UNITED SPINAL ASSOCIATION

Health Issues

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.