• Research & Reports

    Threading the Labyrinth: Why Children in California with Special Health Care Needs Endure Delays in Securing the Medical Equipment and Supplies They Need

    Families and health care providers frequently report long delays in obtaining essential supplies and equipment such as wheelchairs, walkers, ventilators, and hospital beds for children with complex conditions. Based on dozens of interviews, analysis of family surveys, and examination of state and county policies, this report outlines the multiple obstacles that contribute to these sometimes devastating delays, and makes recommendations for change.  

  • Event and Webinar Recaps

    A Conversation on the Emergence of Pediatric Complex Care

    Care coordination is an important approach to addressing the fragmented care that children with medical complexity often encounter. What are optimal care coordination services? How does care coordination intersect with care integration and case management? Learn best practices and how to implement a process that will achieve improved outcomes and value for children with special health care needs and their families. 

  • Issue Briefs

    How California Children’s Services Programs in the 21 Whole-Child Model Counties Engage with Families

    When families are engaged in their children’s care – including being provided with the support necessary to allow meaningful participation – health care systems improve, the quality of care improves, and children and families are better served. This brief analyzes results from a survey of county CCS administrators on how families are currently engaged in their programs, and provides suggestions for how family roles could be enhanced.

  • Journal Articles

    Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction

    Sufficient access to needed services for children with medical complexity is not assured and varies considerably by payer, many of whom who face pressures to control health spending. This article reviews the rights of children with medical complexity in Medicaid, the Children’s Health Insurance Program, and various forms of private health insurance to receive services that are necessary to promote optimal health, development, and family functioning.

  • Journal Articles

    Families of Children With Medical Complexity: A View From the Front Lines

    Families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for children with medical complexity. Written by a group of parents, this article provides an overview of the demands of managing care from their unique perspective.

  • Journal Articles

    Models of Care Delivery for Children with Medical Complexity

    Novel care delivery models in which care coordination and other services to children with medical complexity are provided are a focus of national and local health care and policy initiatives. This article explores the rapid proliferation in the creation of new models and examines their unique advantages and disadvantages.

  • Journal Articles

    Status Complexicus? The Emergence of Pediatric Complex Care

    Increased attention to children with medical complexity has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to improve care.

  • Journal Articles

    Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?

    Dedicated care coordination is increasingly seen as key to addressing the fragmented care that children with medical complexity often encounter. Authors discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models.

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