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: FY 2019 Appropriations
Update: The Senate Appropriations Subcommittee on Labor, HHS, and Education approved its version of the bill to fund those agencies in FY 2019, and the full committee approved the bill the next day. (See the committee report.) As reported in last week’s Update, the...
CMS Guidance on Medicaid Coverage of Drugs Approved by the FDA under Its “Accelerated Approval Pathway”
On June 27, the Centers for Medicare & Medicaid Services (CMS), Center for Medicaid and CHIP Services (CMCS) released guidance to states through State Release #185, titled State Medicaid Coverage of Drugs Approved by the FDA under Accelerated Approval Pathway. The...
CMS announces initiatives to strengthen Medicaid program integrity
On June 26, CMS announced ways that it would seek to strengthen program integrity. See CMS Launches Slate of Initiatives Aimed at Curbing Fraud, Waste in Medicaid (FierceHealthcare, 6/26/18).
Informational Bulletin on Medicaid Home and Community-based Services
As announced on June 28, the Centers for Medicare & Medicaid Services (CMS) released an Informational Bulletin on ensuring the health and welfare of individuals receiving Medicaid-funded Home and Community Based Services (HCBS). The Centers for Medicaid & CHIP...
CMS Rejects Massachusetts Request to Restrict Medicaid Drug Formulary
The Massachusetts Medicaid program asked the Centers for Medicare and Medicaid Services (CMS) to waive several different requirements of Medicaid law pursuant to the federal government’s waiver authority granted in section 1115 of the Social Security Act. Among the...
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.






















