Publications

Ten years ago, My Flesh and Blood, a documentary about Fairfield, California-based Susan Tom and her 11 children with special needs, was broadcast. Since then, her home has undergone an Extreme Makeover, and her children are now adults. Read an interview with Susan discussing the transition of her kids to adult health care and making legal and financial preparations for their continued well-being.

Friends of Children with Special Needs has filled a niche by serving Chinese American children and adults with special health care needs in the Bay Area.

From Fairfield, California, to Khartoum, Sudan, stories about kids with special needs have inspired some of the most critically acclaimed films in cinematic history.

Advocates, family leaders, policymakers, and other stakeholders joined us for a first step in building a national movement to promote care coordination policies and payment options that better serve children with special health care needs, families, and care providers.

If you’re familiar with the California Children’s Services (CCS) program, you’ve probably heard the story. A family moves from one county to another and their child’s CCS coverage changes or vanishes. A statewide group of CCS medical directors is working to fix that, and to encourage other improvements in the CCS program.

Dr. David Hayashida served as the medical director of San Francisco City and County’s California Children’s Services (CCS) office between 1995 and 2016. He shares his reflections on the 20 years he spent serving the CSHCN community, and offers his advice on the future of the CCS program.

In 2013, the Foundation launched the California Community Care Coordination Collaborative (5Cs) to test whether agencies serving children with special health care needs and their families could be brought together to improve local care coordination and promote needed system changes. A new report takes a look at the results of the first 18 months of the project.

The Lucile Packard Foundation for Children's Health organized a national symposium in Washington, D.C., to discuss issues within the general child health care system that have particular salience for the care of children with complex health problems.

Little is known about the relationship between receiving primary care in a medical home and unplanned hospital readmissions and emergency department visits among children with special health care needs. Researchers focused on whether children with primary care medical homes were less likely to have unplanned hospital readmissions in the 30 days after hospital discharge.

Little is known about the relationship between receiving primary care in a medical home and unplanned hospital readmissions and emergency department visits among children with special health care needs (CSHCN). A new study, published in the journal Pediatrics, sheds lights on this issue.