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
Your Input Sought/Announcements/Of Possible Interest (Washington Update November 8, 2018)
Your Input Sought Nominations Sought for Federal Family Caregiving Advisory Council – due Dec. 3 The Secretary of Health & Human Services (HHS) has posted a Notice requesting nominations for individuals to serve on the Family Caregiving Advisory Council, which was...
Resources for Open Enrollment (Washington Update, October 31, 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. Federal Health Insurance...
Webinars from the Field (Washington Update, October 31, 2018)
NEW Guardianship: Consider the Alternatives Wednesday, October 31, 12:00-1:00 pm ET Vermont Family Network NEW The NIH All of Us Research Program and Precision Medicine: Reflections from a Rural State Wednesday, October 31, 2:00-3:30 pm ET University of Montana Rural...
The Administration (Washington Update, October 31, 2018)
New HRSA Data Website The Health Resources and Services Administration (HRSA) has unveiled a new data and information website at https://data.hrsa.gov/. The website user can find health centers and health shortage areas, and can obtain fact sheets about HRSA...
Congress (Washington Update, October 31, 2018)
Recess Congress is in recess until November 13. This is a good time to visit your Senators and Representatives in their local offices, or attend public events, to educate them about children with special health care needs, the needs of their families, and your state’s...
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