key: cord-0933184-4eni261d
authors: Bickenbach, Jerome; Sabariego, Carla; Stucki, Gerold
title: The beneficiaries of rehabilitation
date: 2020-10-22
journal: Arch Phys Med Rehabil
DOI: 10.1016/j.apmr.2020.09.392
sha: 6ec2b6f7f723b5d32698aba1d4ec5ba61209830c
doc_id: 933184
cord_uid: 4eni261d

Recent research, and the actions of the World Health Organization (WHO), have clarified the nature and value of rehabilitation as a key health strategy of the 21st century. Yet it is a challenge to strengthen rehabilitation in national health systems around the world in part because there is not an evidence-based argument that rehabilitation is a good economic and social investment. This argument, in turn, depends on characterizing the current and potential beneficiaries of rehabilitation ̶ people who could benefit from rehabilitation services whether or not, currently, they receive these services. While identifying current beneficiaries is essential for evaluating the current demand for rehabilitation in existing health systems – and making the economic investment case for rehabilitation within national health systems – it is only by characterizing potential beneficiaries that we can identify unmet needs and the potential social impact of rehabilitation. The objective of this paper is therefore to take a preliminary step toward both tasks by offering an overview of intuitively plausible approaches to characterizing beneficiaries of rehabilitation and to highlight limitations and challenges with each approach. We rely on WHO's definition of rehabilitation – and in particular the aim of rehabilitation to "optimize functioning and reduce disability" – as our starting point.

in one or more organ system, and the associated limitations in the capacity to carry 116 out actions, from basic actions of seeing and hearing, moving, communicating, and 117 other daily activities, to more and more complex activities of life and areas of social 118 participation, which, in interaction with the physical, interpersonal and social 119 environment produces disability. Unfortunately, this characterization borders on a 120 tautology: anyone who could benefit from optimizing functioning is a beneficiary of 121 rehabilitation, the aim of which is to optimize functioning in one or more domains. 122

Like most tautologies, although true enough, this one is not very helpful. It is important to be clear that this theoretical limit may include more rehabilitation 138 needs than is, even theoretically, meaningful. We know from the ICF that functioning 139 is a continuous, not dichotomous notion -a matter of "more or less", rather than "yes 140 or no". This creates the following dilemma: since having some level of reduced 141 functioning (even if extremely minimal) in some domain of functioning is a universal 142 feature of human existence, it follows that literally everyone is a potential beneficiary 143 of rehabilitation. Yet it would be absurd to insist that rehabilitation services and 144 supports must be provided to everyone, however minimal the extent of functioning 145 limitation or the most minimal disability. What we have here is a logical issue 146 common to any continuous phenomena and for which the solution is obvious: we 147 need to create cut off points or minimal threshold levels on the functioning and 148 disability continua. Where population norms for functioning domains exist, cut-offs 149 might be referenced to these norms. In any event, negligible decrements in vision, 150 hearing, mobility, muscle strength, respiration, and so on, do not qualify one to be a complex environment, fall beyond some agreed-on threshold level of severity identify 153 candidates as beneficiaries. 154

There is a direct parallel here with the phenomena of multimorbidity associated with 156 aging: an individual may have health problems in several areas -arthritis in the 157 knees, vision and hearing problems, memory or cognitive decline -but although 158 none of these issues, on its own, would qualify as more than mild or moderate in 159 severity, together they may profoundly impact the person's life. The lesson here is 160 that in order to construct a viable model of "functioning limitation" suitable to identify 161 rehabilitation needs, we cannot merely add together the various functioning 162 problems a person may experience. What is required is a summary measure of 163 health that could provide the basis for an emergent, overall limitation to which each to the degree that is socially, politically and economically feasible, but must always 207

seek to "progressively" extend implementation into the future. In short, the human 208 rights approach identifies beneficiaries of rehabilitation as those who, contingent on 209 practical societal limitations, will enjoy, or will be more likely to enjoy, the beneficial 210 outcomes associated with rehabilitation. 211 212 This approach raises several problems. First, it is very unlikely that the beneficial 213 outcomes of optimizing functioning and reducing disability will depend entirely on 214 rehabilitation interventions. So defining a beneficiary in these terms would require an 215 unimaginably complex analysis of the conditions under which any rehabilitation 216 intervention would, in particular instances and all things considered, increase the 217 likelihood of the recipient achieving these benefits. Secondly, we would normally 218 think that a person benefits from rehabilitation even if these specific outcomes are 219 not thereby achieved. Finally and more generally, it is not possible to define 220 rehabilitation beneficiaries in terms of benefits actually or potentially received from 221 rehabilitation without circularity: i.e., a rehabilitation beneficiary is someone who 222 benefits from rehabilitation. 223

There is another fundamental issue raised by the CRPD: does a beneficiary of 225 rehabilitation have to be a person with disabilities? Of course, in one sense this is 226 or more functioning domains, so an intervention designed to optimize sub-optimal 228 functioning can only benefit a person with disabilities. Unfortunately, the problem is 229 deeper than this. 230 231

Arguably, there are two senses of the phrase "person with disabilities".

[26] The first 232 sense is that just mentioned, namely anyone with sub-optimal functioning in some 233 domain. As this sense of the phrase applies to anyone at all with sub-optimal 234 functioning, it might be called the universal sense of the phrase. But the far more 235 common sense of "person with disabilities" is that of an individual who self-identifies, 236 or is socially identified as a person with disabilities. In this sense, a person with 237 disabilities has a social identity and is a member of a social sub-population, indeed a 238 recognized vulnerable or marginalized group. It is in this sense that the CRPD is 239 operating. People in this sub-population are perceived (and perceive themselves) to 240 be a distinct minority group who have been historically disadvantaged in many ways, 241

including diminished or limited access to rehabilitation services. The CRPD is a 242 human rights document designed specifically to address that injustice. 243

It is an indisputable fact that people with disabilities constitute a minority identity who 245 have historically been disadvantaged and discriminated against in many ways. That 246

is not the issue. Yet, while there is a social obligation to remedy this and ensure that 247 people with disabilities have access to rehabilitation services, at the same time 248 rehabilitation is not a health strategy exclusively reserved for this group. Rather, a 249 beneficiary of rehabilitation surely must include anyone who can benefit from a 250 service the aim of which is to optimize functioning. In the end, although the human 251 rights perspective may not be useful as a way of operationalizing the notion of a 252 rehabilitation beneficiary, it does leave us with an important insight: rehabilitation is a 253 health service for everyone, not some specific minority -self-identified or otherwise. 254

The human right to rehabilitation is, as it was intended to be, a universal human The discussion has been perhaps too abstract. If the task is to determine who is a 262 beneficiary of rehabilitation -both potentially and in current practice -we need to 263 turn to the health system itself and focus on actual service delivery. As a healthcare Nonetheless, the OECD system structures payment arrangements consistently and 293 its framework of services and boundary decisions are made to reflect and rationalize 294 existing payment regimes, whether public, private, or mixed. 295

Identifying beneficiaries of rehabilitation as recipients of rehabilitation services that 297 are reimbursed in terms of an accounting system has the obvious benefit of aligning 298 theory with practice. A system of health accounts equates "service provided" and 299 "service funded", and then indirectly identifies beneficiaries as anyone who could 300 benefit from the services that are actually provided. Realistically, only someone who 301 called a beneficiary of rehabilitation. That is the intuitive strength of this approach, 303 but it is also its drawback. Using health accounts to identify the class of beneficiaries 304 of rehabilitation restricts that class to those for who received services have been 305 reimbursed, which of course does not help us to identify those who could have 306 benefited from rehabilitation but, for whatever reason, did not. 307 308

The reimbursement approach does address one of the two tasks we have, namely to 309 identify actual rehabilitation service users in terms of a typology of user groups. In 310 most countries, moreover, these data are readily available, so it is feasible to benefit from rehabilitation services, society will inevitably have to decide who will be 427 a beneficiary and who will not. This will require a decision about which of the 428 approaches described above are best suited to identify current beneficiaries of 429 rehabilitation. In addition, the decision of who should be included in this group in the 430 future will require a political negotiation based on an economic evaluation of these 431 services, determined either in terms of consumer preferences, satisfaction or some 432 measure of utility. We know of no national-level efforts currently underway to carry 433 out this economic investment case for rehabilitation. Nonetheless, the language of 434 functioning can guide us as it links rehabilitation services directly to what matters to 435 people about their health -the activities they can perform, the social roles available 436 to them, and the goals and aspirations they can achieve. And for this reason, it is 437 essential for the provision of rehabilitation that relevant functioning measures -438 clinical performance tests, clinical observations, and self-report assessments -be 439 used to assess the need for rehabilitation interventions (and, subsequently to 440 evaluate the effectiveness of those treatments). Healthcare generally contributes, not 441 merely to a longer life, but to an active and flourishing life of optimal functioning.

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