As institutions for people with intellectual disabilities (ID) have been phased out and health care advances have increased survival rates, the percentage of older adults with special needs in the community has climbed dramatically (Hayden & Abery, 1994; Janicki & Ansello, 2000). As the result of increased longevity for both parents and offspring, parents provide care over longer periods, fulfilling the description of them as "perpetual parents" (Jennings, 1987). Although parents provide the dominant living arrangement for 85 percent of these older adults, studies of older parents consistently document their low rate of planning for the future of their adult offspring (Braddock, Hemp, Fujiura, Bachelder, & Mitchell, 1989; Hayden & Goldman, 1996; Mengel, Marcus, & Dunkle, 1996; Roberto, 1993; Smith, Majeski, & McClenny, 1996).
Permanency planning involves major life domains, encompassing residential, financial, legal, and health care domains. It is a complex, dynamic process that needs to allow for changing needs and circumstances of both the older parents and the individual with the ID (Kaufman, Adams, & Campbell, 1991). The consequences of inadequate planning are considerable, multiple, traumatic, and sometimes catastrophic. In addition to the older parents' living with pervasive fears about what will happen, their offspring is at risk of a lower quality of life. At stake is their offspring's identity, self-esteem, freedom of choice, and capacity to cope with the loss of the parent. Unplanned transitions are associated with depression, dementia, reduced coping capacity, and increased risk of Alzheimer's disease for adults with Down syndrome. Crisis admissions to service systems and agencies also result in more acute, costly levels and array of services. These crises affect staff, residents, and service recipients as well as the cost and quality of services.
Review of Literature
Studies of families at later stages in the life cycle have noted the pervasive concern of families about the future of individuals with ID and have recommended permanency planning programs to support older parents (Hayden & Goldman, 1996; Roberto, 1993; Smith, Tobin, & Fullmer, 1995). Older parents need key support services, require more assistance in planning, and are more reluctant to use formal services (Caserta, Connelly, Lund, & Poulton, 1987; Engelhardt, Brubaker, & Lutzer, 1988). Studies have found that older parents are more isolated and more in need of additional services as they age, often demonstrating heightened concern for their offspring to the exclusion of their own needs (Kelly & Kropf, 1995; Smith, 1997).
Factors identified as significant for residential planning include older mothers' perceptions of continued ability to provide care, use of formal services, perception of age-related changes, reliance on avoidance coping, and the quality and availability of family relationships (Seltzer, Begun, Seltzer, & Krauss, 1991). In summarizing their study of 61 aging parents, only 43 percent of whom had begun to make arrangements, Lehmann and Roberto (1993) concluded:
It is apparent that their families require a proactive
systematic process to engage them in
the planning process for the future of their
child or sibling. Future research must identify
those factors that predict an orderly and
smooth transition for aging persons with developmental
disabilities away from their families
and into diverse residential arrangements.
Other issues identified as significant for permanency planning include how the family deals with separation and individuation issues (Brunn, 1985; Wikler, 1986); typical variations in the family life cycles, such as delayed launching (Jennings, 1987; Smith & Tobin, 1993); and permanency planning as a recurring family and individual issue at predictable developmental stages and events, such as retirement. …