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
TRICARE News (Washington Update, August 22, 2018)
August 23 Webinar: Bring Your TRICARE Benefit Questions to August 23 Webinar (article) Webinar: Ask TRICARE -- Thursday, August 23, 1:00-2:00 pm ET. Register. Benefit Updates: Using Your TRICARE Benefit with Other Health Insurance (TRICARE Benefit Update, 8/7/18) How...
From the Food & Drug Administration Newsroom: Generic Epigen (Washington Update, August 22, 2018)
Aug. 16 -- FDA Approves First Generic Version of Epipen The U.S. Food and Drug Administration today approved the first generic version of EpiPen and EpiPen Jr (epinephrine) auto-injector for the emergency treatment of allergic reactions, including those that are...
Q&A from a Conversation on Models of Care Delivery (Washington Update, August 22, 2018)
Read the responses to questions that were submitted during the June 28 "Conversation on Models of Care Delivery for Children with Medical Complexity," a webinar in the Lucile Packard Foundation for Children’s Health series, Building Systems that Work for Children with...
Materials from Webinar on Medicaid Storytelling (Washington Update, August 22, 2018)
The webinar recording and slides from last week’s webinar, “Demonstrating Medicaid’s Value through Storytelling,” are now available on the website of the Georgetown Center on Children and Families here.
CDC Training and Materials on Health Literacy (Washington Update, August 22, 2018)
CDC has created the Health Literacy Training Plan to help build knowledge and skills consistent with new, professional communication practices. (You must create an account to access the information.) The training starts with the "Health Literacy for Public Health...
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.
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