Levels of Respite Care as a Family Support System

Respite care, which provides the primary caregiver with a break from caring for a disabled child, is an essential service for families with a handicapped member. A review of research shows that respite care can be provided directly (primary respite) or indirectly through early intervention or school programs (secondary respite). Recently the effectiveness of respite care in improving family functioning has been questioned. This paper proposes an expansion of primary respite care to include early intervention services and secondary re-spite care to include informal social supports for increasing the effectiveness of respite. The experiences of the Delaware FIRST Program, an HCEEP model demonstration project, are drawn upon in both descriptive and case study form, to illustrate one model for expanding respite care services. The ability of medical science to save the lives of those who in the past would have died and to extend the life expectancy of those with chronic illnesses, combined with the move toward deinstitutionalization, has created the need for a new and different family support service: re-spite care. Broadly defined, respite care is "the temporary care of a dis-abled individual for the purpose of providing relief to the primary caregiver " (Cohen & Warren, 1985, p. 26). Because of the varied needs of children and families, such a system must be viewed in a process framework and be designed to change over the individual and family life cycle. In a national survey, Wikler (1980, cited in Levy & Levy, 1986) found respite care to be one of the most needed and least available ser-vices to families. It is the purpose of this article to briefly review the literature relevant to respite care and to show ways in which secondary respite care can be expanded to more efficiently and effectively meet the needs of all family members