A collage of photographs of African American families and children, all smiling for the camera.

Youth Leadership

Youth leadership is grounded in historical roots of youth rebellion against systems and policies that do not include their voices. Youth-leader.org defines youth leadership as, “Young people as agents of change in their communities.”

Youth leadership happens in many different ways and is usually a personal choice depending on interest. Youth can choose to join their schools’ governmental body as a student leader, they can choose to join a group outside of school working local community initiative, they can join or start national causes based on a subject personal to them. In the Children and Youth with Special Health Care Needs (CYSCHN) world many of our youth become active in disability issues that have direct impact on their lives. They rally for inclusion, accessibility, self-advocacy and fight against barriers that prevent them from living and pursing their full potential. Whatever the cause, group or affiliation, youth join together to ensure that their collective voices are heard using that enduring mantra: “nothing about us, without us”.

There are many youth leadership programs and groups across the country. If you are a youth interested in joining a youth group, a parent/caregiver seeking to enroll your youth into a self-advocacy leadership program, or if you are a community-based organization or state agency considering the inclusion of youth voices in your programming, see below for examples of state and national programs.


Youth MOVE National is a youth-driven, chapter-based organization dedicated to uniting the voices of youth nationwide. Founded in 2007 and officially registered as an independent 501(c)(3) organization in 2013, Youth MOVE National has more than 60 chapters all around the country.

Youth Engaged 4 Change  “We provide youth-focused resources and opportunities that inspire and empower young people to make a difference in their lives and in the world around them by improving their knowledge and leadership skills.” 

Youth as Self Advocates (YASA) a project of Family Voices, YASA is a national, grassroots network created by youth with special health care needs and/or disabilities for youth. YASA shares information to help youth learn self-advocacy and leadership skills. YASA youth work within their states to voice their issues, and partner for improvement.

NAMI Teens & Young Adults NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.


CT Kids As Self Advocates (CT KASA)

CT KASA participants learn how to advocate for themselves and take control of their own lives. CT KASA facilitates this by teaching young people about their rights and how to change the systems that affect their lives.

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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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