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/Of Possible Interest (Washington Update, August 29, 2018)
Your Input Sought NEW Survey on attending genetics appointments after referrals Open until Oct. 12 The NYMAC (New York-Mid-Atlantic Regional Genetics Network) -- one of seven regional networks in the country funded by the Health Resources and Services Administration –...
Upcoming Webinars from the Field (Washington Update, August 22, 2018)
TODAY: A Conversation on Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions Wednesday, August 22, 1:00-2:00 pm ET Lucile Packard Foundation for Children’s Health Background information. TODAY: Protecting Pregnant Women and Babies...
Lawsuit Challenges Arkansas Work Requirements (Washington Update, August 22, 2018)
As reported in earlier Updates, Medicaid beneficiaries in Kentucky challenged the administration’s approval of the waiver application that would allow the state to establish work requirements for beneficiaries, among other things. A federal court invalidated approval...
Parents Separated from Their Children Seek a Second Chance at Making Their Asylum Claims (Washington Update, August 22, 2018)
Parents who failed screening interviews for their asylum cases are seeking a second chance to be interviewed. They allege that the interviews were improperly conducted, in part because the parents were traumatized from being separated from their children. See New...
Supreme Court Nomination (Washington Update, August 22, 2018)
Supreme Court nominee Brett Kavanaugh has been doing meetings with Senators in preparation for his confirmation hearing. Among those he has met with are moderate Democrats who are up for reelection this year and therefore might be open to voting for his confirmation. ...
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.






















