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/Of Possible Interest (Washington Update, September 12, 2018)
Your Input Sought 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 – is...
Upcoming Webinars from the Field (Washington Update, August 29, 2018)
NEW/TODAY Three-Topic Marketplace Webinar (for Navigators and Certified Application Counselors) Wednesday, August 29, 2:00-3:00 pm ET Centers for Medicare and Medicaid Services (CMS) Intended for Topics: Certified Application Counselor Program Refresh Coverage Options...
The Courts (Washington Update, August 29, 2018)
On September 4, the Senate Judiciary Committee will begin hearings on the confirmation of Judge Brett Kavanaugh to be an Associate Justice on the Supreme Court. The following day a hearing will begin in the case of Texas v. Azar (explained), in which twenty states...
Congress: Senate Republicans Introduce Bill on Pre-Existing Conditions (Washington Update, August 29, 2018)
On August 23, Senator Thom Tillis (R-NC) and nine other Republican Senators, introduced the ‘‘Ensuring Coverage for Patients with Pre-Existing Conditions Act’’ (S. 3388). [See the bill text; legislative status and cosponsors; Tillis press release.] Among the...
Congress: Budget and Appropriations (Washington Update, August 29, 2018)
On August 23, the Senate passed (by 85-7) an $856.9 billion appropriations bill (H.R. 6157) to fund the Department of Defense and the Departments of Labor, Health and Human Services, and Education (“Labor-HHS”) for FY 2019, which begins on October 1, 2018. The bill...
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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