Abstract

In this article we focus on the contemporary experiences of families of children with special health care needs (CSHCN) and illustrates the extent to which they are embedded in multiple systems of care that include health insurance plans, public supports, community-based programs, and a variety of specialized providers. Data are presented from the Family Partners Project, a national survey of 2,220 parents of CSHCN conducted from 1998 to 1999 in 20 states. We address 4 critical issues, including the complexity of current service delivery systems, the problems experienced in obtaining needed specialty services, the coordination of services and the role of case managers, and parental ratings of health plans.

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