2023 Reeve Advocacy Roundup
Thanks to the dedication and focus of our growing grassroots community, the Christopher & Dana Reeve Foundation advanced important advocacy priorities for people impacted by paralysis. In 2023, our online advocates for change (11,000+) and 77 Reeve Regional Champions sent over 4,000 emails educating elected officials regarding key disability policies. We need to keep this momentum up for 2024.
In November, the Paralysis Resource Center (PRC) faced a significant funding threat as the House majority proposed a nearly 50% cut alongside reductions to various domestic programs. A small victory was achieved before Thanksgiving when the House did not bring the bill for a vote, instead extending funding for programs in the Department of Health and Human Services (HHS) until February 2nd.
The Reeve Foundation mobilized its grassroots network to resist the proposed cut, emphasizing the potential impact on the PRC and the community. Although recent advocacy efforts seem effective, the threat of a cut in 2024 persists until final fiscal year amounts are determined.
House and Senate leaders announced a spending deal that may prevent drastic cuts, but ongoing advocacy is crucial. If a deal is not reached by February 2, a year-long continuing resolution (CR) could lead to program downsizing, including potential across-the-board reductions. The Reeve Foundation expresses gratitude to over 1,000 individuals who acted on our recent Action Alert, urging House Members and Senators to oppose cuts and support full funding for the PRC in FY 2024.
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The Reeve Foundation organized its first Virtual Congressional Advocacy Day in May, bringing together over 40 advocates, to connect with federal elected officials and advocate for priorities impacting the paralysis community. Advocates emphasized the importance of the Paralysis Resource Center (PRC), improved airline travel for people with disabilities, and funding for caregiving solutions.
Additionally, we hosted three Regional Advocacy Trainings, including in-person sessions in Shippensburg, PA, and Abbeville, LA, and a virtual training for Alabama. Sessions focused on legislative engagement, disability awareness, and improving inclusivity for individuals living with paralysis.
In May, the Centers for Medicare and Medicaid Services (CMS) issued a significant National Coverage Decision (NCD) recognizing the medical necessity of seat elevation systems in power wheelchairs, marking a substantial victory for the paralysis community. While the Reeve Foundation is grateful to our advocates for their efforts, it acknowledges the ongoing need for advocacy regarding coverage for standing systems, with plans to provide information on advocacy opportunities as they arise.
Reeve advocates continued urging Congress to pass a comprehensive FAA Reauthorization that ensures barrier-free air travel for passengers with disabilities. While the current FAA Reauthorization was extended until March 8, an updated Action Alert for 2024 is anticipated.
The Department of Transportation (DOT) mandated a new rule requiring US airlines to enhance restroom accessibility for wheelchair users on single-aisle aircraft, a significant victory achieved through years of collaboration with disability organizations. Additional details can be found in the DOT press release.
In 2023, the 50th anniversary of the Rehabilitation Act of 1973, HHS proposed updates to Section 504, focusing on prohibiting disability-based discrimination in various programs and activities. The proposed rule addresses discrimination in medical treatment, value assessments, access to medical equipment, digital platforms, and child welfare programs. HHS is reviewing public comments before finalizing the rule, expected in 2024. We commend those who voiced their opinions on the proposed updates.
Finally, the National Institutes of Health (NIH) announced a significant victory for the community by designating people with disabilities as a health disparity population. Acting NIH Director Dr. Lawrence Tabak expressed gratitude for the disability community's input, highlighting that this designation enables NIH funding for projects addressing disability health disparities and promotes inclusivity in clinical research. The Reeve Foundation appreciates the community's dedication and encourages continued engagement for further policy improvements.
Please sign up to become an advocate or contact Gerard Arnum, our Grassroots Advocacy Manager, at garnum@reeve.org and learn more about our Regional Champions Program.
Watch the January 2024 Regional Champions Webinar here.