FELSC Family Engagement and Leadership in Systems of Care

Family Engagement and Leadership in Systems of Care

Transforming systems of care requires the engagement and leadership of those with lived experience.

Project Goal

This project works with families, youth, and partner organizations to increase the impact of family and youth engagement and to support and develop the network of F2Fs. 

Over the course of the grant, Family Voices will provide national leadership on family engagement to support youth and family leaders, Maternal and Child Health (MCH) programs, and other stakeholders that serve children and youth with special health care needs (CYSHCN). Our role, in partnership with SPAN, as the technical assistance (TA) provider for the Family-to-Family Health Information Centers (F2Fs) includes goals for increasing F2Fs’ capability to engage diverse, underserved CYSHCN and their families in direct patient care, organizational design, and governance along with increasing F2Fs’ capability to collect, monitor, and report on family engagement data.   

What is unique about this project? 

Although Family Voices has provided technical assistance to the F2F network for over 30 years, the FELSC grant is different because our work will focus more closely on: 

Partnerships, especially with MCH Programs, to support shared definitions and ways to measure family engagement. 

Selecting and sharing the best and most accessible resources on family engagement.

Developing and training youth and family leaders with lived experience.

Training on Diversity, Equity, Inclusion, and Accessibility for MCH programs, partners, families, and youth.

The core areas of MCH’s Blueprint for Change : health equity, quality of life and well-being, access to services, and financing of services.

Family Engagement and Leadership in Systems of Care (FELSC) is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number (U4000149). The information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. 

14 million children

in the US are children and youth with special health care needs (CYSHCN), making up 19.5% of children under 18.
Children and Youth with Special Health Care Needs (CYSHCN) are children and youth who have or are at increased risk for chronic, physical, developmental, behavioral, or emotional conditions and who also require health and related services beyond that required by children generally.

Less than 1 in 7

CYSHCN receive healthcare in a well-functioning system.
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What Are F2Fs?

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How Do F2Fs Help Families?

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What We Know About CYSHCN

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of