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    Achieving Care Integration for Children with Medical Complexity: The Human-Centered Design Approach to Care Coordination

    Taking a fresh look at the perennial issue of how to provide effective care coordination, a team of researchers has reimagined the process using human-centered design, an approach that focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers.

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    The National Standards for CYSHCN: A Compendium of National Data and Quality Measure Sets

    Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs. This new compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs, as outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles data and quality measures from applicable and widely used measure sets. Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN.

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    Recommendations for Value-Based Transition Payment for Pediatric and Adult Health Care Systems

    The critical handoff from pediatric to adult care providers often fails to occur, in part because no payment mechanisms are available to either practice. To address this, the National Alliance to Advance Adolescent Health convened a multidisciplinary group of stakeholders to develop recommendations for pediatric-to-adult transition value-based payment (VBP) strategies and quality measures. Their findings are outlined in this new report.

  • A Better Way: Team Care for Children with Special Health Care Needs

    Team-based health care is a key component of the Chronic Care Model, which has shown to be successful for adults with chronic conditions.  As the number of children with chronic conditions grows, and payers seek innovative ways to increase efficiency and effectiveness, it may be time to invest in restructuring pediatric practice to promote team-based care. 

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    A State Multi-Sector Framework for Supporting Children and Youth with Special Health Care Needs

    Although federal programs are a major source of support for children with special health care needs and their families, the state in which a family lives can heavily influence whether the child has access to quality health care and other needed services. State and local statutes and regulations often determine eligibility criteria and requirements for receiving care. A new report from Child Trends, funded by the Lucile Packard Foundation for Children’s Health, offers a framework for state agencies and other stakeholders to assess and improve how a state provides care across health, education, justice and other systems. 

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    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.  

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    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.

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    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.

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    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.

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