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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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    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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    Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions

    Self-management improves health outcomes in chronic illness not only by improving adherence to the treatment plan but also by building the individual’s capacity to navigate challenges and solve problems. This article discusses the need for clinicians to have standardized approaches and tools to assess and promote self-management for youth and adolescents.

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    Evolving Federal and State Health Care Policy: Toward a More Integrated and Comprehensive Care-Delivery System for Children with Medical Complexity

    Alternative payment models promote novel care-delivery systems and greater accountability for health outcomes With a focus on population health, patient-centered medical homes, and care coordination, this model holds the potential to promote care-delivery systems that address the unique needs of children with medical complexity, including nonmedical needs and the social determinants of health.

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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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    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.

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