The Intersection of Disability and Aging
by Susan Fox, Ph.D.
I was pleased to be asked to submit this blog to the AAIDD Student and Early Career Professional Interest Network. With the rapid aging of our population and increased longevity of people with disabilities, the issue of how we support people with Intellectual and Developmental Disabilities (IDD) as they age has never been more important. This blog addresses only a few of the issues facing the disability and aging service systems. I hope it peaks your interest in further pursuit of issues related to disability and aging.
Age has long been an important sociological concept and it is particularly salient in the disability community today due to increased longevity of individuals with disabilities, and a rapidly aging population with a concomitant increase in the number of people with age-related chronic or disabling conditions. We often talk about aging and disability from two perspectives: aging with a disability and aging into disability. People with lifelong disabilities are living longer, although this is a relatively new phenomenon. We are also seeing an increase in disability rates among older adults as the population ages and the likelihood of acquiring a disability increases with age. Alecxih (The Lewin Group, 2006) estimated that the number of older adults, those aged 65 and older, with disabilities will more than double between 2000 and 2045.
We also know that older adults with IDD have a higher likelihood of poorer overall health and the presence of secondary health conditions (Haveman et. al., 2010). For example, in recent years we have seen an increase in dementia in persons with IDD, particularly for persons with Down Syndrome and research indicates a six times greater risk as compared to peers without IDD. (Janicki & Dalton, 2000).
This intersection of aging and disability presents a number of opportunities and challenges for the public systems that have traditionally served these populations. There are many similarities but also stark differences across these systems that need to be bridged. Similarities across aging and disability systems include that they serve marginalized and undervalued populations, programs and services are underfunded, they rely heavily on family caregivers, and they face a shortage of direct support/personal care workers. However, significant differences exist across these two systems in relation to eligibility criteria, funding mechanisms, and system priorities. While some advocates argue that people with IDD should access the same services as the general aging population, many barriers exist that make this idea challenging to achieve.
Person Centered Planning is an important construct in both the aging and disability fields and is a good place to begin in bridging these two systems. Person centered planning is a relatively novel approach within aging services, but has been a core practice within disability services as early as the 1980’s. Person centered approaches consider the whole person and support informed decision making, creative problem solving, and strategies for engaging services and supports that are individually designed to meet the unique needs of the individual (Cotton & Fox, 2011). This approach is especially important when working with older adults as we all become more individuated over time and approaches to assisting should be focused on the individual, not on programs.
At the 2015 National Goals in Research, Practice, and Policy Conference, the following goals were outlined by the Aging, Retirement, and End-of-Life Strand (Hahn, et. al., 2015):
• Identify best practices that promote healthy aging and longevity inclusive of the perspectives of people with IDD.
• Examine the diverse bio-psycho-social characteristics of the aging of people with IDD in the US.
• Explore the meaning and experience of retirement and late-life transitions for people with IDD.
• Explore opportunities, challenges, and outcomes at advanced age associated with inclusive end-of-life planning and care, as well as bereavement supports, for people with IDD.
These goals should guide current and future research, practice, and policy to address transitions in health, retirement, and late life for older adults with IDD. In addition, I pose the following questions for researchers, policy makers, and program planners to consider as we think about how to support people with IDD as they age:
- How can we best design services and supports for people with IDD as they age, considering the diverse policies, practices, and funding streams across aging and disability systems?
- How might we apply our conception of “retirement” for a person with IDD, who may or may not have ever worked?
- How might we think about end-of-life care for persons with IDD; including bereavement, palliative care, hospice, etc.?
Alecxih, L. (2006). “Long Term Care in the United States.” Presentation to AoA Staff.
Cotton, P. and Fox, S. (2011). Navigating choice and change in later life: Frameworks for facilitating person-centered planning. Durham, New Hampshire: University of New Hampshire, Institute on Disability.
Hahn, J. E., Fox, S., & Janicki, M. P. (2015). Aging among older adults with intellectual and developmental disabilities: Setting national goals to address transitions in health, retirement, and late-life. Inclusion, 3(4), 250–259.
Haveman, M., Heller, T., Lee, L., Maaskant, M., Shooshtari, S., & Strydom, A. (2010). Major health risks in aging persons with developmental disabilities: An overview of recent studies. Journal of Policy and Practice in Intellectual Disabilities, 7, 59–69.
Janicki, M. P., & Dalton, A. J. (2000). Prevalence of dementia and impact on intellectual disability services. Mental Retardation, 38, 277–289.
Susan Fox, PhD, has recently been appointed as the President and CEO of the Westchester Institute on Human Development in Valhalla, NY. Previously, she served as Associate Director of the Institute on Disability and Co-Director of the Center on Aging and Community Living at UNH. Including her years working in special education, she has been active in regional and statewide initiatives involving older adults and persons with disabilities for almost 40 years. A key aspect of her work has been the development of person-centered home and community based services for older adults and adults with disabilities to prevent unnecessary institutionalization and to support all citizens to live within their home communities.
Social media outlets: