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New Grants Target Quality Standards, Transition, Complex Care

PALO ALTO – Five new grants announced today by the Lucile Packard Foundation for Children’s Health address a breadth of issues aimed at improving the system of care for children with special health care needs.

“Children with chronic and complex health conditions often face lifelong dependence on an array of health care and other services, many of which are designed for adults and few of which are part of an integrated system,” said Edward Schor, MD, senior vice president at the foundation. “The foundation is proud of its continuing contributions to improving the systems upon which these children and their families rely.”

Quality Standards: A grant to the National Academy for State Health Policy (NASHP) builds on prior grants that led to the development and early adoption of national consensus standards for system serving children and youth with special health care needs. The current grant will continue refinement and dissemination of the standards, which are being adopted widely around the country.

Transition to Adult Health Care: The National Alliance to Advance Adolescent Health will lead an expert committee to develop recommendations and actions steps for advancing payment innovations for transition services as youth move from pediatric to adult health care.

Intensive Care Management: A project at Stanford University will evaluate a pilot replication of a program begun at the Oregon Health and Science University, Novel Interventions in Children’s Healthcare, which offers intensive case management for children whose conditions cannot be controlled despite the best of medical care. These poor outcomes for children may be due in part to their families’ challenging psychological and social circumstances, so families are assigned to an “interventionist” who is available 24/7 and uses an intensive combination of family-based and skills-based interventions.

Complex Care Management: Two large health care systems in Oregon have been studying how to most effectively and efficiently serve children with complex conditions who depend on multiple specialists and have the most complex medical and social needs. The Oregon Pediatric Improvement Partnership will collaborate with those plans to develop team-based care for those children and disseminate the lessons learned and materials developed, within Oregon and nationally.

Using Medicaid Waivers to Fund Home and Community-Based Care: Medicaid waivers from the federal government allow states to provide home and community-based services for children with complex conditions, enabling them to live at home rather than in institutions. Researchers from the University of Virginia School of Nursing will review current state Medicaid waivers that specifically include services for children with medical complexity. The goal is to determine how waivers currently are being used and which waivers seem best suited to meet the needs of these children and their families.


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.