• Family Engagement and Leadership in Title V Programs

    In 2014 and 2015, the Association of Maternal and Child Health Programs conducted a survey about family engagement policies and practices in federally funded Title V maternal and child health programs and programs for children and youth with special health care needs. The findings provide a snapshot of strategies to support meaningful family engagement, effective and innovative practices, and areas of need for improvement and technical assistance.

  • 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.

  • What Children with Medical Complexity, Their Families, and Healthcare Providers Deserve from an Ideal Healthcare System

    Our national symposium, Designing Systems That Work for Children with Complex Health Care Needs, will identify and discuss issues within the general child health care system that have particular salience for the care of children with complex health problems. It will provide a forum to learn from those making progress on these issues as well as those working in adult health care and health policy. This paper sets the stage for the discussion.

  • 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.
  • 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.

  • 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.

  • 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.

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