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.
Recent Policy Briefs
Recent Policy-Related News
Updates on Budget Resolution and Reconciliation – April 2025
Congress is finishing up its two-week recess after successfully adopting the budget resolution which contained President Donald Trump’s legislative priorities on tax, border, energy, and more. The resolution still requires the Energy and Commerce committee (E&C)...
Department of Health and Human Services Restructuring
On Thursday, March 27, the Trump Administration announced a major restructuring of the Department of Health and Human Services (HHS). The plan would reduce the total HHS workforce by 20,000 people. The restructuring would also reduce the number of divisions of HHS...
1115 Waiver Amendments – April 2025 Update: Open Comment Periods
Learn more about proposed Medicaid 1115 Waiver Amendments for Arizona, Ohio, and Georgia. For more information, reach out to Wesley at publicpolicy@familyvoices.org. Arizona – Arizona’s proposed 1115 waiver amendments include adding work reporting requirements, time...
Medicaid Covers Nearly Half of All Children with Special Health Care Needs. Funding Cuts Could Terminate Their Access to Care.
Nearly 14 million children in the U.S. have special health care needs — and almost half of them have Medicaid. Medicaid is health coverage that covers a range of basic primary care and specialized health services that help children with complex and chronic needs or...
Joint Statement on Upholding Scientific Integrity and Supporting the Autism Community
Leading Autism and disability organizations -- including Family Voices, the Autistic Self Advocacy Network, Autism Society of America, Autism Speaks, The Arc, and other partners across the disability and public health sectors -- stand united in our call for...
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.
Encourage confidence to act