Children with Special Health Care Needs
The Foundation’s program to improve the health care system for children made major strides in 2012. The system is generally considered to be fragmented, unstandardized, under-funded and frustratingly complicated for families, especially those who have a child with special health care needs.
The Board of Directors made a significant investment in system improvement in 2012, awarding 24 grants totaling $2.4 million. The grants, which address various aspects of the system, include a survey of pediatricians to identify barriers to their caring for children with complex conditions; an analysis of interviews with families to see how care might be improved; 
a study of the role of school nurses in caring for children with special health care needs; and grants to young academic pediatricians to encourage them to focus their careers on children with special needs. As part of its grantmaking, the Foundation also established a statewide learning collaborative to encourage local communities to improve the coordination of health services for children, especially those with special health care needs.
As the Foundation’s grantmaking expanded, its California Advocacy Network for Children with Special Health Care Needs also grew in membership and activities. The Network unites families, providers, payers, policymakers and others to become informed about, and advocate for, better programs and policies. A key activity in 2012 was a survey of Network members about their priorities for improving the system of care for children with special health care needs. Care coordination, family centered care, and reform of health care financing emerged as the top issues, providing guidance for future Foundation grantmaking. As part of its advocacy, the Foundation also began to issue public comments on state policies, including recommendations on how to address the needs of children with complex conditions in the essential health benefits package being developed under federal health care reform.
In 2012, the Foundation updated its earlier report on the status of children with special health care needs in California. The study found that, as in earlier years, California’s children — compared to children with special health care needs in other states — receive care that is less coordinated, less family-centered, and fails to meet many of the key quality indicators prescribed by the Federal Maternal and Child Health Bureau.
To enhance communications about its grants and advocacy work, the Foundation also laid the groundwork for a new web presence that was launched in early 2013.