UNITED SPINAL ASSOCIATION for UNITED SPINAL ASSOCIATION

Health Issues HCR

United Spinal met with researchers from the Human Engineering Research Laboratories, www.herl.pitt.edu supported by the Rehabilitation Engineering Research Center (RERC) on Physical Access and Transportation. Discussion topic was wheelchair user securement in air and ground transportation. United Spinal as a member of the Disability and Rehabilitation Research Coalition (DRRC), a coalition dedicated to improving disability and rehabilitation research policy and funding, signed onto a letter to the National Institutes of Health in response to: Notice of Availability and Request for Information; Federal Evidence Agenda on Disability Equity; FR Doc. 2024-11838. The letter read in part: We appreciate the federal governments significant efforts in recent years to invest in disability research, particularly at the National Institutes of Health (NIH) and the Administration for Community Living (ACL). United Spinal signed on to a Disability & Rehabilitation Research Coalition (DRRC) letter to offer feedback on Reforming the National Institutes of Health: Framework for Discussion. United Spinal signed on to a letter opposing a rider added in the subcommittee markup of the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies funding bill prohibiting the FDA from banning medical devices or uses of medical devices to the extent that they are court-ordered. We expressed opposition to Sec. 722 of the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2025. Worked with Sen. Marco Rubio (R-FL) and Sen. Tammy Baldwin (D-WI) regarding a press release and Congressional resolution honoring SCI Awareness Month for September 2024. Scheduled 20+ House and Senate meetings in August to discuss bowel management supplies insurance non-coverage issues for individuals with SCI and spina bifida. Met with the National Institute of Disability, Independent Living and Rehabilitation Research at the Department of Health and Human Services to review potential funding opportunities to support advancing rehab outcomes for our community. United Spinal seeks legislative or report language directing the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR) and the National Institute of Neurological Disorders and Stroke (NINDS) to collaboratively conduct a pilot program measuring the potential beneficial health and functional short- and long-term outcomes and health cost savings achieved from extended lengths of stay in initial traumatic spinal cord injury (SCI) rehabilitation settings by employing needed technologies and enhancing consumer training.

Contacted: Health & Human Services, Dept of (HHS); Food & Drug Administration (FDA); Natl Institutes of Health (NIH); SENATE; HOUSE OF REPRESENTATIVES

Transportation TRA

United Spinal supports: H.R. 3935, Securing Growth and Robust Leadership in American Aviation Act. S. 1939, FAA Reauthorization Act of 2023 H.R. 1267/ S. 545, the Air Carrier Access Amendments Act (ACAAA) H.R. 1499 / S. 753, the Good Jobs for Good Airports (GJGA) Act United Spinal Association supported and participated in a working group, dedicated to implementing 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 Association supported and participated in the U.S. Department of Transportations Office of Aviation Consumer Protection (OACP) ongoing efforts to launch a new database, Aviation Complaint, Enforcement, and Reporting System (ACERS). United Spinal, along with numerous other disability organizations, signed on to a letter respectfully requesting that the U.S. Department of Transportation deny any requests for an extension of the comment period for the notice of proposed rulemaking (NPRM) titled, Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs, DOT-OST-2022-0144. United Spinal, along with numerous other disability organizations, helped draft and submitted comments in response to the U.S. Department of Transportations Notice of Proposed Rulemaking (NPRM), Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs, (DOT- OST-2022-0144). United Spinal submitted comments in response to the Department of Transportations Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs (DOT-OST-2022-0144). United Spinal submitted comments in response to the National Council on Disabilitys (NCD) call for public comment on public facilities and transportation issues. The letter read in part, United Spinal applauds the work of the NCD in raising awareness of issues so vital and critical to our community. NCD serves as an essential bully pulpit to air our communitys legitimate grievances and continues to remind its fellow federal agencies, the White House and members of Congress about the unfinished accessibility work across America. Indeed, as we point out below, the issue of accessibility demands constant vigil in the federal community, lest we regress on this basic fundamental right. United Spinal had a conversation with the National Council on Disability regarding accessibility activities in autonomous vehicle design and accessible transportation. United Spinal supports H.R. 7126, the Autonomous Vehicle Accessibility Act, introduced by Representative Greg Stanton (D-AZ-4). United Spinal, as a member of the SecureRide Coalition, continued to coordinate with Tool, Inc., a company that has successfully submitted an application for a Department of Transportation Small Business Innovation Research (SBIR) Program 24-NH 4 Phase I Pre-Offer, Re: 24-NH4: Lightweight Universal Docking Interface Geometry Manual Wheelchair Attachment.

Contacted: HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); SENATE; Architectural & Transportation Barriers Compliance Board

Bills named: S. 753 (118th), S. 1939 (118th), H.R. 3935 (118th), H.R. 1499 (118th), S. 545 (118th), H.R. 1267 (118th), H.R. 7126 (118th)

Civil Rights/Civil Liberties CIV

United Spinal policy staff attended the 9.9.24 White House celebration of Disability Pride & the ADA's 34th Anniversary.

Contacted: Justice, Dept of (DOJ); HOUSE OF REPRESENTATIVES; White House Office

District of Columbia DOC

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

Aviation/Airlines/Airports AVI

United Spinal Association supports H.R. 1267/ S. 545, the Air Carrier Access Amendments Act (ACAAA), H.R. 1499 / S. 753, the Good Jobs for Good Airports (GJGA) Act. United Spinal supports and participates in the U.S. Department of Transportation's Office of Aviation Consumer Protection (OACP) on-going efforts to launch a new database, Aviation Complaint, Enforcement, and Reporting System (ACERS). United Spinal submitted comments to the Department of Transportations proposed rule, Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs (DOT-OST-2022-0144), along with other stakeholders. United Spinal, along with numerous other organizations, sent a letter to Transportation Secretary Pete Buttigieg requesting that the U.S. Department of Transportation close the deadline outlined in the notice of proposed rulemaking (NPRM) entitled, Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs, DOT-OST 2022-0144 sooner rather than later. The comment period for the NPRM was extended just 30 days and closed on June 12, 2024.

Contacted: HOUSE OF REPRESENTATIVES; SENATE; Transportation, Dept of (DOT)

Bills named: H.R. 1499 (118th), H.R. 1267 (118th), S. 545 (118th), S. 753 (118th)

Insurance INS

United Spinal supports: H.R. 5408 / S. 2767, the SSI Savings Penalty Elimination Act, introduced by Representative Brian Higgins (D- NY-26) and Senator Sherrod Brown (D-OH). In July, United Spinal supported a statement submitted by the cochairs of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD) of which we are a member, concerning a House hearing on June 18, 2024, entitled Work and Social Security Disability Benefits: Addressing Challenges and Creating Opportunities. The hearing was held on the important topic of barriers to workforce participation for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) beneficiaries. United Spinal, as a member of the Social Security Task Force (SSTF) of the Consortium for Constituents (CCD) with Disabilities, signed on to comments submitted to the Social Security Administrations (SSA) Commissioner, Martin OMalley in response to SSA Seeking to Simplify the Medical Record Collection Process. Concerns were expressed about the SSA-827 Proposal. The comments read in part, the SSA-827 form represents an important balance of protecting claimant privacy by requiring explicit authorization for the SSA to solicit the medical, education, and employment history necessary to adjudicate disability claims. Requested Members of Congress co-sponsor the Ensuring Access to Medicaid Buy-In Program Act.

Contacted: SENATE; Social Security Administration (SSA); HOUSE OF REPRESENTATIVES

Bills named: S. 2767 (118th), H.R. 5408 (118th)

Medicare/Medicaid MMM

United Spinal supported the Senate letter from Senators Blackburn, Casey and Duckworth. Their letter read in part, we remain concerned that CMS has not yet initiated a National Coverage Analysis (NCA) for standing systems in these wheelchairs. As you know, standing systems in Group 3 power wheelchairs offer essential benefits to individuals with severe disabilities. These systems enable users to achieve a standing position, which can greatly enhance their independence, improve metabolic functions, reduce the risk of secondary complications, such as pressure sores and osteoporosis, and improve their overall physical and mental well-being. The absence of Medicare coverage for these systems leaves many beneficiaries without access to critical technology that can significantly improve their health outcomes and quality of life." Requested Senators to sign on. Met with the Centers for Medicare and Medicaid Services in support of insurance coverage of bowel management supplies. Urge CMS to lift 'in the home' restriction under Medicare and Social Security Act language for wheelchairs. Support Medicare coverage for standing systems wheelchairs. Implement wheelchair repair and service reforms under Medicare, namely, remove prior authorization requirement for wheelchair repair for all health programs; allow for consumer self-repair for certain items on customized wheelchairs; and insurance should pay for preventative maintenance coverage (at least once every 6 months). Seek FY25 Appropriations programmatic report language: Medicare should provide coverage for individuals to obtain wheelchairs that allow them to integrate safely in both their communities and their homes. The Committee directs CMS to update the 2005 National Coverage Determination under Medicare for Mobility Assistive Equipment (MAE) by adding, and/or in the community" after "in the home. And urge the Centers for Medicare and Medicaid Services to provide Medicare coverage for standing systems in power wheelchairs to facilitate increased options for independent and community living for all wheelchair users. United Spinal Association supported a House Dear Colleague letter to the Centers for Medicare and Medicaid Services to express our support for the recent preliminary decision by the Centers for Medicare and Medicaid Services (CMS) to increase the number of billing codes for intermittent catheters. As a Steering Committee member of the Coalition to Preserve Rehabilitation, United Spinal endorsed a comment letter to the Centers for Medicare and Medicaid Services' 2025 Medicare Physician Fee Schedule Proposed Rule (Proposed Rule) dicussedin issues arond access to care for people with disabilities in general, telehealth and oral and dental health services.

Contacted: Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE

Railroads RRR

United Spinal Association participated in a meeting with Amtraks Board of Directors and senior leadership along with other representatives from disability organizations. United Spinal Association met with the U.S. Access Board to discuss United Spinals SecureRide Coalition, access to U.S postal facilities and the need for increased accessible parking spaces.

Contacted: AMTRAK - Natl Railroad Passenger Corporation

Communications/Broadcasting/Radio/TV COM

United Spinal supports H.R. 6929 / S. 3565, the Affordable Connectivity Program Extension Act. The bill would provide $7 billion to fund the ACP through FY24. United Spinal provided a letter of support for the Association of Assistive Technology Act Programs' (ATAP) proposal to the U.S. Department of Commerce, National Telecommunications and Information Administration for the Digital Equity Competitive Grant Program.

Contacted: SENATE; Commerce, Dept of (DOC); HOUSE OF REPRESENTATIVES

Bills named: H.R. 6929 (118th), S. 3565 (118th)

Financial Institutions/Investments/Securities FIN

United Spinal supports: S. 4910. ABLE Awareness Act - will provide $50 million per year for 4 years to states and consortia to increase ABLE awareness S.4911. ABLE Employment Flexibility Act - allows employer to contribute to an employees ABLE account in lieu of a 401k so that employees can save for retirement without fear of losing the federal benefits they rely on. S. 4909. ABLE Direct Deposit Act - affirms that direct deposits from employers or government programs can be made to ABLE accounts. H.R. 5408 / S. 2767, the SSI Savings Penalty Elimination Act, introduced by Representative Brian Higgins (D- NY-26) and Senator Sherrod Brown (D-OH).

Contacted: SENATE; HOUSE OF REPRESENTATIVES

Bills named: S. 4909 (118th), S. 2767 (118th), H.R. 5408 (118th), S. 4910 (118th), S. 4911 (118th)

Economics/Economic Development ECN

Met with the U.S. Census Bureau, related agencies and the White House Office of Science and Technology Policy to discuss improved data collection methods on capturing accurate numbers for the disability population in the United States.

Contacted: Commerce, Dept of (DOC); White House Office