Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Most people with intellectual and developmental disabilities (I/DD) have a need for support throughout their lives. With their growing life expectancy the numbers of older adults with I/DD continues to expand, and community agencies and families now face the challenge of providing supports as these adults experience age-related changes. In comparison with adults without long-term disabilities, adults with I/DD are more likely to experience earlier age-related health changes, limited access to quality health care, and fewer financial resources. In addition, they are more likely to be living with parents into adulthood and have more limited social supports and friendships outside the family.

As they age, people with I/DD seek the same outcomes as other people without I/DD, including (a) maintaining their physical and mental health and ability to function as independently as possible; and (b) actively engaging with life through friendships, contributing to society, and meaningfully participating in community life. However, older adults with I/DD are often more vulnerable to conditions that will make their old age potentially more difficult

A Growing Need to Address This Group

Several demographic trends point to the need to focus greater attention on the population of people with I/DD who are aging. These trends include their growing numbers, the aging of their caregivers, changes in public policies, and technological advances.

As with the general population, whose average lifespan has grown from 66 years in 1950 to 78 years in 2007 (Minino, 2009), the life expectancy for adults with I/DD has also grown over the last few decades due to medical advances and improved living conditions. The life expectancy for people with I/DD is similar to that of the general population, with the mean age at death ranging from the mid-50s (for those with more severe disabilities or Down syndrome) to the early 70s for adults with mild/moderate I/DD (Bittles et al., 2002; Janicki, Dalton, Henderson, & Davidson, 1999). The number of adults with I/DD age 60 years and older is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030.

Over 75% of people with I/DD live with families, and more than 25% of family care providers are over the age of 60 years and another 38% are between 41-59 years (Braddock, Hemp, & Rizzolo, 2008). Without a mandate for support to adults with I/DD and their families, most of these families receive few support services and face long residential services waiting lists, estimated at roughly 115,000 families nationally (Lakin, Larson, Salmi, & Scott, 2009). An urgent need exists for aging adults with I/DD and their families to have access to quality supports that address their age-related health and social changes.

Key Challenges

Public policies have increasingly supported the rights of people with disabilities to live in communities of their choice. Making this relevant to people with I/DD requires a corresponding increase in environmental supports to allow their full community participation. Until the age of 21 years, persons with I/DD are eligible to receive support services (i.e., education, training, health promotion) through the Individuals with Disabilities Education Act (IDEA, PL 101-476). When eligibility for these services ends, the task of securing support shifts from the educational system to the individual and family or other caregivers. This task becomes more challenging over the lifespan as aging-related changes impact both the person with I/DD and supporting family members. Key challenges that must be addressed by communities, families, and adults aging with I/DD include the following: (a) improving the health and function of adults aging with I/DD and their families, (b) enhancing consumer directed and family-based care, and (c) reducing barriers to health and community participation.

Improving Health and Function

Adults with I/DD are more likely to develop chronic health conditions at younger ages than other adults due to biological factors related to syndromes and associated developmental disabilities, limited access to adequate health care, and lifestyle and environmental issues. These adults have higher rates of obesity, sedentary behaviors, and poor nutritional habits compared to the general population (Yamaki, 2005). Many health care providers, people with disabilities, and families are unfamiliar with the latest information about the age-related health issues for people with I/DD. A need exists not only for more research in this area, but also for getting the information out there and for improved preventive and surveillance strategies across the lifespan for adults with I/DD. These strategies include targeted health education programs, appropriate screening, and community health promotion programs.

Enhancing Consumer-Directed and Family-Based Care

Although most adults with I/DD live with family, only about 5% of I/DD funding is directed for family support (Braddock et al., 2008). This gap between need and public resources is likely to increase with the "graying of America," and the trends over the last 50 years in the U.S. of more dual-income families, lower fertility rates, and more families living in poverty. Other important trends include the increased number of minority families. The percentage of non-Hispanic Caucasians is estimated to drop from 66% in 2008 to 46% of the population in 2050 (U.S. Census Bureau, 2008). Cultural caregiving norms and language barriers, along with poverty, affect access to services and well-being of individuals with I/DD and their families.

Models of consumer-directed supports (e.g., personal assistance, supported living, and cash subsidies) have grown, stimulated by the Real Choice Systems Change grants of the 2000 New Freedom Initiative, and the Robert Wood Johnson Self-Determination Initiatives. Outcomes of consumer-directed supports for families of individuals with I/DD have included greater service satisfaction, fewer unmet needs, better access to health care, fewer out-of-pocket disability expenses, reduced feelings of stress and burden, greater self-efficacy, more opportunities for employment (both caregivers and individuals with I/DD), and improved social and leisure opportunities and community participation (Caldwell, 2006; Heller & Caldwell, 2005). However, in many of these programs the other family members often make the decisions rather than the person with disabilities. Also, in many cases funds are used to pay other family members, which can include a parent. We know little about the impact of using consumer-directed funds to pay family members to provide care, and how this affects the quality of life and self-determination of adults with I/DD.

Reducing Environmental Barriers to Health and Community Participation

The concepts of "livable communities" and "healthy homes" have been promoted for persons who are aging and persons with disabilities. As people age and require more supports for their activities of daily living, work or recreation they may require modifications to their homes and communities that allow them to remain in their current settings. Environmental interventions (EI) to adapt or modify home/living environments, and assistive technologies (AT), have shown positive effects on function and reduced mortality for persons with Alzheimer's disease and decreased stress for their caregivers (Gitlin et al., 2006). Hammel, Lai and Heller (2002) also found that EI and AT maintained and/or increased function for adults with I/DD. For older adults with I/DD, families and service providers have the challenge of adapting the environments so that persons can maintain function and continue desired activities as long as possible.

Conclusion

While this generation of older adults with I/DD has generally had few opportunities to make their own choices regarding their daily lives, and have had restricted options regarding supports in the community as they were growing up, the next generation of adults with I/DD and their families is likely to have higher expectations from the service system. Years ago the major options offered to families were institutionalized residential services or no services. The generation that has received mandated school services has grown to expect more options in the community, more consumer-direction in services, and more support for aging in one's home setting.

Note:The contents of this article were developed under Grant #H133B080009 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, to the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.