Public Policy
Policy Priorities to Support Children with Special Health Care Needs and Disabilities and Their Families
Our Strategic Policy Priorities
Family Voices continues to advocate for programs and policies that best serve children and youth with special health care needs and disabilities. Our objective is to develop policy and legislation with full family engagement and improve systems of care for CYSHCN and their families.
We continue to support youth and family leaders so they can advance policy priorities that bring us closer to our organizational vision that all children, youth, and families, especially those with special health care needs and disabilities, experience their best health and quality of life. Our 2026-2027 policy priorities were refined in collaboration with family and youth leaders.
Our 2026-27 policy agenda includes:
- Expand access to peer-to-peer support for families of children and youth with special health care needs
- Support 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.
Recent Policy Statements
Family Voices supports home- and community-based services for children and adults with special health care needs and disabilities.
Recent Policy Briefs
Recent Policy-Related News
CONGRESS (Washington Update, February 20, 2019)
ACE Kids Act Introduced in the House and Senate During the last Congress, the Advancing Care for Exceptional Kids Act (ACE Kids Act) was passed by the House as part of a larger bill, but did not make it to the Senate. Since it is a new Congress, all legislation must...
MEDICAID/CHIP NEWS, INFORMATION, AND RESOURCES (February 20, 2019)
MEDICAID WAIVERS Updated 1915(c) Waiver Application On January 28, 2019, CMS released a revised application and technical guide for Medicaid 1915(c) waivers, used to provide home-and community based services. According to this information provided by the National...
TRICARE (Washington Update, February 20, 2019)
Understanding Your TRICARE Explanation of Benefits (Benefit Update, 2/19/19) WORTH REPEATING: Final Rule on Exceptional Family Member Program (EFMP) On February 13, the Department of Defense (DoD) issued a final rule (PDF) about the Exceptional Family Member Program...
OTHER NEWS, INFORMATION, AND RESOURCES (Washington Update, February 20, 2019)
From the Agencies: From the Department of Education: FERPA and school security On February 5, the Department of Education’s Privacy Technical Assistance Center (PTAC) released a publication, School Resource Officers, School Law Enforcement Units, and the Family...
ANNOUNCEMENT/YOUR INPUT SOUGHT/OF POSSIBLE INTEREST (Washington Update, February 20, 2019)
WORTH REPEATING: ANNOUNCEMENT The HHS Office of Minority Health (OMH) has announced that the Youth Health Equity Model of Practice (YHEMOP) Summer 2019 Health Equity Fellow Application is now available. Through its YHEMOP program, OMH places students enrolled in...
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.






















