• Insights

    Three Ways the Biden Administration Can Improve Medicaid to Assist CSHCN, Families

    Medicaid and the Children's Health Insurance Program (CHIP) are linchpins of the system of care, providing insurance coverage for almost half of the nation's children with special health care needs (CSHCN). Edwin Park and Elisabeth Wright Burak, two Georgetown University experts on children's health care financing, propose three ways that the Biden Administration could modify Medicaid to better serve CSHCN and their families. 

  • Journal Articles

    Mental Health Needs during COVID-19: Responses in Pediatric Health Care

    Recent studies suggest that both parental and children’s mental health has worsened since the onset of the pandemic. These changes are most pronounced in families facing more hardship, and children already at high risk for mental health concerns are even more vulnerable as a result of the pandemic. Learn how children’s hospitals have responded in varied ways to these concerns and obtain resources for nurses to share with families.

  • Insights

    Juno Duenas: Thirty-plus Years on the Frontline of Family Advocacy

    Juno Duenas, parent of a daughter with severe disabilities, has been a staunch leader in family advocacy for more than 30 years. As she retires from her position as executive director of Support for Families of Children with Disabilities, she reflects on her decades of championing the family perspective, and what lies ahead for her.

  • Journal Articles

    Oregon’s Approach to Leveraging System-level Data to Guide a Social Determinants of Health-informed Approach to Children’s Healthcare

    A novel methodology combining medical complexity (using the Pediatric Medical Complexity Algorithm) and social complexity (using available family social factors known to impact a child’s health and healthcare use) was used to create a new health complexity model at both the population-level and individual-level. Findings from the article demonstrate that a large number of Medicaid/CHIP-insured children could benefit from targeted care coordination and differential resource allocation that aligns with their health complexity.

  • Fact Sheets

    Fact Sheet: Findings on Family Engagement from California Research Bureau

    The California Research Bureau (CRB) investigated the extent to which the state's child-serving departments and agencies incorporate meaningful input from caregivers and youth in policymaking. The CRB research shows that California state government includes some bright spots of meaningful family engagement, but they are sporadic and not common practice throughout all child-serving agencies.

  • Research & Reports

    National Care Coordination Standards for Children and Youth with Special Health Care Needs

    The National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN) outline the core, system-level components of high-quality care coordination for CYSHCN. These standards are designed to help state officials and other stakeholders develop and strengthen high-quality care coordination for children with the goal of identifying and assessing the need for care coordination, engaging families in the care coordination process, building a strong and supportive care coordination workforce, and developing team-based communication processes to better serve children and families.


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