Aging with developmental disabilities: Self-reported and observed home-based functional ability

Adults with developmental disabilities are increasingly reaching old age while living in community-based, non-institutional settings. The overlay of cognitive and physical age-related impairments onto existing intellectual and physical disabilities place this generation at risk for premature functional limitations and dependency. This paper presents the results of a study examining individual functional ability in the performance of typical self-care and household activities, personal expectations of competency, and the physical and social environment of the homes of people aging with developmental disabilities. Collecting both quantitative and qualitative data, in-home interviews and observations were conducted with 129 adults aging with developmental disabilities residing in small, community-based residences. Telephone interviews were also conducted with 20 of their direct care staff. Questions investigated consumers' perceptions of their ability to perform specific self-care and independent living skills in their home environment. An extensive task observation component followed in which consumers were asked to demonstrate how they performed everyday self-care activities. Staff interview topics included how consumers' functional abilities shifted as a consequence of aging, and issues impacting consumers' task performance. Findings indicated that 90 percent of the consumers expected to perform less well than they did during the task observation. Analysis of all data sources suggested factors that may have inhibited functional ability, such as an over-concern with the risks involved, basic home modification and repair needs, and staffs' habitual caregiving behaviors such as performing tasks themselves to improve efficiency. Methods of encouraging and fostering independence and autonomy in the home are discussed.