Publications

Straight talk from 52 parents highlights the limitations of the current system of care for children with special health care needs and their families. A new report summarizes findings from 10 focus groups in which family members discussed what their lives are like, how well their families’ needs are being met, and how the health care system could be improved. The report describes four themes that emerged, and offers dozens of direct heartfelt quotes from focus group participants.

As the "May revise" of the state budget gets under way, the California Budget and Policy Center has released a report on the size and scope of the state's public health care coverage and programs for children. The study, funded by the Lucile Packard Foundation for Children's Health, also notes key opportunities and challenges the state faces in promoting children's health. A companion piece provides a timeline of major policy choices made in the past several years that have shaped the state's health system for children.

In a 2012 survey, families of children with special health care needs identified care coordination as their top priority. A new fact sheet provides a concise summary of the key elements necessary for a quality system of care coordination.

Life Course Theory, which promotes a life-span approach to an individual’s health, is taking hold in adult medicine, but adoption has been slow in pediatric practices. This paper proposes a framework to help pediatric practices become life course settings for children with special health care needs.

For young people with special health care needs, transitioning to the adult care system can be complicated. Thirty-nine states have websites to help youth and families with planning and support. California is not one of them. This brief outlines key components that a state-specific site for California might offer.

In 2009, the Lucile Packard Foundation for Children's Health commissioned a study of the experiences of families in obtaining care for their children with special health care needs. While the multitude of challenges families face is well documented, this study was unique in that it sought to identify patterns of experiences through observations and interviews of a small subset of families. The researchers developed six models of experience. In 2013, stakeholders were systematically interviewed for their responses and reflections on the six models. The findings from this second study strongly support the notion that the models have the potential to contribute to achieving a better understanding of families' experiences, potentially leading to system improvement.

A comprehensive new study of California's Latino children paints a complex picture of their health and well-being—and finds striking differences within a 4.7 million-strong population that comprises more than half of all the children in the state.

For children with special health care needs, ideal health services must be grounded in "family-centered care," which includes the planning, organization and delivery of health care that involves a partnership between families, patients and providers. Such care meets the physical emotional, developmental, and social needs of children, and also supports the family's relationship with the child's health care providers and recognizes the family's customs and values. This new literature review provides an overview of findings from selected research on family-centered care for CSHCN. It examines what has been learned about the problems families face in having their needs met, and how high-quality family-centered care might be developed and implemented.

Children with Medical Complexity (CMC) make up a small but costly subgroup among children with special health care needs, and their numbers are growing. This report analyzes the efforts of 11 California medical centers to develop complex care clinics capable of delivering comprehensive, quality care to CMC in a medical home setting. The report outlines the key challenges to developing these clinics and recommends strengthening their support and expanding their partnerships to develop regional models of care.

The future of the California Children’s Services program has spawned numerous but often unfocused discussions. A new paper from Ed Schor, MD, senior vice president at the Lucile Packard Foundation for Children’s Health, attempts to organize and focus forthcoming discussions.  This issue brief is provided as a proposal to which stakeholders are encouraged to react.