Public Policy

Policy Priorities to Support Children with Special Health Care Needs and Disabilities and Their Families

Our Strategic Policy Priorities

Children and youth with special health care needs and disabilities, and their families, face systemic barriers and biases that impede their ability to experience their best possible lives. Systems of care do not respond to their needs holistically or facilitate access to supports that enhance their quality of life.  

To make the most impact, we focus our policy actions across all levels of government – federal, state, and local. We work with our family and organizational partners to lean on the various levers of policy change through education and advocacy.  

Our current policy agenda includes:

  • Expand access to peer-to-peer support for families of children and youth with special health care needs
  • Support and expand Medicaid coverage for children and youth with special health care needs and their families and caregivers 
  • Improve the transition to adult health care for youth and young adults with disabilities and their caregivers and families 
  • Eliminate language access barriers 

Family Voices collaborates with national child health and disability organizations, such as the Consortium for Citizens with Disabilities, The Arc, Autism Speaks, the American Academy of Pediatrics, and other groups. 

Cover Page of 2025 Policy Agenda document

Recent Policy Briefs

Policy Brief: The Family CNA Model: Supporting Families and Improving Care for Children with Medical Complexity

Recent Policy-Related News

Following are the most recent news posts from the Washington Update and Policy Alerts.  Click here to receive the weekly Washington Update newsletter and/or periodic Policy Alerts in your inbox. 

Washington Update August 2, 2023

by | Aug 2, 2023 | ,

Legislative Update Lawmakers left town for six weeks at the end of last week - with the work of appropriations incomplete. Lawmakers are already openly discussing a continuing resolution to apply a short-term fix to a possible government shutdown in the fall if bills...

Legislation

The legislation tracked below is for informational purposes only. It is not meant to be an endorsement for or against the legislation. Action updates may occur daily, if actions are taken by Congress. Newly introduced legislation will be added weekly. 

The legislative tracker is sorted by latest action. To navigate this page, you can scroll through just as you would a normal webpage. You can also click Ctrl+F on your keyboard and type in the search box. 

For additional information and to read the full text (if available), click the highlighted bill number. You can also navigate to Congress.gov and search using key terms or phrases, or the bill numbers listed below. 

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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
The Close the Gap campaign is funded by Dr. David Nichols and Mayme Boyd.
Visit familyvoices.org/closethegap to learn more.