• Insights

    Project Leadership: A Growing Network of Family Advocates

    Families of CSHCN are the experts on their children’s health care and on how systems and services could function more effectively to meet their needs. However, many family members lack the skills, confidence, and support to pursue advocacy and leadership roles in system change. That’s beginning to change in California.

  • 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

    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.

  • Journal Articles

    Ethical Framework for Risk Stratification and Mitigation Programs for Children with Medical Complexity

    Designing clinical programs for children with medical complexity often includes the need to implement a system of risk stratification. Authors use the framework of an ethical evaluation of a health care program to examine what the task of risk stratification might entail and provide recommendations to help ensure that programs avoid potentially ethically problematic situations and practices.

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