California Advocacy Network for Children with Special Health Care Needs: 2012 Survey Findings
One of every seven children in California has a special health care need that is a chronic physical, developmental, behavioral, or emotional condition that necessitates health and related services of a type or amount beyond that required by children generally.
Children with special health care needs in California reflect great racial, ethnic and socio-economic diversity, although children from low-income families are overrepresented among them. The complexity of their health problems, often combined with their families' circumstances, requires a health care system that provides unusually high quality, comprehensive, and coordinated care to meet their needs.
Even in the best economic times many children in California are not able to obtain this level of care, given the limits on available services and the lack of coordination among providers. A national survey1 of parents of children with special health care needs found that the state ranks last in the nation on a minimum quality of care index. The index measured family reports about the adequacy of their child’s health insurance, whether their child had a medical home, and if their child received one preventive care health visit in the last twelve months. One consequence of these shortcomings is that California's parents of children with special needs reported the highest rates of stress due to parenting, suggesting that there is substantial need in the state for enhanced access to family support services.
The Lucile Packard Foundation for Children’s Health, thus, is guided by the belief that, “Children should have access to high-quality, culturally competent, family-centered health care when and where they need it, provided through a delivery system that recognizes their unique physical and developmental needs.”
To foster improvements in the systems that serve children in California, the Foundation sponsored several convenings of families and health care experts who helped develop an “Enhanced Model of Care for Children with Special Health Care Needs.” This model calls for unified eligibility criteria for programs, a medical home for every child, and consistent, evidence-based care principles and quality standards. The model envisions unified public and private payment to providers caring for children with special health care needs. This model serves as a long-term plan for the Foundation, but its success will require linking research and advocacy to support the process of system change.