The Administration on Developmental Disabilities (ADD) in Washington, DC expressed these concerns in a request for proposals in the early 1990s published in the Federal Register:
"People with developmental disabilities face enormous odds.. they lack the basics of
American life--a good education, a job, or a real home. Tagged with diagnostic labels, segregated, and discriminated against, many lack the information and assistance they need to make informed choices. Their abilities are not recognized; and their differences set them apart, even from family members who love them, but cannot afford or manage their special needs. The burden on families...may become insurmountable, resulting in dramatic losses to the family, including jobs and income, and the family home, displaced family members, or the total collapse of the family".
Even beyond this, many older families never envisioned they would be caregivers for their children with developmental disabilities for their entire lives. Today, we discover on a daily basis, aging parents and older family members who have been caring for a family member with developmental disabilities for four and five decades with little assistance of support services or community agencies. Or we find siblings trying to cope with the responsibilities of their own children and have not had frequent contact with their brother or sister and are in need of assistance now they are the only family left with the death of their parent(s). The mental retardation/developmental disabilities service systems have not been prepared to work with an aging population and are not aware of individualized needs.
The ideal support system for the older population with developmental disabilities builds on a foundation of individualized preferences and choices that reflect the person's cultural, environmental, and life experiences. These supports include remaining active in the neighborhood and the local community for as long as possible without experiencing isolation, abuse, or neglect. or losing control of one's later life choices that include the ability to communicate, "I want, I like, I need, or I don't want, I don't like and I don't need!" The community has many varied resources that may open a new world of opportunity for involvement of the older person or persons who seek to transition into the later life years. The choices and options should be self-selected and preferred including social, recreational, and leisure activities. Many older people with developmental disabilities have demonstrated the ability to grow and learn when provided the chance to participate in self-selecting programs and services that include both formal and informal supports. The older population needs include: homes, medical services, social, recreational, and leisure activities, opportunities for work, friends and family, on request transportation, and to interact in decisions affecting their futures. There are unique needs due to both chronological aging and the whims of society.
Many groups have been asked to share their ideas on the needs of aging and older people with developmental disabilities living across the country. The responses provided by the older people, family members, MRDD staff, aging services staff, and care providers are all similar.
Thomas J. Lottman, Co-Principal Investigator for the RRTC Consortium on Aging and Developmental Disabilities at the University Affiliated Cincinnati Center for Developmental Disabilities shared his insights on the needs of Aging and Developmental Disabilities: State of the Art, State of the Need, 1993) "...Policy makers, service providers, and researchers would do well to consider the "state of the need" of older persons with developmental disabilities that has emerged from the cumulative body of research.... It is possible to and important to draw one conclusion that has significant implications for future research as well as the translation of research knowledge into practice. The conclusion is that as persons with developmental disabilities age they become, as a group, more like their age cohorts without disabilities and increasingly different from each other in preferences , needs, and functional competence. Aging does not "homogenize" the population of persons with developmental disabilities. This simple conclusion has profound implications not only for research, but also for the planning of services.
For the service section, the heterogeneity of the population also has significant planning implications. At the policy level, we must find innovative funding mechanisms to insure that dollars follow people rather than people following dollars. We need to develop a range of service options congruent with the spectrum of need and capabilities that characterize the population. At the systems level, we ought to increase collaboration between aging and developmental disabilities services, recognizing the age-related convergence of needs of persons with and without disabilities. At the programmatic level, we need to implement a "person-centered" approach to planning that meaningfully involves the older person with a developmental disability their family, friends, and other supports in a way that is responsive to their individual preferences and needs. As we reject the historic "cookie cutter" approach to service planning, we must substitute a truly different way of thinking about a service and supports and not just change the cookie cutters. A conceptualization of community integration should reflect the belief that "community " for all of us represents people and places that give us the opportunity to satisfy the needs for belonging and becoming, and that the locus of living, working, and recreating do not necessarily guarantee this opportunity. True person-centered planning involves not the assumption of preference, but the assessment of preference. Finally, the identities of older persons with developmental disabilities are defined neither by their age not their disability, but rather by their personal history, current preferences, and future hopes. It is to this identified person that we deliver services. The legacy of older persons with developmental disabilities is one of survival and life-long adaptations, and this legacy demands nothing less.
After the first six months of the Project, the first assessments of current and future needs indicates the similar needs expressed by others across the country. Older individuals have expressed their needs for "something to do" activities and housing. Family caregivers have vocalized their needs:
(1) for respite care as many parents have not taken a vacation or had a weekend alone since the birth of their child with disabilities,
(2) becoming aware of the services that are now available in the local community-- family members said they did not know what services and supports they might be able to use or what was available,
(3) finding someone who will be responsible when they are no longer able to continue the care-giving--some families explained they did not expect their other children to step in and take on this responsibility, and
(4) understanding estate planning and advance directives.
Local community agencies who are participating in the first seven sites are looking at their needs for training and education in many different areas to be able to assist these aging individuals and older caregivers and to work together with other agencies in their area. Two that have been expressed by the sites are the aging impacts on people with developmental disabilities and how to communicate with people who have developmental disabilities.
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