The unwinding of the COVID-19 public health emergency presents a challenge for many families whose children will now need to undergo a Medicaid eligibility redetermination. Cara Coleman, director of public policy and advocacy at Family Voices, shares her perspective on the challenges ahead and how to advocate for CYSHCN and their families.
Researchers explored the prevalence and characteristics of Patient and Family Advisory Councils (PFACs), investigated the effects of the COVID-19 pandemic on PFACs, and the intersection with issues related to PFAC diversity, equity, and inclusion. This article focuses on recruitment, retention, and engagement of patient family advisors with diverse perspectives and backgrounds. Findings from this study help inform strategies to promote diversity, equity, and inclusion within PFACs across hospital systems.
The National Academy for State Health Policy convened a national forum to discuss innovations, strategies, and opportunities to improve high-quality, equitable care coordination for children and youth with special health care needs, with particular focus on integrated care and the care coordination workforce.
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.
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.
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.
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.
