• 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.

  • 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.

  • The Missing Piece: Medical Homes for California’s Children with Medical Complexity

    Children with Medical Complexity (CMC) make up a small but costly subgroup among children with special health care needs, and their numbers are growing. This report analyzes the efforts of 11 California medical centers to develop complex care clinics capable of delivering comprehensive, quality care to CMC in a medical home setting. The report outlines the key challenges to developing these clinics and recommends strengthening their support and expanding their partnerships to develop regional models of care.

  • Key Components of a System for Publicly Financed Care of CSHCN in California

    The future of the California Children’s Services program has spawned numerous but often unfocused discussions. A new paper from Ed Schor, MD, senior vice president at the Lucile Packard Foundation for Children’s Health, attempts to organize and focus forthcoming discussions.  This issue brief is provided as a proposal to which stakeholders are encouraged to react.

  • Care Coordination for California's Children and Youth with Special Health Care Needs: Building Blocks from other States

    Care coordination is critical for linking children with special health care need and their families to needed medical, developmental, behavioral, educational, and social services, and for providing logistical assistance and emotional support. This report outlines the key components of an effective, sustainable care coordination system, examines approaches to care coordination in six states other than California, and offers considerations for options in California's unique environment.

  • A Triple Aim Approach to Transition from Pediatric to Adult Health Care for Youth with Special Health Care Needs

    More than 90% of children with chronic illness now survive into adulthood, which presents a range of challenges for individuals and for the system of care. This Issue Brief describes key unmet needs regarding a) developing chronic disease self-management skills; b) enhancing the capacity of the adult health care system to care for young adults with special health care needs; and c) reducing lapses in care during the transition period. The authors, fellows at the Stanford University Clinical Excellence Research Center, offer recommendations for improving the transition.

  • It Takes A Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California

    California’s uncoordinated system of care for children with special health care needs often creates significant difficulties for families, yet family voices are generally absent from policymaking. A new report documents the level of family participation in decision-making processes for organizations that influence the health and well-being of their children.

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