2018 Reeve Foundation Advocacy wrap up

Posted by Reeve Staff in Daily Dose on January 24, 2019 # Advocacy and Policy

In 2018, Reeve advocates contacted Congress about the policy needs of the paralysis community and won on several fronts. In total, 888 advocates connected with lawmakers to share their opinions on PRC funding, health care access, civil rights and improvements to air travel for individuals living with disabilities. Our Regional Champions also developed personal relationships with their Representatives and Senators and shared what it is really like living and caring for those with paralysis.

Thank you to every advocate who acted on our behalf in 2018. By informing policymakers what is fundamentally important to people living with paralysis and their loved ones, you helped Congress make the right decisions and, hopefully, shaped their outlook and decision-making for the future.

Below is a recap of what we—the Reeve advocates—accomplished for the many millions of Americans living with paralysis:

  • Eliminated the cap on Medicare therapy services. This cap restricted the amount of physical, occupational and speech therapy a Medicare beneficiary could receive. Individuals will no longer be denied therapy if they need it to help enhance their rehabilitation, health and recovery.
  • Increased federal resources for the National Paralysis Resource Center (PRC) by nearly $2M dollars. With these additional resources, we can continue to assist the many thousands who contact the Reeve Foundation for personalized support, local resources, peer mentorship and grant opportunities. This amount was in addition to funding to support state-based resources that will also serve the paralysis community.
  • The National Institutes of Health (NIH) saw huge funding increases of a total of $5 billion dollars between FY’17 and FY’19. We are thrilled that more funding will be invested in advancing vital research and speeding the development of treatments for paralysis that individuals will feel in their everyday lives.
  • Critical funding for caregivers was also included to support the RAISE Family Caregivers Act. The RAISE Act requires Congress to develop a national strategy to support family caregivers. The Reeve Foundation also nominated three incredible advocates for consideration to the Family Caregivers Advisory Council established by this law.
  • Key measures from the Air Carrier Access Amendments Act in the FAA Reauthorization Act of 2018 were passed to protect the rights of disabled airplane passengers and close service gaps that passengers with disabilities frequently encounter in air travel.
  • Hundreds of advocates participated in our My Wheelchair is Not an Accessory Instagram campaign. This campaign implored Congress to pass H.R. 7217, the "Improve Act”, which included important provisions to protect access to Complex Rehab Technology (CRT) manual wheelchairs. Unfortunately, the Senate did not pass it at the end of 2018 but we are fired up to get this finished in 2019!

Looking forward to 2019

This year, the Reeve Foundation will work to enhance and grow our network of advocates and increase participation in our Regional Champion program. Our goal is to continue to train a Regional Champion in every congressional district across the country. These Champions will serve as legislative “first responders,” sending letters and making phone calls to elected officials when important issues arise, as well as develop relationships with legislators and key staff; attend select in-district legislative events, such as town halls and coffees; recruit others to join our advocacy efforts, and work with the Reeve Foundation to share your story via photos, videos, and blog posts across our digital channels. While we had multiple wins in 2018, we cannot rest on our laurels when there is more work to be done to champion the rights and needs of all individuals living with paralysis. If you are interested in learning about what is on our radar for this year, please review our 2019 federal advocacy priorities.

Get connected!

We do not want you to miss the opportunity to use your voice when it is needed most. There are times when we only have days to move legislative mountains, so it is critical that you become an online advocate to keep abreast of important updates and take action when critical policy issues are being discussed in Congress. Also, if you are interested in learning more about the Reeve Foundation’s Regional Champion program, please contact Brittany Branard at [email protected]

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.