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New Grants Target System Standards, Durable Medical Equipment Delays, Parent Empowerment

PALO ALTO – Eight grants, including two that support establishing national standards of care for children with special health care needs (CSHCN), recently were approved by the board of directors of the Lucile Packard Foundation for Children’s Health.  

Three other grants seek to empower family members of CSHCN to advocate for their children, and another aims to improve access to durable medical equipment and supplies for these children. 

The new grants:

National Standards for Care Coordination for Children and Youth with Special Health Care Needs: Currently there are no widely accepted national care coordination standards for children with complex conditions. A grant to the Center for Health Policy Development at NASHP will launch a process to develop such standards, beginning with a literature review, key informant interviews, and convening of a National Work Group to generate and refine standards.

National Standards for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs: Over several years, with Foundation funding, standards for improving systems of care for CSHCN have been developed. Wide adoption and use of these national consensus standards has been a positive step toward improving system performance and child health outcomes This next phase of work will focus on broader dissemination of the standards and development of tools to assist states with their implementation. 

Project Leadership: Parent Leadership Coordination and Expansion: Building on previous grants, this funding will enable Family Voices of California to expand its parent training program to include underrepresented populations, thereby ensuring diverse parent leadership throughout the state. Family Voices also will increase the level of leadership and advocacy activity by families, to have greater impact on policymaking.

Establishing a New Role for Parent Mentors as Members of a Health Care Team: Lucile Packard Children’s Hospital Stanford will expand on a previous Foundation grant by establishing a replicable parent mentor program that is adaptable to diverse health care settings. Parent mentors are veteran parents of children with chronic / complex conditions who provide support and navigational strategies to parents of newly-diagnosed children.The program will be developed and tested within a learning collaborative of hospitals nationwide. Funding also will allow for measurement of the impact of a health care team-based parent mentor program, and for national dissemination of the results.

Analysis of Family Engagement in California Children’s Policymaking: The goal of this grant to Children Now is the release of an official government report that provides baseline data on all opportunities for family engagement in policymaking within California agencies serving children. 

Improving Access to Durable Medical Equipment for Children with Chronic and Complex Health Care Needs: Obtaining needed and appropriate medical equipment and supplies in a timely manner is frequently difficult for families of children with complex conditions. The National Health Law Program (NHeLP) will conduct a legal analysis of how California Children’s Services (CCS) covers durable medical equipment (DME), and will develop and disseminate resources to help advocates navigate the CCS process and understand clients’ legal protections regarding DME.  

Ensuring that Children with Special Health Care Needs Have Access to Needed Medicaid Services: Nearly half of CSHCN receive their health insurance through state Medicaid programs, and the adequacy of services varies by state. Legal firm Manatt, Phelps and Phillips will identify existing state Medicaid policies that result in these variations in access to, and quality of care. The project will identify policy levers that states have used to enhance health care for CSHCN, and will promote use of those levers to address existing disparities in services. 

Self-Management Supports for Children with Special Health Care Needs: SRI International will compare data from a survey on the caregiving burdens on California families to national data on a similar sample of families. This analysis will shed light on the experiences of families, the supports already in place to help them, and ways that the pediatric care system can improve the supports it offers.  


About the Lucile Packard Foundation for Children’s Health: The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. Its mission is to elevate the priority of children’s health, and to increase the quality and accessibility of children’s health care through leadership and direct investment. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families.