UNITED SPINAL ASSOCIATION

United Spinal Association supports: Better Care Better Jobs Act (H.R. 547/S. 100), the HCBS Access Act (H.R. 1493/S. 762), the HCBS Relief Act (H.R. 6296/S. 3118). United Spinal raised the need to introduce federal legislation to address wheelchair repair reform, and legislation or report language to improve spinal cord injury rehabilitation outcomes. Follow up contacts with members of Congress on United Spinals Virtual Advocacy Day included recommendations for our members to advocate for the following policy issues with their members of Congress: Increase funding for SCI Model Systems. United Spinal policy staff advocated for Senators and Representatives to sign onto respective Dear Colleague letters for funding supporting increased funding for the Model Systems program and the Model Systems Knowledge Translational Center (MSKTC), funded by the National Institute on Disability, Independent Living, Rehabilitation Research (NIDILRR) at the U.S. Department of Health and Human Services and housed under the Administration for Community Living (ACL) in the FY 2025 Labor, Health and Human Services, Education Appropriations. The letter was addressed to the bipartisan leadership of the Senate Labor HHS Education Subcommittee on Appropriations. The letter read in part: The Model Systems program provides the entirety of the rehabilitation process from emergency services at the time of an injury through a persons return to full participation in the community for people with spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury. The Model Systems program has not seen an increase in funding since 2006. Advocate for support of a House Dear Colleague letter as well for increaed funding for Spinal Cord Injury Model Systems. Continued raising support for FY2025 report language to direct the Centers for Medicare and Medicaid Services (CMS) to add and/or in the community to CMS policy for mobility assistive equipment and add and/or in the community to Social Security Act 1861 (n) which states that durable medical equipment including wheelchairs be used in the patients home only and support Medicare coverage for standing systems in power wheelchairs to facilitate increased options for independent and community living for all wheelchair users. As a member of the Disability and Rehabilitation Research Coalition, United Spinal, along with numerous other disability organizations, signed on to a letter of thanks to Anjali Forber-Pratt, Ph.D. director, National Institute on Disability, Independent Living, and Rehabilitation Research for the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) 2024-2028 Long Range Plan. United Spinal helped draft a United Spinal letter of interest for an Administration for Community Living grant: Disability and Rehabilitation Research Projects (DRRP) Program: Enhancing the Accessibility of Air Travel. As a member of the Disability & Rehabilitation on Research Coalition (DRRC), United Spinal, along with numerous other disability organizations, signed on to a letter to Chiquita Brooks-LaSure, Administrator, Centers for Medicare and Medicaid Services to provide comments in response to the request for information on Research Data Request and Access Policy Changes. As a member of the Consortium for Constituents with Disabilities Technology and Telecommunications Task Force, United Spinal, along with numerous other disability organizations sent a letter to the bipartisan leadership of the Senate and House Labor, Health and Human Services and Education Appropriations Committees in support for the inclusion of $42 million in the Fiscal Year (FY) 2025 Senate Labor, Health and Human Services and Education Appropriations (LHHS) bill for the Assistive Technology (AT) Act Programs. United Spinal supports H.R 1691 - Ensuring Patient Access to Critical Breakthrough Products Act. Wrote letters with CMS and met with CMS to talk about the need for Medicare coverage of transanal irrigation. Wrote letter to CMS DME MACS regarding needed reform in ostomy supplies coverage under Medicare. Health equity issues - Met with CMS, NIH, ACL and the White House at the Danish Embassy discussing the challenges of health equity concerns in the medical supplies sector. As part of the Coalition to Preserve Rehabilitation, United Spinal signed onto the FY2025 in-patient rehab proposed rule and the RFI on Medicare Advantage data. As part of the ITEM Coalition, United Spinal also submitted a letter to CMS in support of standing systems (power wheelchairs) and another letter in support of coding reform for catheters. United Spinal also signed on to a letter to President Biden, with multiple care support groups, in support of the creation of an Office for Caregiver Health.

United Spinal Association supports: H.R. 3935/S. 1939 Securing Growth and Robust Leadership in American Aviation Act/FAA Reauthorization Act of 2023 United Spinal Association supports full inclusion of all of the provisions contained in H.R. 1267/ S. 545, the Air Carrier Access Amendments Act (ACAAA) and H.R. 1499 / S. 753, the Good Jobs for Good Airports (GJGA) Act. As one of the Air Carrier Access Act (ACAA) Advisory Committee recommendations: a U.S. Department of Transportation (DOT) Public Awareness Campaign to Ensure Air Travelers with Disabilities Know Their Rights - United Spinal partcipated and provided recommendations. United Spinal Association supported is participating in the U.S. Department of Transportation's Office of Aviation Consumer Protection (OACP) ongoing efforts to launch a new database, Aviation Complaint, Enforcement, and Reporting System (ACERS). In support of Democratic Committee Members of the U.S. House Committee on Transportation and Infrastructure letter sent to Airlines for America (A4A) President and CEO Nicholas Calio expressing concern and dismay regarding the continued trend of mishandled wheelchairs and scooters.

United Spinal participated in a quarterly meeting of the Disability Community Advisory Group with DC Homeland Security Emergency Management Agency.

United Spinal responded to the Federal Communications Commissions The Reinstatement of Net Neutrality Rules (Docket No. 23-320) with comments. Which reads in part, Unfortunately, for the millions of people whom United Spinal represents, in too short a timeframe, the FCC has opined and acted on the need for dramatically more and dramatically less regulation with diametrically opposed voices. United Spinal supports H.R. 6929, The Affordable Connectivity Program Extension Act, introduced by Representative Yvette D. Clarke (D-NY-9). The bill would provide $7 billion to fund the ACP through FY24.

United Spinal signed a comment letter to the FDA in support of a proposed ban on electric shock devices for use on people with disabilities. H.R. 7351 / S. 3747, Removing Access Barriers to Running for Elected Office for People with Disabilities Act H.R. 7389 / S. 3748, Accessible Voting Act of 2024 H.R. 7350 / S. 3749, The Accessibility and Inclusion to Diversity Local Government Leadership Act As a member of the Disability & Rehabilitation Research Coalition (DRRC), United Spinal, along with numerous other disability organizations, signed on to a letter to the Director of the U. S. Census Bureau, Robert L. Santos to express our sincere gratitude for the recent decision by the U.S. Census Bureau to halt the proposed changes to the American Community Survey (ACS) disability questions for collection year 2025 and reconsider additional questions for future use. This decision demonstrates a commendable commitment to listening to the concerns of the disability community and ensuring that our voices are heard in the development of policies that directly impact us. As a member of the Disability and Rehabilitation Research Coalition (DRRC), United Spinal, along with numerous other disability organizations, requested a meeting with the Director, National Institutes of Health (NIH), Monica Bertagnolli, M.D. to discuss the implementation of the recommendations of the Working Group on Diversitys Subgroup on Individuals with Disabilities (WGD-SID Recommendations). The letter read in part: These recommendations were unanimously endorsed by the Advisory Committee to the NIH Director (ACD) on December 9, 2022. Several have already been adopted, including the official designation of people with disabilities as an NIH health disparity population on September 26, 2023, but other critical actions, including the creation of a Disability Research Office (DRO), have not yet occurred. We want to help. As a member of the Consortium for Constituents with Disabilities (CCD) Technology and Telecommunications Task Force, United Spinal support a letter the Task Force sent the bipartisan leadership of the Senate Commerce, Science, and Transportation Committee and the House Energy and Commerce Committee in strong support of S.2494 /H.R.4858, the Communications, Video, and Technology Accessibility Act (CVTA). Engaged with the White House and ACL on a range of isssues related to medical supplies and durable medical equipment when celebrating the 25th anniversary of Olmstead at the Department of Justice.