Public Policy
Policy Priorities to Support Children with Special Health Care Needs and Disabilities and Their Families
Our Strategic Policy Priorities
Children and youth with special health care needs and disabilities, and their families, face systemic barriers and biases that impede their ability to experience their best possible lives. Systems of care do not respond to their needs holistically or facilitate access to supports that enhance their quality of life.
To make the most impact, we focus our policy actions across all levels of government – federal, state, and local. We work with our family and organizational partners to lean on the various levers of policy change through education and advocacy.
Our current policy agenda includes:
- Expand access to peer-to-peer support for families of children and youth with special health care needs
- Support and expand 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 Briefs
Recent Policy-Related News
Continuing Resolution
As December 20 approaches, Congress is faced with a deadline to agree on a budget or pass a continuing resolution (CR) to keep the government running. With a change in presidential leadership, it is more than likely Congress will decide on a CR. This would temporarily fund the government into early 2025.
Office for Civil Rights – Letter on Civil Rights Language Access Requirements
On December 5, the Office for Civil Rights (OCR) released a “Dear Colleague” letter to help providers and other better understand their responsibilities under Section 1557 of the Affordable Care Act (“Section 1557”). According to recent census data, nearly 68 million people in the United States speak a language other than English at home. Having access to language assistance is critical to achieving equity in health care.
What is a lame duck session?
The lame duck session is any meeting of the House of Representatives or Senate that takes place after a November election and before the new Congress starts their new session. This also applies to presidents and other lawmakers who are retiring or did not win their...
NIH Strategic Plan for Disability Research
The National Institutes of Health is in the first stage of developing an agency-wide NIH Strategic Plan for Disability Research. The strategic plan will identify scientific themes and develop operational goals and objectives to advance research activities that promote...
Administration for Community Living (ACL) “Community Collaborations for Employment”
ACL awarded a Project of National Significance on Community Collaborations for Employment to increase and enhance collaborations across existing local systems to maximize a seamless experience and outcomes of youth with intellectual and developmental disabilities...
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.
Encourage confidence to act