Publications

A report released today by the USC Price School of Public Policy and the Lucile Packard Foundation for Children’s Health indicates that an unprecedented decline in California’s child population, coupled with a tidal wave of Baby Boom retirees, will pose significant challenges for the state’s future prosperity.

Thanks to medical advances, growing numbers of children now live with complex, chronic health conditions. However, our health care system has not evolved to keep pace with this historic shift. The Lucile Packard Foundation for Children’s Health convened experts to develop an enhanced model for how care could be delivered to children with special health care needs in California.

Children with special health care needs (CSHCN) are defined as those who have a chronic physical, developmental, behavioral, or emotional condition, and who also experience consequences due to their condition, such as above-routine use of health and related services or limitations in activities compared to other children.

As policymakers determine health care benefits for the exchange, Medicaid’s comprehensive EPSDT benefit is cost-effective, and guarantees access to services. In contrast, benefits designed by states under the CHIP program serve as a lesson: they cost more, and they are less effective for children with special health care needs.

This paper explores two questions: Over the past two decades, what have we learned about the early identification of children’s developmental disabilities? From a research point of view, what more do we need to do to advance the practice of early identification?

A large percentage of children with special health care needs do not have an established medical home, but rely instead for primary care on the pediatric subspecialists who treat their specific conditions. These specialists often have not received adequate graduate training to care for patients with complex conditions. This study explores how changes in graduate residency training might improve the quality of care for children with special health care needs.

The Foundation engaged ethnographers to study families raising a child with special health care needs in order to understand the experiences and viewpoints of these children and families during their interactions with the health care system as it is currently organized.

The Lucile Packard Foundation for Children's Health is featured in a Grantmakers in Health Bulletin, a forum for health grantmakers to share information and insights. The article describes our advocacy priorities for children and families, including advancing care coordination and planning; supporting families in self-management and advocacy; and identifying strategies for financing the care of children with special health care needs. 

National and state reforms to health-care delivery – largely designed to improve care for older Americans – may inadvertently exacerbate health disparities for the youngest Americans. Nowhere is this danger greater than for children with complex health conditions who live at or near poverty.

A survey identifies key issues that the Foundation should address, notably care coordination, family-centered care and finance reform.