Academic journal article
By Blacher, Jan; Baker, Bruce L.
Family Relations , Vol. 43, No. 1
There has been much study of how a child with severe disabilities affects the family (Blacher, 1984; Farber 1959), and how this effect may ultimately lead to out-of-home placement (Rimmerman, 1991; Sherman, 1988; Tausig, 1985). We know relatively little, however, about how parents make the decision to place their child, or how parents subsequently feel about the placement (Bromley & Blacher, 1989; Bromley & Blacher, 1991; Cole & Meyer, 1989). Personal accounts have documented the trauma that placement creates for some parents (Greenfeld, 1978, 1986; Moczygemba, 1989), but these issues have not been systematically studied.
Until the 1960s, out-of-home placement of children with mental retardation was often recommended strongly by physicians and other professionals (Scheerenberger, 1983). Today, however, families are encouraged to keep young children at home until they reach late adolescence or early adulthood (Taylor, Lakin, & Hill, 1989). Indeed, only a small percentage of families today make the decision to place a child out of the home. Nevertheless, some families do place young children, especially those with severe disabilities. One survey in 1988 estimated that 46,000 children with mental retardation were living in some form of out-of-home setting (Amado, Lakin, & Menke, 1990). One aim of this article is to describe the experiences of parents who are primary caregivers around placement and the placement decision-making process, focusing primarily on five questions: (a) How and why do families initiate placement? (b) How do families choose a placement? (c) How satisfied are primary caregivers with placement? (d) How do primary caregivers respond when they get together with their placed child? and (e) What advantages do primary caregivers perceive to placement?
Any analysis of family reactions, however, should consider the broader context of mental health philosophy and available services. While current permanency planning philosophy supports home and family living for young children with disabilities (Taylor, Lakin, & Hill, 1989), the principal of normalization suggests that adolescents and young adults should make a transition to independent or semi-independent community living, preferably in small, family-like settings (Turnbull, Turnbull, Bronicki, Summers, & Roeder-Gordon, 1989). The net results are that children who are placed are more severely disabled, families on average struggle with the out-of-home placement decision later in the life cycle, and there are more placement options than previously. Given these effects, a second aim of this study was to consider whether or not the family's experiences around placement differ according to child characteristics (especially age, but also level of retardation and behavior problems) and the size of the placement facility.
The child's age would seem to be a key dimension for service providers to consider, as the likelihood that a person with mental retardation will live in residential placement increases somewhat with age (Blacher, Hanneman, & Rousey, 1992; Borthwick-Duffy, Eyman, & White, 1987; Meyers, Borthwick, & Eyman, 1985). We hypothesized that parents of adolescents would experience placement more positively than parents of young children, in part because adolescents are approaching the age when living out of the home is more expected.
Size of the placement facility should also be an important correlate of family experiences, since normalization principles hold that small facilities are more home-like and more supportive of the child's ability to adjust to society than are large facilities. It has been assumed that parents will be more actively involved with their children in smaller community residences than in institutions. However, Conroy and Feinstein (1985) reported a higher visitation rate to institutions than to smaller community facilities, and several studies of the relocation of residents from the institution to smaller community facilities did not find that visits to or from families became more frequent (Grimes & Vitello, 1990; Latib, Conroy, & Hess, 1984). …