Families of Adults with Mental Retardation: Stress Levels and Need for Services
Hayden, Mary F., Goldman, Jon, Social Work
Of the estimated 2 million people with developmental disabilities living in the United States, only 15.6 percent live in institutional settings (LaPlante, 1988). Of those living in non-institutional settings, the majority live with their families. Consequently, families play a significant role in the service delivery system (Smull, 1989). Family living often promotes community integration, employment, social relationships, and other benefits that are not easily provided in the social services system. In addition, families provide the bulk of support and services to people with mental retardation and other developmental disabilities, and many receive no formal assistance from social services agencies (Lakin & Bruininks, 1985).
Although there has been extensive research on the effects of young children with mental retardation on their families, the literature describing the lifelong effects on caregivers of caring for adult family members with mental retardation is more limited (Engelhardt, Brubaker, & Lutzer, 1988; Lutzer & Brubaker, 1988; Seltzer, 1985; Seltzer & Krauss, 1989; Seltzer, Krauss, & Tsunematsu, 1993). As a result, little information is available to service providers about these families (Seltzer, 1992).
There are several reasons to become more knowledgeable about families who continue to care for their child past the age of 21. First, researchers have found that although older caregivers of adults with mental retardation experience stress and personal burden (Black, Cohn, Smull, & Crites, 1985; Crnic, Friedrich, & Greenberg, 1983), they have greater stability (Townsend, Noelker, Deimling, & Bass, 1989), better morale, and better health than caregivers of elderly people (Seltzer & Krauss, 1989).
Second, current trends indicate that providing support to a relative with mental retardation is a lifelong responsibility; that caregivers will have more than one family member dependent on them at a time; and that caregivers will have little marital support (Seltzer, 1992; Seltzer, Krauss, & Heller, 1990). In light of these findings, additional research is necessary to clarify the needs and experiences of families with adult family members with mental retardation. These trends will place additional demands on families' ability to provide support without out-of-home assistance.
Third, demands on the social services system have risen faster than funding (Smull, 1989), particularly for adults with mental retardation and other developmental disabilities who live with their families (Hayden & DePaepe, 1994). The current political shift toward reducing the federal government's role in providing family support programs could lead to reduced funding levels for these programs and to difficulty meeting the increased demand for services.
The study described in this article sought to determine how perceived stress and the family's support needs interact. This examination of factors that result in stress and affect a family's level of need for services contributes information that is essential to developing and funding effective and efficient supports to the growing numbers of families caring for adults with mental retardation.
Review of the Literature
Factors Leading to Out-of-Home Placement
Researchers who have examined long-term caregiving have suggested the "wear-and-tear hypothesis," which proposes that long-term exposure to stress results in depletion of physical and psychological resources. For example, Crnic et al. (1983) found that day-to-day problems and stresses were more debilitating to families of children with mental retardation than acute traumatic events. In addition, older parents have been found to be less supported, more isolated, and more in need of expanded services than their younger counterparts (Black et al., 1985).
Caregivers who request out-of-home placement for adult family members with mental retardation have reported high levels of family stress (Black et al. …