Publications

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?

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.

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 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. 

In summer 2012, the Foundation surveyed members of the California Advocacy Network for Children with Special Health Care Needs regarding the issues most important for the Network to address and the kinds of tactics that were mostly like to be successful.

In the early 1980s, Katie and her family became emblematic of a national effort for children and people with disabilities to receive long-term care in their homes rather than in hospitals.

Results from a wide-ranging survey that asked California parents how they view their children's health and well being provide a wealth of current data that can inform and support the work of organizations across California that serve kids.

In California, about 15 percent of children had special health care needs in 2007 — chronic physical, developmental, or behavioral conditions that require more than routine health and related services. A report commissioned by the Foundation documents areas in which the state is lagging on providing high-quality services for these children and their families.