• Insights

    Personal Advocacy: Why Families Always Will Be Their Child's Care Coordinator

    Pediatric care coordination is more talked about than done, given the challenge of providing “a patient- and family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families.” Very ambitious. It’s not surprising then that families, who bear the brunt of absent or failed efforts to coordinate care, find it necessary to step in as the principal care coordinator. Here are some ideas of how to support them.

  • Insights

    Becoming Your Child's Best Advocate and... Becoming the Partner You Want to Have

    In an essay that includes her fantasy of an ideal Boot Camp to train parents to be advocates, Juno Duenas, long-time executive director of Support for Families, suggests that parents become the partner they would like to have: informed and educated, with healthy inner resources and a really good sense of humor.

  • Issue Briefs

    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.

  • Research & Reports

    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.

  • Research & Reports

    A Review of the Literature Pertaining to Family-Centered Care for Children with Special Health Care Needs

    For children with special health care needs, ideal health services must be grounded in "family-centered care," which includes the planning, organization and delivery of health care that involves a partnership between families, patients and providers. Such care meets the physical emotional, developmental, and social needs of children, and also supports the family's relationship with the child's health care providers and recognizes the family's customs and values. This new literature review provides an overview of findings from selected research on family-centered care for CSHCN. It examines what has been learned about the problems families face in having their needs met, and how high-quality family-centered care might be developed and implemented.

  • Insights

    Profile: Ann-Louise Kuhns, CEO, California Children's Hospital Association

    As president and CEO of the California Children’s Hospital Association, Ann-Louise Kuhns usually has children with special health care needs on her mind, but never more than now when the California Children’s Services program is undergoing a major transformation and funding for the Children’s Health Insurance Program remains uncertain.


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