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
Affordable Care Act (ACA) News (Washington Update, August 8, 2018)
More on “Short-Term, Limited-Duration” Plans As reported in the August 2 Update, the administration issued a final rule on August 1 to permit insurers to sell on “short-term, limited-duration” insurance (STLDI) plans that are effective for up to one year and are...
Zika News, Information, and Resources (Washington Update, August 8, 2018)
New Report and Resources on Babies with Zika Virus in the US Territories On August 7, the Centers for Disease Control and Prevention (CDC) released the largest report to-date on health outcomes in US babies affected by the Zika virus. The report is about babies born...
Final Rule on Transparency of Hospital Charges (Washington Update, August 8, 2018)
As explained in this August 2 press release, the Centers for Medicare and Medicaid Services (CMS) last week released a final rule on Medicare reimbursement for hospitals and other facilities. The rule also includes provisions intended to increase the transparency of...
Palliative Care Campaign and Resources (Washington Update, August 8, 2018)
The National Institute of Nursing Research (NINR) has developed the Palliative Care: Conversations Matter ® campaign to increase the use of palliative care for children and teens living with serious illnesses. Provided on the campaign website are materials for...
ABLE National Resource Center Launches 2018 #ABLEtoSave Campaign (Washington Update 8/8/18)
August 2018 is #ABLEtoSave month, a nationwide awareness campaign led by the ABLE National Resource Center (ANRC) to provide information about ABLE accounts. During each of the four weeks in August, ANRC will provide resources, including: Informational videos Webinars...
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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