Living and Aging with a Developmental Disability: Perspectives of Individuals, Family Members and Service Providers

Abstract

Adults with developmental disabilities are living longer, living in the community, and participating more in society. However, little is known about their day-to-day "lived" experiences and overall quality of life. Using a qualitative research approach, three pilot studies were conducted in two urban centres in Ontario to explore this issue from three perspectives: adults with developmental disabilities, family members, and service providers. Forty-eight volunteers participated in individual interviews or focus group sessions. Preliminary transcript analysis reveals several common underlying themes: social relationships, autonomy, overall life satisfaction, positive changes, health and aging, role of religion, societal attitudes, concerns for the future, and meaningful activity. Important differences existed, however, across the three perspectives. Implications for policy, service delivery and future research are discussed. Throughout most of the twentieth century, families were advised to place their children who were born with developmental disabilities in institutions. There was no expectation that they would survive into adulthood, let alone leave the institution or grow old (Grant, 1986; Jones, 1992). Today, however, it is clear that more individuals with developmental disabilities are living longer, living in the community, and participating more actively in all aspects of society. In the last thirty years, the move away from institutional care to community living, along with improved nutrition and health care, has led to an increased life expectancy and thus a growing number of older adults with developmental disabilities (Delorme, 1999; Groeneweg, 1992;