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
Webinars from the Field (Washington Update, February 14, 2019)
Promising Practices in Managed Long-Term Services and Supports: Network Adequacy and Accessibility Friday, February 15, 2:00-3:30 pm ET Community Living Policy Center Guidelines-Based Asthma Care Coverage in Medicaid: New Tools for Stakeholders Tuesday, February 19,...
Congress (Washington Update, February 14, 2019)
Autism CARES Act On February 8, the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act (S. 427; H.R. 1058) was introduced in the Senate by Senators Robert Menendez (D-NJ), and Mike Enzi (R-WY). Representatives Chris Smith (R-NJ) and Mike...
Medicaid News and Resources (Washington Update, February 14, 2019)
Medicaid Waivers Utah GOP Shrinks Medicaid Expansion, Defying Voters The Republican governor signed a bill curbing Obamacare's Medicaid expansion, months after voters approved the program. (Politico, 02/11/2019). REMINDER: Approved and pending Medicaid waiver...
TRICARE (Washington Update, February 14, 2019)
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 (EFMP), which was created to enhance and improve DoD support around the world for military...
Other News, Information, and Resources (Washington Update, February 14, 2019)
Federal Poverty Guidelines The Federal Register Notice for the 2019 Poverty Guidelines was published February 1, 2019, although guidelines were effective as of January 11, 2019. For the 48 contiguous states and the District of Columbia, the guidelines are below:...
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.






















