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New Grant Supports Advocacy Training for Families of Children with Special Health Care Needs

PALO ALTO – No better advocates exist for children than their own families. But parents and guardians often lack the tools and confidence to make the case for the services their children require.

A new grant to Family Voices of California from the Lucile Packard Foundation for Children’s Health will support advocacy training for families of children with special health care needs. The goal is to enhance families’ ability to participate on advisory committees and educate elected officials and other health care decision-makers on the difficulties they face in accessing quality health care services for their children.

“Families know their children best, and are the best judges of their needs, yet their voices are the least heard when decisions are made about programs and policies” said Edward L. Schor, MD, senior vice president at the foundation. “By strengthening the cadre of families around the state who feel confident in participating actively in policymaking and program oversight we hope to make the system more responsive to the needs of children and families.”

The grant will build on earlier grants to Family Voices that successfully supported development of a training curriculum for families. In the current project, Family Voices will work with counties around the state to launch new training programs. The grant will underwrite an infrastructure to train local trainers, update and provide curricular materials, encourage evaluation, offer coaching and technical assistance to new training sites, and network among training programs and trained parent advocates. Registries of trained parents will be developed, along with opportunities to participate on advisory committees.

Four other grants also were approved recently:

* To Family Voices of California to support its 2015 Health Summit & Legislative Day;

* To the Institute for Transforming Health Care to define certification criteria for Pediatric Complex Care Clinics;

* To the American Academy of Pediatrics, Division of Healthcare Finance, to support two webinars for pediatric practices on billing for the care of children with chronic medical conditions; and

* To the Research Institute at Nationwide Children’s Hospital to support convening of recipients of Center for Medicare and Medicaid Innovation grants and other leaders in the care of children with chronic and complex health problems

See details about the grantees and their work here.



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 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.