Family Life With Children With Disabilities: The Key Role of Rehabilitation

This study examines the effects of children's medical impairments and functional disabilities and the use of medical care and rehabilitation on three family consequences (job changes, severe financial problems, and sleep disruptions). We use a life course perspective on the interlinked lives of family members, countertransitions, and career contingencies to understand the family impact of child disability. Using data from the 1994 and 1995 National Health Interview Surveys (N = 3,446), we find that the rehabilitation services that children receive account for (mediate) a large part of the observed association of children's medical impairments and disabilities on these family outcomes. Assistance in obtaining rehabilitation for children with disabilities could reduce the family costs and disruptive countertransitions associated with raising children with disabilities. Key Words: child disability, employment change, financial hardship, rehabilitation, sleep change. For children with disabilities, medical care and rehabilitation are critical ingredients in promoting successful child development and the life chances of youth as they make the transition to adulthood. Family resources are needed to obtain the necessary medical care and rehabilitation (services, devices, inputs, and therapies) that are appropriate for each child. The mobilization of family resources often is accomplished by diverting resources from other purposes (Salkever, 1985). Consequently, medical impairments and functional limitations are often associated with a variety of potentially negative outcomes in families. These include decreased maternal employment (Breslau, Salkever, & Staruch, 1982; Lukemeyer, Meyers, & Smeeding, 2000; Salkever; Thyen, Kuhlthau, & Perrin, 1999); increased time spent on child care and housework (Breslau, 1983); increased financial strain (Hodapp & Krasner, 1994; Jacobs & McDermott, 1989; Lukemeyer et al.; Thyen et al.); and disruptions in sleep (Kirk, 1998; Knoll, 1992). In this study, we use nationally representative data to identify how children's medical conditions and functional limitations contribute to the likelihood of experiencing job changes, financial hardship, and sleep changes. We ascertain whether specialized medical care or specific types of rehabilitation are associated with these measures of family outcomes. We determine the extent to which the use of medical care and rehabilitation mediate the outcomes associated with medical conditions and disability. LIFE COURSE PERSPECTIVE ON FAMILIES OF CHILDREN WITH DISABILITIES We use the life course perspective to develop a conceptual model for the study of families of children with disabilities (Hogan & Goldscheider, in press). The life course perspective has been carefully developed for the study of families that provide care for the chronically ill and older adults, most extensively in the family implications of caregiving for family members with severe mental illness (Cook, Cohler, Pickett, & Beeler, 1997). We draw on this literature to develop a conceptual model to inform this analysis of family outcomes associated with a child's disability. Riley (1996) has pointed to the importance of social structures as organizers of developmental processes. The deinstitutional movement effectively eliminated one of the major formal alternatives to family caregiving for a child with a disability. The movement to integrate children with disabilities as fully as possible into school and community life is dependent on family support. Thus, changes in social institutions and expectations have increasingly placed caregiving for children with disabilities squarely with their families. Children with disabilities sometimes require extensive care that is not readily or easily procured from nonfamily members (Darling, 1987; Knoll, 1992), further limiting family options. Even for those families who readily embrace the challenge, the care of children with disabilities cannot be characterized as fully voluntary, given the absence of social institutional alternatives. …