Lucile Packard Foundation for Children's Health
Resource Details
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. Major changes are necessary and possible through the combined efforts of families, care providers, health care agencies and organizations, and policymakers.
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.