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The pattern of children’s illness has changed dramatically in recent decades. Thanks to medical advances, growing numbers of children now live with complex, chronic conditions that previously would have been fatal. Unfortunately, our health care system has not evolved along with this historic shift in childhood epidemiology, and care continues to be organized around acute illnesses.

To address these issues, the Lucile Packard Foundation for Children’s Health since 2009 has been investing in strategies to improve the system of health care for California’s children, with a particular emphasis on children with special health care needs (CSHCN).

The Foundation sponsored two facilitated convenings to achieve consensus on the strengths and weaknesses of the state’s current system for CSHCN. Convening participants, both local and national, included parents, care providers, youth with special needs, public officials, academic researchers, educators and insurance plan administrators.

The result was a model of the system as it now operates, compared to an “enhanced” model that would encourage better health outcomes for children with special health care needs and a better quality of life for these children and their families.

Related Grants

Drawn from a scan of all 50 U.S. states, this brief published by the National Academy for State Health Policy highlights strategies designed to address inequities in accessing pediatric specialty care and support equitable systems of care for CYSHCN.

The Children's Specialty Care Coalition hosted a virtual legislative briefing on the recently released commissioned report by the National Academies of Sciences, Engineering, and Medicine titled, "The Future Pediatric Subspecialty Physician Workforce: Meeting the Needs of Infants, Children, and Adolescents."