• A Guide to Establishing Effective Hospital Family Advisory Councils

    When families feel that they are partners with their children's health care providers, the quality of care improves and parents' fears and anxieties are reduced. One means of ensuring that families have a strong voice regarding their children's care is establishment of Family Advisory Councils (FACs) in health care organizations. The California Patient & Family Centered Care Network, a statewide collaborative composed of parents and providers representing 15 pediatric hospitals and clinics, has developed a checklist for establishing effective Councils.

  • Realizing the Promise of Telehealth for Children with Special Health Care Needs

    Telehealth—the use of technology to provide and coordinate health care at a distance—has proven to be an effective tool in making specialized care more accessible for children and youth with special health care needs, but in California providers and families are not using this service to its full potential. A new report explores the barriers to use and proposes some solutions.

  • Telehealth Policy Solutions for Children with Complex Medical Needs

    Telehealth has proven to be an effective tool in making specialized care more accessible for children and youth with special health care needs, but in California providers and families are not using this service to its full potential, according to a new report.

  • Project Leadership: Effecting Change, One Parent at a Time

    Families of children with special health care needs have real-world experience that could help make health care policies more family-centered and culturally competent. However, many lack the training and confidence to make their voices heard. Project Leadership, operated by Family Voices of California, offers a comprehensive training curriculum and mentoring program that prepares families to engage in public policy advocacy.

  • In Their Own Words: Improving the Care Experience of Families with Children with Special Health Care Needs

    Straight talk from 52 parents highlights the limitations of the current system of care for children with special health care needs and their families. A new report summarizes findings from 10 focus groups in which family members discussed what their lives are like, how well their families’ needs are being met, and how the health care system could be improved. The report describes four themes that emerged, and offers dozens of direct heartfelt quotes from focus group participants.

  • Children's Health Programs in California: Promoting a Lifetime of Health and Well-Being

    As the "May revise" of the state budget gets under way, the California Budget and Policy Center has released a report on the size and scope of the state's public health care coverage and programs for children. The study, funded by the Lucile Packard Foundation for Children's Health, also notes key opportunities and challenges the state faces in promoting children's health. A companion piece provides a timeline of major policy choices made in the past several years that have shaped the state's health system for children.

  • Could a California-Specific Website Ease Transition to Adult Care?

    For young people with special health care needs, transitioning to the adult care system can be complicated. Thirty-nine states have websites to help youth and families with planning and support. California is not one of them. This brief outlines key components that a state-specific site for California might offer.

  • Reflections and Responses: Six Models for Understanding How Families Experience the System of Care for Children with Special Health Care Needs

    In 2009, the Lucile Packard Foundation for Children's Health commissioned a study of the experiences of families in obtaining care for their children with special health care needs. While the multitude of challenges families face is well documented, this study was unique in that it sought to identify patterns of experiences through observations and interviews of a small subset of families. The researchers developed six models of experience. In 2013, stakeholders were systematically interviewed for their responses and reflections on the six models. The findings from this second study strongly support the notion that the models have the potential to contribute to achieving a better understanding of families' experiences, potentially leading to system improvement.

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