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Health System Change Is Goal of New Foundation Grants

PALO ALTO – Six grants recently awarded by the Lucile Packard Foundation for Children’s Health address a breadth of issues aimed at improving the health care systems that serve children with special health care needs and their families.

The grants:

A National Study of Patient and Family Advisory Councils in U.S. Children’s Hospitals
Institute for Patient- and Family-Centered Care

Patient- and Family-Centered Care is an accepted quality standard for adult and pediatric care, but its principles have not been widely adopted as drivers of health care systems improvement. To address this, some hospitals and health plans have developed Patient and Family Advisory Councils (PFAC). This grant will support work to understand current PFAC practices in U.S. children’s hospitals, define the characteristics of high-performing councils, and develop and distribute policy and practice recommendations nationwide.

Publishing and Disseminating A National Research Agenda for Children and Youth with Special Health Care Needs (CYSHCN)
University of Colorado, Denver

The U.S. health care system is not well equipped to serve children and youth with special health care needs. With federal funding, the CYSHCN National Research Network has identified six problems in the system as high-priority areas for research. This award will support development of a national research agenda to encourage funders, advocates, and researchers to address those areas. The grantees will publish several peer-reviewed articles in a supplement to Academic Pediatrics, followed by family-friendly versions of the articles. They also will disseminate the research agenda through a webinar series and presentations at national conferences. 

California-based Nurse-led Discharge Learning (CANDLE) Collaborative – Phase II
Children’s Hospital Los Angeles

Between 20 and 45 percent of children with special health care needs experience problems after hospital discharge that require active intervention. Many of these problems could be prevented by improved discharge planning. Previous foundation grants supported development of pediatric-specific hospital discharge standards. Phase I of this project followed up on that work by supporting nurses as leaders in adopting new discharge standards at several California hospitals. Phase II, guided by a national advisory committee, will provide evidence of implementation and measurement of adherence to discharge standards in these hospitals. Implementation tools and measures to promote similar quality improvement activities in other children’s hospitals will be developed and disseminated.

Improving Access to Durable Medical Equipment and Supplies Through the California Children’s Services Program – Phase II
National Health Law Program, Inc. (NHeLP)

Children with special health care needs often endure unnecessarily long and sometimes harmful delays in accessing essential medical equipment and supplies. In California, the source of these delays often can be traced to the complex and overlapping patchwork of government programs designed to address children’s needs. Key among those programs is California Children’s Services (CCS). Past work funded by the foundation has led to a guide for legal advocates so they can assist families in navigating the CCS program. With these new funds, the grantee will identify and address two of the major gaps in obtaining equipment, and will develop and deploy an advocacy strategy for addressing these gaps.

Children’s Regional Integrated Service System (CRISS) Activities Addressing California Children’s Services Whole Child Model Implementation
Lucile Salter Packard Children’s Hospital at Stanford

Recently the state Department of Health Care Services has turned over responsibility for California Children’s Services activities to Medi-Cal managed care organizations in 21 counties under a new program called the Whole Child Model (WCM). Building on a previous award, this funding will allow the grantee to continue monitoring the WCM program implementation to ensure that children continue to receive high-quality care, including access to appropriate pediatric specialty care, pharmaceuticals, durable medical equipment, and support services under the managed care plans. 

Orange County Care Coordination Collaborative for Kids: Access to Care for CSHCN
Children’s Hospital of Orange County Foundation

Orange County recently transitioned children served by California Children’s Services to a managed care plan under the Whole Child Model program. The grantee has received previous funding from the foundation, and has successfully improved service delivery in the county by establishing better communication, coordination, and implementation of best practices among providers of service for CSHCN. This grant will provide support for identifying and addressing barriers to care that may arise as families attempt to access care. Products from this work will contribute to statewide discussions about the transition to managed care by sharing insights from the Orange County implementation.


About the Foundation: 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. 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. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University.