Current estimates for adults age 60 and over with intellectual disabilities and other developmental disabilities (e.g., cerebral palsy, autism, epilepsy) range between 600,000 and 1.6 million. This population is growing rapidly, and although many persons are unidentified and the true number is not known, we can expect that by 2030, there will be several million.
They are the concerns of all aging adults—securing housing, living independently, getting help when it is needed, leading productive and meaningful lives, and staying healthy. The situation is more complicated for some older adults with intellectual disabilities and other developmental disabilities, because, on the whole, they are more dependent on caregivers (family members as well as agency staff).
Research has shown that both younger and older adults with intellectual disabilities and other developmental disabilities are able to benefit from living in community settings. Because many of these individuals live on limited incomes and there is a dearth of affordable housing, especially in the large urban areas of the U.S., finding adequate housing is a problem. It is important to find housing that is practical, safe, or easy to live in for older persons. For instance, problems in ambulation may make it difficult to manage stairs, which is an important consideration in finding a place to live.
They can do this with the proper support. There will be an increased need for services and supports for older adults with intellectual disabilities and other developmental disabilities, whether they are living independently, with their families, or in other residential settings. These services and supports, which can enable them to maintain functioning and live as independently as possible, include personal care services, assistive technologies, home health care, and other in-home supports. Assistive technologies often include mobility and communication devices, home modifications, and techniques for maintaining and improving functioning.
Older adults with intellectual disabilities and other developmental disabilities have many of the same age-related concerns as older adults. However, they typically have less income, fewer opportunities to make choices, and less knowledge of potential options than do older adults in the general population.
As is true for any older person, older adults with intellectual disabilities and other developmental disabilities differ widely in their desire to retire, with many preferring to continue in work or vocational activities. This is often related to the need for ongoing socialization and support, not always because of a desire to keep on working. Because many of these adults are unemployed, underemployed, or participating in day or sheltered programs with little or no pay and no pension plans, the prospect of retirement may take on a different meaning. They typically have not been employed most of their adult lives, few have retirement plans and little or no retirement income.
They can, however, remain active by using available community services. Community inclusion models include (a) links with aging services, such as senior centers, companion programs, and adult day care; (b) church-run or other recreational programs in the general community; and (c) later-life planning educational programs. Many community services agencies are developing individualized options, including preferences for working part-time. The success of these options depends on the follow-up formal and informal supports available in the community. To be more responsive to individuals' needs and preferences, agencies rely on volunteers, variable reimbursement rates, external funds, and flexible schedules.
Promoting healthy living requires a lifespan focus, starting in childhood and continuing through adulthood into old age. We need to understand the connection of the impact of lifestyle choices in people’s younger years on their health as they age.
Many health conditions in old age are related to long-term lifestyle factors. Obesity among this population, particularly for females, is higher than for the general population. Exercise, proper diet, and weight control need to be promoted to prevent older age-related health disorders, such as type 2 diabetes and coronary heart disease.
Older persons with intellectual disabilities and other developmental disabilities may have problems with access to specific types of health services. Advocacy is needed so that access issues (transportation, environmental modification, special equipment) are addressed to enable the provisions of primary health care, cancer screening, dental care, etc.
Older adults with intellectual disabilities need adequate health insurance.
Specific screening, diagnosis, treatment, and rehabilitation technologies need to be developed or implemented. Many older adults with intellectual disabilities often have difficulty communicating their symptoms or concerns. These communication difficulties are often aggravated by severe cognitive disability, autism, mental health disorders, early dementia, or cognitive decline. They also may have difficulty cooperating during diagnostic or screening procedures or participating in rehabilitation efforts. Health care providers (including physicians, nurses, and dentists) need training to deliver high quality health care to persons with severe cognitive or behavioral problems. They also need to be familiar with the correct medications to prescribe based on the age and the physical capacity of the person.
Research is needed to determine the types and prevalence of health disorders in older persons with intellectual disabilities and other developmental disabilities. A lifespan approach is required because many older age health disorders have their origin in lifestyle choices made at earlier ages and may result in secondary conditions that can be prevented, or effectively diagnosed and treated, at early stages.
How can we provide support to families who are primary caregivers
Families continue to be the primary providers of care. Because adults with intellectual disabilities and other developmental disabilities are living longer, families have a longer period of caregiving responsibility. Older families become less able to provide care as parents and siblings deal with their own aging, careers, and other caregiving responsibilities.
Older family caregivers have concerns about planning for the time when they can no longer provide care to their relative. Future planning involves providing for residential, legal, and financial arrangements in addition to health care, vocational/leisure activities, and community supports.
Key service needs reported by older family caregivers are (a) information regarding alternative places to live, (b) financial plans, (c) guardianship, and (d) respite services. Although in the last 10 years there has been an increase in funding for family support programs, these programs represent a small portion of spending for developmental disabilities services, and often target families of children. More needs to be done to support families of adults.
The Older Americans Act funds comprehensive support services for adults age 60 years and older and can also benefit older adults with intellectual disabilities and other developmental disabilities as well as their older family caregivers. The services include senior centers, nutrition sites, home-delivered meals, homemaker services, and case coordination. Area Agencies on Aging are a starting point for getting information about local services. The Older Americans Act and other federal agencies fund employment opportunities and volunteer programs for older adults.
The AAIDD believes that citizens with disabilities should have access to services that promote quality of life through full participation and community integration. Their empowerment should be strengthened through systems integration and research and training programs.
A good resource for books, journals, and fact sheets on older adults with intellectual and other developmental disabilities is the Clearing House on Aging and Developmental Disabilities. Contact information is as follows:
Clearinghouse on Aging and Developmental Disabilities
Department of Disability and Human Development
University of Illinois at Chicago, 1640 W. Roosevelt Road
Chicago, IL 60608-6904
(800) 966-8845 (V) or (800) 526-0844 (Illinois Relay Access).