Publications

The Family Health Outcomes Project at the University of California San Francisco conducted a case study to examine what was and was not accomplished following previous needs assessments of California Children’s Services, one of the programs funded in part by Title V. The author offers strategies and recommendations to ensure that progress is made on the priorities raised by stakeholders who participate in future needs assessment cycles.

The Family Voices Family Engagement in Systems Assessment Tool (FESAT), available in English and Spanish, can be used for planning, assessing, and improving family engagement in systems-level initiatives. This interview describes the experience of implementing this approach in a statewide Title V program and offers recommendations for use.

Health complexity is a concept that considers both a child’s medical and social complexity. For health systems, identifying and supporting children with health complexity directly aligns with efforts to eliminate health disparities. This webinar described how health systems can identify children with health complexity and provided actionable strategies and models to use this information to improve services and supports for families. Presenters shared real world examples and recommendations based on technical assistance provided to State Medicaid and Children’s Health Insurance Program (CHIP) agencies and health systems over the last five years. Additionally, a panel of health system leaders who have received technical assistance shared their reflections and learnings.

This brief applies health complexity, a concept that considers both a child’s medical and social complexity, to address health disparities. It includes recommendations on how state agencies and health systems can develop and use health complexity data to ensure the most vulnerable children are at the center of health system redesign.

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 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.

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.

This issue brief reviews the importance of continuity of coverage for all children as the COVID-19 public health emergency comes to an end, and highlights state opportunities to improve eligibility and enrollment policies and procedures.

The unwinding of the COVID-19 public health emergency will require states to redetermine eligibility for millions of children and families. Partnering with community-based organizations, family-led organizations, and individuals with lived experience to engage their communities can help support efforts to ensure continuity of coverage. This issue brief provides recommendations for states work with these organizations to mitigate coverage loss.