THE IMPACT OF A FAMILY-CENTERED CASE-MANAGEMENT APPROACH

Two urban programs of family-centered case management services were established for families of children with both a developmental disability and a chronic health condition. These are children who present significant caregiving demands due to the long-term and severe nature of their disabilities. Thirty-two mothers were interviewed within the family's first month in the project and reinterviewed approximately one year later. The results indicate that more families received respite care, nursing services, training in the care of the child, educational services and transportation to school at follow-up than had been receiving those services at baseline. However, families still indicated high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy at follow-up. Mothers indicated that program services were helpful in obtaining services, financing, information, support, and advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have difficulties coping. The model employed is described and the practice and policy implications of the findings discussed.