• An Experiment in Local Care Coordination: Lessons Learned from Phase I of the California Community Care Coordination Collaborative

    In 2013, the Foundation launched the California Community Care Coordination Collaborative (5Cs) to test whether agencies serving children with special health care needs and their families could be brought together to improve local care coordination and promote needed system changes. A new report takes a look at the results of the first 18 months of the project.

  • The Care Coordination Conundrum and Children and Youth with Special Health Care Needs

    Care coordination almost always tops the list of services desired by families of children with special health care needs. Yet agreement is lacking not only on the definition of care coordination but also on the best methods of financing this much-needed benefit. A new report from the Catalyst Center, with support from the Lucile Packard Foundation for Children's Health, tackles the thorny questions of what care coordination is, who should receive it, who should provide it, and how it should be financed.

  • Hidden in Plain Sight: California Children Using Long-Term Care Services

    With medical advances, the number of children needing long-term care over a lifetime continues to grow, presenting ongoing challenges to families and to the system of care that provides support. A new report describes how historical developments and current policies contribute to the lack of an effective system of care to manage the often complex, multi-dimensional health needs of these children and leaves families with an overwhelming burden of care.

  • Creating and Sustaining Effective Hospital Family Advisory Councils

    Establishing Family Advisory Councils (FACs) in children's hospitals is one means of ensuring that families have a strong voice regarding the care delivered to their children. To encourage development of FACs that truly have an impact, the Lucile Packard Foundation for Children's Health provided grant funding for the formation of the California Patient & Family Centered Care Network, a statewide collaborative composed of parents and providers representing 15 pediatric hospitals and clinics. A new report summarizes the work of the Network, and offers guidelines for establishing effective FACs.
  • 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.

  • 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.

  • 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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