Publications

Many children and youth with special health care needs (CYSHCN) have conditions that put them at risk for severe COVID-19 illness. Identifying CYSHCN with risk factors for severe COVID-19 illness is paramount to assist strategic planning efforts for vaccine distribution. This report covers the health conditions that may put these children at risk, including how the conditions may be used to prioritize vaccine distribution, how to identify the conditions using health care claims, and how estimating the prevalence of these conditions can help ensure that children and youth receive the care they need during the pandemic.

El Sistema de Servicio Integrado Regional para Niños (CRISS), una colaboración de organizaciones de apoyo familiar, hospitales pediátricos y grupos de proveedores, y 28 programas CCS del condado en el norte de California, ha monitoreado la implementación del Modelo de niño integral e identificado estrategias potenciales para abordar problemas y preocupaciones planteadas por familias, planes, proveedores y agencias del condado de CCS.

The Children’s Regional Integrated Service System (CRISS), a collaborative of family support organizations, pediatric hospitals and provider groups, and 28 county CCS programs in Northern California, has monitored the implementation of the Whole Child Model and identified potential strategies to address issues and concerns raised by families, plans, providers, and CCS county agencies.

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. 

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.

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.

A series of webinars that explore strategies for state Medicaid agencies to implement during the pandemic, from coverage requirements to expanded access to services.

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.

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.

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.