Views about Planning for the Future among Parents and Siblings of Adults with Mental Retardation

Abstract

There has been an increasing prevalence of adult persons with mental retardation remaining with their natural families throughout most of their adult lives (Seltzer & Krauss, 1989). Families who might have chosen to institutionalize their family members in the past now keep them at home. This has been in response to a community-based, least restrictive approach to care and treatment, an increase in the life span of persons with mental retardation, and continuing cutbacks in funding for institutional facilities (Turnbull, Brotherson, & Summers, 1985). The circumstances and sensitive issues that families with adult-children with mental retardation face are extremely complex. Parents have unique and demanding caregiving responsibilities. The special nature of their position is particularly notable at the onset of their children's adolescence and entry into adulthood (Wikler, 1986). Although other parents of adolescents look forward to their children's independence, these parents face five to six decades of providing direct care for their aging children (Seltzer & Krauss, 1983). These parents also have to cope with the normative stressors associated with their own aging (Seltzer & Krauss, 1989; Zarit, Todd, & Zarit, 1986), along with the challenges of their continued parenting responsibilities. With parenting remaining a central part of their identity (Seltzer & Krauss, 1989), they often experience a lack of leisure time and personal freedom, chronic sorrow, and in. creased levels of distress (Holroyd, 1974; Minnes, 1988). A major responsibility of parents with children with mental retardation is to ensure a stable living arrangement as their children become adults. If families decide out of exasperation and/or financial constraints that they can no longer provide in-home care for their adult-children, they face the additional stress of long waiting lists for residential placement in group homes or other facilities. Should one or both of the parents die or become disabled, the lack of placement options available becomes an even greater crisis. While there are no simple solutions to the problems that arise in such families, careful planning for the future or permanency planning, which considers the entire family's needs and concerns, is likely to be very helpful (Powell & Gallagher, 1993). Siblings, in particular, are important sources of support for adult-children with mental retardation and can contribute to future planning (Seltzer, Begun, Seltzer, & Krauss, 1991). Normative relationships between siblings are frequently important, extensive, and lifelong (Edmundson, 1985; Lamb & Sutton-Smith, 1982; Seltzer et al., 1991). In families with adult-children with mental retardation, siblings can act as parental surrogates, caretakers, or siblings (Edmundson, 1985). While many parents have increasingly higher expectations of siblings to become more involved in caregiving as the children with mental retardation grow older, siblings are typically only minimally involved in the planning process (Edmundson, 1985). This lack of involvement can add to the guilt, anger, role confusion, ambivalence, and family conflict often experienced by siblings without disabilities (Begun, 1989; Cleveland & Miller, 1977; Lobato, 1983). Permanency planning can be a very difficult, emotional issue that engenders multiple feelings of guilt, relief, anxiety, and uncertainty. Stress and coping research, and caregiving and burden literature concerning families, particularly those with special needs, provides a framework for investigating the demanding task of permanency planning for families with adult children with mental retardation (Birkel, 1991; Kahana & Kinney, 1991; Seligman & Darling, 1991; Singer & Irvin, 1989). Previous research describing the care of children, particularly young children with mental retardation, or ill family members has clearly documented the great strain on parents and family members. …