Family Voices Resources

Supports for Families of CYSHCN: A Quick Reference Guide to Family-Led Organizations

Family Engagement / Family Leadership / Leadership in Family and Professional Partnerships

  • Date: 10/16/2019

With a few exceptions, the four national, family-led organizations described in this document have affiliates in each state. In many states, one or more of these organizations are co-located at the same agency. In other states, the organizations are located in different agencies. Each project has a specific area of expertise: health care, emotional support, mental health supports, and special education. The family members who staff these organizations are parents/guardians of children and youth with disabilities/special health care needs (CYSHCN); some are siblings to CYSHCN. They understand families’ concerns about their children and can connect them with the organization that can best advise them. Staff at these organizations come from diverse backgrounds and are able to connect with families of like backgrounds in their own native languages. In other instances, staff can connect families from diverse backgrounds to cultural brokers.

  • Keywords: family-led organizations

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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.

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