UNITED SPINAL ASSOCIATION for UNITED SPINAL ASSOCIATION
What was lobbied
12 issue areas, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
United Spinal Association advocated for and expressed thanks to Senator Marco Rubio (R-FL) and Senator Tammy Baldwin (D-Wisconsin) for championing the passage of a resolution designating September 2023 as National Spinal Cord Injury Awareness Month. United Spinal Association, as a member of the Consortium for Constituents with Disabilities (CCD) and several of its task forces, signed on to a letter commending and thanking the Secretary of the Department of Health and Human Services, Xavier Becerra, and Melanie Fontes Rainer, Director Office for Civil Rights for the publication of its historic proposed rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities - the 504 rule/Rehabilitation Act. United Spinal Association, along with numerous other disability organizations, as members of the Disability Rehabilitation Research Consortium, signed a letter to the bipartisan leadership of the U. S. Senates Committee on Appropriations, expressing serious concerns with the proposed $14 billion in cuts and eliminations of programs for the Department of Health & Human Services (HHS) in the House of Representatives proposed FY 2024 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) appropriations bill. On September 26, the National Institutes of Health (NIH) announced that it had people with disabilities as a population with health disparities for research supported by the NIH. United Spinal Association, as a member of the Disability Rehabilitation Research Coalition along with numerous other organizations, has long sought the designation. United Spinal, along with numerous other disability organizations, as members of the Disability Rehabilitation Research Consortium (DRRC), signed a letter to the National Institute on Minority Health and Health Disparities (NIMHD) and the Agency for Healthcare Research and Quality (AHRQ) expressing the need to the agencies to move forward with the Advisory Committee to the Director (ACD) Working Group on Diversity, Subgroup on Individuals with Disabilities recommendation to recognize people with disabilities as a health disparities population. United Spinal, along with 1,290 healthcare providers, researchers, caregivers, organizations, and people with disabilities signed on to a letter urging the US Department of Health and Human Services (DHHS) to reconsider the recent National Institute of Minority Health and Health Disparities (NIMHD) working group recommendation to reject designating people with disabilities as a health disparities population. On 9.19.23 United Spinal Association submitted the following question for the 9.21.23 @ 2:00pm White House Office of Public Engagement Aging and Disability Communities Call: Will the President assist to reconsider NIMHD working group recommendation to reject designating people with disabilities as a health disparities population? United SpinalAssociation, along with numerous other disability organizations, as members of the Disability Rehabilitation Research Consortium (DRRC), met with National Institutes of Health (NIH) leaders, Dr. Alison Cernich, Deputy Director, National Institute of Child Health and Human Development and Dr. Theresa Hayes Cruz, Director, NICHD National Center for Medical Rehabilitation Research (NCMRR). Discussion topics included: Current Status of Disability and Rehabilitation Research at NIH Status of ACD Recommendations and DEIA at NIH Engagement with Other Federal Agencies FY 2024 Appropriations and Funding of NIH Policy staff also asked about any response that had been received from researchers to: Home and Community-Based Physical Activity Interventions to Improve the Health of Wheelchair Users (R01 Clinical Trial Required): https://grants.nih.gov/grants/guide/rfa-files/RFA-HD-22-017.html Dr. Cruz responded, We received a strong number of applications to this RFA and were able to fund two R01s. United Spinal Association supports H.R. 5308 - Rural Telehealth and Education Enhancement Act of 2023, reauthorizing the Distance Learning and Telemedicine Program administered by the Department of Agriculture (USDA) which allocates grants to assist rural communities in acquiring the essential technology and training needed to establish connections between educational and medical experts, students, teachers, and patients residing in rural areas. United Spinal Association met with NIDILRR, along with other staleholders, as part of the ITEM Coalition, to dsicuss improved access to bowel and bladder management supplies under Medicare. United Spinal Association endorsed MS Coalition comments to ICER reagrding evaluation of patient-reported outcomes in regards to MS therapies. United Spinal Association supported, as part of the Coalition to Preserve Rehabilition, Rep. Pascrells NDAA amendments that would require the U.S. Department of Defense to conduct two separate studies on (1) eliminating outpatient rehabilitation limits for active duty servicemembers suffering from TBI; and (2) recognizing non-governmental bodies for accrediting brain injury treatment programs for servicemembers. These studies will provide critical information to the Department of Defense and Congress about the possible expansion of rehabilitation treatment to our service members that have suffered a brain injury while serving this great country.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| TIMOTHY KENT KEYSER | — |
| STEPHEN MICHAEL LIEBERMAN | — |
| REBECCA MACTAGGART New | — |
Aviation/Airlines/Airports AVI
United Spinal supports the Air Carrier Access Amendments Act S. 545/H.R. 1267, the Prioritizing Accountability and Accessibility for Aviation Consumers Act H.R. 1445/S. 400, H.R. 3762 / S.1765 - the Emergency Vacating of Aircraft Cabin Act, the Airline Safety Information and Entertainment Access Act, S. 1119, the MOBILE Act introduced by U.S. Rep. Steve Cohen (D-TN-09) H.R. 3802/S. 1459; H.R.3743, a bill To amend the FAA Reauthorization Act of 2018 to extend the advisory committee on the air travel needs of passengers with disabilities. United Spinal supports H.R.1772, the wheelchairs on Airplanes Act introduced by U.S. Representative Dina Titus (D-NV-01). The would help prevent discrimination against airline passengers with disabilities who use lithium-ion-powered wheelchairs and mobility aids that are safe for air travel. United Spinal supports the disability-related provisions contained in the FAA Reauthorization Act of 2023, S. 1939. Prioritizing Accountability and Accessibility for Aviation Consumers Act of 2023:requires the U.S. Department of Transportation (DOT) publish an annual report on how quickly, effectively and efficiently consumer complaints related to traveling with a disability are received, addressed and resolved by DOT. Mobility Aids On Board Improve Lives and Empower All (MOBILE) Act: requires DOT issue an advisory circular that provides guidance to airlines on publishing information related to powered wheelchairs, including the dimensions of aircraft cargo holds, and evaluate the frequency and types of mishandling of mobility aids and take actions towards making in-flight wheelchair seating available. Access and Dignity for All People who Travel (ADAPT) Act: requires DOT issue regulations regarding seating accommodations for passengers with disabilities that takes into account being seated next to their companion and requires the Secretary of Transportation establish an optional Known Service Animal Travel Pilot Program, providing service animal users the opportunity to participate in a streamlined pre-registration process. Equal Accessibility to Passenger Portals (Equal APP) Act: requires DOT issue regulations to ensure that customer-facing websites, applications and information communication technologies (ICT) of airlines and airports are accessible. It would require the Secretary to conduct regular audits of such websites, applications and ICTs and allow the Secretary to hold non-compliant entities accountable by issuing civil penalties. Store On-board Wheelchairs in Cabin (STOWIC) Act: requires airlines provide information on the airline website-and anywhere people can make reservations- regarding the rights and responsibilities of both airlines and passengers as to the availability of on-board wheelchairs. It would also require annual staff training regarding assisting people with disabilities on the use of on-board wheelchairs and the right to request an on-board wheelchair. It would allow the Secretary to issue enhanced civil penalties if airlines fail to provide an on-board wheelchair. Airport Accessibility Grants: authorizes a pilot grant program to help airports make their facilities more accessible. The program would be funded at $20 million per year from Airport Improvement Program (AIP) funds. Provisions of the Air Carrier Access Amendments Act. United Spinal supports the disability-related provisions contained in the FAA Reauthorization Act of 2023, H. R. 3935/S. 1939, the Securing Growth and Robust Leadership in American Aviation Act including provisions of the Air Carrier Access Amendments Act. United Spinal Association supports H.R. 1499/ S. 753, the Good Jobs for Good Airports Act. SEIU members from across the nation joined United Spinal Association, the National Association for the Advancement of Colored People and National Disability Rights Network in thanking U.S. Senator Edward Markey (D-MA) for his leadership on the Good Jobs for Good Airports bill. Met with Sen.Ted Budd to express support fo GJGA. United Spinal submitted comments in response to the U.S. Department of Transportations (DOT) Request for Information (RFI) about the critical role Advanced Air Mobility (AAM), Docket:(DOT-OST-2023-0079), should play in the lives of people with disabilities, especially wheelchair users. United Spinal, along with numerous other disability organizations, met periodically with U. S. Department of Transportation, Office of Aviation Consumer Protection, to discuss disability rights advocacy. United Spinal, along with numerous other disability organizations and aviation industry representatives, participated in a U.S. Department of Transportation public awareness campaign to increase awareness of the different types and levels of accommodations that airlines can provide to passengers with disabilities. United Spinal staff consulted with House Congressional staff per their request on potential legislative language regarding accessible adult changing stations in airports. On September 28th, as part of a coalition of nonprofit organizations advocating for safe and accessible air travel, Paralyzed Veterans of America, Hand In Hand, the Christopher & Dana Reeve Foundation, and United Spinal Association issued a joint statement in response to a settlement agreement reached by the U.S. Department of Transportation and United Airlines following a complaint from the late disability rights advocate Engracia Figueroa.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| TIMOTHY KENT KEYSER | — |
| STEPHEN MICHAEL LIEBERMAN | — |
| REBECCA MACTAGGART New | — |
Telecommunications TEC
United Spinal Association, along with numerous other disability organizations, as members of the Consortium for Constituents with Disabilities (CCD) Technology & Telecommunications Task Force signed on to a letter to the leadership of the Congressional Bipartisan Disabilities Caucus to express our strong support for the Federal Communications Commissions (FCC) Affordable Connectivity Program (ACP) and to urge Congress to allocate additional funding to this crucial initiative. United Spinal Association supports H.R. 4858 / S. 2494, the Communications, Video, and Technology Accessibility (CVTA) Act, reintroduced by Senator Edward J. Markey (D-Mass.), and Representative Anna G. Eshoo (CA-16). This legislation would update and strengthen existing accessibility regulations secured through Senator Markeys CVAA to stay up-to-date with the proliferation of new technologies-from video conferencing platforms to artificial intelligence-which have become prevalent since the CVAA became law in 2010. United Spinal Association, along with numerous other disability organizations, as members of the Consortium for Constituents with Disabilities (CCD) Technologies and Telecommunications Task Force, engaged with the Director of the Government-wide IT Accessibility Program, U.S. General Services Administration and his fellow colleagues, from the Federal CIO Council's Accessibility Community of Practice, who presented on their ongoing work to support Section 508 across the federal government. United Spinal Association consulted with Senate congressional staff on potential legislative language regarding federal departments and agencies compliance with section 508 of the Rehabilitation Act of 1973. United Spinal Association, as a member of the Consortium for Constituents with Disabilities (CCD) Technologies and Telecommunications Task Force, shared a Federal Communications Commission (FCC) 8.17.23 outreach email with fellow Task Force members that while 20 million households have signed up to participate in the Affordable Connectivity Program, one organization estimates that at least 48 million households are eligible.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| TIMOTHY KENT KEYSER | — |
| REBECCA MACTAGGART | — |
Transportation TRA
United Spinal Association: participated in a quarterly call with Amtrak along with other representatives from disability organizations. participated in a roundtable discussion with Amtraks Board of Directors. participated in a meeting with Amtrak to review their plans for their replacement long-distance trainsets. United Spinal Association submitted comments in response to the U. S. Department of Transportation, National Highway Traffic Safety Administration New Car Assessment Program - Crashworthiness Pedestrian Protection, Docket No. NHTSA-2023-0020. United Spinal submitted comments on the U. S. Department of Transportations Request for Information on Potential Research and Development Areas of Interest for the Advanced Research Projects Agency-Infrastructure (ARPA-I) (Docket No. DOT-OST-2023-0092). United Spinal Association commented on DOT NHTSA notice of proposed rulemaking (NPRM) to adopt a new Federal Motor Vehicle Safety Standard to require automatic emergency braking (AEB), including pedestrian AEB (PAEB), systems on light vehicles, [Docket No. NHTSA-2023-0021]. United Spinal Association, along with numerous other disability organizations, as members of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force and fellow advocates, signed on to comments to the bipartisan congressional leadership of the House Energy and Commerce Committee for the record of a hearing held on July 26th, Self-Driving Vehicle Legislation on Framework: Enhancing Safety, Improving Lives and Mobility, and Beating China. United Spinal Association, as a member of the Transportation Task Force of the Consortium for Citizens with Disabilities (CCD), supported comments submitted by the task Forces co-chairs on Bus Compartment Redesign and Bus of the Future Initiatives, Docket No. FTA-2023-0013.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| TIMOTHY KENT KEYSER | — |
| STEPHEN MICHAEL LIEBERMAN | — |
Civil Rights/Civil Liberties CIV
United Spinal Association led a delegation of disability organizations in a follow-up meeting with Assistant Attorney General Kristen Clarke and Civil Rights Division section leaders to discuss many critical issues facing the disability community. United Spinal Association met with the White House to discuss accessible transportation. United Spinal Association submitted comments to the U.S. Access Board in support of 17 inch low transfer surface height of accessible medical diagnostic equipment.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| STEPHEN MICHAEL LIEBERMAN | — |
District of Columbia DOC
United Spinal participated in a quarterly meeting of the Disability Community Advisory Group with DC Homeland Security Emergency Management Agency.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| STEPHEN MICHAEL LIEBERMAN | — |
Veterans VET
United Spinal Association/VetsFirst supports the Veterans Accessibility Act - S.2516.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
Insurance INS
On 9.12.23, United Spinal Association, along with 369 other disability organizations, signed on to a letter to bipartisan, bicameral members of Congress endorsing the SSI Savings Penalty Elimination Act, H.R 5408/S. 2767 which - for the first time in over 30 years - would raise the amount of assets Supplemental Security Income (SSI) recipients can save without jeopardizing their vital SSI benefits. United Spinal Association, as a member of the Social Security Task Force (SSTF) of the Consortium for Citizens with Disabilities (CCD), supported comments submitted by the SSTF co-chairs to Social Security Administration, Kilolo Kijakazi, in response to SSAs proposal related to setting the manner and appearance of parties at witnesses at hearings. The comments read in part: We greatly appreciate that the Social Security Administration (SSA) is taking steps to improve hearing efficacy and to increase flexibility for claimants. We hope that any changes implemented will improve claimants access to adjudicative processes and ultimately, benefits. We are concerned, however, that some of these changes will have the opposite effect and instead may present obstacles to claimants
| Lobbyist | Covered position, as disclosed |
|---|---|
| TIMOTHY KENT KEYSER | — |
Medicare/Medicaid MMM
On September 14th, United Spinal Association participated in a Complex Rehabilitation Technology (CRT) Product Expo on Capitol Hill for members of Congress and their staffs hosted by the National Coalition for Assistive and Rehab Technology (NCART) and the National Registry of Rehabilitation Technology Suppliers (NRRTS). Policy staff invited members of Congress and their staffs and explained how CRT makes our lives healthier and productive. Additionally, attendees could interact with CRT products, other CRT users, clinicians, providers, manufacturers, and other advocates provided demonstrations and answered questions. United Spinal Association commends the Centers for Medicare and Medicaid Services (CMS) for their announcement in May 2023 in support of Medicare coverage of seat elevation for power wheelchairs, and we are urging CMS to expand on this progress and hold to its commitment of swiftly opening a comment period for standing systems in power wheelchairs and to conduct a full review of its mobility device coverage, coverage, coding and payment policies. Additionally, due to the increasingly restrictive interpretation of Medicare's "in the home" language and the adoption of Medicare coverage policy by commercial insurers, wheelchair users face constant insurance denials and delays in obtaining appropriate equipment resulting in health injuries and secondary health conditions such as pressure injuries (pressure sores) and rotator cuff and carpal tunnel injuries, due to overuse of their upper extremities. United Spinal advocated for members of Congress to support a legislative or regulatory fix by asking that they join a House Dear Colleague Letter sent to CMS July 13, led by Rep. Debbie Dingell (D-MI) and Rep. Brian Fitzpatrick (R-PA) that requested: 1) CMS hold to its commitment of opening the comment period for Medicare coverage of standing systems; 2) lifting the "in the home" restriction on coverage of mobility devices that meet the medical and functional needs of all people with mobility disabilities; adding "and/or in the community" to the MAE language in the NCD; and 3) conducting a full review of current mobility device coverage, coding and payment policies. On September 26th, United Spinal policy staff participated in an ITEM Coalition meeting with the Centers for Medicare & Medicaid Services (CMS) to discuss the national coverage determination (NCD) request for standing systems in power wheelchairs. United Spinal Association advocated for and supported a letter Senators Maggie Hassan (D-NH), Marsha Blackburn (R-TN), Bob Casey (D-PA), and Tammy Duckworth (D-IL) sent the Centers for Medicare and Medicaid Services (CMS) request a full review of its 2005 National Coverage Determination for Mobility Assistive Equipment (MAE) for Medicare beneficiaries, including its interpretation of the in the home requirement. Current Medicare coverage limitations on equipment used outside the home can limit patients access to mobility equipment and to their communities. United Spinal submitted comments to the Centers for Medicare & Medicaid Services (CMS) on the proposed rule addressing the CY 2024 update to the Home Health Prospective Payment System, [CMS-1780-P]. The comments focused solely on the proposed language under Definition of a Brace. United Spinal Association supports NCART and NRRTS legislative asks: Ask 1: CMS must move forward with establishing Medicare coverage for Power Standing Systems We are incredibly thankful to CMS for following the medical evidence and initiating coverage for Seat Elevation this past year. However, CMS has not yet moved forward on establishing coverage for Power Standing Systems used with CRT Power Wheelchairs. This request was submitted jointly with the request for power seat elevation in September 2020, but CMS separated the two technologies and opted to consider coverage individually. Clinical evidence shows that Power Standing Systems provide significant medical benefits and allow people with disabilities to maintain independence in their homes and communities. This delay is resulting in a denial of access for individuals with mobility impairments and we are asking Congress to contact CMS Administrator Brooks-LaSure to urge needed action. Ask 2: CMS must allow consumers equal opportunity to upgrade their own equipment For some Medicare enrollees, enhanced options like titanium or carbon fiber are available for the CRT equipment recommended by their clinical team. However, these upgrades are currently only available through a complicated process that does not allow Medicare beneficiaries to simply cover the difference in cost. This limits patient choice and forces individuals to either utilize equipment that may not be optimized for their medical needs or pay entirely out of pocket for equipment with the desired upgrades. HR 5371 introduced by Rep. John Joyce (R-PA) allows for code upgrades for titanium and carbon fiber wheelchairs under Medicare. We believe that individuals should have the right to utilize their insurance benefits while still being able to optimize their equipment if they choose to do so. This would not result in any additional cost to the Medicare program. We ask each Representative to contact Matt Joyce in Representative Joyces office to Cosponsor HR 5371 and allow this important change for individuals with disabilities. Ask 3: Congressional Support must be provided to maintain access to CRT equipment. Currently, providers are only reimbursed for a portion of the multi-layer process of supplying CRT equipment, which includes clinical evaluation, technology assessment, equipment simulation, assembly/configuration, delivery, fitting, programming, and training. Ongoing inflation and increased operating expenses further threaten access to needed equipment, repairs, and other services for individuals with disabilities. Relief is needed and we are asking Congress to discuss CRT stakeholder recommendations and pursue actions that support a strong provider network and secure access for individuals who rely on this life-changing equipment. Submitted comments to CMS re RFI on Home Health Aide Services. United Spinal Association met with CMS, with other stakeholders, to discuss the expansion of HCPCS coding for catheters. United Spinal Association, as a member of the ITEM Coalition, submitted comenmts on Transtioanl Coverage for Emerging Technologies (TCET). United Spnal Association, as part of the Coalition to Preserve Rehabilitation, submitted comments on the IRF Review Choice Demonstration. United Spinal Asociaton met with CMS to discuss the need for coverage of standing systems in wheelchairs and thanked CMS for the coverage of seat elevation under Medicare. United Spinal Asociaton met with ACL to discuss the need for coverage of standing systems in wheelchairs and thanked ACL's support for the coverage of seat elevation under Medicare.
| Lobbyist | Covered position, as disclosed |
|---|---|
| ALEXANDRA BENNEWITH | — |
| TIMOTHY KENT KEYSER | — |
| REBECCA MACTAGGART | — |
Medical/Disease Research/Clinical Labs MED
United Spinal Association supports Pioneering Antimicrobial Subscriptions to End Upsurging Resistance Act of 2023 (The PASTEUR Act of 2023; S. 1355/H.R. 2940). Joined almost thirty other organizations in Washington, D.C. to advocate for the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance Act of 2023 (The PASTEUR Act of 2023; S. 1355/H.R. 2940). The PASTEUR Act of 2023 is sponsored by Senator Bennet (D-CO) and Representative Ferguson (R-GA). Met with the offices of Rep. Juan Ciscomani (R-AZ-06), Rep. Burgess Owens (R-UT-04), Rep. Chrissy Houlahan (D-PA-06), Rep. Glenn Grothman WI-06 and Rep. GT Thompson (R-PA-15) Wrote letters of support and appreciation to Sen. Bennet and Rep. Ferguson. PASTEUR Act creates solutions to encourage innovative drug development targeting the most threatening infections, improve the appropriate use of antibiotics, and ensure domestic availability of antibiotics when needed.
| Lobbyist | Covered position, as disclosed |
|---|---|
| REBECCA MACTAGGART | — |
Labor Issues/Antitrust/Workplace LBR
United Spinal Association met with staff for Senate Majority Leader Chuck Schumer to ask that the nomination of Karla Gilbride to serve as General Counsel of the Equal Employment Opportunity Commission be brought to the Senate floor for a vote as soon as possible.
| Lobbyist | Covered position, as disclosed |
|---|---|
| STEPHEN MICHAEL LIEBERMAN | — |
Natural Resources NAT
Met with Jeremy Buzzell from the National Park Service to discuss a presentation to United Spinal's Outdoor Access Working Group.
| Lobbyist | Covered position, as disclosed |
|---|---|
| STEPHEN MICHAEL LIEBERMAN | — |
Shown as published by the Senate Office of Public Records and the House Clerk under the Lobbying Disclosure Act. The official filing is the record; open it for the full form.