Emerging Challenges to Health and Disability

Presenter Name: Glenn Fujiura, PhD

Institution: Center on Emergent Disability, Institute on Disability and Human Development, University of Illinois at Chicago

Primary Research Interests: Demography of the disability service system, family policy, evaluation of long-term care services, poverty and disability, ethnic and racial issues in disability, and on the statistical surveillance of disability

INTRODUCTION

The presentation integrates recent work on disability statistics, emerging conceptions of disablement, and broader social and economic trends in America as well as globally to forecast critical challenges to a health and disability agenda. The core theme of the work is that issues of disability and health must be seen in the context of larger forces operating in the United States. It is not simply a disability agenda or a public health agenda. As a prominent Democrat from Arkansas said at the beginning of the Health Reform debates a decade ago, "everything is connected to everything else."

METHODS

My forecast is anchored on three very broad and certainly not mutually exclusive trends – trends related to population changes, societal challenges, and what I’ve referred to for lack of a better term -- cultural trends. Under the category of population change, I considered trends that will directly affect Americans with a disability as well as the context services and supports. These are aging, changing labor markets, and the great wildcard in American demographics – immigration. Under the category of Social Trends I considered changes within society that will exert indirect influences on how disability and health issues are framed. These are poverty, the relationship of governance to disability, and the often overlooked role of the family as a unit of disability policy making. The third and last category represents the impact of technology in its various forms, and the less obvious evolution in the cultural and political context of disablement.

RESULTS

  1. The sheer size of the aging dynamic in the U.S. (and globally) assures significant impact on disability and all health-disability related systems of support and care;
  2. Aging of the population is deeply connected to other less obvious population themes such as labor market concerns and the expansion of new aging cohort - a generation of Americans growing old with disabilities for the first time. The data suggest that serious challenges may yet lie ahead in terms of our capacity to provide supplantive long term care due to a dramatically shrinking pool of labor. Finally, and very much connected to both issues of aging and changing labor markets is the impact of immigration. Few understand the scope of immigration’s effect and potential for affecting future trends.
  3. Poverty is an old story and the demographics of disability and the trends over the past two decades indicate that it remains a story of considerable importance. Why the persistence of poverty should matter to a health and disability agenda is well established -- whether as a condition of risk or a consequence, the link of poverty to disability is unambiguous. Furthermore, American poverty trends indicate a further fragmentation of the American middle-class into an increasingly bi-modal distribution – the "winners" and "losers" of the expansion, and equally important, a persistent underclass largely unaffected by prosperity.
  4. Trends in American governance suggest we must be aware of the importance of the state and the still evolving nature of the state-federal relationship -- particularly where states lack either the political will, fiscal means, or philosophical inclination to support their citizens with disabilities. The Medicaid waiver program for example, is not immune to the federalization trend – in fact, the new federalism was stimulated in large part by the escalating costs of Medicaid mandates for the poor and the waiver program for disabilities, caught in the backlash, was nearly converted to a block grant in the mid-1990s.
  5. The size of the cohort of Americans with a disability supported by family members suggest significant and as yet unrealized demands on systems of support as the family providers age. This is an ominous trend – first, because the population estimates are conservative estimates, incorporating only the most significantly impaired, and secondly, because of the size of the unmet need still resonating through our state systems. There are approximately 200 thousand individuals in institutions, private facilities, nursing homes, and on waiting lists in immediate need of alternative long term residential care options. Anything that changes the capacity of families to provide this support will affect formal systems of care. Do we continue to take the family for granted or do we proactively seek to support and extend its role?
  6. In technology as in art, every deviation from the norm can be portrayed as a defect or a medical problem – an object in need of repair. The connection of technology to disability is typically framed only in terms of "fixing" impairments, eliminating diseases, or the prevention of the appearance of "defects". This is in stark contrast to emerging conceptions of disability that frame limitations primarily as socially or environmentally created. The biological reality of impairment is not denied, but these new conceptions demand that our notions of normality must be challenged. In other words, we focus less on attributes of the individual, and more on cultural responses to them. Technology is a fundamental force in modern life, but the truly dramatic changes have yet to occur. How disability navigates these changes is profoundly important.

CONCLUSIONS

Of the diverse topics presented, the common thread and message is that disability and health planning and policy occur in the context of larger forces. To those within the disability and health movement– we must look outward in order to better see ourselves and our challenges. To those who do not see themselves as directly invested in this agenda it is that disablement is infused into the very fabric of American life.

IMPLICATIONS

Research:

  1. If disability is dynamic – both in terms of population and definition – how should research frame the target population?    Given the potency of poverty as an explanatory variable in disability, should it be given greater emphasis in research, or is too complex to be useful as a research theme?

Policy:

  1. If disability is dynamic – both in terms of population and definition – how should policy-makers define the relevant constituency?
  2. Should health care planning include family support initiatives?
  3. If long-term care is challenged both in terms of budget and access to skilled labor, should alternative paradigms of support be developed?

Training/Intervention:

  1. Disability is dynamic – both in terms of population and definition – how should personnel train and specialize?

What implications do your research or training project findings have for changes in concepts of health and disability?

The central point is that the process of disablement, concepts of disability, and the larger social context is dynamic. How we frame our agendas in research, policy, and training/intervention must take change – and the potential for dramatic change – into account.