It Takes a Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California.

This report considers the role of family participation in government entities such as boards, advisory committees, and task forces that make policy and implementation decisions regarding services for California's 1.4 million children and youth with special health care needs (CSHCN). Information was gathered through interviews with parents, advocates, and administrators, a review of literature regarding family participation, and preliminary research regarding family participation on more than 60 California State- and county-level government policy entities that have role sin programs that serve CSHCN. The report reviews information regarding family participation requirements and support offered in a select range of government policy entities serving CSHCN, including health care, disability, education, child welfare, and social justice agencies, examines approaches to maximizing the value of family participation, and makes recommendations. Findings indicate while some State and local government entities incorporate and support robust family participation, overall involvement of families is very inconsistent and often fairly anemic in policymaking and implementation decisions. There are substantial differences in the amount of family participation, the role families play in decision-making, and the support offered to families who do participate. It is recommended that California State law should institutionalize family participation on government entities that serve CSHCN to ensure that the point of view of families is well represented in decision-making. 213 references. (Author abstract modified)