• 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.

  • Insights

    How Local Coalitions Improved Systems of Care for CSHCN

    The California Community Care Coordination Collaborative (5Cs), brought together agencies and families to identify and address local issues that arise from the painfully fragmented systems of care that California’s children with special health care needs and their families must navigate.

  • Event and Webinar Recaps

    Improving Discharge Care for Children with Special Health Care Needs through a Nurse-led Learning Collaborative

    Being discharged from the hospital is a vulnerable time for families and caregivers of children with special health care needs (CSHCN). Appropriate resources and support are essential for care at home and can prevent complications or readmission. The California-based Nurse-led Discharge Learning (CANDLE) Collaborative brings together interdisciplinary clinicians to improve discharge care delivery for CSHCN. Learn about two new discharge practices: closed-loop medication reconciliation and tailored medication teaching, and multidisciplinary discharge rounds with early discharge notification. Speakers share how these innovative practices can be integrated into existing clinical workflows. 


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