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 (Washington Update, January 19, 2019)
The New Congress For information about the new Congress, see last week’s Update. WORTH REPEATING: Connecting With New and Returning Members of Congress The beginning of a new Congress presents a great opportunity to establish contact with new Representatives and...
Medicaid/CHIP News, Information, and Resources (January 19, 2019)
Medicaid’s Future Last week, the publication Politico reported that the administration is exploring how it might be able to implement some sort of “block grant” concept in Medicaid without legislation. See Trump Wants to Bypass Congress on Medicaid Plan - Block Grants...
Affordable Care Act and TRICARE (Washington Update, January 19, 2019)
AFFORDABLE CARE ACT The annual open-enrollment season for the federal health insurance exchange (HealthCare.gov) ended on December 15. Some state exchanges are still open for enrollment. TRICARE Government Shutdown: Some Allotment Payments Affected The partial...
Other News, Information, and Resources (Washington Update, January 19, 2019)
Consideration of Pain in Adult and Child Disability Claims The Office of Disability Policy of the Social Security Administration (SSA) is requesting public comments about the consideration and documentation of pain in the medical evidence used in connection with...
Your Input Sought/Of Possible Interest (Washington Update, January 17, 2019)
Your Input Sought NEW Consideration of pain in adult and child disability claims – Due February 15, 2019 The Office of Disability Policy, Social Security Administration (SSA) has issued an Advance Notice of Proposed Rulemaking (ANPRM) to solicit public comments and...
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.






















