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
Webinars from the Field (Washington Update, March 14, 2019)
Identifying and Serving Children with Health Complexity: Spotlight on Pediatric Care Together Thursday, March 14, 1:30-2:30 pm ET Lucile Packard Foundation for Children’s Health The webinar will be a discussion about the report, Identifying and Serving Children with...
The Administration (Washington Update, March 14, 2019)
President’s Budget Proposal On Monday, March 11, the president released his budget proposal for FY 2020, which begins on October 1, 2019. Among other things, his budget proposes to turn Medicaid into a state block grant, and mandate that states establish work...
Congress (Washington Update, March 14, 2019)
Medical Expense Deduction On March 4, Senators Chuck Grassley (R-IA) and Ron Wyden (D-OR), Finance Committee Chairman and Ranking Member, respectively, introduced the Tax Extender and Disaster Relief Act of 2019 (S. 617). The bill would extend, for an additional two...
Medicaid News, Information, and Resources (Washington Update, March 14, 2019)
Medicaid Waivers Several states (MS, OK, SD, TN) have requested Medicaid waivers to establish “community engagement” (work, school) requirements on extremely low-income parents/caretakers of children on Medicaid. On March 6, over 50 healthcare organizations sent a...
Affordable Care Act (Washington Update, March 14, 2019)
Ask KFF: Karen Pollitz Answers 3 Questions on Why Insurers Deny Claims (Kaiser Family Foundation, 3/6/19) Shopping for a Short-Term Plan? The Information You Get about it Will Depend on Your State (blog of the Georgetown Center on Health Insurance Reform, 3/7/19)...
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.






















