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

Recently Added


All Resources

A Patient-Centered Autism Research Agenda to Engage the African American Community

Complete your gift to help keep families at the center of children’s health care

I'm ready
Not today

Our Vision

All children, youth, and families, especially those with special health care needs and disabilities, experience their best health and quality of life.

Our Mission

Family Voices is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. By putting families at the forefront and centering their leadership and lived expertise, we build a culture that includes everyone and fosters equitable outcomes.

Donate by mail

To donate by mail, your check payable to Family Voices can be mailed to us at:
Family Voices
561 Virginia Rd.
Bldg. 4, Suite 300
Concord, MA 01742

In honor of