To establish priorities for its work on improving the health care system for children with special health care needs, the Foundation sponsored several convenings of families, care providers, and other state and national thought leaders, and also surveyed the members of the California Advocacy Network for Children with Special Health Care Needs.

Based on those discussions, the Foundation focuses on several areas to improve the delivery system for children and families. Our initiative concentrates on improving:

  • Care coordination by identifying and supporting multi-agency collaboration through a single care coordination system
  • Family-centered care by supporting family leaders to become advocates participating in all levels of clinical care and health policy advocacy
  • Family self-management by supporting families to become highly functioning over the long-term while caring for a child with complex health care needs
  • The financing of care for children with high health care utilization and expenditures
  • Appropriate access to pediatric specialty care

Strategies Include

  • Funding pilot programs to identify potential models;
  • Convening leaders to identify new standards of care and best practices;
  • Facilitating local-level interagency collaboration to improve the coordination of care;
  • Supporting families through trainings to participate in self-management, policymaking and hospital decision-making;
  • Determining shared policy objectives among stakeholders and publishing a policy agenda;
  • Commissioning health policy research to identify needs in state and federal rules and laws;
  • Supporting ┬áthe Network with resources and training to advance the advocacy agenda; and,
  • Participating as a resource in state and federal policymaking for children with special health care needs
  • Engaging with communities
  • Consulting with stakeholders

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