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
Your Input Sought (Washington Update, October 25, 2018)
MCHB Grand Challenges – deadline extended to Nov. 9 for CYSHCN Challenge As reported earlier, the Maternal and Child Health Bureau will award four prizes in a Grand Challenges competition to develop innovative, low-cost, and scalable solutions to improve the health of...
Resources for Open Enrollment (Washington Update, October 25, 2018)
2019 Open Enrollment runs from November 1 through December 15, 2018 Plans sold during Open Enrollment start January 1, 2019. After December 15, consumers can enroll in 2019 health insurance only if they qualify for a Special Enrollment Period. Resources for...
Webinars from the Field (Washington Update, October 11, 2018)
Certification for I&R Specialists in Aging/Disabilities (CIRS-A/D) Webinar Training Thursday, October 11, 1:00-5:00 pm ET (4 hours) National Information and Referral Support Center, National Association of States United for Aging and Disabilities (The webinar will...
For Those Assisting Victims of Hurricane Florence (Washington Update, October 11, 2018)
[From Health Insurance Marketplace email of 9/20/18. No URL found for this info.] On August 9, 2018, CMS released guidance clarifying Federally-facilitated Exchange (FFE) Special Enrollment Period (SEP) policy for consumers impacted by an emergency or major disaster...
THE COURTS (Washington Update, October 11, 2018)
The Supreme Court began its October term on October 1, and now has its new ninth member, Brett Kavanaugh, who replaced retired Justice Anthony Kennedy, for whom Kavanaugh once served as a clerk. Kavanaugh was sworn in shortly after being confirmed on Saturday, October...
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.






















