In California, more than one million children have a special health care need, which is a chronic physical, developmental, behavioral or emotional condition that requires more than routine health and related services.
Children with special health care needs and their families face many challenges. Health care and other necessary support services generally are provided in an uncoordinated manner, and families are left to navigate the fragmented system on their own. Health care coverage is often inadequate, expensive and inconsistent. Even when families have health coverage, many children may have unmet health care needs due to limited access to pediatric specialists and preventive care, and failure to identify and address families’ goals and priorities. For children of color, low-income families, and families living in rural areas, these challenges are greater.
This fragmented system of care places these children at higher risk for poor health outcomes in both the short and long term. It also increases health care costs and puts many families under enormous financial and emotional stress.
Major changes are necessary and possible through the combined efforts of families, care providers, health care agencies and organizations, and policymakers.
What We Do
The Foundation engages in grantmaking, research, policy advocacy, and community engagement to support efforts that promote development of a system that delivers family-centered, high-quality health care and related services, funded through an efficient and comprehensive payment system.
To establish priorities for our work on improving the system, in 2009 we sponsored several convenings of families, care providers, and other state and national thought leaders. In 2012, we surveyed the members of the California Advocacy Network for Children with Special Health Care Needs to ascertain members’ top priorities. Through grants, we have underwritten substantial research on the current system. Based on this accumulated information, the Foundation has chosen to focus on three key areas. Our initiatives concentrate on improving:
- System standards and measures by supporting the development and identification of best practices of health care organization, financing and care.
- Care coordination by promoting system redesign, covered benefits and best practices at multiple levels within the health care system.
- Family engagement by supporting family leaders to become advocates who participate in all levels of clinical care and health policy advocacy, and by encouraging their meaningful inclusion in those areas.
- Funding evaluation and research on ways to improve the system of care for children with special needs;
- Convening and consulting with key stakeholders to determine system standards and best practices;
- Facilitating local interagency collaboration in California to improve the coordination of care;
- Increasing opportunities for families to participate in health care programs and policy advocacy;
- Advocating for system change through research, policy analysis and communication with stakeholders and policymakers.