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
THE ADMINISTRATION: President Signs Bill to Delay Deadline for Electronic Visit Verification (EVV) (Washington Update August 2, 2018)
On July 30 the president signed a bill (H.R. 6042; Public Law No: 115-222) that delays for one year (until January 1, 2020) the implementation of a requirement that Medicaid agencies adopt “electronic visit verification” (EVV) for personal care services provided at...
CONGRESS: Senate Oversight Hearing on “Immigration Enforcement and Family Reunification Efforts” (Washington Update August 2, 2018)
On July 31, the Senate Judiciary Committee, chaired by Senator Chuck Grassley (R-IA), held a hearing on efforts to reunify the immigrant families separated at the southern US border. The witnesses were all administration officials. Notably, one witness -- a social...
CONGRESS: Legislation to Deem People with Developmental Disabilities (DD) a Medically Underserved Population (Washington Update August 2, 2018)
On July 26, Representatives Seth Moulton (D-MA) and Gregg Harper (R-MS) introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act of 2018 (H.R. 6611). This bill would declare people with developmental...
Medicaid Waiver News: State Comment Periods (Washington Update August 2, 2018)
Resources on Medicaid work requirements The National Disability Navigator Resource Collaborative (NDNRC) has compiled a bank of news and resources relating to Medicaid work-requirement waivers: Summary of Posts and Resources on Medicaid Work Requirements. A blog post...
Medicaid Resources (Washington Update August 2, 2018)
Medicaid and CHIP Provide Health Coverage for Many School-Age Children, Yet Gaps Remain--a New Report from the Georgetown Center on Children and Families A new report from the Georgetown Center on Children and Families (CCF) -- Medicaid and CHIP Provide Health...
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.






















