California’s Service System for Children and Youth with Special Health Care Needs

The future of children with special health care needs (CSHCN) and their families is at a crossroads as a result of a number of pressing factors: ever-increasing numbers of CSHCN due to lifesaving interventions and early identification; the push toward full inclusion and optimal independence for individuals with disabilities and chronic conditions; the increasing cost of health care; the public debate to reduce health care costs and lower taxes; the decreasing availability of specialty care providers; the lack of access to comprehensive care coordination; and recent service cuts for vulnerable populations.

CSHCN are caught in the throes of this perfect storm; their well being is at risk. With that in mind, the Lucile Packard Foundation for Children’s Health commissioned a paper that provides an overview of the current system of care for children with special needs and their families in California, as the state contemplates changes in how these services are organized and delivered.

This report begins with an overview of the health and related systems designed to serve CSHCN. This section includes publicly and privately funded services, as well as those specific to certain populations. Detailed information about each service system is located in the appendices at the end of the report, and referenced in the text. The next section of the report consists of an analysis of the strengths and gaps within the current service system, and their impact on families. The report ends with a summary and recommendations for addressing some of the primary concerns in the current system of care.