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
Your Input Sought
Traveling by Air with Service Animals [corrected from May 31 Update.] Comments due July 9 On May 23, the Department of Transportation (DOT) published an Advanced Notice of Proposed Rulemaking (ANPRM) regarding regulations of service animals under the Air Carrier...
Other News, Information, and Resources
FDA Approves Epilepsy Drug Derived from Marijuana On Monday, June 25, the Food and Drug Administration (FDA) announced the approval of a purified form of the drug cannabidiol (CBD). The new product, called Epidiolex, was approved to treat seizures in patients two...
Affordable Care Act News and Resources: Navigator Grants Uncertain
As of June 20, the administration had not yet provided any information to about future funding to the groups that have been serving as ACA “navigators.” See Key ObamaCare groups in limbo as they await funding (The Hill, 6/20/28). Navigators assist consumers in...
Medicaid/CHIP News: Guidance on Providing EPSDT Services for Children in “Institutions for Mental Disease” (IMDs)
On June 20, the Centers for Medicare & Medicaid Services (CMS) released an Informational Bulletin that describes the requirements of section 12005 of the 21st Century Cures Act (the Cures Act) -- “Providing EPSDT Services to Children in IMDs.” This section of the...
Budget and Appropriations
Rescissions As reported in last week’s Update, the Senate voted not to take up the bill that would have rescinded funds previously designated for the Children’s Health Insurance Program (CHIP) and other programs. Because the legislation was subject to a deadline of...
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.






















