Publications

This report describes the lived experience of families of color who have children with special health care needs in navigating telehealth during the pandemic. The authors provide key learnings and family-centered recommendations to make California’s health care system and the use of telehealth more equitable.

A guide developed to assist parents and caregivers with navigation of the Whole Child Model (WCM) program in Orange County, CA. This resource provides an overview of the systems serving WCM children and families and identifies sources for a range of services and supports, including California Children’s Services, CalOptima (Orange County’s Medi-Cal Managed Care Plan), CalOptima Health Networks, providers, and pharmacies. 

The Orange County Care Collaborative for Kids (OCC3 for Kids), a multi-agency, cross-sector collaborative working to improve systems of care for children with special health care needs, explored the impact of the Whole Child Model (WCM) transition for families in Orange County, CA.

Many states cover mental health home and community‐based services (HCBS) for youth through Medicaid waivers. Authors of the article evaluated how states are covering mental health services using Medicaid waivers and compared this to waivers being used to cover services for other pediatric conditions. The findings indicate broad variability in waiver eligibility, transition plans, services covered, and waitlists across populations of youth covered by waivers. 

Clear communication between families and health care providers is essential to the delivery of high-quality care for children with medical complexity. Marsha Perez, parent mentor for Spanish-speaking families at the Lucile Packard Children’s Hospital, shares tips for health care professionals on how best to communicate with Spanish-speaking families.

These case studies demonstrate how three organizations used the Family Engagement in Systems Assessment Tools (FESAT) to plan, assess, or improve family engagement policies and practices in systems-level initiatives.

This article describes how the National Standards for Systems of Care for CYSHCN served as a framework for the redesign of two state Medicaid managed care programs: a statewide managed care plan for children with medical complexity in Florida and a regional accountable care program serving children  in Colorado.

Public Counsel discusses the importance of California’s regional centers to families of children with disabilities and their advocacy efforts to address disparities in the regional center system.

In this webinar, authors discuss their article, titled Moving from Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs. Speakers describe their study's findings, and present potential research topics to address the gaps in investing in children’s health.

This brief describes key considerations and challenges in care coordination quality measurement and identifies sample metrics that could be leveraged to evaluate the quality of care coordination systems.