Evaluation of a Group Intervention to Assist Aging Parents with Permanency Planning for an Adult Offspring with Special Needs‪.‬

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.