses. Moreover, demonstrations and their eval- uations should reach the highest research standards. Neither of these goals is reach- able without creative collaboration between researchers and administrators. Relationship to Health-Policy Research Mental health services are substantially shaped by factors external to the mental health sector, including the structure of health insur- ance, health entitlement programs, and social welfare legislation as it affects such varied issues as disability, housing, and social services. The development of effective mental health sys- tems is complicated by the variety of categorical programs on which they depend, administered by various agencies and levels of government. Many programs that affect mental health are developed for broader populations of clients, and these programs and their administrators are often insensitive to the special needs of seri- ously mentally ill people or the agencies that provide necessary services to them. Effective mental health services research requires a full understanding of these entitlements and pro- grams and the ways they interrelate at the point of service delivery. e Some of the programs of great importance to mental health services such as Medic- aid and Medicare have been topics of primary concern to health services researchers generally, but the mental health aspects are poorly developed. Other important areas such as income assistance, housing, and vocational reha- bilitation have been seriously neglected. ''RESEARCH RESOURCES The ways in which such programs come together at the service level, and the op- portunities and barriers they present for developing effective mental health delivery systems, require sustained investigation. The interface between mental health and other medical, social, and welfare pro- grams involves levels of complexity that most mental health services researchers are ill equipped to investigate. Efforts are necessary to bring together mental health researchers and those who work in these areas from the general health service research field. Funding and technical support must be available to facilitate access to Medicare, Medicaid, and other large, important data bases and to create new data files that address crucial issues affecting mental health services. Relationship to Clinical Care Much of mental health services research focuses on clinical practice as it occurs in non- research settings. The health services researcher must understand diagnostic issues, processes of care, course of illness, iatrogenic effects, and many other important details pertinent to mental illness. Clinical perspectives and sensitivity are often essential in conceptualizing and focusing key research questions. Thus, it is crucial to build strong interfaces between clinical practice and health services research in both research and training settings. e Some clinicians from each of the key mental health specialties should receive mental health services research training in order to ensure a proper balance in the research community among different per- spectives. Mechanisms need to be devel- oped to bring more psychiatrists, nurses, and social workers into the mental health services research field, which thus far has attracted primarily psychologists, sociol- ogists, and some economists. 55 RESEARCH STRATEGIES Three important strategies that need much greater use in mental health services research are formative services demonstrations, con- trolled services trials, and modeling studies of the organization and financing of service systems. These strategies are not distinct and isolated; rather, they complement each other. In the typ- ical formative services demonstration, a new and promising service model is developed and its promise is judged. In controlled trials, clear tests are provided of the cost-effectiveness of new service models relative to a standard. In modeling studies, a range of service system effects can be examined in a series of locations. Studies pursuing all three strategies should be carried out within and across a variety of State mental health systems. Formative Research Demonstrations Formative research demonstrations are designed to test a new service model that responds to emergent problems—for example, homelessness or substance abuse among the chronically mentally ill population—and they, are often funded through specific legislation responding to public concern about an urgent problem. In formative demonstrations, the specific service strategies may be only tentatively for- mulated at the start and modified with experi- ence. The purpose is to determine whether there is a service package that is feasible, acceptable to clients, and potentially effective. Program implementation may be studied in detail. Some- times effectiveness is formally assessed by comparing outcomes with those of clients in usual care, but a fully developed controlled trial design is typically premature. Usually, only simple outcomes are measured. Research costs in formative demonstrations are modest. Formative demonstrations should move in the direction of greater rigor. Many similar demonstrations should be con- ducted, with intended target groups that sometimes overlap considerably. The ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS cumulative knowledge gained from a series of demonstrations will be greater if comparable populations are identified, comparable measures are used, and sim- ilar issues are addressed. Standard methods for documenting the implementation and outcome of services for the seriously mentally disabled popu- lation need to be developed. Use of stand- ard measures should be encouraged as a part of all formative evaluations. Guidelines need to be structured and promulgated for evaluating formative services demonstrations, and support should be provided for the development of improved evaluation methods. Such guidelines should be widely distributed and discussed both with researchers and with State and local service providers to encourage strong services research liaisons. States frequently fund formative demon- strations since the States administer the bulk of public mental health services funds and are directly affected by improvements in service effectiveness or cost-effectiveness. State mental health authorities should be encouraged and assisted to use common measurement methods. Controlled Services Trials When a model appears promising and has been designed and described well enough so that implementation measures are attainable, it should be studied in controlled trials at one or more sites. Because of its methodological rigor, evidence from a controlled trial has a compel- ling quality that leads it to weigh heavily in the analysis of policy alternatives. The misgivings of service provider staff and management about controlled serv- ices trials need to be addressed. The fact that university researchers, the staffs of State mental health authorities, and serv- ice providers have different incentives may undermine the basic trust required to negotiate an appropriate research design. If controlled services trials are to be undertaken on a more meaningful scale, potential participants must be allowed to gain a mutual understanding of the tasks involved. Academic researchers and State leaders readily acknowledge that each group is motivated by different aspira- tions and pressures. This makes it difficult to establish trust, which can best develop during an extended period of preparation and collaboration. Support for such long- term developmental efforts requires overt commitment from both State govern- ments and universities. Creative use of research mechanisms to allow time for developmental effort of this sort to be supported should be considered. Guidelines should be promulgated for planning and managing controlled serv- ices trials. These should be widely distrib- uted and discussed both with researchers and with State and local service providers to encourage strong services-research liaisons. Under ideal circumstances, controlled tri- als should follow a logical developmental sequence. A promising innovation is first studied at a single site, with the service innovation compared with the usual serv- ice system. A very promising result from sucha trial motivates attempts to replicate the result in several other settings. The innovation is then dismantled and enhanced so that variations of the innova- tion are compared with usual services to determine its effective components and to improve cost-effectiveness. The entire process should serve as the basis of a major dissemination effort, aimed at help- ing service providers to implement the innovation. Modeling Studies of Service Systems Intact service systems show variation in their organization and financing that allow study of ''RESEARCH RESOURCES the relationship of these characteristics to sys- tem performance. To conduct such studies, investigators must assemble data from complex information systems and public data bases. Linking across more than one data source is often necessary to pursue the relevant research questions. Improved data resources must, there- fore, be developed to support such research. e Existing data sets must be made more useful. For example, identification codes would enable individual clinical data files to be linked more effectively. Data on client transfers between service pro- viders and service systems must be incorporated into information systems. Standardized definitions of terms are critical to the utility of such files. A uniform terminology describing service, provider, and client characteristics must be accepted if this type of research is to be more successful. Modeling studies would be advanced through linking files from various Federal agencies—for example, Social Security Administration, Veterans Administra- tion, Health Care Financing Administra- tion, Rehabilitation Services Ad- ministration, and Department of Justice. New data sets need to be created. System- atic and comprehensive data are needed on the organization and financing of pub- lic mental health services systems throughout the United States, so that researchers can examine the relationships of the organizational and system charac- teristics to service patterns, costs, and out- comes. A description of the supply of mental health services and providers is a natural next step in the development of modeling studies. A uniform description of services, including innovations, is required. Uncharted Approaches ‘Comprehensive strategies for research should not be restricted to the support only of fully 57 formulated, large-scale projects. Needed as well are special mechanisms to support prom- ising researchers willing to explore innovative ideas. The history of research in the mental health field shows that such studies often lay the groundwork for larger efforts of major significance. e Grant applicants are expected to present well developed and conceptualized research plans with pilot data to support their applications. Individuals with inter- est in pursuing uncharted, high-risk topics usually meet with little success through the regular research funding process. This poses a significant barrier for many health services researchers who wish to address issues for which there are as yet no fully established procedures. Moreover, because funded programs of mental health services research are relatively lim- ited, new investigators in mental health services research lack the range of oppor- tunities for piggy-backing pilot data col- lection on an established project or program grant comparable to those in more traditional fields. Grant review groups should become more cognizant of the special needs for exploratory research in the mental health services field. A variety of mechanisms should be put into place to make seed money available for exploratory endeavors. One mecha- nism is the mental health services research centers, which have some discre- tionary funding for young investigators and exploratory projects; a second possi- bility is the small-grant mechanism. A third mechanism is represented by dis- sertation research. Talented doctoral stu- dents should be funded to carry out their dissertation research in the mental health services research field. Such research often proves to be an excellent invest- ment, especially given its reasonable cost. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS RESEARCH MANAGEMENT AND LEADERSHIP The broad scope of the mental health services research enterprise inevitably raises a variety of issues related to management and coordination. A number of such issues are discussed in this section. They deal, in turn, with the creation of special settings in which mental health research teams can flourish; the development and use of data bases for future studies; the establishment of an appropriate hierarchy of research priorities and means for implementing them; the use of seriously mentally ill subjects for research; and stimulation of leadership in the field. Mental Health Services Research Centers Mental health services research remains an underdeveloped field, containing only a small number of experienced researchers and few who have a full grasp of the complex systems that affect the delivery of mental health services. The development of the field requires a critical mass of researchers who can examine important issues and the creation of training environments that will attract talented investigators. e Recognizing the need to develop a stable critical mass of researchers addressing important mental health services research questions affecting seriously mentally ill people, NIMH recently funded five inter- disciplinary research centers for the study of the organization and financing of care for this population. Because such research centers are essential at this point in the development of the field, the center pro- gram should be implemented aggres- sively and expanded. The National Institute of Mental Health should under- take to fully fund at least 10 such services research centers across the Nation. These centers should set up a national network for researchers in mental health services, providing a research registry of senior investigators who might serve as enthusiastic mentors for junior research- 58 ers interested in the field. Such centers might also facilitate the more active movement of researchers among various activities and roles, including teaching, research, administration, and clinical practice. The program should be planned with a long-term developmental strategy and the promise of stable funding so that universities are motivated to allocate tenure track positions to center activities. Universities or States should be encour- aged to invest faculty positions or match- ing funds for centers or other new federally funded collaborative research arrangements. Centers should attempt to leverage their funds to obtain contributions from univer- sities, State departments of mental health, private foundations, and other funding entities. They could serve as foci for bringing together the expertise of their universities to address key mental health services issues on a continuing basis. Improved Data Bases and Research Methods Significant advances in mental health serv- ices research can be made more rapidly if increased attention is given to data and method- ological needs. Mental health services researchers need better access to important mental health data sets that are well documented. The inventories and patient surveys carried out by the National Reporting System should be made available to the mental health services research community in public use data tapes in a timely and well- documented way. Data from federally funded studies should be made available to the research commu- nity after the initial investigators are allowed reasonable preferential access. A strategy is needed for the dissemination of public use data tapes. '' RESEARCH RESOURCES The field of mental health services research is beset with many uncertainties of measurement and analysis that limit the capacity to answer many important ques- tions rigorously. Support should be avail- able to projects designed specifically to improve measurement and analysis in the mental health services research field. Targeting Research Priorities A controversial issue in all areas of science is the degree to which research should depend on investigator-initiated ideas and creativity, com- pared with research directed toward targeted objectives. The history of science suggests that it is difficult to anticipate what knowledge ulti- mately will be relevant, and investigator-initi- ated research is often a very fruitful approach. Even in health service research, issues gener- ated more by investigator interest than immedi- ate policy demands can be important practical building blocks of future service system opera- tions. Examples include early research on health maintenance organizations, hospital and physi- cian reimbursement, and small area variations. Mental health services research should continue to retain a balance between investigator-initiated projects and tar- geted efforts elicited through specific requests for proposals or contracts. A program of grants is needed for devel- opmental studies in selected, critical areas of mental health services research that pose especially difficult and unusual challenges. These kinds of research involve situations in which new problems are emerging faster than typical services research can reasonably track, and from which much confusion has ensued. Examples might include the potential of clozapine, impact of crack cocaine on emergency psychiatric services, changing financial incentives in psychiatric care, the effects of the AIDS epidemic on the functioning of the mental health services system, and the impact of new nursing home regulations on alternatives for 59 severely mentally ill persons. Such issues are receiving relatively little research attention via conventional funding mech- anisms. Exploratory work in mental health services research can be supported through a redefined and revitalized small- grant mechanism, with clear communica- tion to applicants and members of review committees that the process is accessible and receptive to proposals and offers expeditious review and funding. Other mechanisms should be considered as well. Leadership Issues The achievement of the research goals spelled out in this report requires effective leadership by key personnel in the worlds of both services research and service systems. Without such leadership, little progress can be made toward providing comprehensive and effective services for persons with serious mental illnesses. Three critical leadership tasks for the devel- opment of improved collaborative leadership in mental health services systems research are proposed: e Balanced roles and responsibilities must be identified and pursued between the service systems and research communi- ties. The dual involvement must be bal- anced with incentives for both researchers and service system managers. Research- ers should expect to gain from the oppor- tunity to obtain access to data, access to the population being served, and the opportunity to identify important ques- tions and information necessary for research. The service system staff should expect to gain additional expertise in identifying important ideas and in addressing policy questions. Despite the different needs of the research and serv- ices communities, common themes and interests should continue to be identified, priorities established, and compromises worked out. The present level and amount of discussion among leaders of the two ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS sectors are unprecedented; sustained efforts will be needed to move beyond discussion to implementation. State men- tal health commissioners and the gover- nors they serve have an obligation to ensure that steps are taken to protect eval- uation, training, and research activities beyond their tenure in office. For mental health services to go forward, leaders must foster evaluation and research as an integral part of the service system itself, especially at the State level, where systems are usually designed and funded and where data accumulate for a variety of purposes. Creating opportuni- ties must be an “inside” strategy. This means that research activities become an integral part and daily consideration within the service delivery system and that service researchers actively partici- pate in decisionmaking processes within these systems. It is necessary to develop more concep- tual depth and rigor within both commu- nities and more mutual understanding. Leadership must go beyond setting the tone and creating opportunities. The pre- vailing approach of both service systems and, unfortunately, much service systems research is developed largely from values, ideologies, and assumptions that remain obscure. There is need for both the research and service communities to sup- port the conceptual thinking necessary to create better questions and set a clearer course for research. Seriously Mentally Ill Persons As Research Subjects Productive mental health services research often depends on the direct assessment and fol- lowup of the seriously mentally ill population, especially given the importance of outcome studies. Although such research places human subjects at little or no risk—and, indeed, some find participation to be therapeutic—care must be exercised in the pursuit of such studies. 60 Appropriate safeguards should, therefore, be practiced. e Committees focused on human subjects appropriately concern themselves with the potential threats to informed consent due to the mental impairment of the sub- jects in mental health services research. Such concerns should not, however, be allowed to lead to the development of overly long and excessively disturbing informed consent procedures. Failure to receive informed consent because of unnecessarily extreme protective meas- ures poses a major threat to the availabil- ity of unbiased samples of adequate size for important investigations. Investigators should be informed of accepted policy for obtaining unwritten verbal consent to participate in research. The National Plan for Schizophrenia Research includes a lengthy discussion of the sensitive issues related to the use of human subjects. These deserve careful attention and endorsement. RESEARCH PERSONNEL AND CAREERS Society confers great prestige on basic sci- ence and clinical research. By contrast, mental health services research is a relatively new and less prestigious field that has more limited fund- ing and far fewer established research mentors. Unlike basic research, mental health services research does not give young investigators great control over research variables. Instead, the work is carried out in natural field settings where a complex assortment of factors—indi- vidual, organizational, economic, and politi- cal—affect the success of research designs. Novice investigators frequently view such con- ditions as barriers to research rather than as dimensions of the research problem. Many other conditions discourage people from pursuing a career in mental health services research. The education is costly; few mentors are available to guide candidates into a career in ''RESEARCH RESOURCES this area; competition for funding is stiff; and even established mental health services researchers are generally not well paid. If mental health services research is to develop successfully, it must compete aggres- sively for talented young investigators. Although the field has begun to develop a criti- cal mass, it faces difficult challenges. A rigor- ous recruitment strategy, an inviting career structure, and well-thought-out implementation strategies are needed. This section presents rec- ommendations in all three areas. Recruitment Incentives The present supply of mental health services research personnel is not equal to the task of carrying out the kind of research initiatives detailed in this report. Not only is the current work force too small, but in a number of areas, it is inadequately trained. e Recruitment efforts for mental health services research should focus on attract- ing a broad spectrum of researchers from such varied disciplines as psychology, psychiatry, nursing, social work, opera- tions research, policy analysis, health care administration, economics, and sociol- ogy. This will greatly enlarge the pool of potential researchers and will improve the recruitment of researchers from minority groups as well. A more professionally diverse mix of investigators would encourage research that is broader in scope, more clinically relevant, and more sensitive to the realities of caregiving, characteristics that are needed to improve service system designs. e Recruitment should focus on individuals who have completed doctoral study and who are thoroughly grounded in the the- ory and methodology of their basic dis- cipline. Being a good economist, sociologist, statistician, or research clini- cian is what makes an investigator partic- ularly valuable to the research team.: Mental health services research requires a high level of sophistication and an inte- 61 gration of clinical and service issues that can best be accomplished by an estab- lished professional. If candidates first acquire competence in a field, they can, in their postdoctoral training, focus exclu- sively and in depth on research into men- tal health services—both its conceptual and its practical aspects. In addition, a postdoctoral emphasis would help create the interdisciplinary focus that is essential to mental health services research yet sig- nificantly lacking in current clinical train- ing programs. The generally low stipends offered for postdoctoral study in mental health serv- ices research make it hard to attract out- standing candidates. It is essential to acknowledge that career paths normally differ among different professional groups, especially among the various types of clinicians. Currently, postdoc- toral stipends tend to be based on number of years of postdoctoral experience. This rewards new physicians for time spent in internship and residency, but penalizes other mental health professionals, such as nurses and social workers, who typically pursue a doctorate in midcareer. Fre- quently, these professionals are the pri- mary service providers for severely mentally ill patients, and their perspec- tives are greatly needed in mental health services research. Yet because of inability to live on the available stipends, they are unlikely to pursue postdoctoral research training. The present system also means that, for nurses and social workers, sti- pends for training in mental health serv- ices research are not competitive with other offers that recognize their stage of career development and level of clinical expertise. As one way of meeting this need, a program like the Public Health Services Epidemiology Fellowship should be set up for mental health services research. Considerable emphasis should be placed on using advanced postdoctoral and mid- ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS career training to bring good investigators into mental health services research from the social and behavioral sciences as well as from the mental health professions. For many reasons, there are growing indica- tions of a developing shortage in the social and behavioral science recruitment pool for mental health services research. In the past 10 years, graduate enrollment has dropped significantly in some of the fields that provide talented people for mental health services research. It will be critical to vigorously support predoctoral training in the social and behavioral sci- ences relevant to mental health in the coming decade if there is to be a pool of well-trained scientists to draw upon. Career development among minorities should be particularly encouraged, with special efforts being made to recruit more minority investigators into mental health services research. Members of minority groups have few role models in this field, and they may be particularly affected by the disincentives to careers in mental health services research. Moreover, train- ing for such careers occurs mainly at the postdoctoral level, an area where minori- ties are underrepresented. Research has not focused sufficiently on ethnic differ- ences and on the ways in which different cultural groups perceive mental health issues and services. Recruiting more minority researchers would be one way to increase the number of investigators sen- Sitive to such issues. Career Structure Ultimately, recruitment can succeed only if it leads toward a stable, rewarding career. A better career structure for mental health services research will do far more than merely attract new investigators; eventually, it will result in a larger cadre of senior researchers whose guid- ance, support, and encouragement will draw younger investigators into the field for years to come. 62 e Researchers must know that mental health services research offers a challeng- ing career with stable sources of funding. There should be an expansion of research career development awards and long- term grant support, as well as greater commitment to research centers of excel- lence that are engaged in substantial training. Mechanisms should be developed to allow individuals in mental health serv- ices to move freely from one role to another—for example, by leaving admin- istration or clinical practice to spend time in research or teaching. Encouraging greater career flexibility and diversity in mental health services research will enable investigators to sustain their enthusiasm and bring new perspectives to their work. Mental health services research should not be limited to activities in a relatively few academic departments. There should be an eventual movement of researchers from these primary sites to rural and urban communities throughout the country. Mental health services research is of no use unless its findings are disseminated and implemented. Therefore, such research must be linked to mental health departments and delivery systems across the Nation. Although this may require funding small exploratory projects and less established researchers, it can greatly expand the impact of mental health serv- ices research. Strategies for Implementation Implementing the above recommendations will require more than increasing the total amount of research monies available for mental health services research. It will mean creating new mechanisms to attract people to the field and expanding existing approaches. Further- more, the entire effort will founder unless chal- lenging questions in mental health services research are articulated and communicated to ''RESEARCH RESOURCES prospective interdisciplinary researchers. Accomplishing this goal will require nontradi- tional approaches. e It is essential both to expose prospective researchers to the field of mental health services research and to try to get them interested in it. This can be done by sup- porting mental health services research interest groups in a variety of professional associations such as psychiatry, nursing, psychology, economics, public health, and health care administration. Invitational conferences and open work- shops for professionals from a variety of disciplines should be conducted. These conferences would highlight interesting questions in mental health services research and communicate them to pro- spective interdisciplinary researchers. To publicize questions and findings in mental health services research, guest edi- torials and special columns should be sub- mitted to a wide variety of professional journals. In addition to helping attract new investigators from a variety of dis- ciplines, this would disseminate knowl- edge about mental health services and the research on them. Too frequently, contacts among research- ers are insular and occur within dis- ciplines only. Directories of individuals from various disciplines relevant to men- tal health services research and from minority groups should be developed and maintained. This will make it easier to contact people for possible involvement in multidisciplinary studies. Research grant applications must be proc- essed more quickly. Priority should go to proposals that include participation from multiple disciplines as well as those that involve both junior and senior researchers. Special training programs must be set up to link public service providers and administrators with academic researchers 63 and clinicians. Sponsored with State, uni- versity, or private monies, these would have the goal of increased use and dissem- ination of research findings in mental health services. THE DISSEMINATION OF RESEARCH The services research process, as well as the translation of research into practice, is depen- dent on the timely and effective dissemination of findings to a broad range of users. It is critical, therefore, to emphasize dissemination as an ele- ment of its full range of activities. By integrating dissemination into the broad range of mental health services activities, there will be an increased likelihood that advances made in research will become translated into more effec- tive mental health care systems. Four distinct consumers need to be kept in mind. These are researchers, clinicians, the pub- lic at large, and administrative and policymak- ing personnel. Researchers Researchers are generally successful in dis- seminating their findings to other researchers through presentations at national meetings and publication in scientific journals. Nevertheless, greater attention needs to be paid to the needs of researchers in the mental health services field. e Consideration should be given to the development of a new mental health serv- ices research journal devoted to repub- lishing important research findings and review articles. To enrich scholarship, a format that resembles the Behavioral and Brain Sciences Journal might be consid- ered. This journal features recent research and theory together with open peer commentary. A clearinghouse modeled after the PHS National Clearinghouse for Alcohol and Drug Information should be considered for the mental health services area. Such ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS a clearinghouse would collect, classify, store, and, most importantly, disseminate information on mental health services research in response to inquiries on spe- cific topics. Clinicians The responsibilities of clinicians often defeat even their best efforts at keeping abreast of research developments. Special attention, there- fore, needs to be paid to this group, and a multifaceted approach should be considered. For some clinicians, summaries of recent important journal articles and critical reviews are a preferred source of informa- tion. National professional organizations publish scholarly journals with large cir- culations. These journals are appropriate vehicles for publishing critical reviews of important topics in the mental health serv- ices area. To reach clinicians who do not regularly read scholarly publications, regional or local conferences should be sponsored. These small conferences could provide presentations of relevant developments in the field and practical technical assistance. Direct mailing has been used successfully to educate clinicians about important medical developments. Specialty mail- ings that address new findings in mental health care delivery could be used to bring new information to clinicians. The possi- bility of starting a newsletter for clinicians should be explored. Existing models of dissemination strate- gies should be examined for their value. For example, to procure valid research information for dissemination, conferen- ces of experts might be convened on selected topics. The Office of Medical Applications of Research at the National Institutes of Health has employed this strategy by organizing consensus devel- opment conferences to synthesize and report on medical topics to assist physi- 64 cians with clinical decisionmaking. NIMH should consider using a similar strategy to develop an informed consen- sus on various key issues related to mental health services. The Public In the final analysis, the public represents the key target for information. It is difficult to envis- age a more informed use of existing services— or a more articulate voicing of needs—without good sources of valid information. Public education is most efficiently achieved through the mass media. A recent community survey found that the public receives most of its health informa- tion through printed materials, television, and informal networks. Although the last medium is not readily amenable to direct intervention, the popular press and televi- sion are important and relatively untapped resources for conveying infor- mation about mental health services. NAMI and the National Mental Health Association should also be called upon to assist in and provide opportunities for public education. As important advocates for better services, they need to be kept fully involved and informed as research unfolds. Consideration should be given to devel- oping a mechanism to repackage signifi- cant mental health policy research findings in a format that would be of interest to the media. For example, a suc- cinct summary of important develop- ments in mental health services might be generated and distributed to various media organizations. An easy-to-read, brief fact sheet analogous to the “Age Page” developed by the National Institute on Aging could report topical mental health services issues in nontechnical lan- guage. Voluntary mental health organiza- tions, foundations, and advocacy groups ''RESEARCH RESOURCES would benefit from being kept up to date need to be developed among the Federal Gov- ernment and State and local infrastructures. through such a fact sheet as well. e Concerted efforts should be made to inform news organizations of important developments in mental health services research. Certain medical journals with high visibility have dealt with the media in a marketing manner by coordinating information releases so as to allow the press proper lead time to bring the story to a national audience. Similar approaches could be employed with important mental health services research findings. By increasing newspaper, tele- vision, and radio coverage of mental health services issues, the public will become more aware of the current prob- lems with mental health delivery and the urgent need for exploration of strategies that promise improvement. Administrative Staff and Policymakers The timely transfer of mental health services knowledge to policymakers is as vital as its initial acquisition. Efforts should be made to disseminate mental health services information at the Federal, State, and local levels. Linkages 65 Elected officials with a known interest in mental health issues should be routinely kept informed of promising develop- ments in the study of mental health orga- nization and finance. Efforts should be made to increase the visibility of mental health services research in widely read policy journals such as Health Affairs. The Research Institute of the National Association of State Mental Health Pro- gram Directors should be invited to assist in coordination and dissemination efforts. At the State level, State mental health authorities should include dissemination activities as part of their State planning. Consumers, families, and advocates should be invited to participate in formu- lating dissemination strategies. At the national level, steps should be taken to develop a comprehensive plan for dissemination of future research find- ings. An NIMH Task Force on Knowl- edge Exchange should be established to guide these efforts. ''''Epilogue he problems addressed in this report are not new. In some ways, these problems of delivering effective, humane care have been present for centuries. In an examination of the historical context for problems in delivering care to peo- ple with severe mental disorders, Alexander Leighton, a psychiatrist who was one of the pioneers in applying a public health approach to mental illness, identified “four great barriers to treatment and care” that have existed over the past two centuries of modern psychiatry .* The first three barriers described by Dr. Leighton are also addressed in this report: e The heterogeneity of mental illness e The emotions stirred by mental illness e Insufficient use of science The fourth barrier—extensiveness, or “too many goals and too few priorities” —remains to be addressed. This report presents an impress- ive, perhaps even overwhelming, set of recom- mendations. But the process of implementing them will require that these many goals be trans- formed from a long list to a national strategy. That process of implementation will continue throughout the next 2 years under the direction of the National Advisory Mental Health Coun- cil. As part of that process, an Implementation Strategy will be developed as a second phase of the effort related to this plan. To ensure that this plan is successful, it must reach beyond researchers; it must reach a wide range of consumers, family members, care pro- viders, service administrators, and policymak- ers at the local, State, and Federal levels. For its overall goal of improved care to be met, the plan must become an integral and vital part of their thinking and their everyday activities. This process of engaging a broad range of interests and supporters will be an essential part of the work to develop more precise specification of the priorities to follow in the immediate future and the best way to sequence them. To begin the process of implementation, NIMH has already reorganized all of its services research and related programs into a single com- ponent, the Division of Applied and Services Research, which will focus on fulfilling the aims of this plan in collaboration with other compo- nents of the Institute. In addition to funding research grants and research demonstrations, this Division sponsors programs that offer tech- nical assistance to the public mental health sys- tem and provide aid for capacity-building efforts like State Human Resource Develop- ment projects and State Service System Im-- provement grants. It also manages the Federal responsibility for State planning, as mandated under Public Law 99-660, to develop com- prehensive community-based systems of care for people with serious mental illnesses. By consolidating these programs, NIMH will pro- mote in a coordinated way a deliberate and targeted effort to bring the full power of scien- tific research and public health policy and sys- tem development activities to aid States in their service provision responsibilities. e Even before final adoption of this report, the Division issued two research an- nouncements, one for research on effec- tiveness and outcomes of mental health services and one on disability and rehabil- itation services, that are derived from the most urgent recommendations of this plan. e The Acting Director of NIMH, Dr. Alan Leshner, also established the Task Force on Knowledge Exchange, as recommend- * Leighton, A.H. Caring for Mentally Ill People: Psychological and Social Barriers in Historical Context. Cambridge, UK: Cam- bridge University Press, 1982. pp. 1-16. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS ed in this report, to begin the process of | These steps are a beginning, but the task is considering how to enhance efforts by mammoth. The goals can only be achieved by a NIMH and other organizations to pro- firm resolve to find better ways to care for mote effective knowledge transfer. people who are ill. 68 ''Budget Recommendations oO support the needed research, the National Advisory Mental Health Council has developed a budget pro- posal to allow judicious expansion of the activities recommended in this plan. The strategy envisioned in this set of budget recom- mendations entails shifting the emphasis over the next 6 years from capacity development to research support to knowledge exchange. Capacity development—In the first 3 years (FY 1992-94), there would be a rapid infusion of funds for research capacity development through the use of mechanisms that support research train- ing, research career development for sci- entists, and projects designed to initiate new research in new settings. In the final 3 years of the plan (FY 1995-97), this support would stabilize for these mecha- nisms as the field began to reach maturity. Research support—In the second phase, especially in FY 1993-96, support for the fundamental research categories would increase. This category includes research project grants, research demonstrations, and research centers. Funding for these research projects would taper to normal incremental growth by FY 1997, once a reasonable expansion of the field had been achieved. Knowledge exchange—In the third phase, beginning gradually in FY 1992 and accelerating in FY 1995-97, efforts to support knowledge exchange would be emphasized as research findings appeared 69 that would justify an intensive effort to apply the results widely in real-world settings. The overall scheme for this budget strategy is presented in table 1. It is based on a detailed analysis of current NIMH funding, as shown by each area in table 2 for FY 1990. That table also demonstrates how the FY 1992 amounts could be increased using conservative estimates about the current readiness of the field. In addition to this overall strategy, associated programs like the State Human Resource Devel- opment (HRD) program and studies of treat- ment efficacy (such as the Treatment Strategies for Schizophrenia study) are displayed as an addendum to the tables. The State HRD pro- gram uses clinical training funds to support manpower development in the public mental health system and is viewed as an integral part of the mechanisms for improving care. Ideally, this program would be closely tied to findings from research supported in this plan, including research on effective programs for community services as well as more focused research on recruitment, training, retention, and quality assurance for skilled clinicians in the public system. The Treatment Strategies for Schizophrenia study and similar studies of treatment efficacy were featured in the National Plan for Schizo- phrenia Research, and this line item is continued in this report to highlight the continued need for research to find new and better clinical treat- ments for schizophrenia and other severe disorders. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS Table 1. Budget summary: Recommended NIMH budget to implement the National Plan of Research To Improve Care for Servere Mental Disorders (in millions of FY 1990 dollars) Last year Future years FY90 FY 92 FY93 FY94 FY95 FY96 FY 97 Research Research Projects . 97> SS 72 121 170 220 225 Research Demonstrations 12.4 20.0 27 30 35 40 48 Research Centers aS 122 20 23 27 29 30 Research capacity development Research Scientist Awards 0.5 L5 4 6 8 9 10 Research Training 22 > Be 11 12 16 17 18 State Research Capacity Projects ot 7S 11 14 16 16 16 Developmental Awards 0.0 1.9 4 6 7 2 d Knowledge exchange Knowledge Exchange Programs rT 33 ° 7 8 11 15 TOTAL 47.1! 90.5'. -:154 219 287 349 369 Associated programs State Human Resource Development 3.1 4.0 7 10 12 14 16 Studies of Treatment Efficacy Do 9.8 12 15 19 24 30 ' This total includes funds from all NIMH appropriations, including research project grants, research centers, block grant set-aside, research training, AIDS project grants, McKinney demonstrations, and research demonstrations. 70 ''BUDGET RECOMMENDATIONS Table 2. Detailed budget for FY 1990 and FY 1992: The National Plan of Research To Improve Care for Severe Mental Disorders (in millions of FY 1990 dollars) Last year Future years FY90 FY92 FY93 FY94 FY95 FY 96 FY 97 Research projects! (total) 19.7 37.8 72 121 170 220 225 Clinical services research (subtotal) 12.4 20.0 36 61 85 110 113 Epidemiology & service use 3.9 6.5 Assessment 2.8 4.0 Treatment 2.8 3.5 Rehabilitation 2.8 4.0 Outcome 0.1 2.0 Service systems research (subtotal) 73 178 36 60 85 110 112 Data collection (contracts) 1.0 3.0 Community programs of care 0.8 3.0 Structure of care 1.1 2.5 Financing 2.5 4.0 Human resource development 0.0 1.0 Legal issues 1.7 3.5 Stigma 0.2 0.8 Research demonstrations 12.4 20.0 27 30 35 40 48 Community support program Vocational rehabilitation 0.7 1.3 Housing 0.2 1.0 Case management 3.9 4.0 Crisis interventions 1.1 2.0 State 99-660 demonstrations 0.0 1.0 Housing and homeless demonstrations 5.9 7.0 Rural demonstrations 0.2 1.7 Co-occur demonstrations 0.0 1.0 CSP Centers 0.4 1.0 Research centers 5.5 13.2 20 23 27 29 30 Organization & financing 2.1 8.0 Self-help 0.3 0.5 Rural 0.2 0.5 Minorities 1.9 3.0 Clinical research centers 1.0 1.2 Other centers 0.0 0.0 71 ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS Table 2. Detailed budget (continued) Last year Future years FY 90 PY 92 “FY SS. FY 94 PY). EY - By 9? Research Scientist Awards Research training Institutional Fellowships Minority supplements Dissertation awards State research capacity projects Data collection Services research Developmental awards Small grants Research Facilitation Awards? PAL Development Grants Promising Innovative Methods Knowledge dissemination New initiatives Project DART Center—Homelessness Center—CSP R&T Center—Self-help TOTAL Associated programs State Human Resource Development Studies of Treatment Efficacy 0.5 2.2 acd 0.0 0.1 5.1 4.4 0.7 0.0 0.0 1.7 0.0 1.0 0.4 0.1 0.2 47.1 3.1 7.5 1.5 33 3.0 1.0 1.0 0.3 15 6.0 1:5 1.9 0.4 0.3 0.7 0.5 3.3 1.0 1.3 0.5 0.3 0.2 90.5 4.0 9.8 4 11 11 154 7 12 6 12 14 219 10 15 8 16 16 287 12 19 9 10 17 18 16 16 7 a 11 15 349 369 14 16 24 30 ' Includes grants and contracts on severely mentally ill persons, persons with cooccurring substance abuse and severe mental illness, and homeless mentally people. Studies of HIV infection are included only if they deal mainly with severely mentally ill persons. Grants are drawn from all NIMH programs. 2 As recommended by the Research Resources Panel, this new mechanism includes (1) rapidly available seed money for pilot work to develop full research applications and (2) support for obtaining available data sets for proposed projects. 12 ''Acknowledgments his report is issued by the National Advisory Mental Health Council of the National Institute of Mental Health. In behalf of the National Advisory Council, a subcommittee of three members—Dr. James S. Jackson, Dr. Joseph Coyle, and Ms. Norma Lagomarsino—super- vised the final preparation of the report. The report was drafted by Dr. Julius A. Segal, who was the principal science writer for the National Plan for Schizophrenia Research. It has been edited by Dr. Jack D. Burke Jr., Direc- tor of the NIMH Division of Applied and Serv- ices Research, and other NIMH staff. It constitutes a summary of the detailed review and set of recommendations created by 73 the three panels of experts who were convened in May 1989 at the request of Dr. Lewis L. Judd, then the NIMH Director, and who deliberated through early 1990. Work of the panels was aided by Dr. Burke and by Dr. Ira D. Glick, the Senior Science Advisor to the NIMH Director from 1988 to 1990, with assistance from numer- ous NIMH staff members and from Mr. Dennis Jones, who provided support and advice while serving as liaison to the National Advisory Council. The panel reports are being published separately as a resource to the field. This section lists the members of the Advi- sory Council and of the three panels as well as the special consultants and NIMH staff who contributed to the preparation of these materials. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS National Advisory Mental Health Council (1990 - 1991) Alan I. Leshner, Ph.D. Acting Director National Institute of Mental Health Samuel J. Keith, M.D. Acting Deputy Director National Institute of Mental Health Rosalind D. Cartwright, Ph.D. Rush University Chicago, Illinois Joseph T. Coyle, M.D. The Johns Hopkins University Baltimore, Maryland Felton J. Earls, M.D. Harvard University Boston, Massachusetts Jean Endicott, Ph.D. Columbia University New York, New York L. Patt Franciosi, R.N., M.S. National Mental Health Association Whitefish Bay, Wisconsin Rita T. Hollings Washington, D.C. James S. Jackson, Ph.D. University of Michigan Ann Arbor, Michigan Dennis R. Jones, M.S.W., M.B.A. Department of Mental Health and Mental Retardation Austin, Texas David J. Kupfer, M.D. University of Pittsburgh Pittsburgh, Pennsylvania Norma Lagomarsino Washington, D.C. Angela B. McBride, R.N., Ph.D. Indiana University Indianapolis, Indiana Dominick P. Purpura, M.D. Yeshiva University Bronx, New York Former member Lewis L. Judd, M.D. (NIMH Director, 1988-1990) Universityof California, San Diego San Diego, California 74 ''ACKNOWLEDGMENTS Clinical Services Research Panel Clifford Attkisson, Ph.D. (Chair) University of California, San Francisco San Francisco, California Judith Cook, Ph.D. Thresholds Research Institute Chicago, Illinois Marvin Karno, M.D. UCLA School of Medicine Los Angeles, California Anthony Lehman, M.D. University of Maryland Baltimore, Maryland Thomas McGlashan, M.D. Yale University New Haven, Connecticut Herbert Meltzer, M.D. Case Western Reserve School of Medicine Cleveland, Ohio Michael O’Connor, M.D. (former Commissioner of Mental Health, California) Salinas, California Donald Richardson National Alliance of the Mentally Ill Los Angeles, California Abram Rosenblatt, Ph.D. University of California, San Francisco San Francisco, California Kenneth Wells, M.D., M.P.H. The RAND Corporation and UCLA School of Medicine Santa Monica, California Janet Williams, D.S.W. New York State Psychiatric Institute New York, New York Principal NIMH Staff Liaison: Ann A. Hohmann, Ph.D., M.P.H. 75 ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS Service Systems Research Panel Donald M. Steinwachs, Ph.D. (Chair) The Johns Hopkins University Baltimore, Maryland Howard M. Cullum, M.P.H. Secretary of Health and Human Resources Richmond, Virginia Robert A. Dorwart, M.D. Harvard University Cambridge, Massachusetts Laurie Flynn National Alliance for the Mentally Ill Arlington, Virginia Richard Frank, Ph.D. The Johns Hopkins University Baltimore, Maryland Michael Friedman Mental Health Association of Westchester White Plains, New York 76 Marvin Herz, M.D. University of Buffalo Buffalo, New York Edward P. Mulvey, Ph.D. Western Psychiatric Institute and Clinic Pittsburgh, Pennsylvania Lonnie Snowden, Ph.D. University of California at Berkeley Berkeley, California Mary Ann Test, Ph.D. University of Wisconsin Madison, Wisconsin Leslie S. Tremaine, Ed.D. West Jefferson Mental Health Center Harvey, Louisiana Principal NIMH Staff Liaison: Charles Windle, Ph.D. ''ACKNOWLEDGMENTS Research Resources Panel David Mechanic, Ph.D. (Chair) Rutgers University New Brunswick, New Jersey Joseph Bevilacqua, Ph.D. Department of Mental Health Columbia, South Carolina Howard Goldman, M.D., Ph.D. University of Maryland Baltimore, Maryland William Hargreaves, Ph.D. San Franciso General Hospital San Francisco, California James Howe National Alliance for the Mentally Ill Arlington, Virginia 77 Martha Knisley, M.A. Ohio Department of Mental Health Columbus, Ohio Donald J. Scherl, M.D. State University of New York Brooklyn, New York Gail Stuart, Ph.D., R.N. Medical University of South Carolina Charleston, South Carolina Michael Bruce Unhjem Blue Cross/Blue Shield of North Dakota Fargo, North Dakota Principal NIMH Staff Liaison: Thomas Lalley, M.A. ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS Linda H. Aiken, Ph.D. University of Pennsylvania Philadelphia, Pennsylvania William A. Anthony, Ph.D. Boston University Boston, Massachusetts Boris M. Astrachan, M.D. Yale University New Haven, Connecticut Joseph D. Bloom, M.D. Oregon Health Sciences University Portland, Oregon Timothy F. Champney Ohio Department of Mental Health Columbus, Ohio William J. Derisi, Ph.D. California Department of Mental Health Sacramento, California Susan Dime-Meenan National Depressive and Manic Depressive Association Chicago, Illinois Robert E. Drake, M.D., Ph.D. Dartmouth Medical School Hanover, New Hampshire Robert O. Friedel, M.D. Charter Medical Corporation Richmond, Virginia Linda K. George, Ph.D. Duke University Medical Center Durham, North Carolina James R. Greenley, Ph.D. University of Wisconsin Madison, Wisconsin Oscar Grusky, Ph.D. University of California Los Angeles, California Consultants 78 Agnes B. Hatfield, Ph.D. University of Maryland Greenbelt, Maryland Barbara E. Havassy, Ph.D. University of California, San Francisco San Francisco, California Michael F. Hogan, Ph.D. Department of Mental Health Hartford, Connecticut Dale L. Johnson, Ph.D. University of Houston Houston, Texas Elgin P. Kintner, M.D. Alliance for the Mentally III Maryville, Tennessee Ellie Kohn National Mental Health Association Alexandria, Virginia Judith R. Lave, Ph.D. University of Pittsburgh Pittsburgh, Pennsylvania Robert P. Liberman, M.D., Director Brentwood VA Medical Center Los Angeles, California Bentson H. McFarland, M.D., Ph.D. Oregon Health Sciences University Portland, Oregon Thomas G. McGuire, Ph.D. Boston University Boston, Massachusetts Dale E. McNiel, Ph.D. University of California, San Francisco San Francisco, California Arthur T. Meyerson, M.D. Hahnemann University Philadelphia, Pennsylvania ''ACKNOWLEDGMENTS Juan Mezzich, M.D. University of Pittsburgh Pittsburgh, Pennsylvania John Monahan, Ph.D. University of Virginia Charlottesville, Virginia Carol T. Mowbray, Ph.D. Department of Mental Health Lansing, Michigan Mark Olfson, M.D. Cornell University Medical College New York, New York Herbert Pardes, M.D. Columbia University New York, New York Gordon L. Paul, Ph.D. University of Houston Houston, Texas Harold A. Pincus, M.D. American Psychiatric Association Washington, D.C. Orlando Rodriguez, Ph.D. Fordham University Bronx, New York Joseph Rogers Project SHARE Philadelphia, Pennsylvania Lloyd H. Rogler, Ph.D. Fordham University Bronx, New York Dee Roth, M.A. Ohio Department of Mental Health Columbus, Ohio Leslie J. Scallet, J.D. Mental Health Policy Resource Center Washington, D.C. 79 Nina Schooler, Ph.D. Western Psychiatric Institute and Clinic Pittsburgh, Pennsylvania W. Richard Scott, Ph.D. Stanford University Stanford, California Steven Segal, Ph.D. University of California Berkeley, California Miles F. Shore, M.D. — Massachusetts Mental Health Center Boston, Massachusetts Donald L. Shumway, M.S.W. Division of Mental Health and Developmental Services Concord, New Hampshire Stanley Sue, Ph.D. University of California, Los Angeles Los Angeles, California Linda A. Teplin, Ph.D. McGraw Medical Center Chicago, Illinois James W. Thompson, M.D., M.P.H. University of Maryland Baltimore, Maryland E. Fuller Torrey, M.D. St. Elizabeth’s Hospital Washington, D.C. Bryant L. Welch, J.D., Ph.D. American Psychological Association Washington, D.C. Professor John K. Wing World College of Psychiatrists London, England ''CARING FOR PEOPLE WITH SEVERE MENTAL DISORDERS National Institute of Mental Health Staff Jack D. Burke, Jr., M.D., M.P.H. Division of Applied and Services Research Ira D. Glick, M.D. (formerly Senior Science Advisor, Office of the Institute Director) Cornell University, New York, N. Y. Neal Brown, M.P.A. System Development and Community Support Branch Division of Applied and Services Research Sheila Burgard, M.S. Division of Applied and Services Research Kimberly C. Burke, M.S. Office of the Institute Director Ann A. Hohmann, Ph.D., M.P.H. Services Research Branch Division of Applied and Services Research 80 Cille Kennedy, Ph.D. Services Research Branch Division of Applied and Services Research Thomas Lalley, M.A. Services Research Branch Division of Applied and Services Research Jacqueline Parrish, R.N., M.S. System Development and Community Support Branch Division of Applied and Services Research Agnes Rupp, Ph.D. Services Research Branch Division of Applied and Services Research Paul Widem, M.A. Services Research Branch Division of Applied and Services Research Charles Windle, Ph.D. Services Research Branch Division of Applied and Services Research '' i etnatpesnreinnveneentlinite ttlerve 40-20: sume. weet epee edn e-em orttacty ehargy nh '''''' A iN . DHHS Publication No. (ADM) 91- 1762 Alcohol, Drug Abuse: and MEE Health Administration ibis ae ''