A RESEARCH PERSPECTIVE: NEXT STEPS IN
BRIDGING THE GAP BETWEEN AGING AND DISABILITY

"Where do we go from here?" was the question posed at the closing session of the Aging, Disability and Rehabilitation Network (ADRN) Special Program titled "Tools and Designs for Lifelong Independence: Creating New Realities for Older People and People with Disabilities. It is an important question and one addressed recently in this newsletter by two leaders in these respective communities: Fernando Torres-Gil, Assistant Secretary for Aging, U.S. Department of Health and Human Services, and Judith Heumann, Assistant Secretary of Education, Office of Special Education and Rehabilitation Service. But, unlike the previous article, which focused primarily on policy issues, the current one discusses the gap between aging and disability from a research perspective. In the view of this author research represents an under-utilized resource in our search for common ground.

Recent interest in strengthening the ties between aging and disability stems from several sources. As one Special Program participant put it, even if we were not inclined to seek common ground based on the ideal of improving the quality of life for all people, the changing demographics of aging and disability, combined with the managed care revolution and the politics of devolution, are forcing us to come to the same table. To reinforce this claim, persons living with disabilities (regardless of which definition is used) now comprise the single largest minority group ever identified in the U.S., ranging from 34 to 48 million among the non-institutionalized population. Moreover, according to the new National Coalition on Disability and Aging, by the Year 2000, there will be approximately 75 to 85 million Americans-- or one-third of the nation-- who are aging with long-term disabilities or aging into disability for the first time in later life.

So, how do we go about bridging the gap between aging and disability and what can research contribute? According to the new Coalition, the keys to building stronger ties between these communities center on: (1) educating ourselves about disability and the needs of persons with disabilities; and, (2) articulating a clear and more compelling vision of lifestyles grounded in choice and self-direction for persons of all ages. Consistent with this view, Fernando Torres-Gil, suggests that we minimize our differences and focus on common interests surrounding assistive technology, personal assistance services and health and long-term care issues. What follows is one researchers "prescription" for what is needed to further develop common ground between aging and disability communities as seen from the perspective of someone who is actively engaged in network cross-talk and in conducting cross-disability and cross-cohort research on aging with and aging into disability in mid- to later-life.

At a theoretical level, we need more knowledge of the dynamics of the disability experience, the changing needs of persons with disability and the role of the social environment in the disablement process. Although there is increased recognition that disability isn't static and that it involves an interaction between the person and the environment, we have a long way to go to better understand the changing nature and meaning of disability at different stages of the life course and across different social contexts. We also need to learn more about the diversity of disability across race/ethnic and cultural lines. To fill these gaps in our knowledge, we need to develop and test new models that incorporate concepts from both gerontology and disability studies, and broaden our base of colleagues to include representatives of both communities.

At an institutional level, we need more network cross-talk between aging and disability organizations and funding sources and more collaboration on developing research priorities and strategies that ask the hard questions necessary to advancing our common concerns. Suggested topics to be pursued through joint research endeavors include:
(A) Outcomes studies focused on the testing the effectiveness of assistive technology, personal attendant services and home and community based long-term care programs in maintaining function, promoting independence and reducing costs; specifically, we need to know for whom and under what conditions technology and PAS have their anticipated beneficial effects, and what are the barriers to utilization?
(B) Community and epidemiological studies of the prevalence and consequences of unmet need for assistive technology and PAS services; specifically, who is most at risk for unmet need, what are the institutional barriers to meeting these needs, and what are the consequences of unmet needs for the health and well-being of people with disabilities of all ages?

· To support such collaboration research, we need more cross-training and education of professionals, para-professionals and advocates in both disability studies and gerontology, including life course development and independent living concepts. Such cross-training is vital if we are to develop integrated theories as well as a common language and shared philosophy.
In addition to educating ourselves, researchers also need to become more pro-active in educating consumers about choice and self-determination and increasing their awareness of the benefits of assistive technology and home accommodations. Increasingly we are being asked to go beyond merely disseminating our results, to demonstrate the impacts of our research on the lives of the people we study. Stronger collaboration between aging and disability researchers and advocates can help us do this more effectively.

Finally, to generate new and useful knowledge on disability and on aging with disability, we need to involve consumers as decision-makers in all stages of research, from formulating priorities and designing research instruments to conducting studies, disseminating findings and evaluating effectiveness. This is necessary in order to increase the relevance and applicability of our results as well as to establish a working partnership from which common concerns can be addressed.

However, to reap both the research and coalition-building benefits of consumer involvement, we need to loosen the distinction between "professionals" and "consumer-experts" or advocates. Historically, this has been one of the most difficult barriers to overcome in strengthening ties between these communities. The "aging network" is made up primarily of providers, who are professionally trained to deliver services to, and to advocate for, older Americans, who because of functional limitations and/or socio-economic disadvantage are assumed to need help in maintaining their health and well-being. The "disability community", in contrast, is composed primarily of young and middle-aged self-advocates -- both professional and non-professional, who are engaged in systems change on behalf of themselves and others like them; their primary commitment traditionally has been to empowering consumers to manage their own lives and not to providing services. Ironically, recent developments in both managed care and "reinventing government" are bringing these two approaches-- service and empowerment-- closer together under the banners of "consumer-directed services."

In sum, whether because of necessity or visionary leadership, the aging and disability communities are starting to come together around their common interests and shared demographic and political futures. Sponsoring more theoretically integrated and collaborative research on the key issues of assistive technology, personal assistance service, health and long-term care can help strengthen these ties by equipping members of both communities with the data needed to improve the quality of life for persons of all ages with disability.