FAMILY SUPPORT INTERVENTIONS FOR FAMILIES OF ADULTS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Though families are considered the primary provider of support to people with intellectual and developmental disabilities (I/DD), only a small amount of I/DD funding in the United States goes toward offering assistance to these families. In addition, formal interventions typically target families of children with I/DD, which are no longer available when the individual enters adulthood. This chapter reviews the literature on family support interventions for families caring for adults with I/DD. It first examines the impact of lifelong caregiving and the support needs of these families. It then draws attention to various interventions currently available for these families, including systemic federal and state family support public policies (such as cash subsidies, and consumer-directed supports), as well as group level psychosocial interventions (such as support groups, future planning interventions, and support coordination). The review calls attention to the need for more intervention research that is methodologically sound and that addresses not only the perspective of parents but also that of other family members (such as siblings) and the person with disabilities.