Publications

In response to the COVID-19 pandemic, states rapidly established new funding mechanisms and implemented emergency regulations, while providers deployed innovative technologies to connect with their patients. This report identifies key policy flexibilities enacted during the public health emergency and summarizes stakeholders’ perspectives about the impact of the flexibilities on CYSHCN and their families and providers

The Department of Family-Centered Care at Lucile Packard Children’s Hospital, Stanford, launched a Family Food Support Program in May 2020. Learn about their success and plans for the future.

Shared care-planning for children with special health care needs (CSHCN) must start with a comprehensive view of the child and family and be anchored to their unique strengths, needs, context, and aspirations. The Child and Adolescent Health Measurement Initiative designed and piloted the CARE_PATH for Kids, a novel three-step, family-centered approach to the process of creating Shared Plans of Care (SPoC) for CSHCN that complements existing models in the field.

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.