2019 Advocacy Wrap-up & Taking Action in 2020 (very soon)!

Posted by Reeve Foundation Staff in Daily Dose on February 19, 2020 # Advocacy and Policy

In 2019, Reeve advocates contacted Congress about the policy needs of the paralysis community and won on several fronts. In total, 5,403 advocates connected with lawmakers, sending 17,818 emails to share their opinions on PRC funding, health care access, civil rights and improvements to air travel for individuals living with disabilities. By the end of December 2019, our total number of online advocates increased 36% to 6,183 online advocates! Our Regional Champions continue to develop personal relationships with their Representatives and Senators and share what it is really like living and caring for those with paralysis.

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

  • Increased federal resources for the National Paralysis Resource Center (PRC) by an additional 1 million to $9.7 million for Fiscal Year ‘20. This was a huge win, especially since the President has called for eliminating PRC funding in his budget request for the last three years. With these additional resources, we can continue to assist the many thousands of individuals, families and community organizations who contact the Reeve Foundation for personalized support, local resources, peer mentorship and grant opportunities. This $9.7 million includes $1 million for the Administration for Community Living’s Paralysis Resource Center (PRC) State Pilot Program grants, which are not operated by the Christopher & Dana Reeve Foundation.
  • Improved Access to Complex Rehab Technology (CRT) Manual Wheelchairs. After years of advocacy, Congress finally passed legislation with provisions that permanently protect Complex Rehab Manual Wheelchairs from the Medicare Competitive Bidding Program and stops Medicare from inappropriately applying Competitively Bid rates to components (a/k/a accessories) used with these specialized wheelchairs for 18 months.On behalf of the members of our community using these devices, the Reeve Foundation will monitor the implementation of these provisions.
  • Increased research funding for SCI and paralysis at The National Institutes of Health (NIH) and the Department of Defense (DOD). The NIH saw continued funding increases of a total of $2.6 billion dollars to $41.7 billion. 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. The Fiscal Year ‘20 Defense Appropriations Act provides $40 million to the Department of Defense Spinal Cord Injury Research Program (SCIRP) to support innovative, high-impact spinal cord injury (SCI) research.

Looking forward to 2020
This year, the Reeve Foundation will continue to work to enhance and grow our online network of advocates and increase participation in our Regional Champions program. Our goal is to increase online advocates to 10,000 (10k by 2020), which I know we can achieve. The momentum in 2019 created real change, and we only want to expand our efforts. We will continue to aim 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.

We will also spend more time educating advocates about research advocacy. We plan on educating advocates about how to be more involved in research advocacy and giving advocates opportunities to learn more about Reeve’s research priorities as well as what is happening at the NIH and the DOD.

While we had multiple wins in 2020, 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. In this environment, even fighting to hold onto the gains we’ve made takes engagement and persistence. Please be ready to take action. We know Congress not only continues to fund the PRC, but has continued to provide funding increases because of your advocacy and persistence. We must remain diligent.

If you are interested in learning about what is on our radar for this year, please review our 2020 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 Champions program, please contact Kim Beer at [email protected]

Again, thank you to each and every advocate that took action in 2019. Your voice improves the lives of those in our community and creates lasting impact for years to come.

Become a Reeve Foundation advocate!

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.