ALEXANDRA BENNEWITH

United Spinal policy staff provided feedback to a member of Congress on potential legislation that would improve the timeliness of repairs made to individually customized, medically prescribed wheelchairs. United Spinal endorsed the reintroduction of the CONNECT for Health Act in the 119th Congress. The CONNECT for Health Act will expand coverage of telehealth services through Medicare, make COVID-19 telehealth flexibilities permanent, improve health outcomes, and make it easier for patients to connect with their doctors. Current flexibilities are set to expire on September 30 unless Congress extends them. Engage with House and Senate and CMS to ensure a benefciary coding decision for transanal irrigation devices to be categorized as prosthetic devices. Met with CMS to discuss access to ostomy supplies. As a member of the Coalition to Preserve Rehabilitation Steering Committee - Support coverage of anti-obesity medications for people with disabilities. - Provided comments to the 2026 Medicare Advantage and Part D proposed rule. - Submitted New Policy Statement on Public Comment for Agency Rulemaking.

United Spinal advocated against Medicaid cuts. United Spinal asked members of Congress to sign onto letters of support with their colleagues, as part of United Spinal's virtual advocacy day urging bipartisan congressional leadership on the respective appropriations subcommittee to support increased federal funding for Spinal Cord Injury Model Systems as well as at the Burn Model Systems and the Traumatic Brain Injury Model Systems. Increased funding at all three Model Systems, including the Model Systems Knowledge Translation Center is needed to translate data, research, and clinical knowledge into resources to benefit the SCI, TBI and burn injury communities. Advocate to save DOD CDMRP Spinal Cord Injury Research Program (SCIRP). The Federal Budget Resolution that was passed on 3.14.25 cut 57% - approximately $850 million - out of the Congressionally Directed Medical Research Program (CDMRP). This is a Department of Defense program that funds biomedical research programs, including spinal cord injury. United Spinal, as a member of the Disability & Rehabilitation Research Coalition (DRRC), supported a letter the DRRC co-coordinators submitted to the Acting Director of the Office of Management and Budget about the deep concerns the members of the Coalition had with the OMB Memorandum Pausing Federal Financial Assistance (M-25-13). United Spinal, as a member of the Disability & Rehabilitation Research Coalition (DRRC), signed onto a letter to the Office of Management and Budget, U. S. Department of Health and Human Services and the National Institutes of Health about major concerns with cuts to NIH funding through indirect cost cap. The letter read in part, The Disability & Rehabilitation Research Coalition (DRRC) appreciates and supports maximizing the federal return on investment in medical research but has serious concerns about the recently published Supplemental Guidance from the National Institutes of Health (NIH) capping indirect costs for grantees at 15 percent. This unprecedented policy change will have significant and permanent negative consequences on biomedical research, particularly the science of medical rehabilitation, disability, and chronic illness. We strongly urge you to reconsider this announcement and work with our coalition and other research organizations to chart an alternative path forward. United Spinal joined the American Association of People with Disabilities, along with numerous disability, civil rights, aging, and mental health organizations, in submitting a letter expressing deep concerns about the plan to re-organize the Department of Health and Human Services. especially the plan to eliminate the Administration for CommunityLiving (ACL) and split its functions across three other agencies, as well as the consolidation of the Office for Civil Rights (OCR) and Substance Abuse and Mental Health Services Agency (SAMHSA). United Spinal, as a member of the Disability & Rehabilitation Research Coalition (DRRC), signed onto a letter to urge and meet with HHS Secretary Kennedy to reconsider plans to dismantle the Administration for Community Living (ACL), including the National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR), in order to meet with national disability, rehabilitation, and other stakeholder organizations to discuss the future of ACL, and seriously reconsider the reorganization of this essential government agency for older Americans and individuals with disabilities. As a member of the Disability & Rehabilitation Research Coalition (DRRC), United Spinal endorsed comments submitted to the Office of Management and Budget (OMB) about OMB Memorandum Pausing Federal Financial Assistance (M-25-13). United Spinal, as a member of the Disability & Rehabilitation Research Coalition (DRRC), wrote to commend the National Institutes of Health (NIH) and the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI) for their work to improve disability research across NIH on behalf of the one in four Americans with disabilities. Supporting disability research and investing in training the next generation of disability researchers must be a central goal at NIH given the critical need for biomedical, functional, and outcomes research. United Spinal, as members of the Disability and Aging Collaborative (DAC), the Health and Long-Term Services and Supports Task Forces of the Consortium for Constituents with Disabilities (CCD), and allied organizations wrote to the bipartisan leadership of the House Energy and Commerce Committee to urge excluding Medicaid cuts, work requirements, or any changes that limit funding or eligibility, from budget reconciliation or other legislation. The letter read in part, People with disabilities, older adults, family caregivers and their children, direct care workers, and other low-income individuals and families depend on Medicaid every day for their health, safety, and independence. Medicaid enables them to go to work and to care for their loved ones. It is our communities' lifeline, and we cannot afford for any part of it to be cut. United Spinal advocacy and policy staff met with staff for Sen. Tammy Duckworth (D-IL) to discuss legislation to address wheelchair repair issues, as well as an appropriations letter for the National Institute on Disability, Independent Living, and Rehabilitation Research. United Spinal advocacy and policy staff met with House and Senate to discuss signing an appropriations letter in support of the National Institute on Disability, Independent Living, and Rehabilitation Research. United Spinal advocacy and policy staff signed a CCD co-chairs statement expressing dismay and concern about the reorganization of the Department of Health and Human Services. United Spinal supports H.R. 2320, the Mobility Means Freedom Tax Credit Act.

United Spinal submitted supportive comments to the Federal Communications Commission in response to CG Docket Nos. 10-213, 03-123, and 23-16, the Further Notice of Proposed Rulemaking, on the need for additional accessibility features in video conferencing services, including: text-to-speech, and speech-to-speech functionality; automatic sign language interpretation; audio description and other functionality for participants who are blind or have low vision; and functionality needed by people with cognitive or mobility disabilities.

United Spinal provided feedback to the National Council on Disability on autonomous vehicle accessibility for a forthcoming report on transportation. United Spinal advocacy and policy staff participated in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal advocacy and policy staff met with staff for Rep. Steve Cohen (D-TN) to discuss federal legislation to address accessible parking issues.

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.

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 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.

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.

Urge CMS to lift 'in the home' restriction under Medicare and Social Security Act language for wheelchairs. Support Medicare coverage for standing systems wheelchairs. 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. Centers for Medicare and Medicaid Services United Spinal, along with numerous other disability and disability related organizations, as members of the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition and other supporting organizations that endorsed our original request in 2020 for the Centers for Medicare and Medicaid Services (CMS) to conduct a National Coverage Analysis (NCA) for Medicare coverage of seat elevation and standing systems in power wheelchairs, we write to reaffirm our request for CMS to expeditiously open an NCA for standing systems in Group 3 power wheelchairs, which are classified by Medicare as complex rehabilitative technology (CRT) wheelchair.

United Spinal supports Increased funding for SCI Model Systems. This program is long overdue for a significant funding increase that considers inflation and the approximate 50% growth in the SCI population since 2000 (from approximately 200,000 to more than 300,000) - $16.8 million. Increased funding for the National Spinal Cord Injury Statistical Center (NSCISC), which serves as the premier source of spinal cord injury-related statistical data in the United States - $1.8 million. Increased funding for the Model Systems Knowledge Translation Center (MSKTC), the MSKTC works with the NSCISC and the SCI Model Systems on research and translating the data into useful fact sheets on various topics related to spinal cord injury that are used not only in the United States but globally - $2.1 million. United Spinal staff met with staff with the Senate Aging Committee to provide information for an appropriations support letter for the National Institute on Disability, Independent Living, and Rehabilitation Research. United Spinal endorsed comments on the Medicare Advantage proposed rule as a Steering Committee member of the Coalition to Preserve Rehabilitation and United Spinal endorsed comments on the Notice of Benefit and Payment Parameters proposed rule as a Steering Committee member of the Independence Through Enhancement of Medicare and Medicaid Coalition.

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 supported the accessibility provisions in H.R. 6373, the Veterans STAND Act of 2023, introduced by Representative Jack Bergman (R-MI-1). House Senate United Spinal, as a member of the, Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition, signed onto a letter of support to the sponsors of H.R. 6373, the Veterans Spinal Trauma Access to New Devices (STAND) Act of 2023.

Urge CMS to lift 'in the home' restriction under Medicare and Social Security Act language for wheelchairs. Support Medicare coverage for standing systems wheelchairs. 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. Centers for Medicare and Medicaid Services United Spinal, along with numerous other disability and disability related organizations, as members of the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition and other supporting organizations that endorsed our original request in 2020 for the Centers for Medicare and Medicaid Services (CMS) to conduct a National Coverage Analysis (NCA) for Medicare coverage of seat elevation and standing systems in power wheelchairs, we write to reaffirm our request for CMS to expeditiously open an NCA for standing systems in Group 3 power wheelchairs, which are classified by Medicare as complex rehabilitative technology (CRT) wheelchair.

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 supports the accessibility provisions in, H.R. 7351 / S. 3747, Removing Access Barriers to Running for Elected Office for People with Disabilities Act, introduced by Representative Madeleine Dean (D-PA-4) and Senator Robert P. Casey, Jr. (D-PA). United Spinal supported the accessibility provisions in H.R. 7389 / S. 3748, Accessible Voting Act of 2024, introduced respectively by Representative Mary Gay Scanlon (D-PA-5) and Senator Robert P. Casey, Jr. (D-PA). United Spinal supports the accessibility provisions in H.R. 7350 / S. 3749, The Accessibility and Inclusion to Diversity Local Government Leadership Act (the AID Local Government Act) introduced by Representative Madeleine Dean (D-PA-4) and Senator Robert P. Casey, Jr. (D-PA). United Spinal participated in White House Office of Public Engagement Aging and Disability Communities Calls on 2.29.24, 3/7/2024, 3/21/24. United Spinal, as a member of the Consortium for Constituents with Disabilities (CCD), signed on to comments the CCD submitted in response to the Department of Justices request, Nondiscrimination on the Basis of Disability: Accessibility of Medical Diagnostic Equipment of State and Local Government Entities (DOJ-CRT-2024-0001). United Spinal also submitted our own comments on the above opportunity, DOJ-CRT-2024-0001-0001. The comments read in part, United Spinal Association supports DOJs efforts to apply specific requirements to accessible medical equipment. Inaccessible MDE effectively excludes certain people with disabilities from accessing routine examinations and specialized medical care. United Spinal participated in the National Council on Disabilitys virtual discussion about ground transportation for wheelchair users, sharing our lived experiences with the barriers commonly encountered. United Spinal staff led a delegation of disability organizations in a meeting with Assistant Attorney General Kristen Clarke and Civil Rights Division section leaders to discuss many critical issues facing the disability community.

Support the Transportation Assistance for Individuals with Disabilities Act - H.R. 5859 United Spinal participated in a quarterly call with AMTRAK along with other representatives from disability organizations. United Spinal Association staff participated in a meeting with AMTRAK to review their plans for their replacement long-distance trainsets. 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 policy staff, as members of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force, met with representatives from the National Highway Traffic Safety Administration to discuss issues related to wheelchair securement in ground transportation. United Spinal Association staff, as members of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force, met with representatives from the National Highway Traffic Safety Administration to discuss issues related to wheelchair securement in ground transportation. Met with the U.S. Access Board to discuss wheelchair securement in ground transportation. Supports Disaster Relief Medicaid Act - S. 3120/H.R. 6029.

United Spinal Association supports accessibility provisions for people with disabilities in the following bills to reauthorize the Federal Aviation Administrations programs: H.R. 3935, Securing Growth and Robust Leadership in American Aviation Act - S. 1939, FAA Reauthorization Act of 2023, United Spinal Association support full inclusion of all of the provisions contained in 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 a letter sent by Democratic Committee Members of the U.S. House Committee on Transportation and Infrastructure sent to Airlines for America (A4A) President and CEO Nicholas Calio expressing concern and dismay regarding the continued trend of mishandled wheelchairs and scooters, most recently on display in a video showing airline employees mistreatment of a passengers wheelchair at the Miami International Airport (MIA). 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) on-going efforts to launch a new database, Aviation Complaint, Enforcement, and Reporting System (ACERS).

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

Supports "Supporting Our Direct Care Workforce and Family Caregivers Act (S. 1298). Supports "Better Care Better Jobs Act" (H.R. 547/S. 100). Supports "Home and Community Based Services (HCBS) Access Act" (H.R. 1493/ S. 762). United Spinal Association provided comments on the proposed update to the National Institutes of Health (NIH) mission statement. United Spinal, along with numerous other disability organizations, as members of the Disability & Rehabilitation Research Coalition (DRRC) endorsed comments on the proposed update to the National Institutes of Health (NIH) mission statement. On November 20th, United Spinal policy staff, along with numerous other members of the Disability Rehabilitation Research Coalition (DRRC), met with representatives for the National Institutes of Health, National Institute for Neurological Disorders and Stroke to discuss medical rehabilitation programs and needs. United Spinal, along with numerous other disability organizations, as members of the Disability & Rehabilitation Research Coalition (DRRC) provided comments supporting a Limb Loss Preservation Registry (LLPR). United Spinal provided a letter of support for a proposed project from the University of Michigan Transportation Research Institute (UMTRI) for the National Institute on Disability, Independent Living and Rehabilitation Researchs (NIDILRR) request for proposals on field-Initialed Projects, Dynamic Comfort of Vehicle Occupants in Wheelchairs. United Spinal provided a letter of support for a proposed project from the University of Michigan Transportation Research Institute (UMTRI) for the National Institute on Disability, Independent Living and Rehabilitation Researchs (NIDILRR) request for proposals on field-Initialed Projects, Developing Education Modules to Promote Use of Crash Tested Wheelchairs".

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.

Home and Community-Based Services (HCBS) Relief Act of 2023, S. 3118. Wrote a comment letter to CMS requesting their continued work with the disability community on issues involving the role that home health aide services play in ensuring the health, well-being, and independence of beneficiaries across the nation and provided Request for Information comments and for the following: Medicare Program; Calendar Year (CY) 2024 Home Health (HH) Prospective Payment System Rate Update; HH Quality Reporting Program Requirements; HH Value-Based Purchasing Expanded Model Requirements; Home Intravenous Immune Globulin Items and Services; Hospice Informal Dispute Resolution and Special Focus Program Requirements, Certain Requirements for Durable Medical Equipment Prosthetics and Orthotics Supplies; and Provider and Supplier Enrollment Requirements. [CMS-1780-P] Wrote a comment letter to CMS in response to the proposed rulemaking: Ensuring Access to Medicaid Services NPRM (CMS 2442-P) especially as it relates to Home and Community Based Services (HCBS). United Spinal expressed their support of the proposed rulemaking and its impacts on our members. On November 2nd, United Spinal, along with numerous other organizations, as members of the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition met with representatives of the Centers for Medicare and Medicaid Services (CMS) to discuss the status of a proposed issuance of a National Coverage Determination (NCD) for power wheelchair standing systems. Supported the Ensuring Patient Access to Critical Breakthrough Product Act of 2023 as a member of the ITEM Coalition Steering Committee. Enodrsed/drafted joint ITEM/CPR Coalition Letter on Section 504 Proposed Rule. Endorsed letter to CDC and GAO and U.S. Senate on access to catheters and catheter acquired urinary tract infections. United Spinal supports Telehealth Expansion Act - S. 1001/H.R. 1848

United Spinal Association/VetsFirst supports the Veterans Accessibility Act - S.2516.

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.

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.

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.

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.

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

United Spinal Association/VetsFirst supports the Veterans Accessibility Act - S.2516.

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.

United Spinal participated in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal asked for support of Disability Access to Transportation Act (H.R. 3845/S. 1813). United Spinal, along with numerous other disability organizations, signed onto a letter led by the American Council of the Blind to U.S. Representative Cathy McMorris Rodgers, Chair of the House Energy and Commerce Committee to support the continued development and deployment of autonomous vehicles in the United States, which could significantly enhance the lives of millions of disabled Americans and their loved ones, and ask that Congress take swift action to ensure ongoing development of this industry can occur in this country. United Spinal Submitted comments on the U. S. Department of Transportations (DOT) Request for Information on Department of Transportation Equity Action Plan Update (Docket No. DOT-OST-2023-0087). United Spinal, as a member of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force, supported comments from the Task Forces co-chairs submitted to the U.S. Department of Transportation providing feedback on the 2023 update to the Equity Action Plan. The letter read in part,It is important to ensure that equity measures advance access to and availability of transportation options for people with disabilities. The comments may be reviewed at:

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

United Spinal urges the Congress to ask CMS to lift the in-the-home rule restricting Medicare wheelchair coverage and provide Medicare coverage of standing systems in power wheelchairs - House Dear Colleaugue letter led by Rep. Debbie Dingell and Rep. Brian Fitzpatrick. Asking Senators to support the same concept. We thanked CMS for providing coverage for seat elevation tied to power wheelchairs. For decades, Spinal Cord Injury Model Systems funding has not kept pace with inflation even though the SCI population has doubled. The critical research and innovative services SCIMS provide encompass the entire spectrum of rehabilitation, from emergency services when an SCI is initially sustained through an individuals return to full participation in employment and their community. As a member of the Disability and Rehabilitation Research Coalition (DRRC), United Spinal signed onto a letter the leadership of the DRRC submitted to the National Institutes of Health (NIH) and the Advisory Committee to the Director (ACD) commending the agencies formally endorsing the landmark recommendations from the ACD Working Group on Diversity, Subgroup on Individuals with Disabilities (the Subgroup). United Spinal policy staff participated in the June 28th Interagency Committee on Disability Research (ICDR) Stakeholder Meeting hosted by the Administration for Community Living. Policy staff followed up with the Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development to obtain a copy of the Deputy Directors presentation which included progress on a number of issues important to wheelchair users health and functional abilities. United Spinal provided information to Congressional staff on the issue of exoskeleton technology to assist individuals with spinal cord injuries (SCI) and the question of Medicare coverage. Private sector health insurance providers as well as select Medicare Advantage plans and public sector providers namely, the U.S. Department of Veterans Affairs, in certain cases provide coverage of exoskeletons for individuals with an SCI. Exoskeleton technogoiy is another option to help with rehabilitation but has to be selected appropriately for individuals who need it. United Spinal, as a member of the Steering Committee of the Coalition to Preserve Rehabilitation (CPR), signed on to comments submitted to the Centers for Medicare and Medicaid Services (CMS) on the Inpatient Rehabilitation Facility Prospective Payment System (IRF PPS) for Fiscal Year (FY) 2024 Proposed Rule, published in the Federal Register on April 3, 2023. The comments read in part, .the CPR Coalition continues to have serious concerns with the impact the IRF RCD will have on patient access to care.

Supporting broadband deployment, equity and inclusion for the disability community to new members of the 118th Congress in a welcome Letter. United Spinal supports a sustained federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, adoptable and affordable for all Americans. To make broadband affordable to all, we endorse a permanent financial support system for households based on the Federal Communications Commissions Affordable Connectivity Program. United Spinal responded to a request for comments from the National Telecommunications and Information Administrations (NTIAs) regarding the development of a National Spectrum Strategy, Docket No.230308-0068/(NTIA-2023-0003). The comments read in part, our communitys needs demand a more balanced spectrum allocation..."

United Spinal/VetsFirst supports the Major Richard Star Act (H.R.1282/S.344) and asked Congress to ensure it is included into the FY24 National Defense Authorization Act.

United Spinal Association supports S. Res 85 National Assistive Technology Act. United Spinal signed onto a Consortium for Constituents with Disabilities (CCD) Technology and Telecommunications Task Force funding letter asking Congress to fund the Assistive Technology Act at $49 million in light of its recent reauthorization. United Spinal supports the DEIA & TCIEA Acts (Sen. Casey).

United Spinal/VetsFirst supports the Major Richard Star Act (H.R.1282/S.344) and asked Congress to ensure it is included into the FY24 National Defense Authorization Act.

United Spinal participated in a quarterly meeting of the Disability Community Advisory Group with DC HSEMA.

United Spinal participated in calls with staff for Sen. Bob Casey (D-PA) about a sign-on letter for funding for the Model Systems programs at the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). United Spinal discussed the need for increased funding for the Model Systems programs at NIDILRR with House and Senate offices. United Spinal requested the Director of National Institute on Disability, Independent Living and Rehabilitation Research Centers to stress the critical role that adaptive FITNESS programs can play for the vast majority of members in the disability community who dont participate in any sports during her presentation in an upcoming webinar on adaptive sports. United Spinal commented on the Centers for Medicare and Medicaid Services (CMS) proposed National Coverage Decision (NCD) for seat elevation systems in Complex Rehabilitation Technology (CRT) power wheelchairs.

●United Spinal advocacy and policy staff participated in a quarterly meeting of the Disability Community Advisory Group with DC HSEMA.

United Spinal advocacy and policy staff participated in a meeting with Department of Health and Human Service General Counsel Sam Bagenstos and colleagues. Topics discussed included how to guard against judicial erosion of disability rights, Medicares in-the-home rule for wheelchairs, Medicare coverage of seat elevation and standing systems for wheelchairs, and accessible medical diagnostic equipment. United Spinal Association endorsed a Consortium for Constituents with Disabilities letter to the Office of Civil Rights at the Department of Health and Human Services in support of proposed rulemaking related to Section 1557 of the Affordable Care Act and provided comments and suggestions. United Spinal policy staff submitted comments to the National Institute on Disability, Independent Living, and Rehabilitation Researchs (NIDILRR) to help develop its Long-Range Plan for 2024-2028. As a member of the Disability Rehabilitation Research Coalition (DRRC), United Spinal also signed on to the DRCC comments made on NIDILRRs Plan. Submitted comments on Section 1557 proposed rule to HHS, Health Equity comments to the White House and to CMS. Increase funding for Spinal Cord Injury Model Systems. Met with the Director of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Dr. Anjali Forber-Pratt, to discuss research opportunities in the area of therapy caps and catastrophic exception from rehabilitation lengths of stay for spinal cord injury. Recommended catheter coding reform. Met with the Director of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Dr. Anjali Forber-Pratt, to discuss research opportunities in the area of therapy caps and catastrophic exception from rehabilitation lengths of stay for spinal cord injury.

As a member of the Consortium for Constituents on Disability (CCD) Technology & Telecommunications Task Force: United Spinal Association signed onto comments submitted by the U.S. Access Board on the accessible kiosks ANPRM. Supported the House and Senate's Communications, Video, and Technology Accessibility Act (CVTA), the Senate's Emergency Vacating of Aircraft Cabin (EVAC) Act and the Websites and Software Applications Accessibility Act.

Active Transportation Infrastructure Investment Program Funding Wrote letters to both the House and Senate appropriations committees and their subcommittee on Transportation, Housing, Urban Development, and Related Agencies thanking them for their funding and stating that we supported the House Appropriations funding amount of $100 million over the Senates $25 million. Description: CONNECTING AMERICAS ACTIVE TRANSPORTATION SYSTEM ACT (H.R> 2991/S. 684) while passed was not fully funded. This bill directs the Department of Transportation (DOT) to carry out an active transportation investment program to provide competitive grants to state, local, and regional government entities, and Indian tribes to construct projects that connect walking and bicycling infrastructure within and between communities, metropolitan regions, or states. ●United Spinal advocacy and policy staff participated in a quarterly call with Amtrak along with other representatives from disability organizations. ●United Spinal advocacy and policy staff participated in a call with Amtrak along with other representatives from disability organizations to discuss a marketing research plan regarding service between Chicago, IL and St. Louis, MO. United Spinal advocacy and policy staff participated in a meeting with staff for Sen. Menendez (D-NJ) to discuss reintroduction of the Disability Access to Transportation Act in the 118th Congress. To ensure safer, more accessible rail travel for people with disabilities and as a member of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force, United Spinal supported a letter the Task Forces Co Chairs sent to Amtraks President & CEO regarding a meeting held on July 21, 2022 at the Marriott Marquis Hotel in Washington, D.C. The letter read in part: We appreciated receiving updates on Amtraks latest activities to ensure its services and facilities are accessible. However, our organizations were disappointed that the meeting was less interactive with the Board than anticipated. Additionally, concerns remain that were not addressed. We request a new meeting with the Amtrak Board and leadership to act as a catalyst to spur further conversation.

United Spinal Association urged members of Congress and CMS for Medicare Coverage of Seat Elevation and Standing Systems in Power Wheelchairs. Lift in-the-home restriction on Medicare coverage.

HR 3304 CARS for Vets Act - This bill allows service-connected veterans to receive a VA Automobile Grant every ten years for the purchase of a new or used adapted vehicle and expands the definition of medical services to include additional vehicle modifications using the VA Automobile Adaptive Equipment program. United Spinal is urging Members of Congress to cosponsor and pass this legislation because it would help reduce the financial burden for veterans with disabilities who require adapted vehicles. S 444/HR 1361 AUTO for Veterans Act - This bill allows eligible service-connected veterans to receive a VA Automobile Grant every ten years for the purchase of a new or used adapted vehicle. United Spinal is urging Members of Congress to cosponsor and pass this legislation because it would help reduce the financial burden for veterans with disabilities who require adapted vehicles. HR 2916/S 1467 VA Medicinal Cannabis Research Act - This bill requires the Department of Veterans Affairs (VA) to conduct clinical trials of the effects of medical-grade cannabis on the health outcomes of covered veterans diagnosed with chronic pain and those diagnosed with post-traumatic stress disorder. Covered veterans are those who are enrolled in the VA health system. Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) -- United Spinal sent a targeted action alert urging members of to submit comments on proposed changes to the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA). United Spinal supports changes to CHAMPVA that would allow audio-only telehealth and increased access to mental health services. RIN 2900-AP89, Change in Rates VA Pays for Special Modes of Transportation - This proposed rule would cut the Department of Veterans Affairs (VA) reimbursement rate for emergency air medical services. Fiscal Year (FY) 2023 Military Construction, Veterans Affairs, and Related Agencies Appropriations (MilCon-VA) - This bill provides appropri8ations for military construction, the Department of Veterans Affairs (VA), and related agencies. Workforce Innovations Opportunity Act (WIOA) and the Disabled Veterans Outreach Program (DVOP) - WIOA is designed to help job seekers access employment, education, training, and support services to succeed in the labor market. DVOP provides intensive services to help veterans obtain placement in competitive employment.

United Spinal advocacy and policy staff, as a co-chair of the CCD Rights Task Force, met with Department of Justice officials regarding disability community priorities. United Spinal advocacy and policy staff met with House offices to urge support for passage of the ABLE Age Adjustment Act (H.R. 1219) as part of a larger package of retirement-focused legislation. United Spinal advocacy and policy staff, as a co-chair of the CCD Rights Task Force, co-signed a letter to Susan Rice, Director of the Domestic Policy Council, urging that the Administration take steps to achieve digital accessibility in federal agencies as required by Section 508 of the Rehabilitation Act. United Spinal advocacy and policy staff, as a co-chair of the CCD Rights Task Force, co-signed a letter to the Senate Aging Committee thanking them for holding a hearing on digital accessibility under Section 508. On July 26th, to increase accessibility and protect and promote the civil rights of people with disabilities, United Spinal attended the Bipartisan Disabilities Caucus Celebration of the 32nd Anniversary of the Americans with Disabilities Act including a discussion about accessible transportation and the next generation of caucus leadership. To increase accessibility, United Spinal, along with numerous other disability organizations signed on to a Statement for the Written Record as Members of the Consortium for Constituents with Disabilities (CCD) which was submitted to the Special Committee on Aging United States Senate for its Hearing "Accessible Federal Technology for People with Disabilities, Older Americans, and Veterans held on July 28, 2022. The hearing addressed the critical issue of ensuring that federal agencies are held accountable for achieving digital accessibility under Section 508 of the Rehabilitation Act. To increase accessibility, United Spinal, as a member of the Consortium for Constituents with Disabilities (CCD) Technology & Telecommunications and Rights Task Forces, endorsed a letter sent to the Director of the White House Domestic Policy Councils Director in support of the Administrations efforts to advance diversity, equity, inclusion, and accessibility (DEIA) in the federal workforce. Throughout July, to increase accessibility and protect and promote the civil rights of people with disabilities, United Spinal participated in the White House Office of Public Engagement, Disabled Stakeholder Calls for Disability Pride Month which addressed critical issues of the disability community. To increase accessibility and protect and promote the civil rights of people with disabilities, United Spinal attended the U.S. Department of Transportations celebration of Disability Pride Month and the 32nd Anniversary of the Americans with Disabilities Act held on July 28th.

United Spinal advocacy and policy staff discussed accessibility concerns in a quarterly meeting of the Disability Community Advisory Group with the District of Columbia Homeland Security Emergency Management Agency.

United Spinal advocacy and policy staff participated in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal advocacy and policy staff participated in a call with Amtrak along with other representatives from disability organizations to discuss updates regarding Amtraks new intercity trainsets. On July 26th, to increase accessibility and protect and promote the civil rights of people with disabilities, United Spinal attended the U.S. Department of Transportations celebration of Disability Pride Month and the 32nd Anniversary of the Americans with Disabilities Act at the Washington, D.C. headquarters. On July 13th, to increase accessibility and protect and promote the civil rights of people with disabilities, United Spinal spoke with a US Department of Transportation, Office of Aviation Consumer Protection, as part of a DOT Consumer Advisory Meeting for updates on: Rule makings, ACAA Advisory Committee, Service Animal Complaints and Mishandled wheelchairs and scooters Discussed our support for Disability Access to Transportation Act (S. 2038) To increase accessibility at electric vehicle charging stations, United Spinal submitted comments to the Federal Highway Administrations request, National Electric Vehicle Infrastructure (NEVI) Program (Docket: FHWA-2022-0008). In its comments, United Spinal also supported the comments submitted by the Paralyzed Veterans of America. And United Spinal also supported the comments submitted by Consortium for Constituents with Disabilities Transportation Task Force. To increase accessibility for transit, United Spinal supported comments by the Consortium for Constituents with Disabilities (CCD) Transportation Task Force Co-Chairs submitted in response to the US Department of Transportation (USDOT) Federal Transit Administration (FTA) request for information on transit bus automation research and demonstrations, Docket Number: FTA-2022-0012. As a member of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force United Spinal, along with numerous other disability organizations, endorsed the response the Task Force submitted to questions posed by the National Highway Traffic Safety Administration (NHTSA) regarding Ford's and General Motors' petitions for exemptions from the Federal Motor Vehicle Safety Standards for autonomous vehicles (AVs) Docket No. NHTSA- 2022-0067. The responses read in part: We urge NHTSA to make full accessibility for all people with disabilities a primary condition and prerequisite to granting any exemption allowing the operation of autonomous vehicle services. United Spinal submitted a response to questions posed by the National Highway Traffic Safety Administration (NHTSA) in support of General Motors petition for exemptions from the Federal Motor Vehicle Safety Standards for autonomous vehicles (Avs) Docket No. NHTSA- 2022-0067. Submitted complaint letter to DOT regarding mishandling/injurying (including damage to his wheelchair) and dropping of United Spinal's President and CEO (a wheelchair user) on two recent flights.

United Spinal submitted a letter to CMS on behalf of United Spinal's Access and Care Coalition for the need to reform catheter coding. Following up on a request to United Spinal's Access and Care Coalition made to the Amerian Urological Association (AUA) in June, the AUA sent a letter to CMS supporting our position on the need for coding reform and requesting that they work with United Spinal's Access and Care Coalition. Met with CMS in August to discuss the need for catheter coding reform. United Spinal participated in a CMS contractor roundtable discussion regarding dual-eligibles and physical access issues for people with disabilities along with NIDILIRR Director, Anjali Forber-Pratt.

United Spinal supports H.R.2373/S.3238 - Transformation to Competitive Integrated Employment Act. United Spinal submitted comments as Co-Chair of the Consortium of Constituents with Disabilities (CCD) to the RFI from Rep. Cathy McMorris Rodgers on employment landscape for people with disabilities. Also endorsed CCD wide comments.

Assisted the White House regarding dissemination of the new Affordable Connectivity Program.

To advocate for equitable and inclusive accessibility in air travel for people with disabilities, especially wheelchair users, United Spinal public policy staff met with congressional staff in support of the Air Carrier Access Amendments Act H.R. 1696/S. 642. United Spinal policy staff provided feedback to Senate office on disability related provisions that may be considered in the next Federal Aviation Administration reauthorization bill. United Spinal policy staff participated in the 20th Annual Transportation Security Administration (TSA) Coalition meeting.

United Spinal advocacy and policy staff discussed accessibility concerns in a quarterly meeting of the Disability Community Advisory Group with the District of Columbia Homeland Security Emergency Management Agency.

United Spinal advocacy and policy staff met with staff for Sen. Susan Collins (R-ME) to urge that the Senator cosponsor the ABLE Age Adjustment Act (S. 331).

United Spinal supports H.R.2373/S.3238 - Transformation to Competitive Integrated Employment Act.

United Spinal/VetsFirst supports the AUTO for Veterans Act - S. 444/H.R. 1361, the Care Access Resources for Veterans Act/CARS for Vets Act/H.R. 3304 and the S. 910 SAFE Banking Act.

United Spinal advocacy and policy staff participated shared concerns around access in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal advocacy and policy staff attended a site visit of a soft mockup of Amtraks forthcoming intercity trainset cars. United Spinal advocacy and policy staff attended a site visit of the new Amtrak Acela trainset. United Spinal supports the Disability Access to Transportation Act (H.R. 1697/S. 2038) (supports including in FY23 transportation appropriations the intermediate one stop pilot program contained in H.R. 1697 and the Air Carrier Access Amendments Act (H.R. 1696/S. 642). United Spinal continued partnering with May Mobility and other partners on a project for further consideration with the U.S. Department of Transportations Inclusive Design Challenge to create more accessibility for people with disabilities as well as everyone else, particularly in utilizing new technologies with automated vehicles and related infrastructure. United Spinal staff continue to partner with May Mobility on the US Department of Transportations Inclusive Design Challenge on automated vehicle accessible components and technologies. United Spinal policy staff participated in a virtual US Department of Transportation Information Session on DOT Priorities. United Spinal, along with numerous other disability organizations, and as members of the Consortium for Constituents with Disabilities Transportation Task Force adopted AV principles and recommendations in the areas of: autonomous vehicle accessibility; costs; data; infrastructure; legislation; licensing and insurance; research and funding; resiliency, regulation, equivalent and integrated service; safety; and workforce for regulatory and legislative considerations. United Spinal, along with numerous other disability organizations, as members of the Consortium for Constituents with Disabilities (CCD) Transportation Task Force submitted comments to the National Highway Traffic Safety Administration (NHTSA) on their New Car Assessment Program (NCAP), Docket No. NHTSA-2021- 0002. The comments read in part, We are grateful for the U.S. Department of Transportations (DOTs) attention to the safety of people traveling outside of vehicles in the NCAP and its inclusion of pedestrian automatic emergency braking (PAEB) and other Advanced Driver Assistance Systems (ADAS).

United Spinal Association supports HR 3932 / S 2076 The Pioneering Antimicrobial Subscriptions to End Up surging Resistance (PASTEUR) Act. United Spinal advocacy and policy staff met with staff for Sen. Bob Casey (D-PA) to discuss support for increasing funding for the Spinal Cord Injury Model Systems program at NIDILIRR. To advocate for the disability community being included as a population In equitable diversity efforts and as a member of the Disability Rehabilitation Research Coalition (DRRC), United Spinal endorsed DRRCs Comments to NIH on the NIH-Wide Strategic Plan Framework for Diversity, Equity, Inclusion, and Accessibility. As a member of the Disability Rehabilitation Research Coalition (DRRC), United Spinal supported DRRCs Comments on submitted comments to National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) on their proposed rule updating the peer review criteria to increase consideration of how projects employ and reach out to people with disabilities. As a member of the Disability Rehabilitation Research Coalition (DRRC), United Spinal, along with numerous other disability organizations, signed onto DRRCs Comments to NIH and AHRQ urging consideration of designating people with disabilities as a health disparity population for purposes of federal research conducted at the National Institute on Minority Health and Health Disparities (NIMHD) and across the National Institutes of Health (NIH). Ask the House and Senate for Increased Funding for Spinal Cord Injury Model Systems at NIDILRR. United Spinal supports the Improving Seniors' Timely Access to Care Act - H.R 3173/S. 3018. United Spinal provided comments to CMS on the proposed IRF payment rule - our comments focus on CMS Request for Information (RFI) regarding potential application of the home health transfer policy to IRFs, as well as broader concerns with access to appropriate rehabilitation for complex conditions in the Medicare IRF benefit.

United Spinal/VetsFirst supports the AUTO for Veterans Act - S. 444/H.R 1361.

United Spinal Association supports HR 2168 / S 3193 Expanded Telehealth Access Act. United Spinal Association supports HR 3932 / S 2076 The Pioneering Antimicrobial Subscriptions to End Up surging Resistance (PASTEUR) Act. United Spinal Association/VetsFirst supports The Advanced Safe Testing at Residence Telehealth (A-START) Act of 2021. Increase Funding for Spinal Cord Injury Model Systems - House/Senate. Discussed the need for SCIMS increased funding and next steps with Director Anjali Forber-Pratt, Dir., NIDILRR. United Spinal Association raised concerns: regarding accessibility of COVID-19 tests; MA and Part D programs, notice of benefit and payment parameters; support CMS access to dental surgical services, support the DMEPOS Relief Act (H.R. 6641); share concerns re the CMS ACA Exchange Rule; support the Health Data Use and Privacy Commission Act (S. 3620); shared concerns with CMS regarding access to DME in times of public health emergency. United Spinal advocacy and policy staff participated in a meeting with representatives from the CDC, CMS, and ACL urging the CDC to issue guidance on census reduction of nursing homes and other institutional settings as an infection control measure. United Spinal supported comments as part of the Disability and Rehabilitation Research Coalition on the draft Strategic Plan for the NIH Chief Officer for Scientific Workforce Diversity (COSWD). Support significant investment into home and community-based services and supports. Met with House and Senate in support of improvements in health equity (Ways and Means Committee Subcommittee on Health United States House of Representatives; testimony); SUPPORT EQUITABLE REFORMS TO THE MEDICARE PHYSICIAN FEE SCHEDULE; SUPPORT H.R. 944 TO ADDRESS SPECIALTY MEDICINE PHYSICIAN SHORTAGES IN RURAL AREAS; SUPPORT H.R. 2256/S. 834 TO INCREASE THE NUMBER OF GME RESIDENCY SLOTS; SUPPORT H.R. 2903/S. 1512; SUPPORT H.R. 5030/S.2706 TO IMPROVE DIVERSITY IN CLINICAL TRIALS TO PERMANENTLY EXPAND TELEHEALTH SERVICES

United Spinal advocacy and policy staff signed a letter to Senator Grassley urging him to cosponsor the ABLE Age Adjustment Act (S. 331) and urged for support with other Senate offices.

United Spinal advocacy and policy staff participated shared concerns around access in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal supports the Disability Access to Transportation Act (H.R. 1697/S. 2038), and the Air Carrier Access Amendments Act (H.R. 1696/S. 642). United Spinal continued partnering with May Mobility and other partners on a project for further consideration with the U.S. Department of Transportations Inclusive Design Challenge to create more accessibility for people with disabilities as well as everyone else, particularly in utilizing new technologies with automated vehicles and related infrastructure. Shared concerns regarding the DOT Public Meeting on Air Travel for Passengers with Disabilities. Submitted comments to Department of Transportations Research, Development, and Technology (RD&T) Strategic Plan for fiscal years (FY) 2022-2026. Submitted comments to the Federal Highway Administration regarding electric vehicles and chargers.

United Spinal supports H.R.2373/S.3238 - Transformation to Competitive Integrated Employment Act. Raised issues to consider re WIOA reauthorization.

United Spinal advocacy and policy staff discussed accessibility concerns in a quarterly meeting of the Disability Community Advisory Group with the District of Columbia Homeland Security Emergency Management Agency.

United Spinal advocacy and policy staff signed a letter to the Attorney General to urge the Department of Justice to immediately pursue regulatory and additional subregulatory initiatives under Titles II and III of the ADA to ensure that state and local governments and public accommodations procure, design, maintain, and use websites, mobile apps, online systems, and other forms of information and communication technology that are accessible to and usable by people with disabilities. United Spinal raised concerns with DOJ on access to medical diagnostic equipment, home testing and related accessible communications.

United Spinal/VetsFirst supports the AUTO for Veterans Act - S. 444/H.R 1361. United Spinal/VetsFirst supports the Care for the Veteran Caregiver Act - H.R. 110. United Spinal/VetsFirst signed onto a letter facilitated by the Natioanl and Military Veterans Alliance regarding VA's Program of Comprehensive Assistance for Family Caregivers (PCAFC) Final Rule Changes issued on July 31, 2020 regarding proposed and final rule which tightened the eligibility criteria beyond what is required by law. United Spinal/VetsFirst signed onto letters, facilitated by The Military Coalition, to: the Senate stating that another continuing resolution (CR) would damage national security and progress on critical priorities. the House and Senate NDAA conferees on important legislation to ensure appropriate pay and benefits for veterans and military families. Following support and recommendations: Incentive Pay Parity (H.R.4350/ S.2792 Sec. 602) - TMC appreciates the House and Senate including parity of Incentive Pay benefits for National Guard and Reserve members who meet the same standards as Active Duty. It is also gratifying that several Reserve Component Chiefs have testified on the positive impact this benefit will have in retaining technicians and other RC service members. The individuals who meet this criteria serve in hardship specialties that demand training beyond other specialties and retaining them will both recognize their efforts and help the services retain their leadership and experience. Servicemembers Civil Relief Act (H.R.4350 Sec. 6414) - TMC supports a commonsense approach to binding arbitration. We also encourage the House and Senate to extend this authority to USERRA. This additional authority will help future employment compliance and fulfill the intent of USERRA, to keep National Guard and Reserve members employed. We stand by to continue working this issue in the second Session. Skillbridge program (H.R.4350 Sec. 553) - TMC requests the committee change eligibility for the program from 180-day orders to 179-day orders. The National Guard and Reserve continue to lose vital benefits because DoD deliberately cuts-off orders one day prior to eligibility. In this case, Reserve Component service members have problems staying employed which is evident in the number of cases the Department of Labor and ESGR work on each year with companies not meeting USERRA laws. Skillbridge is a program that can provide valuable services. Medical Billet Cuts (H.R.4350 Sec. 721) - TMC is concerned about the impact on beneficiary access to care if the Services move forward with proposed military medical billet cuts. We support the House provision which would pause military medical billet reductions for one year and would require a report to Congress on the impact of any cuts and plans to mitigate those effects. Autism Care (H.R.4350 Sec. 738) - TMC supports an independent analysis of the Autism Care Demonstration. Obstetrical Care (S.2792 Sec. 701) - TMC supports adding coverage of preconception and prenatal carrier screening, to address a gap in TRICARE policy and ensure that military families can access widely available screening tests. Mental Health (H.R.4350 Sec. 734 and 736) - TMC supports authorizing pilot programs on mental health appointment scheduling (Sec. 734) and surveying access to mental health care (736). Sexual Assault and Harassment Prevention (S.2792 Secs. 531-538, and H.R.4350 Secs. 532-538, 539A, 539C, 539F, 541) - TMC supports inclusion of Senate and House provisions addressing sexual assault and harassment prevention and disposition. Basic Needs Allowance (H.R. 4350/S. 2792 Sec. 601) - TMC supports the House version of Military Family Basic Needs Allowance, which excludes the Basic Allowance for Housing as income. No military family should go hungry. Child Care (H.R.4350 Sec. 626 and 2814) - TMC supports child care provisions that improve access to quality, affordable care, ensure safety of Child Development Centers (Sec. 2814), and expand the in-home child care fee assistance pilot program (Sec. 626). Military Retirement Pay (S.2792 Sec. 606) - TMC supports prohibiting the Defense Finance and Accounting Service (DFAS) from suspending military retired pay or a military retirement annuity until DFAS provides the beneficiary with 90-day notice to the retiree, annuitant, or their designated representative that explains the reason for the suspension. This provision also requires DFAS to provide a single annual eligibility procedure for retirees and annuitants.

United Spinal advocacy and policy staff participated shared concerns around access in a quarterly call with Amtrak along with other representatives from disability organizations. United Spinal advocacy and policy staff, along with our CEO, met with several Congressional offices to discuss priorities, including the Disability Access to Transportation Act (H.R. 1697/S. 2038), and the Air Carrier Access Amendments Act (H.R. 1696/S. 642). United Spinal continued partnering wtih May Mobility and other partners on a project for further consideration with the U.S. Department of Transportations Inclusive Design Challenge to create more accessibility for people with disabilities as well as everyone else, particularly in utilizing new technologies with automated vehicles and related infrastructure.

In September 2021, to help improve accessibility at airports, United Spinal advocacy and policy staff attended the virtual 19th Annual TSA Disability and Multicultural Coalition Conference and raised with Transportation Security Administration (TSP) Administrator David P. Pekoske TSA procedures for wheelchair users who are traveling with toddlers. United Spinal participated in a US Department of Transportation (DOT) Office of Aviation Consumer Protection Disability Advocates air travel meeting during which service animals and damaged wheelchairs were the main topics discussed. United Spinal asked how consumer complaints to the DOT were prioritized when received. Service denials and injuries are given priority but patterns of behavior by airlines are also monitored.

United Spinal advocacy and policy staff met with staff for Rep. Grace Meng (D-NY) to discuss her introduction of a resolution recognizing United Spinals 75th anniversary. United Spinal advocacy and policy staff met with staff for Sen. Richard Blumenthal (D-CT) to discuss possible legislation related to guardianship reform. United Spinal signed onto a letter to DOJ re reupping rulemaking on web access, Next Gen 911, and access to medical diagnostic/other equipment & furniture. Public Charge Ground of Inadmissibility, Advance Notice of Proposed Rulemaking, DHS Docket No. USCIS- 2021-0013, RIN 1615-AC74 (Aug. 23, 2021). United Spinal signed onto this Consortium for Citizens with Disabilities letter - While elimination of the rule is a matter for Congress, we urge DHS to adopt the narrowest possible interpretation of the rule within its authority, to avoid needless harms to our immigrant communities, including immigrants with disabilities. Comments for the Record of October 20, 2021 Hearing on Oversight of the Americans with Disabilities Act of 1990: The Current State of Integration of People With Disabilities to the House Judiciary Committee. United Spinal is a member of the CCD Rights Task Force and Employment and Training Task Force: submitted these comments for the record of the above-captioned hearing on the Americans with Disabilities Act. We applaud you for conducting a hearing concerning implementation of the Americans with Disabilities Act (ADA) and its integration mandate. As you and others observed at the hearing, the full promise of the ADA remains unrealized for far too many people with disabilities. Implementation and enforcement of the integration mandate and the Supreme Courts Olmstead decision are critically important to the lives of disabled people.

United Spinal advocacy and policy staff, along with our CEO, met with several Congressional offices to discuss priorities, including funding for caregiving, funding for Spinal Cord Injury Model Systems, telehealth. United Spinal advocacy and policy staff were invited to meet with staff from Sen. Tim Kaines (D-VA) office to discuss legislation addressing the effects of long COVID. United Spinal met with the HHS Office of Inspector General to discuss challenges with Medicare and Medicaid coverage of urological supplies for people with disabilities. As a member of the Disability and Rehabilitation Research Coalition, United Spinal supported comments submitted by the Coalition on the Draft HHS Strategic Plan Fiscal Years 2022 - 2026. United Spinal supports provisions in H.R.5376 - the Build Back Better Act. To improve transportation options and accessibility for all, especially people with disabilities, United Spinal advocated for enactment of Senate Amendment 2137 to H.R. 3684, the Infrastructure Investment and Jobs Act. To modernize and increase federal investment for in-home care for people with disabilities, United Spinal partnered with the White House on a Roundtable on Funding for Home and Community-Based Services on October 6, 2021. To bring increased awareness to people living with spinal cord injuries and other neurological conditions, United Spinal advocated for the enactment of S.Res.278 - A resolution recognizing the 75th anniversary of United Spinal Association, a leading national advocacy organization that is dedicated to promoting the independence and enhancing the quality of life of all people living with spinal cord injuries and neurological disorders, including veterans, and providing support and information to their loved ones, care providers, and personal support networks. To encourage maintaining the policy changes that allowed 35 million Americans with high-deductible health plans coupled with Health Savings Accounts (HDHP-HSAs) to receive telehealth benefits from their employer or insurer pre-deductible, United Spinal, as a member of the Personal Connected Health Alliance ( PCHAlliance), supported a letter the PCHAlliance signed onto and that was submitted to bipartisan congressional leadership urging telehealth benefits to be maintained. To bring increased awareness to people living with spinal cord injuries and other neurological conditions, United Spinal advocated for the enactment of S.Res.698 - A resolution designating September 2020 as "National Spinal Cord Injury Awareness Month". To support health care delivery, including behavioral health services, through the use of information and technology which serves serve as the backbone to evidence-based health care, United Spinal, as a member of the Personal Connected Health Alliance ( PCHAlliance), supported a memo the PCHAlliance sent to bipartisan congressional leadership, U.S. Senate Finance Committee Chairman Ron Wyden and Ranking Member Mike Crapo, responding to the Finance Committees outreach to obtain input on evidence-based policies to enhance and improve access to behavioral health services. The memo addressed the following topics, strengthening workforce, Increasing Integration, Coordination and Access to Care and expanding telehealth, specifically including a call for Equitable Access to affordable, reliable, and quality broadband. As a member of the Disability and Rehabilitation Research Coalition, United Spinal supported comments submitted by the Coalition on the COVID-19 Health Equity Task Forces, Office of Minority Health, U.S. Department of Health and Human Services Final Report and Recommendations. United Spinal supported the House passage of the Build Back Better Act. Signed on as subgrantee recipient and partner for the National Institutes of Health All of Us program. Medicare Coverage of Innovative Technology (MCIT) and Definition of Reasonable and Necessary [CMS-3372-P2; RIN: 0938-AT88] - As a steering Committee member of the ITEM Coalition, United Spinal signed onto these comments where the ITEM Coalition strongly supported the proposal to create the MCIT pathway and allow immediate Medicare coverage of FDA-designated and market-approved breakthrough devices. Thus, we are disappointed in the agencys decision to back away from this proposal and recommend that CMS reconsider whether this is the most appropriate stance to protect Medicare beneficiaries and press forward with an alternative that accomplishes a similar purpose the final rule was intended to achieve. Proposed Review Choice Demonstration for Inpatient Rehabilitation Facility Services (CMS-10765). As a Steering Committee member of the Coalition to Preserve Rehabilitation, United Spinal signed onto a letter raising concerns about the proposed demonstration and the consequences it would have for patient access to care in inpatient rehabilitation hospitals and rehabilitation units of acute care hospitals. Unfortunately, these concerns were not adequately addressed by CMS as a result of the initial comment period in February 2021, and CMS continues to signal its intention to move forward with this expansive new demonstration project that disproportionately impacts Medicare beneficiaries with disabilities and chronic conditions. We therefore urge CMS to withdraw this proposal in its entirety and discuss with stakeholders other, less problematic ways to achieve its program integrity goals.

To relieve burdensome administrative processes for people with disabilities when responding to the Social Security Administrations periodic Continuing Disability Reviews (CDR) of recipients of Supplemental Security Income (SSI) or Title II Social Security benefits awarded on the basis of disability, United Spinal, as a member of the Consortium for Citizens with Disabilities Social Security Task Force, signed on to comments submitted in response to SSAs Agency Information Collection Activities: Proposed Request, 86FR 46307 (August 18, 2021), Docket No: SSA-2021-0029.

United Spinal supports H.R.2373/S.3238 - Transformation to Competitive Integrated Employment Act United Spinal presented on a panel as part of a Congressional Briefing for National Disability Employment Awareness Month on the challenges with finding employment for people with disabilities.

To promote a sustained federal investment to ensure deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable, adoptable for all Americans that is fundamental to our daily independence, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force letter to the Federal Communications Commission comments on the Emergency Broadband Connectivity Fund Assistance Program. To promote technology, including assistive technology and accessible information and communication technology, that plays an increasingly important role in peoples lives in business, communication, education, employment and interaction with all levels of government as well as facilitating activities of daily living for people with disabilities, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force welcome letter to members of the 117th Congress. To make telehealth services for Medicare beneficiaries permanent, United Spinal supports comments made by the Personal Connected Health Alliance and the Healthcare Information and Management Systems Society, Inc. to the Senate Telehealth Working Group and Congressional Telehealth Caucus on January 8, 2021 about the the CONNECT for Health Act as important revisions and updates to this legislation for the 117th Congress are considered. The comments read in part, Many of the barriers and restrictions to Medicare telehealth that had been in place for decades disappeared almost overnight, allowing millions of Americans to have critical access to a new range of virtual services. To promote permanent universal broadband deployment with Congress and the Federal Communications Commission (FCC), United Spinal Association responded with a letter to the FCCs request for comments on the new temporary Emergency Broadband Benefit Program. To support the inclusion of $50 million in the FY 2022 Senate Labor, Health and Human Services and Education Appropriations (LHHS) bill for the Assistive Technology (AT) Act Programs United Spinal signed onto letter to congressional leaders as a member of the Consortium for Citizens with Disabilities Technology and Telecommunications Task Force. Funding provided through the AT Act supports programs that ensure people with disabilities have access to and are able to acquire the assistive technology, devices, and services they need to live, work, and attend school in their communities.

United Spinal supports H.R 1697/ S. 2038 - the Disability Access to Transportation Act. United Spinal supports the Air Carrier Access Amendments Act. S. 642/H.R.1696. To outline the transportation limitations and needs of persons with disabilities in order to access the imperative COVID-19 vaccine, United Spinal Signed on to a letter to the Biden Administration organized by two Task Forces of the Consortium for Citizens with Disabilities. To advocate for greater accessibility in transportation and to respond to the request for comments on the Automated Driving Systems (ADS) Framework, United Spinal supported a letter to U.S. Secretary of Transportation Buttigieg by the Co Chairs of the Consortium for Citizens with Disabilities Transportation Task Force. To provide competitive grants to assist State and local governmental authorities in addressing accessibility needs of legacy rail fixed guideway public transportation systems, United Spinal supported a Consortium for Citizens with Disabilities Transportation Task Force Co-Chairs letter supporting supporting Senator Tammy Duckworths introducing the All Station Accessibility Program Act of 2021 or the ASAP Act. As Congress and the Administration craft major infrastructure legislation, United Spinal help draft and signed onto letters, along with numerous other stakeholders, to congressional leaders and administration officials seeking to harness innovations in transportation to dramatically improve equitable services in public transportation, particularly for those with disabilities, seniors, and underserved populations by: (1) Increasing investment in on-demand microtransit while ensuring accessibility in those and any other future transit services; and (2) Creating a federal grant program to bring innovation to ADA paratransit services. To enhance transportation opportunities and efficiencies in transit and paratransit, United Spinal, along with numerous other disability organizations and organizations and Via, a transit technology company, shared a letter with members of Congress and their staffs advocating for increased focus and federal funding for micro transit on demand transportation technologies programs and services.

United Spinal advocacy and policy staff participated in a quarterly meeting of the Disability Community Advisory Group with DC HSEMA on emergency preparedness issues for the disability community.

â--�United Spinal advocacy and policy staff worked with staff from the office of Rep. Lucy McBath (D-GA) in support of a House sign-on letter to the House Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022. â--�United Spinal advocacy and policy staff submitted appropriations requests to House and Senate in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022. â--�United Spinal advocacy and policy staff worked with chapters and advocates around the country to secure letters of support from members of Congress for United Spinals application for the National Paralysis Resource Center federal grant from the Department of Health and Human Services. Support: Increased funding for Spinal Cord Injury Model Systems; increased funding for Medicaid home and community-based services (HCBS); Support: CONNECT for Health Act - S. 1512/H.R. 2903 and HOUSE: Protecting Access to Post-COVID-19 Telehealth Act - H.R. 366 and Expanded Telehealth Access Act - H.R. 2168 support expanding telehealth access beyond the pandemic. To continue efforts to achieve a more equitable culture within the biomedical research enterprise and to break down barriers to equity in the workforce, United Spinal, as a member of the Disability Rehabilitation Research Coalition, signed on to a letter to the Director of the National Institutes of Health (NIH) in response to NIHs Request for Information to Advance and Strengthen Racial Equity, Diversity, and Inclusion in the Biomedical Research Workforce and Advance Health Disparities and Health Equity Research (NOT-OD-21-066). To recognize that disability cuts across all demographics and almost all areas of research conducted by the NIH and should be recognized as such in its Strategic Plan, United Spinal, as a member of the Disability Rehabilitation Research Coalition (DRRC), supported the DRRCs letter on the on FY 2021-2025 NIH-Wide Strategic Plan Framework. Support telehealth expansion and improvements in the delivery of rehabilitation and access to assistive devices and assistive technology. To support federal research impacting people with disabilities, illnesses, injuries, and chronic conditions, especially those suffering from acute or long-term impacts of COVID-19, United Spinal signed onto a letter of recommendations and requests for program funding in Fiscal Year (FY) 2022 to congressional appropriations leadership as a member of the Disability and Rehabilitation Research Coalition (DRRC). To expand the knowledge base around access to assistive technologies and devices (AT) and lay the groundwork for improvements in care and policy solutions to support people with limb loss and limb difference, United Spinal as a member of the Disability and Rehabilitation Research Coalition (DRRC), signed onto letters of support for legislation recently introduced by Reps. G.K. Butterfield (D-NC) and Brett Guthrie (R-KY), the Access to Assistive Technology and Devices for Americans Study Act (the Triple A Study Act, H.R. 2461), urging members of Congress to cosponsor this bipartisan legislation. To advocate for people with disabilities,United Spinal supported a Disability and Rehabilitation Research Coalition letter of welcome and congratulations to Dr. Anjali Forber-Pratt, the new Director of the National Institute on Disability, Independent Living, and Rehabilitation Research. To increase access to telemental health care, United Spinal as a member of the Personal Connected Health Alliance, supported letters the PCHAlliance sent endorsing the Telemental Health Care Access Act to Senator Bill Cassidy and other Senate supporters and to U.S. Representatives Doris Matsui and Bill Johnson.

Support the SSI Restoration Act. S. 630 Support the Disability Employment Incentive Act To expand eligibility for the Medicaid Ticket to Work Program to include individuals who are 65 years of age or older. (Under the current program, states may establish a Medicaid buy-in option for working individuals with disabilities whose income exceeds the customary limits and who are between the ages of 16 and 64.), United Spinal, as a member of the Secure Work Coalition, signed on to a letter supporting Senator Rob Portmans reintroduction of the SENIOR Care Act in the 117th Congress. To support including long-overdue improvements to the Supplemental Security Income (SSI) program in the pandemic recovery legislation now being considered, United Spinal as a member of the Consortium for Citizens with Disabilities (CCD) signed onto a letter to bipartisan congressional leadership. The letter may be reviewed at: http://c-c-d.org/fichiers/CCD-SSI-Letter_5-20-21.pdf To enhance service delivery at the Social Security Administration (SSA), United Spinal supported a hearing statement submitted by the cochairs of the Social Security Task Force of the Consortium for Citizens with Disabilities to the bipartisan leadership of the Senate Finance Committee. The comments focus on issues related to SSAs Operations component because the Deputy Commissioner of Operations was the agencys witness for this hearing. To support updating the maximum fee that a claimants representative can be paid using a fee agreement (the fee cap) for successfully representing an individual applying for Social Security Disability or SSI benefits, and for putting into place a process to ensure annual inflation-linked updates, United Spinal, along with numerous other disability organizations, signed onto a letter to the Social Security Commissioner. To support including long-overdue improvements to the Supplemental Security Income (SSI) program in the pandemic recovery legislation now being considered, United Spinal as a member of the Consortium for Citizens with Disabilities (CCD) signed onto a letter to bipartisan congressional leadership. To enhance service delivery at the Social Security Administration (SSA), United Spinal supported a hearing statement submitted by the cochairs of the Social Security Task Force of the Consortium for Citizens with Disabilities to the bipartisan leadership of the Senate Finance Committee. The comments focus on issues related to SSAs Operations component because the Deputy Commissioner of Operations was the agencys witness for this hearing. To support updating the maximum fee that a claimants representative can be paid using a fee agreement (the fee cap) for successfully representing an individual applying for Social Security Disability or SSI benefits, and for putting into place a process to ensure annual inflation-linked updates, United Spinal, along with numerous other disability organizations, signed onto a letter to the Social Security Commissioner. To ease the reporting burden on Social Security Disability beneficiaries, especially throughout the COVID Pandemic, United Spinal supported a letter the co-chairs of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD sent to the Social Security Administration responding to a notice that would have allowed the collection of an array of new information from people with disabilities. To eliminate a programmatic work disincentive by allowing young adults with disabilities to try and work and see if they can support themselves without losing eligibility for DAC benefits, the cochairs of the Consortium for Citizens with Disabilities (CCD) Social Security Task Force wrote bill sponsors in support of the Work Without Worry Act and thanked them for introducing this crucial legislation.

Accessible, Affordable Internet for All Act, H.R. 1783/S. 745 United Spinal is advocating for a sustained federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible and adoptable for all Americans. Please support the Accessible, Affordable Internet for All Act, H.R. 1783/S. 745, introduced by Majority Whip, Representative James Clyburn (D-SC) in the House and Sen. Amy Klobuchar (D-MN) in the Senate. To sustain federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable and adoptable for all Americans, United Spinal, a member of the Personal Connected Healthcare Alliance (PCHAlliance), supported letters the PCHAlliance submitted to bipartisan Congressional leadership and to President Biden.

To help improve accessibility at airports, United Spinal attended the virtual 19th Annual TSA Disability and Multicultural Coalition Conference held virtually on September 28, 2021. Advocacy and policy staff specifically asked Transportation Security Administration Administrator David P. Pekoske about TSA procedures for wheelchair users who are traveling with toddlers. Advocacy and Policy staff represented United Spinal at the September meeting of the DOT Air Carrier Access Act Advisory Committee (ACAA Advisory Committee). We advocated for inclusion in the final report of a general statement of support for accessibility of aircraft.

United Spinal advocacy and policy staff participated in a quarterly meeting of the Disability Community Advisory Group with DC HSEMA on emergency preparedness issues for the disability community.

United Spinal advocacy and policy staff met with staff from Sen. Menendezs office to discuss a possible Dear Colleague to seek cosponsors for the Disability Access to Transportation Act (S. 2038). United Spinal advocacy and policy staff participated in a quarterly call with Amtrak along with other representatives from disability organizations. To promote access to transportation, United Spinal, as a member of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force drafted a letter to support the Disability Access to Transportation Act (H.R.1697 / S. 2038). To help ensure safety for people with disabilities using public transit, United Spinal as a member of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force supported comments the Task Force Co Chairs submitted to the US Department of Transportation in response to the Request for Information on Transit Safety Concerns Docket No. FTA 2021-0011. The comments read in part, We urge the Federal Transit Administration to account for the accessibility of the safety systems that are put into effect and to actively seek rider-oriented perspectives on safety priorities. United Spinal supports the All Stations Access Program (Sen. Duckworth). House INVEST Act - United Spinal supports various consumer protections provisions for people with disabilities in the INVEST Act. Met with Rep. Titus to thank her for her leadership on DATA - H.R. 1697 and discuss next steps.

United Spinal advocated for sustained federal support for accessible affordable broadband service and for its deployment along with a cost support program. Accessible, Affordable Internet for All Act, H.R. 1783/S. 745 United Spinal is advocating for a sustained federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible and adoptable for all Americans. Please support the Accessible, Affordable Internet for All Act, H.R. 1783/S. 745, introduced by Majority Whip, Representative James Clyburn (D-SC) in the House and Sen. Amy Klobuchar (D-MN) in the Senate. United Spinal and VetsFirst, as part of the Clear 2 Connect Coalition, supports a request from a number of Internet Protocol Captioned Telephone Service (IP CTS) service providers that have asked the FCC to defer implementing a reduced IP CTS compensation rate, which was effective on July 1, 2021. United Spinal joined disability advocacy groups in Text to 988 petition that was filed with the FCC.

United Spinal advocacy and policy staff facilitated virtual meetings with staff for Senate Appropriations Committee lead offices to discuss increased funding for Spinal Cord Injury Model Systems in the Senates FY22 Labor-HHS-Education appropriations bill. These offices were Sen. Leahy (D-VT), Sen. Shelby (R-AL), Sen. Murray (D-WA), and Sen. Blunt (R-MO). To promote greater accessibility to healthcare, United Spinal, as a member of the Personal Connected Healthcare Alliance, PCHAlliance, along with numerous other organizations, supported a letter sent to Congressional leadership outlining priorities for Medicare Telehealth reform. To improve the delivery of new health care treatments and cures through federal legislation building on the 21st Century Cures Act of 2016 which accelerated the discovery, development, and delivery of new treatments and cures for patients and which have had a tremendous impact on our health care ecosystem, United Spinal supported a memo submitted to select members of Congress by the Healthcare Information and Management Systems Society (HIMSS) and the Personal Connected Health Alliance (PCHAlliance). United Spinal is a member of the PCHAlliance. To advance accessibility in standards for remote patient monitoring, United Spinal supported a memo from the Healthcare Information and Management Systems Society (HIMSS) and the Personal Connected Health Alliance (PCHAlliance) in response to National Committee on Vital and Health Statistics on standard setting for remote patient monitoring. Response to National Committee on Vital and Health Statistics (NCVHS) Request for Information on Data Standards, Harmonization of Standards, and Code Sets. To improve health outcomes for people with disabilities, United Spinal, as a member of the Disability Rehabilitation Research Coalition (DRRC), supported comments submitted by the DRRC in response to a request from the Congressional Social Determinants of Health (SDOH) Caucus for information from stakeholders. To improve accessible health outcomes for people with disabilities, United Spinal, as a member of the Personal Connected Health Alliance (PCHAlliance) supported comments on telehealth the PCHAlliance, along with the Healthcare Information and Management Systems Society (HIMSS), submitted in response to the Notice of Proposed Rule Making (NPRM) on Medicare Program; CY 2022 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies; Medicare Shared Savings Program Requirements; Provider Enrollment Regulation Updates; Provider and Supplier Prepayment and Post- Payment Medical Review Requirements (CMS 1751-P). To improve accessible health outcomes for people with disabilities, United Spinal, as a member of the Personal Connected Health Alliance (PCHAlliance) supported comments on telehealth the PCHAlliance, along with numerous other health related organizations, submitted in response to theNotice of Proposed Rule Making (NPRM) on Medicare Program; CY 2022 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies; Medicare Shared Savings Program Requirements; Provider Enrollment Regulation Updates; Provider and Supplier Prepayment and Post-Payment Medical Review Requirements (CMS 1751-P). United Spinal Association signed a letter to the CDC asking for a meeting to discuss the importance of guidance calling for census reduction in congregate care facilities during a pandemic. SCI Awareness Month - worked with Senators Rubio and Baldwin to pass SCI Awareness Month resolution in the Senate.

United Spinal advocacy and policy staff participated in calls with Senate offices to promote funding for Medicaid home and community-based services in the upcoming reconciliation bill. These offices were Sen. Van Hollen (D-MD), Sen. Cardin (D-MD), Sen. Menendez (D-NJ), and Sen. Coons (D-DE). United Spinal advocacy and policy staff met with the White House and planned a Roundtable featuring United Spinal members on the subject of increasing funding for caregiving in the Build Back Better Act. United Spinal advocacy and policy staff provided comments and guidance on the National Council on Disabilitys 2022-2026 strategic plan. To help ensure independent living for people with disabilities, United Spinal, along with numerous other disability organizations, signed on to a letter, led by AAPD, to Congressional leadership expressing support for the full $400 billion for Medicaid Home and Community Based Services (HCBS). United Spinal Association signed onto a letter to CMS commenting on their interim final rule related to vaccine requirements for residents and staff of long-term care facilities. United Spinal joined Coalition for Citizens with Disabilities Comments to the House and Senate on supporting the Better Care Better Jobs Act. The Coalition to Preserve Rehabilitation (CPR), including United Spinal Association, appreciate the opportunity to comment on the Calendar Year 2022 Home Health Prospective Payment System proposed rule. Our comments focus on the proposal to expand the Home Health Value-Based Purchasing Model (HHVBP) nationwide and the broader impact of the recently implemented Patient-Driven Groupings Model (PDGM) on access to care for Medicare beneficiaries in the home health setting. CY 2022 Home Health Prospective Payment System Rate Update; Home Health Value-Based Purchasing Model Requirements and Proposed Model Expansion; Home Health Quality Reporting Requirements Proposed Rule [CMS-1747-P; RIN: 0938-AU37] United Spinal supported efforts to increase access to complex rehab technology for customized wheelchairs.

United Spinal advocacy and policy staff participated in a Consortium for Citizens with Disabilities co-chairs meeting with ACL Acting Administrator Alison Barkoff and officials from ACL, HUD, and DOJ to discuss ways federal agencies can coordinate to enforce the Olmstead decision, and to transfer and divert people with disabilities from nursing homes or congregate settings to community settings. United Spinal advocacy and policy staff participated in a Consortium for Citizens with Disabilities Rights Task Force co-chairs meeting with Kim Knackstedt, Disability Policy Director for the White House Domestic Policy Council to discuss disability representation in the federal workforce, the Biden Administrations commitments on caregiving, and ending the subminimum wage, disability rights initiatives. United Spinal signed a Consortium for Citizens with Disabilities letter of support for a resolution (H. Res. 183/S. Res. 86) supporting disability rights and the role of the disability community in the struggle for civil rights, marking the 20th anniversary of the installation of a statue of President Franklin Delano Roosevelt in a wheelchair at the FDR Memorial in Washington, DC. United Spinal signed a Consortium for Citizens with Disabilities letter to the Senate Judiciary Committee in support of the nomination of Vanita Gupta to be Associate Attorney General. United Spinal signed a National Coalition on Accessible Voting position statement on the For the People Act (S. 1), expressing concerns with a paper ballot mandate and asking for several changes to the bill in order to ensure that people with disabilities have the right to a private and independent vote consistent with their rights under the law. United Spinal and VetsFirst signed onto Consortium for Citizens with Disabilities priority statements for the Administration and Congress on all issues impacting the disability community including disabled veterans.

Multiple meetings with CMS and Congress on protections for Durable Medical Equipment Complex Rehab Technology.

To promote a sustained federal investment to ensure deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable, adoptable for all Americans that is fundamental to our daily independence, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force letter to the Federal Communications Commission comments on the Emergency Broadband Connectivity Fund Assistance Program: http://www.c-c-d.org/fichiers/CCD-Tech-TF-Letter-on-Emergency-Broadband-Connectivity-Fund.pdf To promote technology, including assistive technology and accessible information and communication technology, that plays an increasingly important role in peoples lives in business, communication, education, employment and interaction with all levels of government as well as facilitating activities of daily living for people with disabilities, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force welcome letter to members of the 117th Congress. To make telehealth services for Medicare beneficiaries permanent, United Spinal supports comments made by the Personal Connected Health Alliance and the Healthcare Information and Management Systems Society, Inc. to the Senate Telehealth Working Group and Congressional Telehealth Caucus on January 8, 2021 about the the CONNECT for Health Act as important revisions and updates to this legislation for the 117th Congress are considered. The comments read in part, Many of the barriers and restrictions to Medicare telehealth that had been in place for decades disappeared almost overnight, allowing millions of Americans to have critical access to a new range of virtual services. To promote permanent universal broadband deployment with Congress and the Federal Communications Commission (FCC), United Spinal Association responded with a letter to the FCCs request for comments on the new temporary Emergency Broadband Benefit Program.

United Spinal signed a Consortium for Citizens with Disabilities letter of support for the ABLE Age Adjustment Act (H.R. 1219/S. 331).

To help achieve United Spinals goal of greater accessibility in transportation and to congratulate Secretary Buttigieg on his confirmation, United Spinal sent the Secretary a letter advocating for the Consortium for Citizens with Disabilities Transportation Task Force request for a meeting with him and his modal administrators to discuss the shared goals of President Bidens and his agenda, along with our priorities and urged he adopt Senator Tammy Duckworths recommendation that his senior leadership team include a staff person to focus on accessibility and universal design. The staff person would ideally engage with all modal administrators and have significant experience working with the disability community. United Spinal advocacy and policy staff participated in a virtual call with Amtrak, where they discussed their settlement with the Department of Justice over violations of the ADA. United Spinal advocacy and policy staff participated in a quarterly disability community meeting with Amtrak. United Spinal advocacy and policy staff met with Josh Sanders, Legislative Assistant for Sen. Bob Menendez (D-NJ) to discuss introducing a Senate companion bill to the Disability Access to Transportation Act (H.R. 1697). United Spinal supports H.R 1697 - the Disability Access to Transportation Act. United Spinal supports the Air Carrier Access Amendments Act. S. 642/H.R.1696. United Spinal supports the Disability Employment Incentive Act. S. 630. To promote transportation accessibility, United Spinal supported the comments of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force Co-Chairs to the US Department of Transportation (DOT) on its draft Strategic Plan on Accessible Transportation (Strategic Plan): United Spinal signed onto comments submitted by the Paralyzed Veterans of America. United Spinal also submitted comments. To promote transportation opportunities for people with disabilities, United Spinal signed onto a congratulatory welcome letter from the Consortium for Citizens with Disabilities (CCD) Transportation Task Force to the US Department of Transportation (DOT) Secretary Pete Buttigieg. United Spinal supported a similar letter submitted by the Co Chairs of the Consortium for Citizens with Disabilities (CCD) telecommunications and Technology Task Force. To promote greater transportation opportunities for people with disabilities, United Spinal provided comments in response to the U.S. Department of Transportations Request for Information for the Inclusive Design Reference Hub. To help balance vehicle safety and accessibility for people with disabilities United Spinal supported comments submitted by the Consortium for Citizens with Disabilities Transportation Task Force CoChairs to the Nation Highway Traffic Safety Administrations (NHTSA) Supplemental Notice of Proposed Rulemaking (SNPRM) Docket Number: NHTSA-2016-0031. United Spinal submitted its own comments as well.

United Spinal, as a member of the Consortium of Citizens with Disabilities along with numerous other disability organizations, wrote to Commissioner Andrew Saul requesting he waive all overpayments that arose during the pandemic automatically, without requiring individuals to request waivers in order to relieve an administrative burden on Social Security beneficiaries who may have received an overpayment of benefits. To assist members of Congress in providing assistance to the Social Security Administration to improve its customer service, United Spinal supported a letter the cochairs of the Consortium for Citizens with Disabilities Social Security Task Force sent to select congressional committee staff

Accessible, Affordable Internet for All Act, H.R. 1783/S. 745 United Spinal is advocating for a sustained federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible and adoptable for all Americans. Please support the Accessible, Affordable Internet for All Act, H.R. 1783/S. 745, introduced by Majority Whip, Representative James Clyburn (D-SC) in the House and Sen. Amy Klobuchar (D-MN) in the Senate. To sustain federal investment ensuring the deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable and adoptable for all Americans, United Spinal, a member of the Personal Connected Healthcare Alliance (PCHAlliance), supported letters the PCHAlliance submitted to bipartisan Congressional leadership and to President Biden.

To promote a sustained federal investment to ensure deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable, adoptable for all Americans that is fundamental to our daily independence, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force letter to the Federal Communications Commission comments on the Emergency Broadband Connectivity Fund Assistance Program. To promote technology, including assistive technology and accessible information and communication technology, that plays an increasingly important role in peoples lives in business, communication, education, employment and interaction with all levels of government as well as facilitating activities of daily living for people with disabilities, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force welcome letter to members of the 117th Congress. To make telehealth services for Medicare beneficiaries permanent, United Spinal supports comments made by the Personal Connected Health Alliance and the Healthcare Information and Management Systems Society, Inc. to the Senate Telehealth Working Group and Congressional Telehealth Caucus on January 8, 2021 about the the CONNECT for Health Act as important revisions and updates to this legislation for the 117th Congress are considered. The comments read in part, Many of the barriers and restrictions to Medicare telehealth that had been in place for decades disappeared almost overnight, allowing millions of Americans to have critical access to a new range of virtual services. To promote permanent universal broadband deployment with Congress and the Federal Communications Commission (FCC), United Spinal Association responded with a letter to the FCCs request for comments on the new temporary Emergency Broadband Benefit Program. To support the inclusion of $50 million in the FY 2022 Senate Labor, Health and Human Services and Education Appropriations (LHHS) bill for the Assistive Technology (AT) Act Programs United Spinal signed onto letter to congressional leaders as a member of the Consortium for Citizens with Disabilities Technology and Telecommunications Task Force. Funding provided through the AT Act supports programs that ensure people with disabilities have access to and are able to acquire the assistive technology, devices, and services they need to live, work, and attend school in their communities.

United Spinal advocacy and policy staff participated in a quarterly meeting of the Disability Community Advisory Group with DC HSEMA on emergency preparedness issues for the disability community.

Multiple meetings and conversations with CMS and Congress on protections for Durable Medical Equipment Complex Rehab Technology.

â--�United Spinal advocacy and policy staff worked with the staff of Sen. Bob Casey (D-PA) and Sen. Jerry Moran (R-KS) to introduce and pass S. Res. 278, a Senate resolution recognizing United Spinals 75th anniversary. â--�United Spinal advocacy and policy staff discussed disability representation among Congressional staff, with Rep. Ayanna Pressley as well as other issues such as Spinal Cord Injury Model Systems funding and United Spinals 75th anniversary resolution. â--�United Spinal advocacy and policy staff met with staff from the House Select Committee on the Modernization of Congress to discuss the recruitment, hiring, development, and retention of people with disabilities as Congressional staffers, as well as the need for every Congressional office to formally designate a staffer or legislative team to cover disability issues as a part of their issue portfolio.

â--�United Spinal advocacy and policy staff worked with staff from the office of Rep. Lucy McBath (D-GA) in support of a House sign-on letter to the House Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022. â--�United Spinal advocacy and policy staff submitted appropriations requests to House and Senate in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022. â--�United Spinal advocacy and policy staff worked with chapters and advocates around the country to secure letters of support from members of Congress for United Spinals application for the National Paralysis Resource Center federal grant from the Department of Health and Human Services. Support: Increased funding for Spinal Cord Injury Model Systems; increased funding for Medicaid home and community-based services (HCBS); Support: CONNECT for Health Act - S. 1512/H.R. 2903 and HOUSE: Protecting Access to Post-COVID-19 Telehealth Act - H.R. 366 and Expanded Telehealth Access Act - H.R. 2168 support expanding telehealth access beyond the pandemic. To continue efforts to achieve a more equitable culture within the biomedical research enterprise and to break down barriers to equity in the workforce, United Spinal, as a member of the Disability Rehabilitation Research Coalition, signed on to a letter to the Director of the National Institutes of Health (NIH) in response to NIHs Request for Information to Advance and Strengthen Racial Equity, Diversity, and Inclusion in the Biomedical Research Workforce and Advance Health Disparities and Health Equity Research (NOT-OD-21-066). To recognize that disability cuts across all demographics and almost all areas of research conducted by the NIH and should be recognized as such in its Strategic Plan, United Spinal, as a member of the Disability Rehabilitation Research Coalition (DRRC), supported the DRRCs letter on the on FY 2021-2025 NIH-Wide Strategic Plan Framework. Support telehealth expansion and improvements in the delivery of rehabilitation and access to assistive devices and assistive technology. To support federal research impacting people with disabilities, illnesses, injuries, and chronic conditions, especially those suffering from acute or long-term impacts of COVID-19, United Spinal signed onto a letter of recommendations and requests for program funding in Fiscal Year (FY) 2022 to congressional appropriations leadership as a member of the Disability and Rehabilitation Research Coalition (DRRC). To expand the knowledge base around access to assistive technologies and devices (AT) and lay the groundwork for improvements in care and policy solutions to support people with limb loss and limb difference, United Spinal as a member of the Disability and Rehabilitation Research Coalition (DRRC), signed onto letters of support for legislation recently introduced by Reps. G.K. Butterfield (D-NC) and Brett Guthrie (R-KY), the Access to Assistive Technology and Devices for Americans Study Act (the Triple A Study Act, H.R. 2461), urging members of Congress to cosponsor this bipartisan legislation. To advocate for people with disabilities,United Spinal supported a Disability and Rehabilitation Research Coalition letter of welcome and congratulations to Dr. Anjali Forber-Pratt, the new Director of the National Institute on Disability, Independent Living, and Rehabilitation Research. To increase access to telemental health care, United Spinal as a member of the Personal Connected Health Alliance, supported letters the PCHAlliance sent endorsing the Telemental Health Care Access Act to Senator Bill Cassidy and other Senate supporters and to U.S. Representatives Doris Matsui and Bill Johnson.

â--�United Spinal advocacy and policy staff worked with staff from the office of Rep. Lucy McBath (D-GA) in support of a House sign-on letter to the House Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022. â--�United Spinal advocacy and policy staff submitted House and Senate appropriations requests in support of additional funding for Spinal Cord Injury Model Systems, the National Spinal Cord Injury Statistical Center, and the Model Systems Knowledge Translation Center in Fiscal Year 2022.

United Spinal supports H.R 1697/ S. 2038 - the Disability Access to Transportation Act. United Spinal supports the Air Carrier Access Amendments Act. S. 642/H.R.1696. To outline the transportation limitations and needs of persons with disabilities in order to access the imperative COVID-19 vaccine, United Spinal Signed on to a letter to the Biden Administration organized by two Task Forces of the Consortium for Citizens with Disabilities. To advocate for greater accessibility in transportation and to respond to the request for comments on the Automated Driving Systems (ADS) Framework, United Spinal supported a letter to U.S. Secretary of Transportation Buttigieg by the Co Chairs of the Consortium for Citizens with Disabilities Transportation Task Force. To provide competitive grants to assist State and local governmental authorities in addressing accessibility needs of legacy rail fixed guideway public transportation systems, United Spinal supported a Consortium for Citizens with Disabilities Transportation Task Force Co-Chairs letter supporting supporting Senator Tammy Duckworths introducing the All Station Accessibility Program Act of 2021 or the ASAP Act. As Congress and the Administration craft major infrastructure legislation, United Spinal help draft and signed onto letters, along with numerous other stakeholders, to congressional leaders and administration officials seeking to harness innovations in transportation to dramatically improve equitable services in public transportation, particularly for those with disabilities, seniors, and underserved populations by: (1) Increasing investment in on-demand microtransit while ensuring accessibility in those and any other future transit services; and (2) Creating a federal grant program to bring innovation to ADA paratransit services. To enhance transportation opportunities and efficiencies in transit and paratransit, United Spinal, along with numerous other disability organizations and organizations and Via, a transit technology company, shared a letter with members of Congress and their staffs advocating for increased focus and federal funding for micro transit on demand transportation technologies programs and services.

To help achieve United Spinals goal of greater accessibility in transportation and to congratulate Secretary Buttigieg on his confirmation, United Spinal sent the Secretary a letter advocating for the Consortium for Citizens with Disabilities Transportation Task Force request for a meeting with him and his modal administrators to discuss the shared goals of President Bidens and his agenda, along with our priorities and urged he adopt Senator Tammy Duckworths recommendation that his senior leadership team include a staff person to focus on accessibility and universal design. The staff person would ideally engage with all modal administrators and have significant experience working with the disability community. United Spinal advocacy and policy staff participated in a virtual call with Amtrak, where they discussed their settlement with the Department of Justice over violations of the ADA. United Spinal advocacy and policy staff participated in a quarterly disability community meeting with Amtrak. United Spinal advocacy and policy staff met with Josh Sanders, Legislative Assistant for Sen. Bob Menendez (D-NJ) to discuss introducing a Senate companion bill to the Disability Access to Transportation Act (H.R. 1697). United Spinal supports H.R 1697 - the Disability Access to Transportation Act. United Spinal supports the Air Carrier Access Amendments Act. S. 642/H.R.1696. United Spinal supports the Disability Employment Incentive Act. S. 630. To promote transportation accessibility, United Spinal supported the comments of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force Co-Chairs to the US Department of Transportation (DOT) on its draft Strategic Plan on Accessible Transportation (Strategic Plan): United Spinal signed onto comments submitted by the Paralyzed Veterans of America. United Spinal also submitted comments. To promote transportation opportunities for people with disabilities, United Spinal signed onto a congratulatory welcome letter from the Consortium for Citizens with Disabilities (CCD) Transportation Task Force to the US Department of Transportation (DOT) Secretary Pete Buttigieg. United Spinal supported a similar letter submitted by the Co Chairs of the Consortium for Citizens with Disabilities (CCD) telecommunications and Technology Task Force. To promote greater transportation opportunities for people with disabilities, United Spinal provided comments in response to the U.S. Department of Transportations Request for Information for the Inclusive Design Reference Hub. To help balance vehicle safety and accessibility for people with disabilities United Spinal supported comments submitted by the Consortium for Citizens with Disabilities Transportation Task Force CoChairs to the Nation Highway Traffic Safety Administrations (NHTSA) Supplemental Notice of Proposed Rulemaking (SNPRM) Docket Number: NHTSA-2016-0031. United Spinal submitted its own comments as well.

United Spinal, as a member of the Consortium of Citizens with Disabilities along with numerous other disability organizations, wrote to Commissioner Andrew Saul requesting he waive all overpayments that arose during the pandemic automatically, without requiring individuals to request waivers in order to relieve an administrative burden on Social Security beneficiaries who may have received an overpayment of benefits. To assist members of Congress in providing assistance to the Social Security Administration to improve its customer service, United Spinal supported a letter the cochairs of the Consortium for Citizens with Disabilities Social Security Task Force sent to select congressional committee staff

To promote a sustained federal investment to ensure deployment and maintenance of a high capacity, secure and reliable 5G broadband national network that is accessible, affordable, adoptable for all Americans that is fundamental to our daily independence, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force letter to the Federal Communications Commission comments on the Emergency Broadband Connectivity Fund Assistance Program: http://www.c-c-d.org/fichiers/CCD-Tech-TF-Letter-on-Emergency-Broadband-Connectivity-Fund.pdf To promote technology, including assistive technology and accessible information and communication technology, that plays an increasingly important role in peoples lives in business, communication, education, employment and interaction with all levels of government as well as facilitating activities of daily living for people with disabilities, United Spinal supported the Co Chairs of the Consortium for Citizens with Disabilities Telecommunications and Technology Task Force welcome letter to members of the 117th Congress. To make telehealth services for Medicare beneficiaries permanent, United Spinal supports comments made by the Personal Connected Health Alliance and the Healthcare Information and Management Systems Society, Inc. to the Senate Telehealth Working Group and Congressional Telehealth Caucus on January 8, 2021 about the the CONNECT for Health Act as important revisions and updates to this legislation for the 117th Congress are considered. The comments read in part, Many of the barriers and restrictions to Medicare telehealth that had been in place for decades disappeared almost overnight, allowing millions of Americans to have critical access to a new range of virtual services. To promote permanent universal broadband deployment with Congress and the Federal Communications Commission (FCC), United Spinal Association responded with a letter to the FCCs request for comments on the new temporary Emergency Broadband Benefit Program.

Multiple meetings with CMS and Congress on protections for Durable Medical Equipment Complex Rehab Technology.

United Spinal signed a Consortium for Citizens with Disabilities letter of support for the ABLE Age Adjustment Act (H.R. 1219/S. 331).

United Spinal advocacy and policy staff participated in a Consortium for Citizens with Disabilities co-chairs meeting with ACL Acting Administrator Alison Barkoff and officials from ACL, HUD, and DOJ to discuss ways federal agencies can coordinate to enforce the Olmstead decision, and to transfer and divert people with disabilities from nursing homes or congregate settings to community settings. United Spinal advocacy and policy staff participated in a Consortium for Citizens with Disabilities Rights Task Force co-chairs meeting with Kim Knackstedt, Disability Policy Director for the White House Domestic Policy Council to discuss disability representation in the federal workforce, the Biden Administrations commitments on caregiving, and ending the subminimum wage, disability rights initiatives. United Spinal signed a Consortium for Citizens with Disabilities letter of support for a resolution (H. Res. 183/S. Res. 86) supporting disability rights and the role of the disability community in the struggle for civil rights, marking the 20th anniversary of the installation of a statue of President Franklin Delano Roosevelt in a wheelchair at the FDR Memorial in Washington, DC. United Spinal signed a Consortium for Citizens with Disabilities letter to the Senate Judiciary Committee in support of the nomination of Vanita Gupta to be Associate Attorney General. United Spinal signed a National Coalition on Accessible Voting position statement on the For the People Act (S. 1), expressing concerns with a paper ballot mandate and asking for several changes to the bill in order to ensure that people with disabilities have the right to a private and independent vote consistent with their rights under the law. United Spinal and VetsFirst signed onto Consortium for Citizens with Disabilities priority statements for the Administration and Congress on all issues impacting the disability community including disabled veterans.

As a member of ITEM Coalition's Steering Committee, support and advocate for Medicare coverage of seat elevation and standing systems. The ITEM Coalition is engaging in multiple virtual Congressional Hill visits on this issue and has met with the Centers for Medicare and Medicaid Services along with United Spinal advocates. The Coalition submitted comments to CMS urging coverage of these features. Support expanding telehealth to Medicare beneficiaries for in the home evaluations of customized wheelchairs by clinicians. United Spinal provided comments on the Centers for Medicare and Medicaid Services proposed rule on the Medicare Coverage of Innovative Technology (MCIT) pathway and the definition of reasonable and necessary for items and services furnished under the Medicare program. United Spinal also supported concerns with the Department of Health and Human Services wanting to sunset HHS regulations after ten years unless the Dept. reviews and approves them. Raised concerns in the CMS DMEPOS final rule around: Revisions to the Healthcare Common Procedure Coding System (HCPCS) application process; Revisions to the Benefit Category Determination (BCD) and payment determination process; Adjustments to the DMEPOS fee schedule; Revisions to the in the home requirement for certain DMEPOS items; Exclusion of manual CRT wheelchairs from the Competitive Bidding Program; and Coverage of low vision aids under the Medicare program. United Spinal signed onto a CCD/Disability and Aging Collaborative letter to House and Senate leadership outlining the disability communitys priorities in a COVID relief package, namely greater funding for Medicaid home and community-based services (HCBS), an extension of the Money Follows the Person (MFP) program etc.

Support H.R. 8581/S. 4343, the Assistive Technology and Devices for Americans Study Act (Triple A Study Act). Consortium for Citizens with Disabilities - Vaccine Allocation Comments United Spinal signed onto a CCD letter to the Advisory Committee on Immunization Practices at the Centers for Disease Control and Prevention regarding vaccine allocation for the disability community. In short, we urge the committee to: 1. Include all residents of congregate facilities in Phase 1 along with long term care residents. Protect the civil rights of people with disabilities in allocation decisions 3. Ensure that the physical distribution and administration of the vaccine is accessible to people with disabilities. National Institutes of Health (NIH) United Spinal advocacy and policy staff and Resource Center staff met with NIH personnel and shared our suggestions for research priorities for the SCI/D community related to functional and quality of life issues. Advocate for the need for increased funding for Spinal Cord Injury Model Systems as well as restoring the number of federally-funded Model Systems back to 18, as it was in 2000, from the present 14. United Spinal advocacy and policy staff met with staff from the Administration for Community Living to discuss funding issues. U.S. Department of Health and Human Services (PCHAlliance) - Chronic Disease Management Landscape Analysis to Leverage Novel Technologies for Chronic Disease Management for Aging Underserved Populations United Spinal, as a member of the Personal Connected Health Alliance (PCHAlliance), supported comments to Health and Suman Services Department submitted by the Healthcare Information and Management Systems Society (HIMSS) and the PCHAlliance on the U.S. Department of Health and Human Services Request for Information - Landscape Analysis to Leverage Novel Technologies for Chronic Disease Management for Aging Underserved Populations. Over 60 national organizations representing all ages and disabilities, including United Spinal supported increased funding, $10 million for FY 2021, for the Lifespan Respite Care Program, administered by the Administration on Aging, Administration for Community Living.

Raised concerns in two letters to the Senate, led by the Bazelon Center, about the views of Judge Amy Coney Barrett regarding the Affordable Care Act, her dissent from a decision in the Seventh Circuit Court of Appeals that concluded that the Trump administrations public charge rule discriminates against people with disabilities, and her decision finding that Wisconsin didnt discriminate against children with learning disabilities by forcing them to apply for placement in school districts separately from other children and allowing their exclusion on the basis of their service needs. Discussed with U.S. Department of Housing and Urban Development the accessibility of their website. Department of Labor - Office of Disability Employment Policy Proposed Transfer of Ticket to Work Program Raised concerns regarding the Presidents budget proposal to transfer the Ticket to Work Program from the Social Security Administration to the U.S. Department of Labor. United Spinal has raised concerns with the moving of the program due to limited staff expertise on the TTW Program at DOL and other issues. Department of Health and Human Services - Office for Civil Rights United Spinal endorsed a letter to OCR, facilitated by Not Dead Yet, regarding the need for nondiscrimination regulations in organ transplants and suicide prevention. Health Innovation Alliance coalition - United Spinal signed on to a Congressional letter in support of the need to build on and clarify existing statute to modernize public health data collection, transmission, and reporting systems, through specific partnerships with expertise in the private sector, the Centers for Disease Control and Prevention (CDC) and the Department of Health and Human Services (HHS) to make necessary data available for public health officials, policy makers, and frontline providers to improve decision making, care delivery, and patient outcomes. United Spinal Association signed onto a letter led by the Leadership Conference on Civil and Human Rights to the EEOC, asking them to extend the comment period on a Notice of Proposed Rulemaking that would significantly change their conciliation procedures and potentially make it harder for people experiencing workplace discrimination from seeking redress. United Spinal signed onto a petition to the Federal Communications Commission, along with many in the disability community, (the National Disability Leadership Alliance) urging FCC to reconsider and revise its Order in this proceeding to mandate that, by July 16, 2022 - i.e., the same deadline that applies to the covered providers implementation of voice calling to 988 - wireless carriers and covered text providers, as defined in the Text-to-911 proceeding, also must implement text-to-988 capability to communicate with the National Suicide Prevention Lifeline (Lifeline) and its trained counselors, so that the benefits of the easy-to-remember and -dial 988 code will be equally available to deaf, hard-of-hearing, late-deafened, deafblind, speech-disabled, or deaf with other disabilities people in crisis and to others in crisis for whom texting is the predominant mode of mobile communication. Provided recommendations to the Community-Based Response Act, S. 4791, legislation that would provide grants to establish non-police emergency response for certain crisis interventions. The disability community is seeking to engage Congressional offices interested in this area to ensure that the disability perspective is considered in the development of such legislation. Opposed H.R. 8478, the Online Accessibility Act. This bill would significantly weaken the ADAs protections regarding website accessibility.

Support Transformation to Competitive Employment Act (H.R. 873/S. 260)

United Spinal Association was saddened and outraged by the events surrounding the death of Michael Hickson, age 46, in Austin, Texas on June 11, 2020. Mr. Hickson, a black man and father of five, was a quadriplegic and had a brain injury due to a sudden cardiac arrest while driving in 2017. United Spinal called on HHS Office for Civil Rights to investigate the death of Mr. Hickson. United Spinal signed a letter to House and Senate leadership asking that they take specific steps to make voting and voter registration processes more accessible. These include emphasizing website accessibility, protecting and expanding in-person and early voting options, requiring multiple accessible voting options, and providing funding to research, create, and test systems to improve access for voters with disabilities. United Spinal engaged with House and Senate officers in conducting a series of ADA30 briefings throughout the summer. Support Coronavirus Language Access Act (S. 4526). Was asked to speak to the Office of Representative Lisa Blunt Rochester (D-DE). Discussed disability rights issues including transportation issues, autonomous vehicles and Money Follows the Person funding which allows for states to help individuals transition out of institutional care into their communities.

Support the Senate's Emergency Broadband Connections Act (EBCA), the companion measure to H.R. 6881, and the emergency broadband provisions of the HEROES Act.

As a member of the PCHAlliance, United Spinal joined comments on the Draft Technical Brief titled Automated-Entry Patient-Generated Health Data for Chronic Conditions: The Evidence on Health Outcomes to the Agency for Health Research and Quality. Support H.R. 7663, the Protecting Access to Post-COVID-19 Telehealth Act of 2020. United Spinal provided comments for the National Institutes at Health regarding Research Topics on Disability & COVID as part of the Disability and Rehabilitation Research Coalition and discussed with NIH, United Spinal's own priorities regarding access to medical devices and supplies and physical fitness and nutrition. Support legislation to address specialty medicine physician shortages in rural areas - H.R. 5924 would encourage urologists and other specialty medicine providers to practice in rural communities by creating a student loan forgiveness program. The legislation is introduced by Rep. David McKinley (R-WV-1st). National Institutes of Health - COVID-19 Research As a member of the Disability and Rehabilitation Research Coalition, United Spinal signed onto a letter to NIH in support for Federal investment into COVID-19 Research on disability, independent living, and rehabilitation. National Institutes of Health - National Center for Medical Rehabilitation Research (NCMRR) As a member of the Disability Rehabilitation Research Consortium, United Spinal supported a letter the DRRC sent congratulating Dr. Theresa Hayes Cruz on her appointment as the permanent Director of the National Center for Medical Rehabilitation Research (NCMRR) within the National Institutes of Health. Public Health Infrastructure - Congressional Outreach United Spinal endorsed a letter to House Energy and commerce Committee leadership and Senate Health Education, Labor and Pensions leadership urging them to act quickly to modernize public health systems by establishing the network required under 319D of the Public Health Service Act. United Spinal advocacy and policy staff organized SCI Virtual Hill visits with Congressional staffers for the House Appropriations Committee - greater funding for the SCI Model Systems, including restoring them from 14 back to 18 funded Model Systems, and for continued funding for the National Neurological Conditions Surveillance System (NNCSS) at the CDC, including spinal cord injury in the NNCSS, which would allow for a national SCI registry. There is also dialogue on these two important issues with the Senate Appropriations Committee leadership. United Spinal worked with Congress to introduce a National Spinal Cord Injury Awareness Month resolution and sent out an action alert urging U.S. Senators to cosponsor the National Spinal Cord Injury Awareness Month resolution, introduced by Senators Marco Rubio (R-FL) and Tammy Baldwin (D-WI).

As a member of the Consortium for Citizens with Disabilities (CCD) Social Security Task Force, United Spinal supported a letter sent to Congressional leadership in response to proposals to include a payroll tax cut in the next COVID-19 relief package that would reduce contributions to the Social Security Trust Funds. Cutting payroll contributions does little to help low-wage essential workers, who pay a proportionate amount of payroll contributions to their low-wages. Also endorsed a similar statement. United Spinal supports a Consortium for Citizens with Disabilities statement which opposes a legislative proposal in the Presidents FY21 budget that would reduce Social Security benefits. The Presidents FY21 budget includes a legislative proposal that would change the minimum from $10 to 10% of the Social Security benefit. As a member of the Consortium for Citizens with Disabilities (CCD) Social Security Task Force, United Spinal, along with numerous other organizations, wrote to congressional leadership in response to a recent change made by the Social Security Administration (SSA) to restart Continuing Disability Reviews (CDRs) in the middle of this global pandemic. United Spinal filed a complaint with the D.C. U.S. District Court against the Social Security Administration for the alleged unlawful wet ink signature requirements imposed on persons with disabilities in connection with applications for certain disability benefits of the Social Security Administration (SSA). We believe the requirements interfere with the ability to pursue rights to federal disability benefits, making a cumbersome application process even more difficult. US Department of Transportation (DOT) - National Highway Traffic Safety Administration Automated Vehicle Transparency and Engagement for Safe Testing (TEST) United Spinal submitted comments suggesting the centralized database of the AV TEST Initiative from ADS developers and local authorities be elevated to the DOTs Office of the Secretary, that accessibility and inclusion criteria be included, that information submissions be required not voluntary. United Spinal signed onto comments We acknowledge USDOTs stated commitment to improving access and mobility for people with disabilities and older adults in AV 3.0 and AV 4.0, and during the Departments recent celebration in honor of the ADAs 30th Anniversary. We urge NHTSA to prioritize access and safety for all passengers and road users. Including requirements to ensure accessibility and engage with the disability and other underserved communities would be a reminder to all stakeholders of USDOTs commitment to uphold the promise of greater mobility and safety for all.

Support Healthy Flights Act of 2020 (H.R. 7867).

District of Columbia Homeland Security Emergency Management Agency - Emergency Management United Spinal and DC CIL litigation against the District. United Spinal advocacy and policy staff participate in bi-weekly calls with DC HSEMA and DC Office of Disability Rights on DCs COVID-19 response. DCHSEMA has requested a 2nd delay in starting the litigation deliverables again (1st delay requested due to COVID-19 pandemic).

Consortium for Citizens with Disabilities (CCD) Technology and Telecommunications Task Force Congressional Appropriations request for Funding the AT Act at $45 million United Spinal, as a member of the Consortium for Citizens with Disabilities Technology and Telecommunications Task Force along with numerous other disability organizations, sent a letter to Congressional appropriators in support for the inclusion of $45 million in the FY 2021 House Labor, Health and Human Services and Education Appropriations (LHHS) bill for the Assistive Technology (AT) Act Programs. Funding provided through the AT Act supports programs that assure people with disabilities have access to and acquisition of the assistive technology devices and services they need to live, work, and attend school in their communities.

United Spinal and American Council of the Blind and numerous other organizations that actively represent and work to advance civil rights for people with disabilities wrote to Congressional leadership to express concern that the CARES Act, H.R. 748, fails to reinforce to states that they must ensure equal access to Federal elections for voters with disabilities when administering funds pursuant to this Act.

Social Security Administration and Veterans beneficiaries - COVID-19 Consortium for Citizens with Disabilities (CCD) Social Security Task Force United Spinal, along with numerous other disability organizations and are members and allies of the Consortium for Citizens with Disabilities (CCD), wrote in response to the recently announced deadline for Social Security beneficiaries to file taxes or utilize the new web tool to claim economic impact payments for child dependents under the age of 17 or wait until 2021 to claim the payments. We are extremely concerned by the unexpected announcement of this very short deadline. Announcing a Wednesday deadline on a Monday afternoon is simply put, not enough time. Media reports that the deadline is noon on Wednesday (with the time zone unspecified) add to the urgency and the confusion. Social Security Administration - COVID-19 United Spinal, as a member of the Consortium for Citizens with Disabilities (CCD) Social Security Task Force supported a letter the Task Forces Co-Chairs sent the Social Security Commissioner urging further response to the COVID19 pandemic. Thank you for all the work you and your staff are doing to adapt the Social Security Administrations activities and keep the public informed during these challenging times. We, the undersigned co-chairs of the Consortium for Citizens with Disabilities Social Security Task Force, realize this is an enormous task, but one that is vital to the nearly 70 million Americans who receive Social Security benefits and the millions more who use SSAs other services. We appreciate your efforts to make automatic economic impact payments for recipients of SSI and Title II benefits. We encourage you to continue working with the Treasury Department so that SSI and Title II beneficiaries who use the IRS non-filer portal (for example, those with dependent children) can elect to have their stimulus payments sent to their Direct Express cards. Consortium for Citizens with Disabilities (CCD) letter to Internal Revenue Service (IRS) on Electronic Impact Payments United Spinal, along with numerous other organizations, and as a member of the Consortium for Citizens with Disabilities (CCD) submitted a letter to the IRS detailing our concerns with how the non-filer tool has been functioning, how Electronic Impact Payments have been and will be issued, and reiterating our position from last month that we believe that there should not be a deadline for filing for dependent credits.

District of Columbia Homeland Security Emergency Management Agency - Emergency Management United Spinal and DC CIL litigation against the District United Spinal, along with co-plaintiff DC Center for Independent Living, sent a letter to DC Mayor Muriel Bowser outlining several areas of transportation in which the DC government should improve its response to COVID-19 for people with disabilities. United Spinal advocacy and policy staff participate, ask questions of the District, in weekly COVID-19 calls with DC HSEMA and DC Office of Disability Rights on DCs COVID-19 response. United Spinal advocacy and policy staff provide comments to quarterly reports and additional documentation related to the emergency response including a United Spinal/DC CIL letter to DC Mayor Bowser urging for improved transportation service for people with disabilities. United Spinal advocacy and policy staff participated in a virtual town hall on DCs upcoming revised Olmstead community integration plan to support people with disabilities living in the community.

United Spinal endorsed a letter by HIMSS and PCHAlliance which expressed tremendous support for the $200 million in additional funding to enable the provision of telehealth under the Coronavirus Aid, Relief, and Economic Security (CARES) Act, and use those funds to establish the COVID-19 Telehealth Program, in addition to the $100 million for the Connected Care Pilot Program. Draft 2020-2025 Federal Health IT Strategic Plan As a member of the PCHAlliance, United Spinal supported a letter in which the Healthcare Information and Management Systems Society (HIMSS) and the Personal Connected Health Alliance (PCHAlliance) provided written comments in response to the Draft 2020-2025 Federal Health IT Strategic Plan, which was published January 15, 2020. HIMSS and PCHAlliance suggest there is considerable value in the Strategic Plan placing greater emphasis on advancing health information infrastructure that enables individuals to take more control over their personal health and wellness through access to their personal health data and digital tools that educate and guide personal health decisions that support health and wellness. 2020 Communications and Video Accessibility Act - Biannual Report to Congress United Spinal supported comments submitted by the Co-Chairs of the Consortium for Citizens with Disabilities Technology and Telecommunications Task Force about the Federal Communications Commission (Commission) Public Notice seeking input on the 2020 Biannual report to Congress required by the 21st Century Communications and Video Accessibility Act (CVAA)( PL 111-260)(DA 20-216). For nearly ten years, we have worked to codify and implement the CVAA. We believe the CVAA has largely increased accessibility for people with disabilities. The increased amounts of accessible wireless devices, video content and equipment is directly related to the CVAA requirements and the collaboration between the Commission, industry, and the disability community. As we near the tenth anniversary of the CVAA, we remain committed to protect the requirements of the CVAA and to ensure the most accessible technology and telecommunications experience for all consumers.

United Spinal endorsed comments from the Consortium of Citizens with Disabilities Transportation Task Force to the Department of Transportation on the agencys Design Challenge Initiative, highlighting recommendations in accessible design. United Spinal also sent in its own comments. United Spinal, as a member of the Consortium for Citizens with Disabilities (CCD) Transportation Task Force, supported a letter to the U.S. House and U.S. Senate submitted by the Task Forces Co-Chairs urging increased funding for Department of Transportation (DOT) programs impacting people with disabilities in the FY 2021 Transportation, Housing and Urban Development, and Related Agencies (T-HUD) appropriations bill. United Spinal, as a member of the Consortium for Citizens with Disabilities (CCD) Transportation Task, supported a Task Force Co-Chairs letter to House leadership to urge amending mask and protective face covering requirements for all passengers in transit, Amtrak and air travel in in the HEROES Act, and to take into consideration the needs of people with disabilities. United Spinal supports the Disability Access to Transportation Act, H.R 6248. U.S. Department of Transportation - Autonomous Vehicles United Spinal signed onto a letter sent to the Department of Transportation offering comments on the National Highway Traffic Safety Administrations proposed rulemaking on Occupant Protection for Automated Driving Systems. This proposed rulemaking seeks to update safety standards to take into account the inherent differences between typical road-worthy vehicles and autonomous vehicles. The letter offers several suggestions for incorporating the needs of people with disabilities. Comments Concerning Occupant Protection for Automated Driving Systems Docket Number: NHTSA-2020-0014 United Spinal, along with numerous disability organizations, as members of the Consortium for Citizens with Disabilities (CCD) Transportation Task submitted comments in response to the National Highway Traffic Safety Administration (NHTSA) request for comments regarding Occupant Protection for Automated Driving Systems (ADSs). The letter read in part: The promise and safety of ADS-equipped vehicles will only be realized if vehicles equipped with ADS and without steering wheels are fully accessible, the Americans with Disabilities Act upheld, and safety elements take into account the needs of people with disabilities. We view this time of innovation and reimaging as an opportunity to not only maintain the current level of protection and performance offered by the 200 Series Federal Motor Vehicle Safety Standards (FMVSS), but also to improve the levels of safety and accessibility that they afford. Surface Transportation Legislative Proposals and PrioritiesUnited Spinal, along with numerous disability organizations, as members of the Consortium for Citizens with Disabilities (CCD) Transportation Task developed Surface Transportation Legislative Proposals and Priorities. Transportation is necessary for 57 million people with disabilities in the U.S. to contribute to and participate in their communities, support and spend time with family and friends, and live their lives to the fullest; however, significant barriers to accessible, equitable, reliable transportation remain across modes. Priorities cited include: Assess and increase the availability of fully-accessible, integrated transit and on-demand mobility services. Assess and address continued discrimination in transit and on-demand mobility services through partnerships and public accommodation and other issues.

United Spinal Association helped draft and endorsed principles on face masks/coverings, social distancing and security screenings for people with disabilities in light of COVID-19 and sent to the Transportation Security Administration. "Considerations for Screening Passengers with Disabilities During the Coronavirus Pandemic."

United Spinal supports H.R. 2293 introduced by Representatives John Larson and Lee Zeldin. Protecting Access to Wheelchairs Act.Centers for Medicare and Medicaid Services - standing features and seat elevation in wheelchairs United Spinal Association, as a member of the ITEM Coalition's Steering Committee, engaging with Congress and the Centers for Medicare and Medicaid Services on ensuring Medicare coverage for seat elevation and standing feature components of wheelchairs.

Social Security Administration - Continuing Disability Reviews We agree that the Social Security Administration (SSA) is required by Congress to perform periodic Continuing Disability Reviews (CDR) on recipients of Supplemental Security Income (SSI) or Title II Social Security benefits awarded on the basis of disability. We also agree with SSA that no changes to the current Medical Improvement Review Standard are appropriate. However, we have significant concerns about SSAs proposal to perform more CDRs, more frequently. Given a lack of data or evidence to change the CDR process, we found the proposed rule so vague commenters cannot do so in a meaningful way. We urge SSA to withdraw this rule since it fails to comply with the Administrative Procedure Act. United Spinal submitted its own comments and endorsed comments of the Consortium for Citizens with Disabilities Social Security Task Force. Support SSI Restoration Act - H.R. 4280/S. 2753. Support the Disability Employment Incentive Act, H.R 3992/S. 255. Support the ABLE Age Adjustment Act. - S. 651/H.R. 1814. Support H.R 4280/S. 2753 - Supplemental Security Income (SSI) Restoration Act. Support Senior Care Act - H.R. 5429/S. 3010.

Administration for Community Living - Rehabilitation Research and Training Center (RRTC) Programs RRTC programs conduct coordinated, integrated, and advanced programs of research, training, and information dissemination in topical areas that are specified by the Department of Health and Human Services National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). RRTCs conduct research to improve rehabilitation methodology and service delivery systems; improve health and functioning; and promote employment, independent living, family support, and economic and social self-sufficiency for individuals with disabilities. United Spinal is subcontracting with Medstar Washington Hospital on an educational grant on the issue of Neurogenic Lower Urinary Tract Dysfunction (NLUTD) which is a term used for neurogenic bladder. U.S. Food & Drug Administration - Public Workshop - Evolving Role of Artificial Intelligence in Radiological Imaging United Spinal was asked to participate in a consumer panel representing the North American Spinal Cord Injury Consortium to discuss the challenges manual and power wheelchair users face when using medical devices at home. United Spinal has been fully engaged in Congressional and grassroots advocacy related to COVID-19 relief for the disability community, with continual discussions with Congressional offices, and Consortium for Citizens with Disabilities advocacy, highlighting United Spinal priorities, engaging in adding Congressional signatories to letters to Vice President Mike Pence, head of the White House Coronavirus Task Force on the needs of the disability community regarding accessible communications, caregiving and supplies. Coronavirus Aid, Relief, and Economic Security Act, the CARES Act, S. 3548/H.R. 748. The SCI/D community achieved important priorities in this bill including: increased funding for Aging and Disability Resource Centers, Administration for Community Living Aging and Disability Services Programs, and an extension of Money Follows the Person funding through November 30, 2020 and other provisions Support S.3544/H.R. 6305 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 H.R. 6074, the Coronavirus Preparedness and Response Supplemental Appropriations Act, 2020, provided the Secretary of Health and Human Services (HHS) with limited waiver authority over Medicare telehealth restrictions during the 2019 Coronavirus public health emergency. While we applaud your efforts to bring these safe and cost-effective services to additional Medicare beneficiaries who are otherwise ineligible to receive telehealth benefits, we believe additional changes are needed to further reduce barriers to timely care, decrease risk of transmission for health care workers and patients, and maximize the benefits of a connected health ecosystem during this public health emergency. 1)Modify the qualified provider section of the to remove administratively cumbersome and overly restrictive barriers to telehealth delivery of care. 2)Provide secretarial authority to add Medicare Part B coverage for remote physiological monitoring for those testing positive for COVID-19 during the public health emergency. Lifespan Respite Care Program Action Alert United Spinal advocacy and policy staff created and distributed an action alert in support of a Congressional appropriations letter seeking $10 million in funding for the Lifespan Respite Care Program in fiscal year 2021. Support the Accessible Voting Act (S. 3206). Congressional Disability Policy Accountability Project United Spinal formally proposed and received support from other disability organizations for the Congressional Disability Policy Accountability Project. The goal of this project is to increase competency in disability policy issues among Congressional staff by ensuring that each Congressional office assigns disability issues to the issues portfolio of at least one policy staffer in that office. Engaged with Congressional House offices on this issue. Support "Recognizing the Role of Direct Support Professionals Act (S. 3369)/(H.R. 6045). Worked with the National Multiple Sclerosis Society on the Real Emergency Access for Aging and Disability Inclusion (REAADI), and Disaster Relief Medicaid Act (DRMA); access to MS medications and increased funding for Congressionally-Directed Medical Research Programs focused on MS research. Brain Injury Awareness Day - Congressional Briefing United Spinal advocacy and policy staff attended a Brain Injury Awareness Day Congressional Briefing. The SCI/D community and the traumatic brain injury (TBI) community are working together on reviewing avenues of funding and the provision of rehab and program expertise. Health Innovation Alliance United Spinal signed onto a letter to Congress in support of an updated Federal Data framework to allow for interoperability with health IT, artificial intelligence and portable medical devices. Coalition to Preserve Rehabilitation Department of Health and Human Services (HHS) Notice of Benefit and Payment Parameters As a Steering Committee member of CPR, United Spinal signed onto a comment letter in response to HHS proposed rule focusing on benefit and payment provisions focusing on Rehabilitative Services and Devices protections under the ACA; Changes to the Automatic Enrollment Process under the Proposed Rule and Expanding Special Enrollment Periods under the Proposed Rule. As a member of the Disability Rehabilitation and Research Coalition, United Spinal commented on NIHs framework for the strategic plan, which identifies cross-cutting themes and three major objectives for the agency - specifically related to disability and rehabilitation research. Signed onto a CPR/ITEM Coalition letter to Congress for the exemption for non-invasive ventilators (NIVs) in the next round of the Medicare competitive bidding program scheduled to begin on January 1, 2021. United Spinal also send a similar letter to Congress on behalf of our own Access and Care Coalition as well as onto a ResMed and ALS Association facilitated letter to Congress. Signed onto an AAPD letter to Congress on the priorities of the disability community during this time of the COVID-19 pandemic. Public Comments on Notice of Benefit and Payment Parameters for 2021 (RIN 0938-AT98, CMS-9916-P) United Spinal, as a member of the Coalition to Preserve Rehabilitation (CPR) commented on the Department of Health and Human Services (HHS) proposed rule, Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 20211 (the Proposed Rule). CPR is a coalition of national consumer, clinician, and membership organizations that advocate for policies to ensure access to rehabilitative care so that individuals with injuries, illnesses, disabilities, and chronic conditions may regain and/or maintain their maximum level of health and independent function. The Proposed Rule sets forth benefit and payment parameters, changes the automatic enrollment process, expands special enrollment periods, and sets out many other policies implementing the Patient Protection and Affordable Care Act (ACA). This comment letter will focus on key proposed provisions that specifically impact enrollees in need of medical rehabilitation and post-acute care. Signed on to ACLU Coalition letter to HHS OCR re: Withholding of Life-Sustaining Treatment.

Support Sec. 9 of the CONNECT for Health Act of 2019 (S. 2741/H.R. 4932) in the upcoming COVID-19 supplemental legislation Supported submitted comments to the Federal Communications Commission regarding Docket Nos. 11-42, 09-197, 96-45, 17-287 EMERGENCY REQUEST FOR INCREASED LIFELINE SUPPORT DURING THE COVID-19 CRISIS. The Chairmans Keep Americans Connected Pledge and Federal Communications Commissions (FCC or Commission) decision to temporarily waive recertification and reverification requirements for existing Lifeline customers were laudable first steps in the early days of the crisis, but more is needed as the extent and length of the emergency becomes evident. United Spinal provided edits to a Health Innovation Alliance letter to Congress on interoperability; medical devices and access to care for people with disabilities. The letter outlined a mechanism to create a modern regulatory framework that governs health data privacy and interoperability.

DC Government Homeland Security and Management Agency As one of two plaintiffs, (United Spinal Association and the DC Center for Independent Living) to the lawsuit against the District Government for failing to provide adequate emergency management and preparedness services for people with disabilities. In the month of January, United Spinal provided comments to the attorneys who filed our case, Disability Rights Advocates, on sheltering needs and wayfinding analysis and submitted comments on their biannual report. Disability Community Advisory Group (DCAG) - 3rd quarterly meeting As co-plaintiffs in the United Spinal Association, et al. v. District of Columbia litigation settlement with the District Government, the 3rd quarterly meeting took place to address: the Districts COVID-19 response as well as components of the settlement including: Emergency Public Communications; High-Rise Task Force progress (gap analysis due August 3, 2020); PECO plan progress (PECO plan due August 3, 2020); Emergency Sheltering and Power and Accessible Transportation for Evacuation. Also beginning in March, there have been weekly COVID-19 check-in conference calls with the District Government.

Support S. 978 - Work Opportunity Tax Credit and Jobs Act (Support renewal of the Work Opportunity Tax Credit). Support SSI Restoration Act - H.R. 4280/S. 2753. Support the Disability Employment Incentive Act, H.R 3992/S. 255. Support the ABLE Age Adjustment Act. - S. 651/H.R. 1814. Support H.R 4280/S. 2753 - Supplemental Security Income (SSI) Restoration Act. Support Senior Care Act - H.R. 5429/S. 3010.

U.S. Food and Drug Administration (FDA) Scientific Data and Information About Products Containing Cannabis or Cannabis-Derived Compounds; Public Hearing; Request for Comments United Spinal provided comments on the FDAs Public Hearing for Scientific Data and Information about Products Containing Cannabis or Cannabis-Derived Compounds urging for lifting research restrictions on cannabis. The letter read in part: As more states move forward with medical and recreational marijuana legalization, it is critical that Congress take action to protect their right to do so. For this reason, United Spinal supports the passage of the Strengthening the Tenth Amendment Through Entrusting States (STATES) Act, which ensures that each state has the right to determine for itself the best approach to marijuana within its borders. This bill extends these protections to Washington, DC, U.S. territories and contains common-sense guidance to ensure states are regulating in a rational and safe manner. We also support H.R. 712/S.179 known as The VA Medicinal Cannabis Research Act of 2019 which directs the Secretary of Veterans Affairs to carry out a clinical trial of the effects of cannabis on certain health outcomes of adults with chronic pain and post-traumatic stress disorder. We also support H.R. 601, The Medical Cannabis Research Act which increases the number of manufacturers registered under the Controlled Substances Act to manufacture cannabis for legitimate research purposes and authorizes health care increases the number of manufacturers registered under providers of the Department of Veterans Affairs to provide recommendations to veterans regarding participation in federally approved cannabis clinical trials.

H.R. 3208/S. 1755: Real Emergency Access for Aging and Disability Inclusion for Disasters Act Signed onto letter of support as part of the Coalition of Citizens with Disabilities in support of the REAADI Act which aims to ensure that older adults and individuals with disabilities are prepared for disasters, and for other purposes. United Spinal supports Disaster Relief Medicaid Act - S. 1754/H.R. 3215.

United Spinal, PVA, Christopher and Dana Reeve Foundation and others, met with a new team at the Federal Emergency Management Agency to discuss improved dialogue with the disability community and raised questions about training of FEMA staff on disability issues.

United Spinal supports S. 651/H.R 1814, the ABLE Age Adjustment Act and engaged in Hill meetings.

Support Disability Integration Act - HR. 555/S. 117. United Spinal staff attended and gave public comment before the U.S. Commission on Civil Rights briefing on the 14(c) program, which allows certain employers to run sheltered workshops for employees with disabilities and pay them less than the minimum wage. United Spinal supports the Transformation to Competitive Employment Act (S. 260/H.R 873), which is legislation that would responsibly end the 14(c) program. Submitted comment letter to Sen. Udall and Rep. Lowenthal opposing their ban on single-use plastic straws in all retail and service establishments. Single-use plastic straws are used by members of the disability community (those who do not have use of their hands) to drink. Support Domestic Workers Bill of Rights Act - S. 2112/H.R 3760

United Spinal signed onto a Leadership Council of Aging Organizations letter to Congressional leadership urging them to reauthorize the Older Americans Act (OAA). The OAA is the authorizing vehicle for a number of important programs, including those focused on caregiving. United Spinal was invited to attend a meeting at the CDC to discuss and provide input on SCI registries. United Spinal had signed onto House and Senate Congressional letters in support of the Prescription Drug Pricing Reduction Act, which includes provisions of increased support for low-income beneficiaries and caps on out-of-pocket costs and supports preservation and improvement of the Medicare Rebate Drug Program. Personal Connected Health Alliance (United Spinal is a member) Committee on Ways & Means Rural and Underserved Communities Health Task Force - the Committees forum to convene Members and experts to discuss the delivery and financing of health care and related social determinants in urban and rural underserved areas and identify strategies to address the challenges that contribute to health inequities, issued a Request for Information (RFI) soliciting input on priority topics that affect health status and outcomes for consideration and discussion in future Member sessions of the Task Force. United Spinal supported increased Federal Government funding at NIH. United Spinal signed onto House and Senate letters, in support of extending the 7.5% threshold for the medical expense deduction, S. 110, The Medical Expense Savings Act, introduced by Sen. Susan Collins (R-ME) and a similar bill in the House, H.R. 2073, introduced by Rep. Katie Porter (D- CA 45). National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Medstar Health Research Institute MHRI and United Spinal Association - United Spinal Association finalized an agreement in December with MHRI as a subcontracting partnership to NIDILIRRs Rehabilitation Research and Training Center (RRTC) Program which conducts research to improve rehabilitation methodology and service delivery systems; improves health and functioning; and promotes employment, independent living, family support, and economic and social self-sufficiency for individuals with disabilities. United Spinal will be assisting with recruiting participants for research projects and reviewing educational material: Rehabilitation and Research Training Center on Health and Function for People with Physical Disabilities focused on Neurogenic Lower Urinary Tract Dysfunction.

Discussed ADA compliance with AMTRAK. Sent comments on accessible autonomous vehicles to House and Senate. Discussed TNC Accountability, public transits, paratransit and ridesharing with Congressional House staffers. Advocated at DOT Access and Mobility for All Summit -for accessible road transportation for people with disabilities Submitted comments to U.S. Access Board regarding non-binding advisory guidelines for wheelchairs used within aircraft cabins. United Spinal provided comments to eh GAO on mobility disabilities and airplane restrooms for an upcoming GAO report.

United Spinal, along with other members of the Consortium for Citizens with Disabilities, met with Jennifer Sheehy, Deputy Assistant Secretary, ODEP, and her team, to discuss the agencys efforts on its 14(c) online dialogue as well as its efforts on providing resources to states and providers to move towards competitive integrated employment and away from holding certificates to provide subminimum wage [14(c) certificates] to people with disabilities. United Spinal, along with numerous other disability organizations as members of the Consortium for Citizens with Disabilities (CCD) Long Term Services and Supports (LTSS) Task Force, signed onto a letter to Senator Kamala Harris (D-CA) and Rep. Pramila Jayapal (D-WA-7) supporting the principles that inform the Domestic Workers Bill of Rights Act of 2019 without supporting the bill itself. (S. 2112/H.R. 3760). United Spinal policy endorsed Secure the Secure Work Coalitions Statement in support of the Disability Employment Incentive Act H.R. 3992, introduced by Representatives Brian Fitzpatrick (D-CA-1st) and Josh Harder (R-PA-10th).

United Spinal and DC Center for Independent Living met with DC HSEMA for an after-action meeting following the launch, at the end of September, of the D.C. Disability Community Advisory Group and of the implementation of the litigation settlement on emergency preparedness for the disability community in the District. United Spinal attended a mediation meeting, with plaintiff attorneys to resolve the issue of the hiring of a subject matter expert (SME) on high-rise evacuation as part of the litigation settlement.

As a member of the Personal Connected Health Alliance (PCHAlliance), United Spinal advocacy and policy staff assisted in crafting a letter in response to the FCCs Promoting Telehealth for Low-Income Consumers Notice of Proposed Rulemaking WC Docket No. 18-213.

United Spinal, as a member of the DRRC, supported a DRRC request to meet with HHS Secretary Alex Azar to discuss the implementation of the government-wide strategic plan on disability, independent living, and rehabilitation research. United Spinal signed onto a letter to House and Senate leadership in support of the permanent repeal of the medical device tax which has a direct impact on access to critical medical devices for individuals with disabilities and chronic illnesses. National Institutes of Health (NIH) - Request for Information - SCI 2020 Conference United Spinals response included the following main points: United Spinal advocates for improved care of SCI patients in the acute trauma setting so that individuals with SCI are transported to the appropriate rehabilitation facilities, ideally, to have access to maximum rehabilitation potential and functional mobility outcomes. United Spinal advocates for SCI education and SCI expertise throughout the rehab continuum. The essential role of assistive technology to improve functional recovery. The importance of adaptive fitness and nutrition and adaptive and accessible technologies. Regarding the consumer voice in the research space, it is incumbent upon all stakeholders in this space to work collaboratively and it is critical that there is meaningful consumer engagement throughout the research continuum. United Spinal is in dialogue with Congress on the need to designate Spinal Cord Injury Centers of Excellence As a member of the Coalition to Preserve Rehabilitation Steering Committee, United Spinal signed onto a letter to HHS in support of nondiscrimination protections: RIN 0945-AA11; Nondiscrimination in Health and Health Education Programs or Activities; and in a letter to CMS, Patients over Paperwork raised our concerns in a response to CMS RFI on reducing administrative burden in Medicare and Medicaid. As a Steering Committee member of the ITEM Coalition, United Spinal also signed on to this letter. United Spinal advocacy and policy staff played a leading role in the passage of S. Res. 329, a resolution designating September 2019 as National Spinal Cord Injury Awareness Month. Senator Marco Rubio (R-FL) and Senator Tammy Baldwin (D-WI) were the co-leads on the resolution.

United Spinal, along with other members of the Consortium for Citizens with Disabilities, met with Jennifer Sheehy, Deputy Assistant Secretary, ODEP, and her team, to discuss the agencys efforts on its 14(c) online dialogue as well as its efforts on providing resources to states and providers to move towards competitive integrated employment and away from holding certificates to provide subminimum wage [14(c) certificates] to people with disabilities. United Spinal, along with numerous other disability organizations as members of the Consortium for Citizens with Disabilities (CCD) Long Term Services and Supports (LTSS) Task Force, signed onto a letter to Senator Kamala Harris (D-CA) and Rep. Pramila Jayapal (D-WA-7) supporting the principles that inform the Domestic Workers Bill of Rights Act of 2019 without supporting the bill itself. (S. 2112/H.R. 3760). United Spinal policy endorsed Secure the Secure Work Coalitions Statement in support of the Disability Employment Incentive Act H.R. 3992, introduced by Representatives Brian Fitzpatrick (D-CA-1st) and Josh Harder (R-PA-10th).

United Spinal supports S. 651/H.R 1814, the ABLE Age Adjustment Act and engaged in Hill meetings.

United Spinal and the DC Center for Independent Living as plaintiffs in litigation against the Government of the District of Columbia attended and presented at the launch of the DC Homeland Security and Emergency Management Agency Disability Integration Initiative at Gallaudet University. The litigation was completed and signed by both parties earlier in the year. Both United Spinal and the DC CIL are co-chairs of the DC Disability Community Advisory Group which include representatives of the disability community representing individuals who are deaf, blind, who have cognitive and intellectual disabilities etc. DC HSEMA is engaging in workgroup activity, as required by the settlement, in the following areas: post-emergency canvassing operations, communications, sheltering, accessible transportation, high-rise evacuation etc.

On July 25, 2019, United Spinal, and numerous other disability organizations, as members of the Consortium for Citizens with Disabilities (CCD) sent a letter to all members of Congress in recognition of the 29th anniversary of the Americans with Disabilities Act (ADA). The American Civil Liberties Union, Center for Public Representation, and sixteen other national disability advocacy groups, including United Spinal Association, represented by the global law firm Latham & Watkins filed an amicus brief in support of litigation to stop the U.S. Department of Homeland Security (DHS) from implementing its new public charge rule. United Spinal signed a letter addressed to Representatives Jamie Raskin (D-MD) and Chip Roy (R-TX), Chairman and Ranking Member of the House Oversight Subcommittee on Civil Rights and Civil Liberties, thanking the Subcommittee for holding a hearing on the revocation of medical deferred action for critically ill children. The letter urges United States Citizenship and Immigration Services (USCIS) to reverse its decision to stop considering visa applications based on medical deferred action for people who have a serious health condition, and for Congress to make the program permanent. The subcommittee hearing was well attended along with representatives from other disability organizations such as Disability Rights Education and Defense Fund. Due to some strong advocacy from the disability community, USCIS did rescind its decision later the same month.

U.S. Food and Drug Administration (FDA) Scientific Data and Information About Products Containing Cannabis or Cannabis-Derived Compounds; Public Hearing; Request for Comments United Spinal provided comments on the FDAs Public Hearing for Scientific Data and Information about Products Containing Cannabis or Cannabis-Derived Compounds urging for lifting research restrictions on cannabis. The letter read in part: As more states move forward with medical and recreational marijuana legalization, it is critical that Congress take action to protect their right to do so. For this reason, United Spinal supports the passage of the Strengthening the Tenth Amendment Through Entrusting States (STATES) Act, which ensures that each state has the right to determine for itself the best approach to marijuana within its borders. This bill extends these protections to Washington, DC, U.S. territories and contains common-sense guidance to ensure states are regulating in a rational and safe manner. We also support H.R. 712/S.179 known as The VA Medicinal Cannabis Research Act of 2019 which directs the Secretary of Veterans Affairs to carry out a clinical trial of the effects of cannabis on certain health outcomes of adults with chronic pain and post-traumatic stress disorder. We also support H.R. 601, The Medical Cannabis Research Act which increases the number of manufacturers registered under the Controlled Substances Act to manufacture cannabis for legitimate research purposes and authorizes health care increases the number of manufacturers registered under providers of the Department of Veterans Affairs to provide recommendations to veterans regarding participation in federally approved cannabis clinical trials.

United Spinal supports H.R. 2293 introduced by Representatives John Larson and Lee Zeldin - Protecting Access to Wheelchairs Act. United Spinal supports S. 1223 introduced by Senators Bob Casey and Rob Portman. - Protecting Beneficiary Access to Complex Rehab Technology Act of 2019. United Spinal supports HR 2408 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2019. As a member of the ITEM Coalition Steering Committee, United Spinal, Christopher & Dana Reeve Foundation, Amputee Coalition, PVA and clinicians, SCI physicians and advocates met with Liz Richter, Deputy Director, Center for Medicare at CMS and others to discuss the need for standing feature and seat elevation components to be covered by Medicare. Medicaid Program; Methods for Assuring Access to Covered Medicaid Services - Rescission, RIN:0938-AT41 Adequate access to services under Medicaid is especially important to people with disabilities. CCD has commented on numerous iterations of this rule, including the original notice of proposed rulemaking in 2011,1 final rule with comment period in 2016,2 request for information in 2016,3 and proposed rulemaking in 2018.4 People with disabilities rely on Medicaid for access to basic health care services and for services that ensure their functioning, independence, and well-being, including: nursing and personal care services, specialized therapies, intensive mental health services, special education services, and other needed services that are unavailable through other insurance. Access to these services is a matter of life, death, and independence for the millions of people with disabilities on Medicaid and the protections provided by the equal access statute are of particular importance to our community. United Spinal signed onto the Durable Medical Equipment Prosthetics, Orthotics and Supplies CY 2020 Proposed Rule to raise concerns about pricing calculated from the 1980s on new technologies and new codes for medical equipment and prosthetics and orthotics which hinders companies from providing newer equipment or investing in developing new technologies and prevents consumer access to reasonably priced products. United Spinal signed onto a Congressional House letter in support of H.R. 3107, Improving Seniors Timely Access to Care Act which protects patients from unnecessary delays in care by supporting and seeks to streamline and standardize prior authorization under the Medicare Advantage program. United Spinal, as a member of the Personal Connected Health Alliance, supports a letter submitted to the Centers for Medicare and Medicaid Services. Medicare and Medicaid Programs; CY 2020 Home Health Prospective Payment System Rate Update; Home Health Value-Based Purchasing Model; Home Health Quality Reporting Requirements; and Home Infusion Therapy Requirements; Proposed Rule. The letter read in part: Our comments focus on important connected care aspects of the home health prospective payment system and the home infusion therapy benefit, and we offer our comments to ensure efficacious, effective, and non-duplicative coverage for remote patient monitoring. United Spinal also commented as a member of ITEM Coalition's Steering Committee on (CMS-1711-P) Medicare and Medicaid Programs; CY 2020 Home Health Prospective Payment System Rate Update; Home Health Value-Based Purchasing Model; Home Health Quality Reporting Requirements; and Home Infusion Therapy Requirements The Proposed Rule updates the home health prospective payment system (HH PPS) payment rates and implements the transition in the unit of payment from a 60-day episode of care to a 30-day episode of care, as required by the Bipartisan Budget Act of 2018. The Proposed Rule also implements the Patient-Driven Groupings Model (PDGM), proposed payment rate changes for home infusion therapy temporary transitional payments, and adjustments to the home infusion therapy benefit, and proposes to phase out the Request for Anticipated Payment (RAP). The Proposed Rule would also change the Home Health Value-Based Purchasing Model (HH VBP) and the Home Health Quality Reporting Program (HH QRP), among other things. Although some components of CMSs new home health payment reform were finalized last year, we continue to have concerns regarding the implementation of and rationale behind the new payment methodology. Our comments focussed largely on the proposed implementation of the PDGM, the proposed authorization of therapist assistants to provide maintenance therapy, and the impact of these proposals on patients receiving rehabilitative care in the home health setting.

H.R. 3208/S. 1755: Real Emergency Access for Aging and Disability Inclusion for Disasters Act Signed onto letter of support as part of the Coalition of Citizens with Disabilities in support of the REAADI Act which aims to ensure that older adults and individuals with disabilities are prepared for disasters, and for other purposes. United Spinal supports Disaster Relief Medicaid Act - S. 1754/H.R. 3215.

Discussed ADA compliance in AMTRAK railcars with AMTRAK. Sent comments on accessible autonomous vehicles to House and Senate. Discussed TNC Accountability with Congressional House staffers. U.S. Department of Transportation (DOT) Secretary Elaine L. Chao announced the formation of the Air Carrier Access Act Advisory Committee (ACAA Advisory Committee) and the appointment of 19 members, including Nicholas LiBassi, Vice President, Partnership Expansion, United Spinal Association, as representative of national disability organizations and James Sinocchi of JP Morgan Chase. The ACAA Advisory Committee is being established pursuant to the FAA Reauthorization Act of 2018 (FAA Act). United Spinal staff attended Transportation Security Administration (TSA) Annual Disability & Multicultural Coalition Conference 2019 to discuss agency outreach to the disability community. U.S. Access Board Released Voluntary Guidelines for Onboard Wheelchairs United Spinal is advocating for increased accessibility in airline travel in relation to the U.S. Access Board releasing for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight. United Spinal Policy staff monitored a hearing the Board held on September 12 on the guidelines. The Board notice read in part, These onboard wheelchairs are provided by air carriers as a means of facilitating the transfer of passengers with disabilities to aircraft lavatories since personal wheelchairs cannot be used in the cabin. The Department of Transportation (DOT) has expressed its intention to supplement its regulations under the Air Carrier Access Act (ACAA) to include performance standards for onboard wheelchairs on covered aircraft. The Board is developing these non-binding guidelines as technical assistance to air carriers and manufacturers of onboard wheelchairs by providing an example of how to meet DOT's planned performance standards. United Spinal will be submitting comments to the U.S. Access Board.

United Spinal, as member of the Personal Connected Health Alliance (PCHAlliance), joined in comments PCHAlliance and the Healthcare Information and Management Systems Society (HIMSS) submitted to the US Food and Drug Administration in response to the Discussion Paper and Request for Feedback entitled, Proposed Regulatory Framework for Modifications to Artificial Intelligence/Machine Learning (AI/ML)-Based Software as a Medical Device (SaMD), (hereinafter Proposed Framework). The letter read in part: We recommend using other industries who have been involved in the discussions and regulatory review of AI/ML, as an example for the health care industry. FDA should also consider convening a technical expert panel of stakeholders from multiple areas that would have material involvement in future frameworks such as the one represented in this paper, or in the alternative, leverage the experience of participants in the Pre-Cert Program, to participate on an expert committee. FDA should consider establishing an ongoing program - such as Smart and Connected Health - that focuses on the interface between research and industry domains to identify and maintain key issues and share learnings. Meeting with Senator Thunes office (R-SD) on issues of accessible autonomous vehicles (AV), on the need for universal accessible design funding as well as establishing national AV standards and related technology testing.

H.R. 3208/S. 1755: Real Emergency Access for Aging and Disability Inclusion for Disasters Act Signed onto letter of support as part of the Coalition of Citizens with Disabilities in support of the RE-AADI Act which aims to ensure that older adults and individuals with disabilities are prepared for disasters, and for other purposes.

Outreach to new 116th Members of Congress and appropriate committees of jurisdiction regarding the support of expanding access to accessible autonomous vehicles. United Spinal supports the reintroduction of AV legislation. As part of the Mobility Equity and Access Coalition, United Spinal provided edits and signed onto a letter to Finch Fulton, Deputy Assistant Secretary for Transportation Policy at DOT related to automated driving systems demonstration grants and accessibility and transportation issues. United Spinal advocacy and policy staff joined Amtrak for their quarterly meeting with the disability community to discuss the progress of their disability-related projects. Among the biggest concerns currently, is the removal of staff at several stations throughout the country. Amtrak is working with the community to ensure that people with disabilities are not left out if any assistance is needed. The second biggest issue is related to the rolling out of their revamped app, which by the end of January should allow people with disabilities to book their travel and use their discounts. Met with Rep. Jim Langevins office to discuss transportation network companies and other challenges for the disability community.

Outreach to new Members of Congress and committees of jurisdiction on the need to reform rehabilitation access, therapy and expertise for the spinal cord injury. Was asked by the Congressional Telehealth Caucus to submit comments on their RFI on telemedicine, which we did, highlighting the specific needs of access to healthcare and the challenges that our population face with reaching medical experts. Submitted appropriations requests for robust funding to the Hill for the SCI Research Program and the MS Research program at the Department of Defense. National Institutes of Health (NIH) - National Institute for Neurological Disorders and Stroke (NINDS) SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research - Post SCI 2020 Call - Had a meaningful discussion with NIH about research priorities for the SCI population and discussed our efforts to advocate on establishing SCI Centers of Excellence. National Institute on Neurological Disorders and Strokes (NINDS) Nonprofit Forum 2019: Progress through Partnership United Spinal Policy staff participated in the Progress through Partnership Forum which provided an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff. The agenda featured panel discussions on cell and gene therapy, data collection and storage, motivating the next generation of researchers, neuroethics and success stories. National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR) United Spinal policy staff met, along with numerous other disability organizations as members of the Disability Rehabilitation Research Coalition, to outline rehabilitation research priorities to the new director, Jim Whitehead. United Spinal policy staff emphasized fitness, exercise, nutrition and maximizing consumer outcomes from acute care and rehabilitation programs. United Spinal supports and signed onto letters to Congress on H.R.2073 and S. 110 (The Medical Expense Savings Act) - amend the Internal Revenue Code of 1986 to permanently extend the 7.5 percent adjusted gross income floor for the medical expense deduction. HHS - Administration for Community Living United Spinal signed onto CCDs letter to the U.S. Department of Health and Human Services ACL to oppose the ACL reorganization which is supposed to improve efficiency and effectiveness of the organization; strengthen infrastructure; and improve the connections between the organization and its stakeholder, grantees and consumers at the national, state and local levels. CCD is concerned that the reorganization plan may have the opposite result. HHS - Office of the National Coordinator for Health IT As a member of the Personal Connected Health Alliance (PCHAlliance), a non-profit membership association, United Spinal joined in commenting on the proposed rule, titled 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program, published in the Federal Register on March 4, 2019. The letter read in part: PCHAlliance appreciates ONCs extensive work to develop consensus around interoperability standards. Consensus-based standards, certification programs, and policies comprise the essential backbone to enable interoperability and the broad sharing of health care information to support and improve health care delivery, decision-making, and operations. NIH United Spinal submitted comments addressing the National Center for Medical Rehabilitation Researchs Request for Information: Research Plan on Rehabilitation. The comments read in part: We echo the comments we joined in submitting as a member of the Disability Rehabilitation Research Consortium (DRRC), the plan should ensure an understanding of rehabilitation research that is cross-cutting, multi-disciplinary, and focused on 1) understanding the mechanisms of disability, 2) supporting efforts to restore and improve functional capacity in individuals undergoing rehabilitation, and 3) maintaining and preventing deterioration of functional skills while enhancing quality of life for people with disabilities. 21st Century Assistive Technology Bill/S. 1835. Submitted letter of support to Senator Caseys office for the introduction for the 21st Century Assistive Technology Act which would help address the need for increased education of and access to the latest assistive technology devices, particularly for people with disabilities living in rural regions. United Spinal sent in comments to Rep. Suzan DelBene (D-WA) on telemedicine restrictions regarding telehealth policies in her bill entitled Mental Health Telemedicine Expansion Act/H.R. 1301 and highlighted our opposition to in-person visit requirements.

United Spinal Association, along with numerous other disability organizations, sent a letter to the FCC in support of the GM Motion to Withdraw Petition for Exemption of Certain RTT Requirements. The letter read in part: Consumer Groups and accessibility researchers support General Motors motion to withdraw its December petition to waive certain Real-Time Text (RTT) requirements for its upcoming automated ride-hailing service. VetsFirst, a program of United Spinal Association, signed onto letter of concern directed to the FCC Chairman as part of the Clear 2 Connect coalition aimed at preserving the existing IT-CPS program.

US Department of Agriculture - Supplemental Nutrition Assistance Program (SNAP) Letter United Spinal, along with numerous other disability organizations and as members of the Consortium for Citizens with Disabilities, sent a letter to the U.S. Department of Agriculture opposing a proposed rule, Supplemental Nutrition Assistance Program: Requirements for Able-Bodied Adults Without Dependents, (RIN 0584-AE57, 84 Fed. Reg. 980, published February 1, 2019). The letter read in part, there is simply no justification for weakening current SNAP waiver rules and exposing more people to the SNAP eligibility cutoff. The undersigned CCD members strongly oppose the proposed rule and urge USDA to withdraw it.

U.S. Department of Transportation (DOT) United Spinal advocacy and policy staff, along with numerous other disability organizations, as members of the Air Carriers Access Act (ACAA) working group, met with Alexander A. Taday III, Director of Civil Rights Advocacy, Aviation Consumer Protection Division, U.S. Department of Transportation. and Blane Workie, Assistant General Counsel for Aviation Enforcement and Proceedings. The purpose of the meeting was to obtain an update on the progress DOT staff have made in implementing disability related provisions in a new law. On October 5, 2018, President Trump signed into law, H.R. 302 as amended, the FAA Reauthorization Act of 2018, which United Spinal supported. The Act funds the FAA for the next five years. The new law includes an entire section devoted to improving air travel for people with disabilities (Sections 431-441), including restroom accessibility and service animals on planes; studies on airport accessibility, airline employee training, and in-cabin wheelchair restraint systems; and establishment of an advisory committee for passengers with disabilities. Support S.669/H.R. 1549 - Air Carrier Access Amendments Act of 2019

United Spinal supports the Disability Integration Act (DIA) - S.117/H.R. 555 specifies in Federal Statute that people with disabilities have a federally protected right to a real choice in how and where they receive services and supports.

United Spinal policy staff has submitted multiple requests to various Members of Congress, including those on the Appropriations committees to ensure continued robust funding for critical SCI and disability programs, such as the Spinal Cord Injury Program and the Congressionally Directed Medical Research Program for Multiple Sclerosis, both at the Department of Defense. Also, United Spinal policy staff supported the following issues: Assistive Technology Funding United Spinal, along with the Consortium for Citizens with Disabilities Autism, Developmental Disabilities and Family Supports Task Force sent a letter to House and Senate Appropriations Committee leadership to urge adequate Fiscal Year 2020 funding for programs authorized by the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) and State Assistive Technology Programs.

S. 260/H.R. 873 Transformation to Competitive Employment Act (TCE) United Spinal policy staff sent out a letter of support for S. 260/H.R. 873 the Transformation to Competitive Employment Act (TCE) to Senate and House staffers urging for passage. This bill seeks to assist employers in transforming their business models to support individuals with disabilities into competitive, integrated employment settings and to phase out the use of special wage certificates under section 14(c)of the FLSA over a six-year period. This is an important bill as TCE aims to ultimately remove artificial barriers to employment opportunities for people with disabilities. United Spinal signed onto the Consortium for Citizens with Disabilities comments to DOLs OFCCP concerning the proposed information collection for focused reviews of compliance with Section 503 of the Rehabilitation Act. United Spinal and CCD support OFCCPs plan to conduct focused reviews of compliance with Section 503. We believe the information that OFCCP is seeking to collect is critically important for assessing compliance. United Spinal, along with numerous other organizations as members of the Secure Work Coalition, sent follow up comments on ensuring successful employment outcomes for Social Security program beneficiaries. The letter read in part: Thank you for taking the time to meet with return to work stakeholders at the recent summit meeting on ensuring successful employment outcomes for recipients of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Many of the Employment Networks (EN) invited to participate in the program are members of the Secure Work Coalition (SWC) and have shared positive feedback on the experiences and ideas discussed there with other Coalition members.

United Spinal supports S. 651/H.R 1814, the ABLE Age Adjustment Act and engaged in Hill meetings.

United Spinal and other advocacy groups, including Paralyzed Veterans of America, National Council on Independent Living and others met with DOT personnel to discuss the implementation of air travel provisions for passengers with disabilities as passed in the 115th Congress in 2018 related to the Air Carriers Access Amendments Act, such as regulating that passengers with disabilities receive dignified, timely and effective assistance at airports; establishing the Advisory Committee on the Air Travel Needs of Passengers with Disabilities; increasing civil penalties for bodily harm to a passenger with a disability and damage to wheelchairs or other mobility aid as well as discussing the Air Travel Accessibility Advisory Committee nominations. Support S.669/H.R. 1549 - Air Carrier Access Amendments Act of 2019

United Spinal and NCART met with the office of Representative Sensenbrenner (R-WI) to discuss reintroduction, in the new 116th Congress, of legislation to improve access to customized wheelchairs. United Spinal, as part of the Coalition to Preserve Rehabilitation, submitted comments to CMS, on the Medicare Advantage (MA) and Part D programs through the Medicare Advantage and Part D Draft CY 2020 Call impacting benefits related to people with disabilities. United Spinal, as part of the Coalition to Preserve Rehabilitation requested a meeting with Secretary Azar to discuss the value of inpatient hospital rehabilitation and coverage of seat elevation and standing feature power wheelchairs for Medicare beneficiaries. United Spinal signed onto letters to the Centers for Medicare and Medicaid Services spearheaded by the above-named groups urging the agency to not restrict access to the six protected classes of drugs. We submitted comments to the Centers for Medicare and Medicaid Services and opposed sections of the CMS' Proposed Rule: Modernizing Part D and Medicare Advantage to Lower Drug Prices and Reduce, which would establish broad exceptions to Part Ds protected classes policy. As a Steering Committee member of the ITEM Coalition, United Spinal and others discussed with CMS Principal Deputy Administrator Demetrios Kouzoukas the need for Medicare coverage of standing wheelchairs and seat elevation as a follow-up to an in-person meeting, United Spinal and others had in October with CMS Chief Medical Officer, Kate Goodrich. ITEM Coalition continues to advocate for improved access for people with physical disabilities and chronic illnesses, to all assistive technologies and devices. United Spinal's Access and Care Coalition made a series of Hill visits over the course of two days to inform Members of Congress on the House Energy and Commerce and the House Ways and Means Committees of the negative impacts of the Centers for Medicare and Medicaid Services competitive bidding program on urology and ostomy supplies. S. 584/H.R. 1342 EMPOWER Care Act CCD Support Letter United Spinal Association signed onto a Consortium for Citizens with Disabilities letter led by the Long-Term Services & Supports (LTSS) Task Force addressed to both House and Senate leadership urging support for S. 584/H.R. 1342 a bill which reauthorizes the Money Follows the Person (MFP) Medicaid demonstration program for five more years. Medicaid Services Investment and Accountability Act of 2019/H.R.1839 One of the important provisions of this bill, which United Spinal supports, is that the bill extends the applicability of Medicaid eligibility criteria that protect against spousal impoverishment (spousal income is excluded for Medicaid eligibility criteria) for recipients of home- and community-based services.

United Spinal Association, along with numerous other national disability organizations, submitted comments to the FCC in response to GMs Petition for Partial Waiver of Real-Time Text Minimum Functionality Requirements; raising concerns about ensuring communications access for the disability community.

On January 14, 2019 the Co-Chairs of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD), of which United Spinal Association (along with numerous other disability organizations), is a member, commented on the Notice of Proposed Rulemaking on Setting the Manner for the Appearance of Parties and Witnesses at a Hearing, 83 Fed. Reg. 57368 (November 15, 2018), Docket No. SSA- 2017-0015, raising concerns about removing in-person hearings as an option. Consideration of Pain in the Disability Determination Process United Spinal, along with numerous other disability organizations that are members of the Social Security Task Force of the Consortium for Citizens with Disabilities (CCD), signed onto comments about the Social Security Administrations Advanced Notice of Proposed Rulemaking on Consideration of Pain in the Disability Determination Process, 83 Fed. Reg. 64493 (December 17, 2018), Docket No. SSA-2018-0017, ensuring that chronic pain and disability be appropriately recognized in medical documentation as part of the determination process. United Spinal supports Social Security Task Force of the Consortium for Citizens with Disabilities (CCD) Co-Chairs comments on Review and Reassessment of the Social Security Administration's (SSA) Representative Payee Selection and Replacement Policies

United Spinal discussed the reintroduction of the READI for Disaster Act in the 116th Congress with the House and Senate. This bill creates a network of centers focused on research, training and technical assistance; establishes a commission on disability rights and disasters to study access and functional needs; and examines how the civil rights of people with disabilities and older adults are impacted.

United Spinal Association is an official non-federal partner of NIH for their February SCI 2020 Conference. United Spinal Policy staff are working: with NIH representatives to include discussions of rehab therapy and rehab denials/rehab outcomes for the SCI population in the Conference. to disseminate throughout our network a North American Spinal Cord Injury Consortium SCI survey they developed and plan on presenting the results at the conference. with the lead institute for the Conference, the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) to promote attendance for the Conference from the clinician community. United Spinal, as a member of the Disability and Rehabilitation Research Coalition (DRRC), and along with other members, supported the DRRCs comments on the Eunice Kennedy Shriver National Institute of Child Health and Human Developments (NICHD) Request for Information: NICHD Strategic Plan Fiscal Years 2020-2024. The comments emphasized the importance of the National Center for Medical Rehabilitation Research (NCMRR) and its mission to foster development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of people of all ages with physical disabilities. An important component of this includes the integration of nutritional guidance and exercise into rehabilitation efforts, as well as maximizing the outcomes of those twin pillars of health throughout a childs development. Outreach to new 116th Members of Congress and appropriate committees of jurisdiction on maximizing rehabilitation outcomes for people with spinal cord injuries and disorders. As a member of the Societys Activism Advisory Committee and as a member of the Multiple Sclerosis Coalition, United Spinal policy staff attended the Societys PPC conference in March. The PPC advocated Congress for lower drug pricing; penalties to pharmaceutical companies who pay to delay the introduction of generics to the market; and the funding for the National Institutes of Health, and the Congressionally-Directed Medical Research Program for Multiple Sclerosis at the Department of Defense.

As part of the Consortium of Citizens with Disabilities, VetsFirst supported a House appropriations request in the amount of $300,000 to help address the employment challenges of veterans with service connected and non-service connected disabilities, for the new Disabled Veteran Program (DVP) at the U.S. Department of Labors (DOL) Veterans Employment and Training Service (VETS). United Spinal policy staff provided input for a DOL - ODEP publication on autonomous vehicles for the disability community. United Spinal supports the Disability Employment Incentive Act, S. 2555.

Supported, advocated on READI for Disasters Act, S. 3679.

Supports H.R. 750 The Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act. Supports S. 486 Protecting Beneficiary Access to Complex Rehab Technology Act of 2017 Supports H.R. 3730 (To amend title XVIII of the Social Security Act to provide for the non-application of Medicare competitive acquisition rates to complex rehabilitative manual wheelchairs and accessories) was introduced by Representatives Lee Zeldin (R-NY) and John Larson (D-CT) to stop CMS from using Competitive Bid pricing for accessories used with CRT manual wheelchairs. Discussed with CMS, the issue of power wheelchair standing and seat elevation devices and the need for appropriate coverage under Medicare. Discussed with CMS, the need for excluding ostomy and urology supplies from CMS' competitive bidding program. Sent letter to CMS re: the National Coverage Decision on Blood Pressure Monitoring to account for the specific needs of the SCI population. Sent letter to CMS on appropriate coding for powered orthotic and prosthetic devices for the SCI/D population. Spoke with CMS on the issue of catheter-associated UTIs and to ask CMS to look at the policy around removing indwelling catheters from individuals with SCI in a hospital setting. Removing catheters from SCI individuals is a very complex decision. Supported HR 7217 - the IMPROVE Act. Supported additional telehealth benefits in Medicare Advantage as United Spinal, and as a member of the Coalition, PCHAlliance. And provided comments to CMS on digital health and need the innovation to CMMI as part of PCHAlliance. Continued to provide comments on appropriate access to assistive technology and medical devices, as part of the ITEM Coalition on behalf of the SCI community and on appropriate rehabilitation as part of the Coalition to Preserve Rehabilitation.

Support of HR 5004 - Air Carrier Access Amendments Act of 2018 and S. 1318, ACAAA of 2017.

Supported the Social Security Disability Protection Act - S. 3741

Submitted comments in the form of concerns to U.S Citizenship and Immigration Service - opposing the public charge rule for persons with disabilities.

Support H.R.1874/S. 817, ABLE Age Adjustment Act

Discussed potential legislation around National Trauma Care System Act - establishing a national trauma care system act to integrate existing civilian-military systems and promote research and support. Support FCC protection of low-income consumers' access to telephone service - "Promoting Broadband Internet Access Service for Veterans - support of the Lifeline program. Advocated on VA MISSION Act. Advocated on Disabled Veterans Life Insurance act, HR. 4146.

Discussed potential legislation around Postal Accessibility and Inclusion Act - to be introduced in the 116th Congress.

Accessible Exercise Equipment United Spinal helped introduce legislation of Senator Tammy Duckworth, S. 3729 - Exercise and Fitness For All Act that would authorize the Access Board to issue guidelines specifying the number and types of accessible exercise equipment required. It also provides for a tax credit for a small business purchasing accessible exercise equipment. United Spinal Association discussed with NIH and CDC the work related to appropriating $5 million per year for 4 years for the National Neurological Conditions Surveillance System in 2018 appropriations. Communicated with NIH the importance of focusing on the need for better outcomes data on rehab for the SCI community. United Spinal became an official non-Federal partner along with others for NIH's SCI 2020 Conference. United Spinal provided feedback on challenges and opportunities regarding improved communication and focused priorities with NIDILRR. United Spinal presented at the Spinal Cord Injury Model Systems Project Directors Meeting on the need for better rehab research outcomes for the SCI/D community.

Support of HR 5004 - Air Carrier Access Amendments Act of 2018 and S. 1318, ACAAA of 2017. As a member of the Air Carriers Access Act Working Group, United Spinal, along with a number of other disability organizations, signed on to a letter of support for HR 302, the FAA Reauthorization Act of 2018, which included ACAAA provisions.

Sent a letter to the FCC docket in support of 5G infrastructure implementation.

Support AV START Act, S. 1885.

United Spinal attended an FDA meeting on biopharmaceuticals and submitted comments to the FDA on ensuring appropriate patient protections to new biologics and biosimilars that come to market.s

Regarding virtual instruction there is typically a baseline expectation that the student has internet access and there is hardware/software to access online virtual instruction. United Spinal and the Consortium for Citizens with Disabilities Technology and Telecommunications Task Force requests that accessibility be included and reminded the Dept. of Education that Section 504 of the Rehabilitation Act as well as the Americans with Disabilities Act apply to the work they do in addition to the Individuals with Disabilities Education Act as well as the principle of free and public education

The Consortium for Citizens with Disabilities Transportation Task Force sent a letter to Amtrak asking them to address several concerns the disability community has related to their work. United Spinal policy staff assisted in editing the letter which discussed several concerns and improvements needed with Amtrak along with our opposition to their reduction in staff at several stations which could make it hard for people with disabilities to get the assistance they need at these stations.

U.S. Senate, Committee on Finance Subcommittee on Social Security, Pensions, and Family Policy July 11, 2018 Endorsed Consortium for Citizens with Disabilties' comments for the Congressional record on proposals to expand access to paid family and medical leave for workers in the United States, including one put forward by the Independent Womens Forum (IWF) highlighting our concerns with the impact of the IWF proposal on Social Security. As noted in the statement, our nation can create a paid leave plan affordably and responsibly - without reducing workers Social Security benefits or forcing them to delay retirement.

Signed onto a Consortium for Citizens with Disabilities letter addressed to the Senate in opposition to the nomination of Supreme Court nominee Judge Brett Kavanaugh.

Support S. 3459 Disabled Access Tax Credit Expansion Act Support the Disability Employment Incentive Act, S. 3260. Support Protect Medical Innovation Act of 2017, H.R. 184. Support H.R.1874/S. 817, ABLE Age Adjustment Act

Support H.R. 5603 the Access to Telehealth Services for Opioid Use Disorders Act. Sent a letter to ACL/HHS related to concerns about community living remarks by ACL and the disability community. Met with ACL several times to discuss community living issues including access to CRT, our support for the Disability Integration Act, S. 910/HR. 2472, competitive integrated employment and employment for people with disabilities in the healthcare sector and accessible medical diagnostic equipment. Support H.R. 6042 and HR. 5912 which amend Title XIX of the Social Security Act, to delay the reduction in Federal medical assistance percentage for Medicaid personal care services furnished without an electronic visit verification system. Accessible Exercise Equipment United Spinal helped draft and provide comments to a former Access Board member to a letter to Senator Tammy Duckworth (D-IL) urging her to introduce legislation, similar to HR 5541/S. 2888, 113th Congress - Exercise and Fitness For All Act that you co-sponsored in 2014, that would authorize the Access Board to issue guidelines specifying the number and types of accessible exercise equipment required. It also provides for a tax credit for a small business purchasing accessible exercise equipment. Medical Expense Coalition United Spinal has been advocating to increase and expand the medical expense deduction and so we signed onto a letter to Senators Susan Collins (R-ME) and Rob Portman (R-OH) who have introduced medical expense provisions in the past,as well as to the House of Representatives. For the approximately 8.8 million Americans who annually take this deduction, it provides important tax relief which helps offset the costs of acute and chronic medical conditions for older Americans, children, pregnant women and other adults as well as the costs associated with long term care and assisted living. Medical expenses that qualify for this deduction can include amounts paid for prevention, diagnosis, treatment, equipment, qualified long-term care services costs as well as long term care insurance premiums. Families across the country with high health care costs face a constant stream of deductibles and high co-pays, and also pay out-of-pocket for various services and devices that enable the individual to live a productive life in the community. Opposed move of NIDILRR from ACL included in House and Senate appropriations committee language. United Spinal signed onto a Health IT Now Coalition letter to the Office of the National Coordinator for Health Information Technology and the Office of the Inspector General, both at the Department of Health and Human Services to follow up on regulatory implementation issues. Section 4004 of 21st Century Cures Act, which was signed into law in December 2016, requires the Secretary of Health and Human Services to issue regulations to prevent information blocking and to also identify reasonable and necessary activities that do not constitute information blocking. Further, the law requires the Office of the National Coordinator (ONC) to implement a standardized process for the public to submit reports on claims of health information technology products or developers of such products not being interoperable or resulting in information blocking and actions that result in information blocking. The Office of the Inspector General (OIG) has enforcement authority over vendors and providers who are found to engage in information blocking. United Spinal Association signed onto a thank you letter to Congress for appropriating $5million per year for 4 years for the National Neurological Conditions Surveillance System in 2018 appropriations.

CIV- Civil Rights/Civil Liberties - Department of Health and Human Services, Centers for Medicare and Medicaid Services VetsFirst, along with United Spinal Association, signed onto a letter of support from the ITEM Coalition regarding Medicare coverage of elevation and standing feature power wheelchairs. Along with 22 other organizations, we support Medicare coverage of such equipment in order to improve access and quality of life for wheelchair users. FIN- Financial Institutions/Investments/Securities - Department of Defense VetsFirst signed onto an action letter from the Consumer Financial Protection Bureau asking Secretary of Defense James Mattis for continued strong enforcement and supervision of the Military Lending Act. This legislation helps protect service members from predatory lending practices, which, in turn, helps protect defense funding. EDU- Education - Department of Education VetsFirst signed onto an action letter from Veterans Education Success urging the Department of Education to retain program integrity rules for colleges wanting to receive taxpayer dollars. These rules help protect students by requiring that teachers actually teach students, instead of relying on videos for lecture material. The letter also requests that the Education Department include a representative of veterans, service members, military families, and survivors on the negotiated rule-making panels.

United Spinal Association signed onto a Consortium for Citizens with Disabilities' Emergency Management letter to FEMA highlighting our concerns with evacuation and shelter-in place protective actions for the disability community.

As a member of the Disability Rehabilitation Research Coalition (DRRC), United Spinal helped draft and signed onto a letter the DRRC sent to the House and Senate bipartisan appropriations subcommittees leadership recommending that the FY 2019 Labor, HHS, Education, and Related Agencies appropriations bill provide necessary and sufficient funding for the various federal agencies supporting and conducting disability, independent living, and rehabilitation research to address the current and future needs for individuals with disabilities and society. Signed on to a letter to Congress to express our strong opposition to the Administrations proposal in its FY 2019 Budget to transfer the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to the National Institutes of Health (NIH). United Spinal signed onto a Congressional letter, facilitated by the National Respite Coalition, in support of Fiscal Year 2019 Labor/HHS/Education Appropriations bill for respite and family caregiver support that provide a safety net for family caregivers across the lifespan supporting $5 million for the Lifespan Respite Care Program and at least level funding (though pushing for a 12% increase) for the National Family Caregiver Support Program.

Support of Transition to Independence Act, H.R. 4931. United Spinal joined in a CCD letter to express our concerns with Sec. Acosta, of DOL, about the implementation of the Executive Order issued by the President on April 10, 2018 titled Reducing Poverty in America by Promoting Opportunity and Economic Mobility. CCD is a coalition of national disability rights, advocacy, consumer, provider and self-advocate organizations representing this nations 57 million Americans with disabilities.

Supports H.R. 750 The Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act. Supports S. 486 Protecting Beneficiary Access to Complex Rehab Technology Act of 2017 Supports H.R. 3730 (To amend title XVIII of the Social Security Act to provide for the non-application of Medicare competitive acquisition rates to complex rehabilitative manual wheelchairs and accessories) was introduced by Representatives Lee Zeldin (R-NY) and John Larson (D-CT) to stop CMS from using Competitive Bid pricing for accessories used with CRT manual wheelchairs. Supports H.R. 626, the Access to Inpatient Rehabilitation Therapy Act of 2017, which would amend the Social Security Act to include recreational therapy among the therapy methods that can be considered part of an intensive rehabilitation therapy program in an inpatient rehabilitation hospital or unit. Myomos MyoPro support letter to CMS Policy staff, as members of United Spinal Association, wrote the Centers for Medicare and Medicaid Services (CMS) in strong support of an application to CMS for a unique Healthcare Common Procedure Coding System (HCPCS) code for the MyoPro device, created by the medical technology company, Myomo. Support of S. 2227/H.R.5306 Empower Care Act which reinstates the Money Follows the Person program and facilitates smooth transitions out of nursing facilities and into the community. Signed onto letters to Congress in support of including functional quality measures in rehabilitation metrics. United Spinal supports this letter but CCD Task Force co-chairs: The co-chairs of the Consortium for Citizens with Disabilities (CCD) Health, Long-Term Services and Supports, and Rights Task Forces write in opposition to proposals that expand coverage of institutional services in Medicaid without addressing gaps in Medicaid community services. CCD is the largest coalition of national organizations working together to advocate for Federal public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.

As a member of the Consortium for Citizens with Disabilities Social Security Task Force, United Spinal Policy Staff assisted in drafting comments to be submitted via www.regulations.gov on the Notice of Proposed Rulemaking on Revised Medical Criteria for Evaluating Musculoskeletal Impairments, 83 Fed. Reg. 20646 (May 7, 2018), Docket No. SSA-2006-0112. CCDs Social Security Task Force supports strengthening the accuracy and timeliness of disability determinations. \

Continued lobby efforts on HR 620 The ADA Education and Reform Act meetings to oppose this legislation. United Spinal continues to advocate for the Disability Integration Act (S. 910, H.R. 2472). The legislation builds on the Americans with Disabilities Act and the Supreme Courts Olmstead decision, and asserts that people with disabilities have a right to live in their own homes and communities and to receive the services and supports they need to do so. United Spinal signed onto a letter of support for the Disability Integration Act (S. 910, H.R. 2472)along with numerous other disability organizations as members of the Consortium for Citizens (CCD), signed onto a letter to congressional leaders, Majority Leader McConnell and Minority Leader Schumer, Speaker Ryan and Leader Pelosi reiterating support of the Disability Integration Act (S. 910, H.R. 2472). This legislation, if passed, would ensure the rights of people with disabilities to live full and independent lives in their communities. Working with the Department of Labor in Twitter chats in promoting accessible transportation for people with disabilities. United Spinal and other stakeholder groups met with Sen. Caseys office to discuss employment challenges and opportunities for people with disabilities.

Signed onto a Consortium for Citizens with Disabilities letter that was sent to HUD Sec. Carson that seeks to stop HUD from removing anti-discrimination language in its mission statement.

The National Institutes of Health (NIH) All of Us Community Forum Ideascale is soliciting ideas from the research and stakeholders communities to help guide NIH research goals and priorities. United Spinal policy submitted the following: Idea #384: Why is there so very little research on the physical benefits of adaptive fitness on physiological functioning & health outcomes.

Signed onto letter, led by the CCD Transportation Task Force, to Senator Tammy Baldwin, in support of the Air Carrier Access Amendments Act of 2017, her bill, S.1318. Congressional staff with U.S. Representative Jim Langevin's (D-RI-02) office discussed air travel for people with disabilities and related policy issues with United Spinal and other disability stakeholders. United Spinal, along with numerous disability organizations, signed on to an Air Carrier Access Act (ACAA) working group letter to the U.S. Department of Transportation expressing concern with the revised service animal policies announced by Delta Air Lines and United Airlines (United) in January. The letter read in part: We believe that these policies, which are slated to go into effect on March 1, are inconsistent with the Department of Transportations regulations implementing the Air Carrier Access Act (ACAA) (14 C.F.R 382) and the Departments Guidance Concerning Service Animals in Air Transportation, [68 Fed. Reg. 24,874 (May 9, 2003)]. Consequently, the Department must deem these revised policies to be in violation of the ACAA and advise Delta and United accordingly. United Spinal, along with numerous other disability organizations, signed on to a Consortium for Citizens with Disabilities (CCD) letter to U.S. Senator Tammy Baldwin in support of the Air Carriers Access Amendments Act of 2017 (ACAAA). Although the Air Carriers Access Act of 1986 (ACAA) prohibited discrimination based on disability in air travel and despite the ACAA has led to improved access for passengers with disabilities, significant disability-related problems persist in air travel. Travelers with disabilities still encounter damaged equipment, delayed assistance, lack of seating accommodations, and other challenges when traveling by air. Airlines reported receiving more than 30,000 passenger filed disability-related complaints in 2016. United Spinal, along with numerous other disability organizations, signed on to a Consortium for Citizens with Disabilities (CCD) letter to U.S. Senator Tammy Baldwin in support of the Air Carriers Access Amendments Act of 2017 (ACAAA). Although the Air Carriers Access Act of 1986 (ACAA) prohibited discrimination based on disability in air travel and despite the ACAA has led to improved access for passengers with disabilities, significant disability-related problems persist in air travel. Travelers with disabilities still encounter damaged equipment, delayed assistance, lack of seating accommodations, and other challenges when traveling by air. Airlines reported receiving more than 30,000 passenger filed disability-related complaints in 2016.

H.R. 4508, Promoting Real Opportunity, Success, and Prosperity Through Education Reform Act (PROSPER): VetsFirst, a program of United Spinal Association,signed onto a Student Veterans of America opposition letter regarding this legislation. HR 4508 would enable proprietary institutions to use deceptive recruitment practices that emphasize enrollment numbers rather than positive student outcomes. In addition, the bill proposes eliminating the 90/10 rule-a requirement that proprietary schools receive no more than 90 percent of its revenue from the federal government. United Spinal wrote a letter to the Department of Education (DOE) regarding Section 5005 of the Every Student Succeeds Act (ESSA). Rural school districts can be isolated and as such may not have access to the services/resources provided by urban educational organizations and disability entities. These resource restrictions can include the lack of services provided by full-time nurses, school psychologists, counselors and social workers who are most knowledgeable regarding identifying complex neurological conditions. The result is an inability to provide free and appropriate public education (FAPE). United Spinal Association and other members of the Consortium for Citizens with Disabilities (CCD) Civil Rights, Education, and Technology & Telecommunications Task Forces wrote to Congress in reference to Section 735 of the Promoting Real Opportunity, Success, and Prosperity through Education Reform (PROSPER) Act, H.R. 4508. Section 735 encourages institutions of higher education to design and use accessible instructional materials. We support the provisions of Section 735 of PROSPER Act and the Senate companion bill that would authorize the creation of a commission to develop voluntary accessibility guidelines for electronic instructional materials and related technologies used in postsecondary education. Our serious concern is with the inclusion of a safe harbor provision.

United Spinal Policy staff continue to advocate for full funding for the Assistive Technology Act. The Assistive Technology Act helps ensure services to people with disabilities that helps them access and acquire assistive technology. United Spinal Policy staff continue to support continued federal funding for the Paralysis Resource Center (PRC). In his proposed budgets for FY 2018 and FY 2019, President Trump zeroed out funding for the PRC. Oppose reduced appropriations for National Institute on Disability, Independent Living and Rehabilitation Research ( NIDILRR) the Agency for Healthcare Research and Quality (AHRQ) and the National Institute for Occupational Safety And Health (NIOSH).

Continued lobby efforts on HR 620 The ADA Education and Reform Act meetings to oppose this legislation. Met with Congressional staff in the House and Senate to voice our concerns with the bill. Shared United Spinal letter of opposition on H.R. 620 the ADA Education and Reform Act via email to all House staff voicing our concerns with this legislation. United Spinal participated in NCD quarterly meeting to discuss potential new policy initiatives from autonomous vehicles to transitioning away from subminimum wage and 14(c) certificates. Attended, along with several other disability organizations, a meeting with Sen. Feinstein and Sen. Flake judiciary staffers to discuss our concerns with and opposition to H.R. 620 the ADA Education and Reform Act which was passed out of the House. H.R. 620, ADA Education and Reform Act: VetsFirst, a program of United Spinal Association, submitted a letter of opposition regarding this legislation. H.R. 620 restricts disabled patrons rights to accessible and accommodative facilities and services required by law through the Americans with Disabilities Act (ADA) by allowing businesses to delay meeting their obligations to make necessary changes to noncompliant facilities and services. United Spinal, along with numerous other disability organizations, signed on to a Consortium for Citizens with Disabilities (CCD) and the Collaboration to Promote Self Determination (CPSD) letter to express concern about the Justice Departments recent withdrawal of a number of guidance and technical assistance documents concerning the Americans with Disabilities Act (ADA). United Spinal met with Congressional staff in Rep. Langevin's office and Sen. Tammy Baldwin's office to thank them for their leadership on their bills, S, 1318 and HR 5004 and to discuss advocacy strategy together.

United Spinal, along with numerous other disability organizations, signed on to a Consortium for Citizens with Disabilities (CCD) and a separate CCD letter to Congressional House and Senate leadership in support of H.R. 3730 to protect access to essential components of complex rehabilitation manual wheelchairs known as accessories for people with significant disabilities prior to the Federal governments funding agreements in January. Complex Rehabilitation Technology (CRT) are medically necessary, individually configured products such as manual and power wheelchairs, adaptive seating systems and alternative positioning systems that keep people with significant disabilities such as Amyotrophic Lateral Sclerosis (ALS), spinal cord injury, multiple sclerosis (MS) and muscular dystrophy healthy and independent. United Spinal was actively engaged with Congress, as part of the Therapy Cap Coalition, (and signed onto several letters) in opposing any limits to therapy visits for speech-language, occupational or physical therapy. United Spinal signed onto a letter to the Centers for Medicare and Medicaid Services regarding the importance of balancing the goals of health plan flexibility with ensuring beneficiary protections. Department of Health and Human Services - Centers for Medicare and Medicaid Services (CMS) - Winter Outreach Call United Spinal attended a stakeholder meeting with CMS and a group of disability advocacy organizations who were invited by CMS and the Administration for Community Living (ACL) to participate in a Winter Outreach call to discuss competitive bidding complaints, the announcement of additional ombudsman positions and related updates, the issuance of new Medicare cards and other beneficiary issues. United Spinal signed onto a letter to CMS, facilitated by the American Urology Association, to eliminate the administrative barriers to patient access to medically necessary services that are imposed by Medicare Advantage plans increasing prior authorization requirements. United Spinal, as a member of the ITEM Coalition Steering Committee, signed on to and sent an ITEM letter to Congress in support of protecting CRT legislation and other device legislation to be included in Congress continual funding as they work to finalize FY 2018 budgets which have not yet been finalized from the supposed end of the fiscal year of September 30, 2017. United Spinal sent a letter to the Centers for Medicare and Medicaid Services (CMS) in support of an application for a unique Healthcare Common Procedure Coding System (HCPCS) code for the MyoPro device, created by the medical technology company, Myomo. The MyoPro, is a custom fabricated arm brace, the only one of its kind, that uses safe, noninvasive myoelectric technology to enable individuals living with spinal cord injuries and other neurological conditions to retain functional mobility in their arms. United Spinal signed on to an American Academy of Physical Medicine and Rehabilitation (AAPM&R) letter, to Congress, along with numerous rehabilitation and disability in strongly supporting H.R. 626, the Access to Inpatient Rehabilitation Therapy Act of 2017. United Spinal, along with numerous other disability organizations, signed on to a Consortium for Citizens with Disabilities (CCD) letter opposing taking health care/Medicaid away from people who are unemployed. The letter expressed CCDs strong opposition to the Centers for Medicare and Medicaid Services (CMS) January 11, 2017 guidance authorizing states to implement unprecedented work requirements for the Medicaid program, and its subsequent approval of Kentuckys waiver application seeking to implement work requirements. ITEM Coalition Steering Committee As a member of the Steering Committee, United Spinal continues to advocate to protect access to medical devices and assistive technologies, in this changing healthcare landscape, through letters to both Congress and the Administration as well as meetings and conference calls. On a related issue, United Spinal sent in joint comments to the Medicare Payment Advisory Commission (MedPAC) opposing any expansion of Medicares competitive bidding program on urology and ostomy supplies which restricts consumer access to medically necessary products and supplies. Coalition to Preserve Rehabilitation Steering Committee As a member of the Steering Committee, United Spinal continues to advocate for improved rehabilitation benefits for the disability community, in this changing healthcare landscape, through letters to both Congress and the Administration as well as meetings and conference calls; such as sending an opposition comment letter to the Department of Labor regarding Employer-Sponsored Association Health plans which can provide less comprehensive coverage and higher out-of-pocket costs. We believe that insurance coverage, whether through an employer, a plan purchased on the exchange, or an association health plan (AHP), must ensure access to timely, affordable, high-quality health care that meets the needs of individuals with disabilities.

Discussed consumer protections on biologics. The FDA released a draft interchangeability guidance that we support. It is a critical step on the path to providing safety and confidence. We continue to advocate for guidance on the interchangeability of biologic products as it is a necessity to ensure patient safety.

Signed on to letter of support for the Stop Taxing Death and Disability Act of 2017. H.R. 1659/S. 405 Discussed the importance of direct mail in providing funding to non-profits and opposing restrictions on individual charitable giving.

Discussed with DOL and the White House employment policy for people with disabilities, including finalizing and updating Section 501 of the Rehabilitation Act to ensure there are opportunities for personal assistance services for people with disabilities with a 12% recruitment goal for people with disabilities and a 2% recruitment goal for certain targeted disabilities at the federal government and ways to partner with DOL ODEP on the State Exchange on Employment and Disability program. Discussed with EEOC the recent final rule on the Rehabilitation Act's Section 501.

Spoke with representatives of the CDMRP SCIRP program at the Department of Defense. The SCIRP focuses its funding on innovative projects that have the potential to make a significant impact on improving the function, wellness, and overall quality of life for military service members as well as their caregivers, families, and the American public. We support robust funding levels in the FY18 budget.

Discussed disability community concerns around improving accessibility. Non-Emergency Medical Transportation - opposed HR 1394 which amends Title XIX of the Social Security Act to provide States with flexibility with respect to providing coverage for non-emergency transportation under Medicaid. Support safety measures and facilitate policies regarding the development of autonomous vehicles for people with disabilities.

United Spinal signed on to testimony for the House Ways & Means Oversight and Social Security Subcommittees second joint hearing on SSAs representative payee program on Wednesday, March 22nd. The testimony pointed out, Millions of Social Security and SSI beneficiaries have payees, with the vast majority performing their duties admirably under difficult circumstances. However, a small percentage of payees have misused benefits and violated their fiduciary duties, and some have even abused beneficiaries.

Support repeal of the medical device tax - HR 523 - Protect Medical Innovation Act. United Spinal, along with many groups representing patients, scientists, advocates, caregivers and health care professionals, urged Congressional leaders to make updating the oversight framework for all molecular diagnostic tests, including laboratory developed tests (LDTs), a priority early in the 115th Congress. The Food and Drug Administration needs to play a more visible role in oversight of LDTs.

Oppose legalizing assisted suicide. Opposed the Death with Dignity Act. B21-0038

Discussed current legislation authorizing Federal Aviation Administration programs expires in September of this year. Discussed the future of regulatory actions US Department of Transportation (US DOT) may take regarding issues that were part of last years negotiated rule making effort. United Spinal requested that future facilitators/contractors in regulatory negotiating committees should be qualified and able to fully communicate with the entire community, particularly those with various disabilities.

Discussed concerns regarding confirmation of Senator Jefferson Sessions as Attorney General relating to his view of the protection of civil rights. Signed onto letters to Congress opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Support HR 634 - the existence of the Election Assistance Commission - which provides the election administration and accessible resources at polling places.

Discussed concerns regarding confirmation of Senator Jefferson Sessions as Attorney General relating to his view of the protection of civil rights. Signed onto letters to Congress opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Support HR 634 - the existence of the Election Assistance Commission - which provides the election administration and accessible resources at polling places.

United Spinal signed on to testimony for the House Ways & Means Oversight and Social Security Subcommittees second joint hearing on SSAs representative payee program on Wednesday, March 22nd. The testimony pointed out, Millions of Social Security and SSI beneficiaries have payees, with the vast majority performing their duties admirably under difficult circumstances. However, a small percentage of payees have misused benefits and violated their fiduciary duties, and some have even abused beneficiaries.

Discussed consumer protections on biologics. The FDA released a draft interchangeability guidance that we support. It is a critical step on the path to providing safety and confidence. We continue to advocate for guidance on the interchangeability of biologic products as it is a necessity to ensure patient safety.

Signed on to letter of support for the Stop Taxing Death and Disability Act of 2017. H.R. 1659/S. 405 Discussed the importance of direct mail in providing funding to non-profits and opposing restrictions on individual charitable giving.

Spoke with representatives of the CDMRP SCIRP program at the Department of Defense. The SCIRP focuses its funding on innovative projects that have the potential to make a significant impact on improving the function, wellness, and overall quality of life for military service members as well as their caregivers, families, and the American public. We support robust funding levels in the FY18 budget.

Discussed with DOL and the White House employment policy for people with disabilities, including finalizing and updating Section 501 of the Rehabilitation Act to ensure there are opportunities for personal assistance services for people with disabilities with a 12% recruitment goal for people with disabilities and a 2% recruitment goal for certain targeted disabilities at the federal government and ways to partner with DOL ODEP on the State Exchange on Employment and Disability program. Discussed with EEOC the recent final rule on the Rehabilitation Act's Section 501.

Discussed disability community concerns around improving accessibility. Non-Emergency Medical Transportation - opposed HR 1394 which amends Title XIX of the Social Security Act to provide States with flexibility with respect to providing coverage for non-emergency transportation under Medicaid. Support safety measures and facilitate policies regarding the development of autonomous vehicles for people with disabilities.

Support repeal of the medical device tax - HR 523 - Protect Medical Innovation Act. United Spinal, along with many groups representing patients, scientists, advocates, caregivers and health care professionals, urged Congressional leaders to make updating the oversight framework for all molecular diagnostic tests, including laboratory developed tests (LDTs), a priority early in the 115th Congress. The Food and Drug Administration needs to play a more visible role in oversight of LDTs.

Discussed options for United Spinal to be a potential grantee of the agencys Paralysis Resource Center. The PRC provides comprehensive information for people living with spinal cord injury, paralysis and mobility-related disabilities and their families. Resources include information and referral by phone and email in multiple languages including English and Spanish; a peer and family support mentoring program; a military and veterans program; multicultural outreach services; free lending library; quality of life grants; and a national website. The grant components and requirements may differ in upcoming grant announcements. Opposed efforts to repeal and replace the Affordable Care Act with multiple letters to White House and to the Hill as well as Hill meetings and signed onto letters in support of protection of pre-existing conditions and essential health benefits. Support HR 750 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017 Support HR 1361/S. 486 - to protect access to complex rehab wheelchairs and essential components required by people with disabilities Support implementing what was passed into law as part of the 21st Century Cures Act - HR 292/S. 849 including ensuring robust funding. Support HR 807 and S. 253 - Medicare Access to Rehabilitation Services Act of 2017. Raised concerns with HR 1628- The American Health Care Act Provided comments to NIDILRR on their long-range plan regarding government-wide research to include adaptive fitness and nutrition. Continue to discuss NIH government research on disability and rehabilitation issues.

Oppose legalizing assisted suicide. Opposed the Death with Dignity Act. B21-0038

Supports FAA Reauthorization including some disability specific sections (H.R. 323). Supported language in S. 1872, the Transportation Security Administration (TSA) Modernization bill regarding improvements for screening of passengers with disabilities related to training, handling and airport signage. United Spinal supports Air Carriers Access Amendments Act, S.1318. U.S. Department of Transportation Notification of Regulatory Review: in response to DOT's notification of regulatory review, United Spinal and others signed onto a letter to DOC which points out that the ACAA, a civil rights law that prohibits disability-based discrimination in air travel and its regulations, are crucial to safety issues and calls on DOT to move forward in publishing rules concerning access to lavatories on single-aisle aircraft and in-flight entertainment. United Spinal, along with numerous other disability organizations, and as a member of the Air Carriers Access Act (ACAA) working group, signed on to a letter to the U.S. Department of Homeland Security, Transportation Security Administration (TSA) supporting a proposal to add a Request for Assistance in electronic form

Oppose provisions within HR 1628 - the American Health Care Act/the Better Care Reconciliation Act. Opposed provisions in H.R.1 - the Tax Cuts and Jobs Act. Support the medical expense deduction, individual mandate, disabled access credit, work opportunity tax credit

Submitted comments during the open comment period on restoring internet freedom/net neutrality. We recommended that the FCC continue to promote internet freedoms. We urged for the FCC to not place barriers on the lives of individuals living with disabilities as net neutrality is important to telehealth and connected devices. The comments were submitted during the open comment period in July.

Oppose H.R. 620, ADA Education and Reform Act and H.R 3571, Reasonable ADA Compliance Act. Both these bills limit rights of people with disabilities under the ADA. United Spinal policy staff attended the quarterly meeting with AMTRAK to meet their new Vice President on Accessibility. AMTRAK holds quarterly meetings throughout the year with the disability community to hear from disability stakeholders how they can improve their work in being as accessible as possible and to update disability stakeholders on their ongoing projects.

Support H.R. 750 The Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act will create a separate category for CRT within the Medicare DME benefit. Support H.R. 3730 - provides a permanent exemption from Medicare's competitive acquisition program for manual CRT and wheelchairs and related components(including endorsing a letter to Congress). Support S.486 - Protecting Beneficiary Access to Complex Rehab Technology Act of 2017 United Spinal and National Disability Leadership staff met with CMS' Office of Minority Health to discuss issues around the representation of disability professionals in the healthcare sector. Support S. 253/H.R 807 - Medicare Access to Rehabilitation Services Act of 2017. Also support therapy cap extenders to be included in CR government funding. Support improved payments at CMS for joint replacements and improving the quality of care for Medicare beneficiaries who use custom orthotic braces and prosthetic limbs. Met with MedPAC to discuss our opposition to including non-commodity items into Medicare's competitive bidding program. United Spinal signed onto a CMS comment letter: HHS Notice of Benefit and Payment Parameters for 2019. This proposed rule sets forth benefit and payment parameters, provisions related to essential health benefits (EHBs), qualified health plans (QHPs), risk adjustment, and the operation of Federally-facilitated exchanges (FFEs) and State-based exchanges (SBEs), as well as many other policies implementing the Affordable Care Act (ACA). This comment letter focusses on key proposed provisions that relate to enrollees in need of medical rehabilitation and post-acute care, specifically rules related to the essential health benefit category of rehabilitation and habilitation services and devices, as well as provider network adequacy requirements.

United Spinal signed onto a letter to Food and Drug Administration Commissioner Scott Gottlieb to ensure continued engagement with the patient advocacy community on the issues of safe use of biopharmaceutical products. United Spinal policy staff met with officials from NIHs National Institute of Neurological Disorders and Stroke (NINDS) and National Institute on Aging (NIA)and National Institute of Child Health and Human Development(NICHD) to discuss an increased focus on disability rehabilitation research and planning. Supports S. 910/H.R. 2472 - To prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes.

United Spinal and other members of the Disability and Rehabilitation Research Coalition (DRRC) sent a letter to Eric D. Hargan, Acting Secretary, U.S. Department of Health and Human Services, expressing concerns regarding media reports involving directives at the Centers for Disease Control and Prevention (CDC) not to use certain words in FY 2019 budget documents and justifications, words such as evidence-based, science-based, vulnerable, diversity, and entitlement, to name a few.

H.R. 2123/S. 925, The Veterans E-Health & Telemedicine Support (VETS) Act of 2017 United Spinal, along with other disability organizations, signed onto a letter to the bipartisan leadership of Congress which introduced the Veterans E-Health & Telemedicine Support (VETS) Act of 2017 to improve the ability of veterans to access care via telehealth by relieving geographic restrictions on telehealth services and promoting access to high quality, coordinated care for all veterans, particularly those in rural areas. United Spinal is a member of the HealthIT Now Coalition which works on telemedicine initiatives at the national and state levels. Proposed Rule, Prosthetic and Rehabilitative Items and Services: This proposed rule would strike and replace Title 38, CFR 17.150, and update 17.3200-3250, by addressing vague and subjectively interpreted language regarding the feasibility and medical need of certain medical equipment and services for disabled veterans, as well as update the currently limited list of such services and items. Submitted comments regarding our support for efforts to improve current policy and benefit disabled veterans. S. 1318, Air Carrier Access Amendments Act: This bill is to amend Title 49 of U.S.C., Section 41705, by addressing the needs of disabled Americans, including veterans, traveling by air, including needed safety training for TSA staff and flight attendants, reasonable accommodations for Americans with spinal cord injuries and/or disease, and accessibility issues throughout the airline industry for such Americans. United Spinal's VetsFirst program sent a letter to the House Veterans Affairs Subcommittee on Economic Opportunity opposing proposed legislation which is designed to diminish the current approved and valuable training and education track for veterans. It would "liquidate" the GI bill and push veterans to end their benefit in 18 months, thus discouraging selection of aviation education programs at approved public universities. United Spinal's VetsFirst program sent a letter of support to Congresswoman Dina Titus (D-NV) specifically in support of her bill HR 3197, which puts an end to research practices at the Department of Veterans Affairs which do not lead to any positive outcomes for veterans. United Spinal's VetsFirst program signed onto a letter in support of S.1318, the Aircraft Carrier Access Amendments Act, and S.1405, the Federal Aviation Administration Reauthorization Act, which are both designed to expand access measures for disabled aircraft passengers, as well as training requirements for aircraft and TSA personnel in handling disabled passengers and their equipment. United Spinal co-wrote a letter to the Senate stating objections to amendments added to the National Defense Authorization Act bill on the Senate floor that would harm vital defense health research programs specifically initiated to help US soldiers who sustain traumatic brain (TBI) and spinal cord injuries (SCI). The letter was sent to the Senate Armed Services Committee.

Supported adequate administrative funding for SSA and opposed a substantial reduction in SSA's Limitation on Administrative Expenses (LAE) in Senate Labor, Health and Human Services,and Education and Related Agencies Appropriations bill for FY 2018.

United Spinal and the US Department of Labor, the Office of Disability Employment Policys (ODEP) are partnering on employment initiatives including with the State Exchange on Employment and Disability (SEED) program. United Spinal endorsed Department of Education's regulations implementing WIOA and with respect to the definition of competitive integrated employment.

Endorsed letter to Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education requesting full funding for the Assistive Technology Act. Met with bipartisan budget and appropriation committee leadership to urge continued federal funding for the Paralysis Resource Center at ACL. Endorsed letter on FY 2018 appropriations to the leadership of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies recommending that the FY 2018 Labor, HHS, Education, and Related Agencies appropriation bill provide necessary and sufficient funding for the various federal agencies supporting and conducting disability, independent living, and rehabilitation research to address the current and future needs for individuals with disabilities and society. We also recommend that the report accompanying the bill include language recognizing the critical importance of disability, independent living, and rehabilitation research.

Signed onto letters to Congress, and engaged in multiple Hill visits, opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Supports S. 910/H.R. 2472 - Disability Integration Act United Spinal endorsed H.Con.Res.80 - Expressing the sense of the Congress that assisted suicide (sometimes referred to as death with dignity, end-of-life options, aid-in-dying, or similar phrases) puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.

Met with DOT on wheelchair damage issues on airlines. Supports FAA Reauthorization including some disability specific sections. United Spinal supports Air Carriers Access Amendments Act, S.1318. Signed onto letter urging the House committee on Appropriations to protect funding for DOT programs impacting people with disabilities during FY18 negotiations.

Support VA Accountability Legislation to Enable VA Leaders to Manage Workforce Issues Effectively to Improve Healthcare Access for Veterans - HR 1259. Enhance Department of Veterans Affairs Vocational Rehabilitation and Employment Benefits Program. United Spinal and VetsFirst (a program of United Spinal Association, supports more pathways for veterans to become aviation maintenance technicians-- and expand their career opportunities. There is an FAA flight regulation (Part 147) that would be updated by a pending FAA regulation that actually updates training standards and would create a smoother pathway to expand maintenance training programs reflecting modern aircraft. H.R. 2123/S. 925, The Veterans E-Health & Telemedicine Support (VETS) Act of 2017 United Spinal, along with other disability organizations, signed onto a letter to the bipartisan leadership of Congress which introduced the Veterans E-Health & Telemedicine Support (VETS) Act of 2017 to improve the ability of veterans to access care via telehealth by relieving geographic restrictions on telehealth services and promoting access to high quality, coordinated care for all veterans, particularly those in rural areas. United Spinal is a member of the HealthIT Now Coalition which works on telemedicine initiatives at the national and state levels.

H.R. 750 The Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act will create a separate category for CRT within the Medicare DME benefit. H.R. 3730 - provides a permanent exemption from Medicare's competitive acquisition program for manual CRT and wheelchairs and related components(including endorsing a letter to Congress). United Spinal Association signed onto a letter to CMS spearheaded by Consumer Voice opposing a nursing home rule on pre-dispute arbitration agreements. The existing regulation is designed to ensure that a resident enters into an arbitration agreement only if he or she knows what is at stake and has made a conscious decision to choose arbitration. The proposed regulation, on the other hand, would lead to the routine use and enforcement of pre-dispute binding arbitration agreements that were signed when the resident knew nothing of the dispute that ultimately is arbitrated, and signed only because the resident had to agree to arbitration in order to be admitted. Nursing facilities would quickly institute policies requiring pre-dispute binding arbitration agreements from all incoming residents. CONGRESSIONAL AND CMS SUPPORT LETTERS United Spinal Association supports the Benefits Improvement and Protection Act (BIPA), (including Section 427) which urges CMS to ensure that Medicare beneficiaries continue to have access to quality prosthetic and custom-fabricated orthotic care provided by practitioners and suppliers with appropriate education, training and experience. Supports H.R. 3635 which is companion legislation to S. 794 which would help ensure basic procedural fairness in Local Coverage Determinations (LCDs), and thereby provide an important Medicare beneficiary protection that is often lacking in local coverage decisions. Signed onto a letter to HR 3178, the Medicare Part B Improvement Act: bill contains provisions addressing beneficiary access to care, including prosthetic & orthotics, home infusion, and ESRD issues. United Spinal Association, as part of the Coalition to Preserve Rehabilitation, shared concerns with Congress on limiting caps on therapy services and reviewing issues around pre- and post-payment review and complications of complex patients. Also opposed, as part of this coalition the Graham Cassidy proposal to repeal the ACA. Also submitted comments on this: (CMS-1672-P) Medicare and Medicaid Programs; CY 2018 Home Health Prospective Payment System Rate Update and Proposed CY 2019 Case-Mix Adjustment Methodology Refinements; Home Health Value-Based Purchasing Model; and Home Health Quality Reporting Requirements. Raised concerns related to Jimmo, therapy thresholds and billing timeframes.

Signed on to letter of support for the Stop Taxing Death and Disability Act of 2017. H.R. 1659/S. 405 Discussed the importance of direct mail in providing funding to non-profits and opposing restrictions on individual charitable giving.

Discussed consumer protections on biologics. The FDA released a draft interchangeability guidance that we support. It is a critical step on the path to providing safety and confidence. We continue to advocate for guidance on the interchangeability of biologic products as it is a necessity to ensure patient safety.

Discussed disability community concerns around improving accessibility. Non-Emergency Medical Transportation - opposed HR 1394 which amends Title XIX of the Social Security Act to provide States with flexibility with respect to providing coverage for non-emergency transportation under Medicaid. Support safety measures and facilitate policies regarding the development of autonomous vehicles for people with disabilities.

Support repeal of the medical device tax - HR 523 - Protect Medical Innovation Act. United Spinal, along with many groups representing patients, scientists, advocates, caregivers and health care professionals, urged Congressional leaders to make updating the oversight framework for all molecular diagnostic tests, including laboratory developed tests (LDTs), a priority early in the 115th Congress. The Food and Drug Administration needs to play a more visible role in oversight of LDTs.

Spoke with representatives of the CDMRP SCIRP program at the Department of Defense. The SCIRP focuses its funding on innovative projects that have the potential to make a significant impact on improving the function, wellness, and overall quality of life for military service members as well as their caregivers, families, and the American public. We support robust funding levels in the FY18 budget.

Discussed concerns regarding confirmation of Senator Jefferson Sessions as Attorney General relating to his view of the protection of civil rights. Signed onto letters to Congress opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Support HR 634 - the existence of the Election Assistance Commission - which provides the election administration and accessible resources at polling places.

Supported protecting non-defense discretionary funding. NDD programs serve many vital national needs but have been subject to repeated cuts over the past six years, including through the appropriations caps and sequestration process established by the 2011 Budget Control Act. Discussed and submitted an appropriation programmatic request for the Congressionally Directed Medical Research Program, Spinal Cord Injury Research Program (SCIRP). The SCIRP was established by Congress in FY09 with a $35 million appropriation to support research into regenerating/repairing damaged spinal cords and improving rehabilitation therapies. From FY10-15, Congress appropriated an additional $122.85 million to continue this research. Submitted report language to Congress to include in FY 2018 Appropriations regarding directing FDA to increase its efforts on educating patients surrounding biosimilars.

United Spinal signed on to testimony for the House Ways & Means Oversight and Social Security Subcommittees second joint hearing on SSAs representative payee program on Wednesday, March 22nd. The testimony pointed out, Millions of Social Security and SSI beneficiaries have payees, with the vast majority performing their duties admirably under difficult circumstances. However, a small percentage of payees have misused benefits and violated their fiduciary duties, and some have even abused beneficiaries.

Discussed current legislation authorizing Federal Aviation Administration programs expires in September of this year. Discussed the future of regulatory actions US Department of Transportation (US DOT) may take regarding issues that were part of last years negotiated rule making effort. United Spinal requested that future facilitators/contractors in regulatory negotiating committees should be qualified and able to fully communicate with the entire community, particularly those with various disabilities.

Discussed with DOL and the White House employment policy for people with disabilities, including finalizing and updating Section 501 of the Rehabilitation Act to ensure there are opportunities for personal assistance services for people with disabilities with a 12% recruitment goal for people with disabilities and a 2% recruitment goal for certain targeted disabilities at the federal government and ways to partner with DOL ODEP on the State Exchange on Employment and Disability program. Discussed with EEOC the recent final rule on the Rehabilitation Act's Section 501.

Oppose legalizing assisted suicide. Opposed the Death with Dignity Act. B21-0038

United Spinal, along with other organizations, signed onto a letter to the leadership of the Senate Committee on Finance and the House Ways and Means Committee concerning a second article in a Washington Post series on the Social Security disability programs-titled Generations, Disabled (June 4, 2017 print edition)- paints a misleading and inaccurate picture of these essential programs. Requested Senate Finance and House Ways and Means committees to call for a hearing to address the Social Security Backlog. There are more than 1.1 million Americans with disabilities waiting for a Social Security Disability Insurance hearing before an administrative law judge (ALJ). Nationwide, the average wait is 578 days and growing, and occurs after a 120- to 365-day wait through the previous two levels of the disability process. Then, after their hearing, claimants often wait an estimated 75 days on average for a decision to be handed down and for monthly benefit payments to begin.

Signed onto letter to Congress, and engaged in multiple Hill visits, opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Supports S. 910/H.R. 2472 - Disability Integration Act

United Spinal signed onto a letter to Congress, facilitated by the National Federation of the Blind, to ensure that any Congressional request for an increase to the minimum wage, include people with disabilities, as well. United Spinal and the US Department of Labor, the Office of Disability Employment Policys (ODEP) are discussing partnering opportunities with the State Exchange on Employment and Disability (SEED) program. As a member of the Disability and Rehabilitation Research Coalition (DRRC), United Spinal continues to participate in dialogue with agencies, members of Congress and administration officials about the development of the Interagency Committee on Disability Research (ICDR) government wide rehabilitation research plan. The Workforce Innovation and Opportunity Act (WIOA) (Public Law 113-128) requires the ICDR to develop a comprehensive government wide strategic plan for disability, independent living, and rehabilitation research. United Spinal signed onto a letter, facilitated by the Consortium of Citizens with Disabilities, addressed to Secretary Acosta, OMB Director Mulvaney and ccd to Chair Lipnic of the EEOC, voicing our opposition to the proposed budget transfer of the Office of Federal Contract Compliance Programs (OFCCP) from DOL to the EEOC.

H.R. 750 The Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act will create a separate category for CRT within the Medicare DME benefit. H.R. 1361/S486 - provides a permanent exemption from Medicare's competitive acquisition program for complex power and manual components and wheelchairs. As a member of the MapRx Coalition, United Spinal signed onto a letter to the Centers for Medicare and Medicaid Services, regarding ensuring safeguards in Medicare Part D regarding specialty tiers, protected pharmacy classes and out-of-pocket costs for beneficiaries. United Spinal wrote a letter to the Centers for Medicare and Medicaid Services (CMS) urging for separate coding options for titanium materials (makes for lighter wheelchairs/easier maneuverability) for wheelchairs if it is the beneficiarys choice. CMS issued a recent policy determination not allowing wheelchair providers to bill the beneficiary for titanium. United Spinal policy staff convened a meeting with senior personnel at CMS, along with PVA, National Multiple Sclerosis Society, Christopher and Dana Reeve Foundation and ITEM Coalition to discuss expanded access to CRT under Medicare; the seat elevation feature (which is not covered by Medicare), and titanium wheelchairs. Met with other personnel at CMS to discuss future delays of the competitive bidding program. United Spinal submitted a letter to CMS urging for discrete coding for hydrophilic (lubricated) catheters. United Spinal opposes any provision that expands the Medicaid Secondary Payer statute to allow for the Agency to collect funds from a judgment or settlement beyond what was provided for medical care is unfair and harmful to Medicaid beneficiaries and has submitted a letter to House and Senate. United Spinal supports S. 253/H.R. 807 - Medicare Access to Rehabilitation Services Act, which would protect Medicare beneficiaries from arbitrary limits on outpatient physical therapy, occupational therapy, and speech-language pathology services that are often needed to recover from debilitating illnesses, such as stroke, or support the effective management of conditions including SCI, multiple sclerosis and arthritis. Sent letter of support for the HR 2465/S 1132 Steve Gleason Enduring Voices Act of 2017 to revise the Steve Gleason Act of 2015 (114th Congress S. 984). United Spinal signed onto a similar letter, facilitated by the Center for Medicare Advocacy. The Steve Gleason Enduring Voices Act will remove the sunset date, currently identified in law as October 1, 2018. We seek this revision to prevent extremely vulnerable Medicare beneficiaries from ever again having to relinquish their only means of communication. By revising the Steve Gleason Act of 2015 to remove the sunset date, beneficiaries with ALS, MS, Parkinsons disease, paralysis, cerebral palsy and other debilitating conditions will be assured that Medicare coverage for speech generating devices (SGD) and related accessories will continue to be available.

Discussed options for United Spinal to be a potential grantee of the agencys Paralysis Resource Center. The PRC provides comprehensive information for people living with spinal cord injury, paralysis and mobility-related disabilities and their families. Resources include information and referral by phone and email in multiple languages including English and Spanish; a peer and family support mentoring program; a military and veterans program; multicultural outreach services; free lending library; quality of life grants; and a national website. The grant components and requirements may differ in upcoming grant announcements. United Spinal signed onto a letter facilitated by The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) and submitted to Members of Congress. The letter, in part, reads, "The chronic and rare disease and disability patient communities rely on FDA to ensure that innovative, safe, and effective treatments reach those in need. We thank Congress for moving forward with these critical funding mechanisms, [FDA user fess] and look forward to their swift and unimpeded passage." United Spinal helped draft a Congressional statement on the issue of biopharmaceuticals to ensure consumer protections. United Spinal also submitted questions to the Congress for the nomination hearing for FDA Commissioner nominee and provided report language to the Agriculture Committee on sufficient funding needs for appropriations. United Spinal participated in this multi-coalition Hill Day, (CPR/ITEM/HAB) on June 27 to highlight to Congress the importance of rehabilitation and habilitation benefits to be included in any health reform legislation. United Spinal signed onto a letter, led by NMSS, on the need for improved patient engagement at the U.S. Food and Drug Administration. United Spinal supports robust assistive technology funding for the Assistive Technology Act Programs; protecting Medicaid funds; supporting CRT (exempting CRT power and manual chairs and components from Medicares competitive bidding program - HR 1361/S. 486); the Medicare Demonstration of Coverage for Low Vision Devices Act of 2017, H.R. 2050 and support of Steve Gleason Enduring Voices Act, H.R. 2465/S.1132 - protection of speech-generating devices under Medicare. United Spinal signed on to multiple letters to Congress in opposition to Republican efforts to reform the ACA regarding limiting pre-existing conditions, removing essential health benefits and cut Medicaid. Opposes HR. 1628, AHCA, opposes BCRA. United Spinal sent a letter to Congress joining over 80 other groups voicing our opposition to H.R. 1215 the Protecting Access to Care Act of 2017. This bill would limit the legal rights of injured patients and families of those killed by negligent health care. The bills sweeping scope covers not only cases involving medical malpractice, but also cases involving unsafe drugs and nursing home abuse and neglect.

United Spinal supports extending accessibility rights in the proposed legislation: Bill 22-92, "Short Term Rental Regulation and Affordable Housing Protection Act of 2017. The legislation aims to regulate companies like Airbnb.

Meetings with Members of Congress and their staffs continue to discuss the Groups draft legislation for extending rights to the disability community in a long term Federal Aviation Administration (FAA) reauthorization bill. United Spinal signed onto a letter to the House Transportation and Infrastructure Committee Chairman, Rep. Bill Shuster in support of disability protections contained in recently introduced legislation extending Federal Aviation Administration programs. The House 21st Century AIRR Act, H.R. 4441,included three sections focused on aviation consumers with disabilities. The Senate's version of the FAA Reauthorization included some disability specific sections. United Spinal supports Air Carriers Access Amendments Act, S.1318.

Support VA Accountability Legislation to Enable VA Leaders to Manage Workforce Issues Effectively to Improve Healthcare Access for Veterans - HR 1259 Enhance Department of Veterans Affairs Vocational Rehabilitation and Employment Benefits Program (VRE) United Spinal wrote a letter to the VA urging for improved implementation of the Veterans Mobility Safety Act with uniform standards.

Discussed disability community concerns around improving accessibility. Non-Emergency Medical Transportation - opposed HR 1394 which amends Title XIX of the Social Security Act to provide States with flexibility with respect to providing coverage for non-emergency transportation under Medicaid. Support safety measures and facilitate policies regarding the development of autonomous vehicles for people with disabilities.

United Spinal signed on to testimony for the House Ways & Means Oversight and Social Security Subcommittees second joint hearing on SSAs representative payee program on Wednesday, March 22nd. The testimony pointed out, Millions of Social Security and SSI beneficiaries have payees, with the vast majority performing their duties admirably under difficult circumstances. However, a small percentage of payees have misused benefits and violated their fiduciary duties, and some have even abused beneficiaries.

Support repeal of the medical device tax - HR 523 - Protect Medical Innovation Act. United Spinal, along with many groups representing patients, scientists, advocates, caregivers and health care professionals, urged Congressional leaders to make updating the oversight framework for all molecular diagnostic tests, including laboratory developed tests (LDTs), a priority early in the 115th Congress. The Food and Drug Administration needs to play a more visible role in oversight of LDTs.

Discussed options for United Spinal to be a potential grantee of the agencys Paralysis Resource Center. The PRC provides comprehensive information for people living with spinal cord injury, paralysis and mobility-related disabilities and their families. Resources include information and referral by phone and email in multiple languages including English and Spanish; a peer and family support mentoring program; a military and veterans program; multicultural outreach services; free lending library; quality of life grants; and a national website. The grant components and requirements may differ in upcoming grant announcements. Opposed efforts to repeal and replace the Affordable Care Act with multiple letters to White House and to the Hill as well as Hill meetings and signed onto letters in support of protection of pre-existing conditions and essential health benefits. Support HR 750 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017 Support HR 1361/S. 486 - to protect access to complex rehab wheelchairs and essential components required by people with disabilities Support implementing what was passed into law as part of the 21st Century Cures Act - HR 292/S. 849 including ensuring robust funding. Support HR 807 and S. 253 - Medicare Access to Rehabilitation Services Act of 2017. Raised concerns with HR 1628- The American Health Care Act Provided comments to NIDILRR on their long-range plan regarding government-wide research to include adaptive fitness and nutrition. Continue to discuss NIH government research on disability and rehabilitation issues.

Discussed consumer protections on biologics. The FDA released a draft interchangeability guidance that we support. It is a critical step on the path to providing safety and confidence. We continue to advocate for guidance on the interchangeability of biologic products as it is a necessity to ensure patient safety.

Supported protecting non-defense discretionary funding. NDD programs serve many vital national needs but have been subject to repeated cuts over the past six years, including through the appropriations caps and sequestration process established by the 2011 Budget Control Act. Discussed and submitted an appropriation programmatic request for the Congressionally Directed Medical Research Program, Spinal Cord Injury Research Program (SCIRP). The SCIRP was established by Congress in FY09 with a $35 million appropriation to support research into regenerating/repairing damaged spinal cords and improving rehabilitation therapies. From FY10-15, Congress appropriated an additional $122.85 million to continue this research. Submitted report language to Congress to include in FY 2018 Appropriations regarding directing FDA to increase its efforts on educating patients surrounding biosimilars.

Discussed current legislation authorizing Federal Aviation Administration programs expires in September of this year. Discussed the future of regulatory actions US Department of Transportation (US DOT) may take regarding issues that were part of last years negotiated rule making effort. United Spinal requested that future facilitators/contractors in regulatory negotiating committees should be qualified and able to fully communicate with the entire community, particularly those with various disabilities.

Discussed concerns regarding confirmation of Senator Jefferson Sessions as Attorney General relating to his view of the protection of civil rights. Signed onto letters to Congress opposing the ADA Education and Reform Act H.R. 620 which would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA. Title III (public accommodations) was intended to balance the interests of small businesses along with the accessibility concerns of people with disabilities. Title III does not require any action with respect to existing buildings that would cause an undue burden on businesses or that is not readily achievable. Support HR 634 - the existence of the Election Assistance Commission - which provides the election administration and accessible resources at polling places.

Oppose legalizing assisted suicide. Opposed the Death with Dignity Act. B21-0038

Support S.3252 / H.R. 5779 Automatic Voter Registration Act of 2016

United Spinal continues to warn against switching individuals to different medications for non-medical reasons due to the fact that this could lead to potential adverse events. United Spinal signed onto a letter to the Food and Drug Administration highlighting our concerns.

Signed letter to Senate members urging the passing of Senate Resolution 703 designation of November 2016 as National Bladder Health Month in the United States. Sent letter to members of House Energy and Commerce Subcommittee on Health and Senate HELP committee voicing opposition to delays by FDA on key patient safety guidance on biosimilars. Advocated on H.R.6/H.R. 34 - 21st Century Cures Act including: supporting S.849, Advancing Research for Neurological Diseases Act of 2015 that would create a centralized data collection system and the Centers for Disease Control and Prevention to track and collect data on the epidemiology of neurological diseases. Supports S. 800 / H.R. 1631, Enhancing the Stature and Visibility of Medical Rehabilitation. Research at the NIH Act. Discussed quality measures for the SCI/D community and those living with Parkinson's, spina bifida, multiple sclerosis. Supports S.3252 / H.R. 5779 Automatic Voter Registration Act of 2016. Discussed some concerns with S. 2689 - REGROW Act.

United Spinal wrote a comment letter to the Food and Drug Administration, in response to the Medical Device User Fee Amendments, supporting its commitment to patient engagement and better collection of data to review adverse event reporting and an improved review of clinical data. United Spinal reached out to both the House and Senate to voice our opposition to the delays by FDA on key patient safety guidance on biosimilars. United Spinal worked with Patients for Biologics Safety and Access (PBSA) coalition to raise objections to newly announced delays in the completion of key biosimilar patient safety guidance.

Department of Labor Office of Federal Contract Compliance Programs Discussed corporate and federal issues surrounding the hiring and recruiting of people with disabilities. DOL's Office of Disability Employment Policy - provided input on hiring, recruitment and retention of people with disabilities. United Spinal signed onto a letter in support of making Section 501 of the Rehabilitation Act final.

Discussed uniform standards for the design of accessible parking placards for individuals with disabilities. United Spinal, along with numerous disability organizations, signed onto a letter offering comments to the US Department of Transportation's National Highway Traffic Safety Administration developing guidance on self-driving cars, supporting policy that balances the responsibility to keep Americas roads safe with the need to get and keep autonomous vehicles on public roads as quickly as it can be done safely. The letters recommendations included suggestions on a proposed 15-point safety assessment, accessibility, technical training and education assistance, input from the disability community, drivers licenses requirements, hosting a national conversation on liability and insurance issues and establishing a federal resource center. United Spinal public policy staff agreed to participate in a coalition on autonomous vehicles as it relates to the disability community.

Stated significant concern with the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act of 2014 that does not include a meaningful increase to the age requirement.

H.R. 3229/S. 2196 - H.R. 3229/S. 2196 to protect access to complex rehab wheelchairs and essential components required by people with disabilities. H.R. 1516/S. 1013 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015 that will create separate recognition for complex rehab technology. United Spinal opposes a proposal in the Presidents FY2017 Budget which expands the competitive bidding program to additional categories, including ostomy and urological supplies. Met with White House to discuss CRT. Support reauthorizing Money Follows the Person under Medicaid. Support protecting rehabilitative and habilitative services for people with disabilities. United Spinal Association joined the Alliance for Healthcare Security in a Preserving the Affordable Care Act (ACA) Advertisement, along with numerous non-profits, in an ad to Congress with the message: Repealing the Affordable Care Act without an immediate plan to replace it is a big risk - like walking off an unfinished bridge. TELL CONGRESS: DONT REPEAL HEALTHCARE WITHOUT A PLAN TO PROTECT OUR CARE.

United Spinal, along with other disability organizations, continues to encourage support and adequate funding in FY 2017 for the Transport DC accessible/subsidized taxi program. United Spinal wrote a letter to the Mayor of the District of Columbia, Mayor Bowser and the Council of the District of Columbia in opposition to B21-0038, the Dignity with Death Act of 2015

White House Technology and Disability Summit - helped plan and prepare summit with the White House. Participated in White House meeting on web accessibility.

Signed onto letter of opposition of ADA Education and Reform Act, S. 3446/H.R. 3765 which looked to roll back progress that was made for those protected under the ADA. Support S. 2427/H.R. 5689 - Disability Integration Act United Spinal opposes H.R. 4719: Correcting Obstructions to Mediate, Prevent, and Limit Inaccessibility Act or the COMPLI Act, H.R. 241: ACCESS (ADA Compliance for Customer Entry to Stores and Services) Act of 2015.

CIV - Civil Rights/Civil Liberties - Agency: Dept. of Justice - House and Senate HR 3765 and S. 3446 the ADA Education and Reform Act, sent a letter to the House and Senate in opposition to this legislation. Spoke with the Government and Accountability Office regarding voter accessibility at polling locations throughout the nation. GAO contacted United Spinal for data regarding the issues people with disabilities face at the polls. Support The Disability Integration Act - S. 2427/ H.R. 5689 - To prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes. United Spinal signed on to a letter to Congress in support of reauthorizing Money Follows the Person (MFP). MFP provides assistance, support and funding to help individuals with intellectual and developmental disabilities, individuals with physical disabilities, and older adults who want to transition to their own homes or a community residence instead of living in a facility. Since 2005, the program has assisted more than 51,000 people move out of institutions. United Spinal signed on to a comment letter to the US Department of Justice regarding the Supplemental Advance Notice of Proposed Rulemaking titled, Nondiscrimination on the Basis of Disability; Accessibility of Web Information and Services of State and Local Government Entities: United Spinal has been and will continue to be committed to ensuring people with disabilities have full accessibility to Web information. Therefore, we would be remiss to not mention the disappointment our membership feels regarding the delay in issuing rules for web accessibility while the world of the internet continues to expand without a clear directive to be accessible, especially for the Title II covered entities.

United Spinal helped compose a letter of thanks with other disability groups sent to Congressional Committee leadership for including disability access provisions in the extension of the Federal Aviation Administrations programs through September 2017.

HR 3229/S. 2196 To amend title XVIII of the Social Security Act to provide for the non-application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. Spoke with Rep. Jared Polis district staff member regarding casework for a United Spinal member. H.R. 1516/S. 1013 Amends title XVIII (Medicare) of the Social Security Act to cover, as medical and other health services, complex rehabilitation technology (CRT) items designed or individually configured for a specific qualified individual to meet that individual's unique: (1) medical, physical, or functional needs related to a medical condition; and (2) capacities for basic activities of daily living (ADLs) or instrumental ADLs. A proposal in the Presidents FY2017 Budget expands the competitive bidding program to additional categories, including ostomy and urological supplies. This decision will limit access to prosthetic supplies which need to be clinically prescribed, selected, and/or adjusted and fitted for individuals by specially trained health care professionals based on the unique medical and physical needs of each person in relation to their disease or condition. The incorrect catheters or ostomy supplies can put individuals at risk of severe skin damage, infection, hospitalization and possibly death. Since ostomy and urological medical supplies restore the lost functions of waste storage and elimination, they are defined in the Social Security Act as prosthetics. United Spinal signed onto a letter, led by the Center for Medicare Advocacy, to the Centers for Medicare and Medicaid Services highlighting the problems with access to durable medical equipment (such as wheelchairs and other assistive technology and medical equipment that can be used in the home) when individuals are dual-eligibles - that is, on Medicare and Medicaid. There continues to be a misalignment of payment procedures in Medicare and Medicaid resulting in denials, delays, and higher than appropriate health care costs for essential DME among dually eligible beneficiaries. United Spinal supports the recommended solution which requires state Medicaid agencies, as is the law in Connecticut, to process prior authorization requests for DME for Medicaid beneficiaries whether or not they also are on Medicare. United Spinal signed onto a letter to the House in support of H.R. 5721, the Local Coverage Determination Clarification Act. This important legislation would help ensure basic procedural fairness in Local Coverage Determinations (LCDs), and thereby provide an important Medicare beneficiary protection that is often lacking in local coverage decisions. Competitive Bidding Letter United Spinal signed on to a letter to the Centers for Medicare and Medicaid Services (CMS) supporting competitive bidding reforms including the requirement of DME provider state licensure; the letter states its opposition to the competitive bidding programs limits on choice, access and quality of durable medical equipment. Negative Pressure Wound Therapy United Spinal signed onto this CMS letter which focused on the proposal to implement the newly created statutory benefit to pay home health agencies separately for disposable negative pressure wound therapy. In general, the letter supports the Centers for Medicare and Medicaid Services (CMS) proposal implementing the new statutory benefit to ensure patient access to this important therapy. United Spinal signed onto and helped draft a letter to the Centers for Medicare and Medicaid Services opposing charging people with mobility impairments an extra payment for physician time. PAC VBP United Spinal signed onto this written statement on the Medicare Post-Acute Care Value-Based Purchasing Act of 2015 (H.R. 3298) regarding Medicare Spending per Beneficiary (MSPB) measure. MSPB is an economic measure to assess Medicare utilization and is used to ascertain the productivity of a provider within a given setting, or a type of provider compared to another type of provider. The letter states that the PAC-VBP program should not measure MSPB without simultaneously measuring quality, function, and quality of life outcomes so that the Medicare program knows what it is getting for its payments to providers. ICD-10 United Spinal Association, and other stakeholders, requested an in-person meeting to discuss the unintended consequences of ICD-10 conversion on access to inpatient rehabilitation hospitals and units (IRFs) for Medicare beneficiaries with brain injuries and select orthopedic conditions, and to explore possible remedies to this problem. MPFS 2017 and OPPS 2017 United Spinal signed onto a couple of letters to the Centers for Medicare and Medicaid Services on related to various health IT provisions ensuring better protections of chronic care management services and streamlining tools for advanced imaging services.

Testified at the Food and Drug Administration July 12th Arthritis Advisory Committee to oppose the biologics license application 761024, for ABP 501, a proposed biosimilar to AbbVie Inc.'s HUMIRA (adalimumab), submitted by Amgen, Inc. Read testimony at the Food and Drug Administration July 13th Arthritis Advisory Committee to oppose biologics license application 761042, for GP2015, a proposed biosimilar to Amgen Inc.s ENBREL (etanercept) submitted by Sandoz, Inc. Support H.R. 1631/S. 800 Enhancing the Stature and Visibility of Medical Rehabilitation Research at NIH Act: To improve, coordinate, and enhance rehabilitation research at the National Institutes of Health. Support S.849, Advancing Research for Neurological Diseases Act of 2015 that would create a centralized data collection system and the Centers for Disease Control and Prevention to track and collect data on the epidemiology of neurological diseases. United Spinal Association signed onto a bill, introduced by Sen. Ed Markey (D-MA), Sen. John Cornyn (R-TX), Sen. Rob Portman (R-OH), and Sen. Michael Bennet (D-CO), S. 3130, legislation which establishes an independence at home medical practice program. This program would be directed by physicians, nurse practitioners, or physician assistants; and emphasize home-based care that is designed to reduce expenditures and improve health outcomes in the provision of items and services to applicable beneficiaries. The goal of the legislation is to garner support for the concept of converting the successful Independence at Home (IAH) demonstration into a nationwide program.

Special Needs Trust Fairness Act of 2015/HR 670 United Spinal signed on to a letter to the U.S. House of Representatives Energy and Commerce Committee thanking the committee for bringing H.R. 670, the Special Needs Trust Fairness Act of 2015, for a vote before the Energy and Commerce Committee. This legislation corrects an error in the law that prevents capable individuals with disabilities from creating their own special needs trusts. United Spinal signed onto letters to both the House and Senate articulating substantial concern with the movement of any legislation related to the Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014 (ABLE Act) that does not include a meaningful increase to the age requirement within the eligibility criteria of the law. United Spinal cannot support, and will oppose, regardless of merit, movement of any legislation that aims to increase the benefits of currently eligible individuals, while ignoring the needs of individuals with disabilities solely based on the age when that individual first experienced their disability.

United Spinal joined other disability organizations in signing onto a letter to the Social Security Administration (SSA) about a proposed rule for Social Security claimants addressing Evidence From Statutorily Excluded Medical Sources. The rule is intended to comply with Section 812 of the Bipartisan Budget Act of 2015, which requires the Social Security Administration (SSA) to exclude evidence furnished by certain individuals or entities, except for good cause as determined by the Commissioner. The letter reads in part: We recognize the importance of relying on credible medical evidence from trustworthy medical providers when determining whether an individual meets the definition of disability. We are pleased that SSA also recognizes that not all evidence that is provided by excluded providers is unreliable and is proposing good cause exceptions to permit consideration of otherwise excluded evidence. Expedited Reinstatement and Unsuccessful Work Attempt United Spinal joined other disability organizations and signed on to joint comments from CCDs Social Security and Employment and Training Task Forces in response to the NPRM issued by SSA to make improvements to the expedited reinstatement and unsuccessful work attempt work incentives. The letter reads in part: Both CCD Task Forces have long advocated for simplifying the SSDI and SSI program rules regarding work. The work incentives in these programs are complex and can be confusing to beneficiaries and their families. We applaud the Social Security Administration (SSA) for proposing changes to make the unsuccessful work attempt (UWA) and expedited reinstatement (EXR) rules simpler and easier to understand. The proposed changes will help beneficiaries comprehend and use the rules, thereby encouraging and supporting attempts to work.

United Spinal signed on to a letter to the Mayor of the District of Columbia to encourage support and adequate funding in FY 2017 for the Transport DC accessible/subsidized taxi program.

Signed on to a joint letter of support of the National Defense Authorization Act for FY 2017, HR 4909, provision advocating protecting victims of military sexual trauma from non-disability mental health discharges from the military that give them other than honorable discharges - House and Senate HR 5620 Sent a letter of support to amend title 38, United States Code, to provide for the removal or demotion of employees of the Department of Veterans Affairs based on performance or misconduct, and for other purposes - House HR 5128 & S 3141 Protection & Advocacy for Veterans Act. Sent a letter of support of this legislation - a VA grant to improve the monitoring of mental health & substance abuse treatment programs of the Department of Veterans Affairs. - House and Senate Sent a letter for the Congressional record to VA Transportation & Infrastructure subcommittee requesting that they fund VA leases for VA medical facilities - House and Senate National Defense Authorization Act FY 2017, HR 4909 United Spinal signed onto a letter to the House and Senate Armed Services Committee regarding the FY 2017 National Defense Authorization Act (NDAA) opposing weakened provisions regarding the federal contractors that have violated Section 503 of the Rehabilitation Act of 1973, Vietnam Era Veterans Readjustment Assistance Act of 1974 (VEVRAA) - both of which address the recruiting and hiring of people with disabilities and veterans and other civil rights or labor laws when they bid on contracts. This provision is limited to contractors that have actually been debarred. This letter from the CCD Employment, Rights, and Veterans Task Forces urges the Armed Services committee leadership in both houses to remove the weakened provision. Doing so would hold federal contractors accountable for disability discrimination and discrimination against veterans (as well as violations of other laws).

Sent a letter on borrower defense for repayment of student loans to the Secretary of Education. United Spinal, along with other disability organizations, signed onto comments to the Department of Education, in response to the U.S. Department of Educations proposed rule implementing programs under Title I of the Every Student Succeeds Act (ESSA) that could address the inherent problem for students with disabilities in the shift to digital educational assessments. New digital assessment platforms may increase (rather than decrease) access barriers and penalize students with disabilities by forcing them to learn new built-in access features (e.g. text-to-speech system, magnification technology, etc.) rather than using their own assistive technologies (AT). The letter reads in part: All of these situations are avoidable if assessments are developed consistent with a nationally accepted accessibility standard. If the assessment is not digital, a nationally recognized accessibility standard could be the National Instructional Materials Accessibility Standard (NIMAS). Requiring assessments be developed consistent with a nationally recognized accessibility standard will enable students with disabilities to use the AT that they regularly use to access instruction and the general education curriculum to demonstrate proficiency on assessments. United Spinal signed on to a comment letter to the US Department of Educations recently issued Guidance on Virtual Schools: Given the Department of Educations Office of Civil Rights recent actions enforcing web content accessibility requirements (citing WCAG 2.0 in resolution agreements) .. the Department should be proactively addressing the issue of accessibility of online content in any guidance or request for proposals (RFP) issued. . [United Spinal] looks forward to this discussion, but also asks that the Department immediately consider including verbiage on ensuring full accessibility to digital content, when applicable, in further publications and information issued from the Department of Education.

United Spinal submitted testimony to House and Senate Appropriations Committees to ask for increased funding for the more than 57 million Americans with disabilities in the HHS appropriations for the Centers for Independent Living (CILs) - an increase in funding of $200 million, for a total of $301 million for the Independent Living line item in FY 2017. United Spinal signed onto a letter, as in years past, to House and Senate Labor/HHS/Education Appropriations Subcommittees in support of increased funding for the Lifespan Respite Care Program and the National Family Caregiver Support Program in FY 2017.

Supports H.R. 1516/S. 1013 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015 - Creates a separate benefit under Medicare for complex rehab technology. Supports H.R. 3229/S. 2196 - This bill amends title XVIII (Medicare) of the Social Security Act to prohibit the application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. (A competitive bidding program has replaced the use of established fee schedule amounts to determine payments under Medicare for certain durable medical equipment such as wheelchairs.) Conducted a Congressional Expo and Briefing on HR 1516/S. 1013 and H.R. 3229 and S. 2196 and educated Congress and the Government Accountability Office on the differences between manual and power CRT. United Spinal, as one of several consumer and disability stakeholders, raised concerns with the Administration for Community Living and the Centers for Medicare and Medicaid Services on access to durable medical equipment as urological and ostomy supplies with the expansion of competitive bidding under Medicare. United Spinal, in collaboration with United Spinals Urology Coalition, opposes expanding Medicares competitive bidding program to urology and ostomy supplies, as laid out in the Presidents Budget. United Spinal also sent a consumer and clinician letter to the committees of jurisdiction opposing the expansion. Part B Demonstration United Spinal signed onto two separate letters led by the Partnership to Improve Patient Care and the MS Coalition, to the Centers for Medicare and Medicaid Services opposing tying payment of drugs to cost-effectiveness. In early 2016, several bipartisan and nonpartisan organizations, including the Bipartisan Policy Center and the Long-Term Care Financing Collaborative, released reports on a path forward for future financing of our nations long-term care needs. The problem is clear: while our nation is aging and people are living longer with disabilities and chronic conditions, we lack a coherent plan on how to provide for their care and supports. Our current financing system relies almost entirely on Medicaid and unpaid family caregivers, both of which thwart family financial planning and hinder the economic opportunities of women, people of color, and people with disabilities. The Consortium for Citizens with Disabilities (CCD) Long-Term Services and Supports Task Force of CCD released a statement, which United Spinal endorsed, to weigh in on the recent reports on long-term care financing, express our support for Medicaid improvements, and support the emerging consensus on the need for a public insurance program. United Spinal signed onto an ITEM Coalition letter in support of HR 5210, the Protecting Patient Access to Durable Medical Equipment Act to Secretary Sylvia Burwell of the Department of Health and Human Services. This letter urged the Centers for Medicare and Medicaid Services (CMS) to extend the current six-month phase-in of modified payment for durable medical equipment, prosthetics, orthotics, and supplies (DMEPOS) for an additional 12 months to avoid disruption in care to beneficiaries. United Spinal is working on increasing coverage for powered exoskeleton devices and on a Congressional advocacy campaign to make Congress aware of research showing benefits to SCI individual in the use of these devices and to help powered exoskeleton devices gain and maintain regulatory approvals and additional insurance carrier recognition.

United Spinal is working with the White House to plan a White House Summit on Technologies for individuals with disabilities. The Summit is expected to be held this summer. United Spinal has met with the White House to discuss web accessibility issues for people with disabilities.

United Spinal and other disability stakeholders met with the White House to discuss employment issues for people with disabilities including disabled veterans from the AbilityOne program (alleged fraud related to the requirement that 75% of federal contractors employees must be people with significant disabilities is not being adhered to and the steering of contracts is also occurring) to hiring and recruitment of people with disabilities across the federal government. United Spinal provided recommendations to DOL on the issue of federal regulations on the hiring and recruitment of people with disabilities across the federal government related to the release of contractor data on existing affirmative action plans, which has been a government recommendation since March 2014. United Spinal met with the AbilityOne Commission to discuss the AbilityOne program which is established to hire and recruit individuals with disabilities.

United Spinal supports S. 2427 - the Disability Integration Act which ensures that people with disabilities have the right to choose where they live in the community. United Spinal signed onto letters to the leadership of the House Judiciary Subcommittee on the Constitution and Civil Justice opposing three bills that would prohibit individuals with disabilities aggrieved by certain public accommodation violations from commencing a civil action for discrimination unless they provide additional written notification to owners or operators of public accommodations. The bills also provide owners and operators additional periods of time (up to 90 days in some instances) to take corrective action. H.R. 4719: Correcting Obstructions to Mediate, Prevent, and Limit Inaccessibility Act or the COMPLI Act - Sponsored by: Representative Jerry McNerney (D-CA). H.R. 241: ACCESS (ADA Compliance for Customer Entry to Stores and Services) Act of 2015 - Sponsored by Representative Ken Calvert (R-CA). H.R. 3765: ADA Education and Reform Act of 2015 - Sponsored by Representative Ted Poe (R-TX). United Spinal attended a meeting with AbilityOne, along with other members of the National Disability Leadership Alliance and as co-chair to the National Disabilities Leadership Alliance - Employment Team. United Spinal and others, explained the 7 principles of reform of the AbilityOne program in detail, namely: commitment to the expressed integration mandate set forth by the Supreme Court of the United States in the case of Olmstead v. L.C; implementation and development of best practices for employment of people with significant disabilities; elimination of conflicts of interest that contribute to exploitation, fraud, and abuse; payment of prevailing wages and the elimination of subminimum-wage payments; ensuring financial and operational transparency and accountability; better defining relationship with employer; prioritizing awarding of contracts available through the procurement process to disability-owned businesses, including self-employed individuals with disabilities. United Spinal signed onto a letter to the Equal Employment Opportunity Commission on Section 501 of the Rehab Act (nondiscrimination and affirmative action for federal employment of people with disabilities). We believe that some aspects of the rule must be strengthened. For example, the employment goals for employment of individuals with disabilities and targeted disabilities are too low, and the need for agencies to have a centralized accommodation fund is critical. Recruitment efforts must include formal linkage agreements with disability organizations as well as state disability service systems and vocational rehabilitation agencies, and must focus on people with targeted disabilities (including people who use supported and customized employment services) as well as people with disabilities more generally. Personal services enabling people with significant disabilities to work should include not just attendant care but also supported employment services that are critical for many people with intellectual and significant psychiatric disabilities to maintain employment.

United Spinal sent a letter of support to the Patient-Centered Outcomes Research Institute in support of an Engagement Award for Research Meeting Conference Support titled, "Defining Diverse Perspectives on Research Priorities in Multiple Sclerosis." The proposal outlines how CMSC will engage a number of patient advisory groups to explore three primary aims: identify important research areas and priorities for both patients and health care providers assess the patient reported outcomes used to evaluate the research areas of high priority investigate the feasibility and potential framework for a patient research assessment panel

Ensuring Access to Quality Representation for Social Security Disability Applicants addresses difficulties in keeping lawyers representing disabilities community. The request reads in part, We therefore ask you to exercise your authority to increase the fee cap to $6904, which matches SSAs Cost of Living Adjustments (COLAs) since 2009. We also encourage you to put procedures in place to ensure that the fee cap is updated on a more consistent and regular basis, such as automatically increasing it annually by an amount that is no less than the applicable COLA for that year. We appreciate your commitment to improving the Social Security disability determination process and believe that ensuring adequate representation for claimants is an important part of creating and maintaining a fair and efficient system. Action: United Spinal signed onto a letter with other disability organizations to Acting SSA Commissioner Colvin expressing support for increasing the cap on fees that representatives can receive for representing applicants for SSDI and SSI benefits. United Spinal signed on to a letter to appropriators requesting adequate funding for the SSAs FY2017 administrative budget. Employee Retirement Income Security Act of 1974 (ERISA) ERISA is a federal law that sets minimum standards for most voluntarily established pension and health plans in private industry to provide protection for individuals in these plans. United Spinal signed onto comments in response to regulations released by the Employee Benefits Security Administration to revise and strengthen the ERISA claims procedures for claimants for disability benefits under private insurance claims.

United Spinal supports H.R. 292/S.849 - Advancing Research for Neurological Diseases Act of 2015. This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases. United Spinal supports S. 800/H.R. 1631 - Enhancing the Stature and Visibility of Medical Rehabilitation Research at the NIH Act which better coordinates rehabilitation and disability research at the NIH. S. 2689 REGROW Act: Met and worked with Sen. Mark Kirks office on language edits to this bill. Participated in a roundtable discussion with Sen. Kirks office along with several other organizations regarding the REGROW Act which sets up an expedited process to get therapies to market. United Spinal, along with the Disability Research and Rehabilitation Coalition, have identified some gaps in the Interagency Committee on Disability Research (ICDR), defining the need for a comprehensive government wide strategic plan for disability, independent living, and rehabilitation research and has shared these comments with appropriate government officials at NIH (including the NIH Research Plan on Rehabilitation) and NIDILRR. As a member of Patients for Biologics Safety and Access, United Spinal is working to educate Congress on the needs for patient protections on pharmaceuticals and better guidance from the Food and Drug Administration on patient use of biosimilars. HR 5009 - Ensuring Patient Access to Critical Breakthrough Products Act of 2016 United Spinal endorses this legislation and signed on to a Congressional House letter in support. This bill provides prompt access to breakthrough diagnostics and treatments. United Spinal Association submitted comments to FDA regarding biologics license application 761024, for ABP 501 (Humira).

United Spinal supports Ensuring Access to Quality Representation for Social Security Disability Applicant - in a coalition letter to SSA expressing our support for raising the cap on fees that representatives can earn using the fee agreement when representing applicants for Social Security Disability benefits (Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs) and for putting in place procedures to ensure more regular and consistent increases in this fee cap to keep pace with inflation moving forward. Employee Retirement Income Security Act of 1974 (ERISA) ERISA is a federal law that sets minimum standards for most voluntarily established pension and health plans in private industry to provide protection for individuals in these plans. United Spinal signed onto comments in response to regulations released by the Employee Benefits Security Administration to revise and strengthen the ERISA claims procedures for claimants for disability benefits under private insurance claims.

Support H.R. 292/S. 849 - Advancing Research for Neurological Diseases Act of 2015. Wrote a letter to CDC advocating for a Traumatic Brain Injury (TBI) survey. United Spinal signed onto Senate Health Education Labor and Pensions comment letter, facilitated by the HEALTH IT Now Coalition, of which United Spinal is a member, supporting expanded use of telehealth for individuals living with stroke and for expanded prediabetes education. United Spinal is actively engaged in ensuring improved access to, and education of, all prescription drugs including biologic pharmaceuticals (organic compounds used to treat individuals with MS, SCI etc.) and has requested additional meetings with personnel from the U.S. Food and Drug Administration. United Spinal supports S.849 - Advancing Research for Neurological Diseases Act of 2015. This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases. United Spinal supports S. 800/H.R. 1631 - Enhancing the Stature and Visibility of Medical Rehabilitation Research at the NIH Act which better coordinates rehabilitation and disability research at the NIH. The Disability and Rehabilitation Research Coalition (DRRC), of which United Spinal is a member, offered comments in a letter to the Administration for Community Living, U.S. Department of Health and Human Services, on the proposed rule entitled, National Institute on Disability, Independent Living, and Rehabilitation Research. The proposed rule would implement the Workforce Innovation and Opportunity Act of 2014 which made significant changes to Title II (Research) of the Rehabilitation Act of 1973. It would also move NIDILRR from the Department of Education to the Department of Health and Human Services (Administration for Community Living). United Spinal submitted comments to the FDA Arthritis Advisory Committee meeting to raise concerns about a Remicade-luck drugs and the effects of ankylosing spondylitis.

Supports H.R. 1516/S. 1013 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015 - Creates a separate benefit under Medicare for complex rehab technology. Supports H.R. 3229/S. 2196 - This bill amends title XVIII (Medicare) of the Social Security Act to prohibit the application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. (A competitive bidding program has replaced the use of established fee schedule amounts to determine payments under Medicare for certain durable medical equipment such as wheelchairs.) Supports S. 2425 - Patient Access and Medicare Protection Act - A bill to amend titles XVIII and XIX of the Social Security Act to improve payments for complex rehabilitation technology and certain radiation therapy services, to ensure flexibility in applying the hardship exception for meaningful use for the 2015 EHR reporting period for 2017 payment adjustments, and for other purposes. Discussed with CMS, ACL and GAO concerns as it relates to access to durable medical equipment and complex rehab technology and accessories under Medicare's competitive acquisition program. Discussed with CMS consumer access problems with Medicare's competitive bidding program. United Spinal submitted comments to the Centers for Medicare and Medicaid Services regarding Medicaid access to covered services. United Spinal signed onto a comment letter to entities in the Federally-Facilitated Marketplaces, seeking to offer qualified health plans (QHPs), including stand-alone dental plans (SADPs), in the Federally-facilitated Marketplaces (FFMs) or the Federally-facilitated Small Business Health Options Programs (FF-SHOPs) with operational and technical guidance for the disability population. United Spinal opposes the provision in the FY2017 Presidential Budget to provide authority to expand competitive bidding for certain durable medical equipment specifically: ostomy and urological supplies. United Spinal commented to CMS on the issue of discharge planning for hospitals, critical access hospitals, and home health agencies. This proposed rule would revise the discharge planning requirements in order to participate in the Medicare and Medicaid programs. United Spinal signed onto a letter to CMS opposing the same reimbursement to Medicare from skilled nursing facilities as well as in-patient rehab facilities and units (IRFs). United Spinal also edited and endorsed a letter from Congressman G. T. Thompson (R-PA) to the Centers for Medicare and Medicaid Services to urge Medicare Advantage plants to follow Medicare criteria Medicare IRF coverage criteria when determining coverage for IRF care. United Spinal signed onto a comment letter to the Centers for Medicare and Medicaid Services (CMS) regarding the Summary of Benefits and Coverage, the Uniform Glossary of Medical Terms. United Spinal signed onto a letter to MedPAC on Medicare Part D cost sharing for LIS and dual eligible beneficiaries. Generic Utilization is already high in both LIS and non-LIS populations and higher cost sharing for branded products could reduce adherence, increase spending on other health care services in Medicare/Medicaid.

United Spinal signed on to a letter to the Federal Communications Commission, in support of the Lifeline Program which facilitates wider access to telecommunications services that are necessary for disabled Americans to stay connected and participate in society. The wireless voice services provided by Lifeline have been critical in allowing Americans with disabilities to stay connected with their families, access health care services, seek employment and educational opportunities and to have the peace of mind to be able to call for help in emergencies. Action: United Spinal signed onto a letter to the Federal Communications Commission not to adopt policies that would disenfranchise current Lifeline participants but instead allow current participants to choose between continuing to receive wireless voice service or to receive broadband instead. This position is consistent with both the position taken in the February 10 letter, to which United Spinal was a signatory and that of the Obama Administration in comments recently filed with the FCC on this matter by the National Telecommunications and Information Administration.

United Spinal supports S. 2427 - the Disability Integration Act. United Spinal opposes ADA Notification bill, HR 3765. Disability community stakeholders, including United Spinal Association, TASH, National Council on Independent Living and National Disability Rights Network met with the Civil Rights Division of the Department of Justice to discuss alleged fraudulent activity by the AbilityOne program and next steps related to the hiring, employing and recruiting of people with significant disabilities. The AbilityOne program provides employment opportunities to more than 45,000 people with significant disabilities including 3,000 veterans. The program is among the largest providers of jobs for individuals who are blind or who have significant disabilities. United Spinal signed on to comments to the Administration on Community Living in response to their draft Adult Protective Services Consensus Guidelines. The comments suggested the rules clarify standards and accessibility requirements, make the client the center of decision making, ensure there are appropriate numbers of experienced caseworkers, and emphasize the importance of working with protection and advocacy and developmental disability agencies. United Spinal signed on to a letter to Congress, opposing HR 2646, Helping Families in Mental Health Crisis Act of 2015.

United Spinal and other disability stakeholders met with the White House to discuss employment issues for people with disabilities including disabled veterans from the AbilityOne program (alleged fraud related to the requirement that 75% of federal contractors employees must be people with significant disabilities is not being adhered to and the steering of contracts is also occurring) to hiring and recruitment of people with disabilities across the federal government. United Spinal provided recommendations to DOL on the issue of federal regulations on the hiring and recruitment of people with disabilities across the federal government related to the release of contractor data on existing affirmative action plans, which has been a government recommendation since March 2014. United Spinal met with the AbilityOne Commission to discuss the AbilityOne program which is established to hire and recruit individuals with disabilities.

United Spinal signed onto a letter to Congress supporting HR 3516 which opposes President Obamas Executive actions and prohibits the Social Security Administrations (SSA) Representative Payee database to feed the names of people with psychiatric disabilities requesting assistance in managing their financial affairs into the National Instant Criminal Background Check system to prevent firearms purchases.

Transportation Research Board (TRB) Annual Meeting United Spinal attended the 2016 annual meeting of the TRB. United Spinal raised accessibility issues in workshops, and spoke with US Department of Transportation (USDOT) officials, and transit agency officials from Boston and Dallas, and national academics regarding taxis, equity and accessible TNCs. United Spinal spoke with a convener appointed by the USDOT about the possibility of a negotiated regulations (Reg Neg) rulemaking for the Air Carrier Access Act. The Reg Neg process would pull together industry stakeholders and members of the disability community to discuss potential regulations regarding: accessible in-flight entertainment, access to in-flight medical oxygen, service animals, accessible lavatories on new single aisle aircraft, classes of service for purposes of seating accommodations, and airline reporting requirements. United Spinal signed on to, and weighed in on, comments to the USDOT proposed Reg Negs drafted by PVA. The letter suggested that, should the USDOT choose to adopt a Reg Neg process through a committee, USDOT: ensure broad representation of the disability community on the committee and any working groups; ensure participation from the US Access Board on the committee so that they may share their technical expertise regarding accessibility standards; ensure that the framing of the discussions is geared towards prioritizing the civil rights of persons with disabilities. The letter also urged USDOT to consider that: there is a need to address current requirements for individuals who require emotional support and psychiatric service dogs; and to broaden the scope of passengers who must be afforded seats with extra leg room. United Spinal participated in a discussion with the Amtrak Government Affairs and Engineering staff with other disability stakeholders on issues related to progress and plans towards compliance with the ADA. Air Carrier Access Act update / Federal Aviation Administration (FAA) Reauthorization By July 15th, Congress must reauthorize funding and establish priorities for the Federal Aviation Administration (FAA), which is tasked with ensuring safety across all aviation sectors and operating an efficient air traffic control system. Action: A short term measure extending FAA programs until July 15, 2016 was enacted into law providing Congress time to work on a longer term reauthorization. United Spinal has been participating in a coalition of disability organizations to craft legislative language updating the provisions of the ACAA that could be included in a future long term FAA reauthorization. United Spinal signed onto a letter thanking the Senate Commerce Committee in appreciation of their efforts

United Spinal Association signed onto a letter, facilitated by the National Academy of Elder Law Attorneys, to Department of Housing and Urban Development, out of concern that public housing authorities (PHAs) and other rental assistance program administrators are interpreting national HUD policy to be that all distributions from special needs trusts are income for HUD rental assistance programs. The letter stated that HUD rules, in light of special needs trust law and policy, require that distributions from special needs trusts not be counted as income. Support H.R. 3975, the Veterans Homebuyer Accessibility Act - The bill would authorize a veteran first-time homebuyers tax credit equal to 10 percent of the purchase price of the residence and an adaptive housing credit of up to $8,000 for veterans to address structural and other changes to their home to accommodate their disabilities.

Submitted comments to CMS requiring better clarification of resident rights and person-centered planning needs. United Spinal signed onto a letter of support for the nomination of Henry Claypool to serve as a Commissioner on the Medicaid and CHIP Payment and Access Commission (MACPAC). United Spinal signed onto a letter of support to CMS regarding Section 1557 and nondiscrimination towards people with disabilities in health programs and activities including the ACA regarding the enrollment of people with disabilities and the availability of plans and services for the disability community. Transition to Independence Act (S. 1604) United Spinal Association supports the Transition to Independence Act (S. 1604), introduced by Senator Charles Grassley (R-IA) and signed onto a Consortium for Citizens with Disabilities letter. This bill directs the Secretary of Health and Human Services to establish a demonstration program over five fiscal years, beginning with FY2017, under which a Medicaid Buy-In-State program meeting certain criteria may receive bonus payments for: meeting specific measurable benchmarks in expanding individual integrated employment and reducing subminimum wage work, congregate setting work, or facility-based day habilitation placements for working-age individuals with a disability receiving Medicaid-funded home or community-based services; and taking other actions conducive to expanding employment opportunities for individuals with disabilities within the state. United Spinal signed onto a letter to CMS in support of protecting and improving access to electronic health records - Medicare and Medicaid Programs: Electronic Health Record Incentive Program. Support H.R. 3229/S. 2196 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015 Amends title XVIII (Medicare) of the Social Security Act to cover, as medical and other health services, complex rehabilitation technology (CRT) items designed or individually configured for a specific qualified individual to meet that individual's unique: (1) medical, physical, or functional needs related to a medical condition; and (2) capacities for basic activities of daily living (ADLs) or instrumental ADLs. Support H.R. 1516/S. 1013 - This bill amends title XVIII (Medicare) of the Social Security Act to prohibit the application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. (A competitive bidding program has replaced the use of established fee schedule amounts to determine payments under Medicare for certain durable medical equipment such as wheelchairs.) Support S. 2425 - Patient Acsess and Medicare Protection Act - A bill to amend titles XVIII and XIX of the Social Security Act to improve payments for complex rehabilitation technology and certain radiation therapy services, to ensure flexibility in applying the hardship exception for meaningful use for the 2015 EHR reporting period for 2017 payment adjustments, and for other purposes. Discussed with CMS, ACL and GAO concerns as it relates to access to durable medical equipment and accessories under Medicare's competitive acquisition program.

Support H.R. 292/S. 849 - Advancing Research for Neurological Diseases Act of 2015 Amends the Public Health Service Act to require the Centers for Disease Control and Prevention to: (1) enhance and expand infrastructure and activities to track the epidemiology of neurological diseases, including multiple sclerosis and Parkinson's disease; and (2) incorporate information obtained through those activities into a National Neurological Diseases Surveillance System. Requires the Department of Health and Human Services (HHS) to ensure that the System facilitates further research on neurological diseases. Support HR 1969 Military and Veteran Caregiver Services Improvement Act. This bill expands eligibility for the family caregiver program of the Department of Veterans Affairs (VA) to include members of the Armed Forces or veterans who are seriously injured or who became ill on active duty prior to September 11, 2001. United Spinal submitted RFI comments as a member of the Disability and Rehabilitation Research Coalition as well as independently: "Inviting Comments and Suggestions on the Priorities specified for the NIH-wide Rehabilitation Research Plan". Support Lifespan Respite Reauthorization Act , HR 3913 and the Military and Veteran Caregiver Services Improvement Act (S. 1085 & HR 1969 - includes provisions to reauthorize the Lifespan Respite Care Program. Support S. 2141 - Transparent Ratings on Usability and Security to Transform Information Technology (TRUST IT) Act of 2015 - To amend the Public Health Service Act with respect to health information technology. Advocate for repeal of medical device tax. Submitted a comment letter to the FDA regarding the announcement of the establishment of their Patient Engagement Advisory Committee and stated our availability to help the FDA regarding patient preference information, benefit-risk determinations and clinical trial or registry design.

United Spinal signed onto comments, organized by the Autistic Self Advocacy Network, in response to the Administration for Community Living (ACL) proposed guidelines for adult protective services (APS) procedures. The guidelines attempted to make APS programs more effective at pursuing cases of abuse and neglect on aging individuals and people with disabilities. The comments urged ACL to ensure: the individual is the center of the decision-making process; communication supports are provided; caseworkers come from diverse academic backgrounds; state protection & advocacy agencies and developmental disability councils are engaged; conflict of interest cases include cases involving friends, family and associates of staff members; and the ADA is respected. Discussed issues related to consumer-directed care, chronic illness and assisted suicide issues with ACL as they relate to people with disabilities. Discussed accessibility options and responsibilities with AMTRAK and Union Station officials.

Support the TIME Act, Transitioning to Integrated and Meaningful Employment Act, H.R. 188, introduced by Rep. Gregg Harper, R-MS) which phases out special wage certificates under the Fair Labor Standards Act of 1938 under which individuals with disabilities may be employed at subminimum wage rates. United Spinal signed onto a letter to the Social Security Administration educating the agency on reasonable accommodation requirements under the Americans with Disabilities Act.

Discussed accessibility and compliance issues with AMTRAK Government Affairs. Discussed and submitted comments to Department of Transportation on equity and accessibility issues. Opposed restrictive provisions in the House 2015 Coast Guard Reauthorization, H.R 1987 rolling back survival craft requirements. Submitted letter to the Senate Committee on Environment and Public Works and the House Transportation and Infrastructure Committee regarding the need for adequate provisions in the final surface transportation bill to ensure the safety of motorized and non-motorized users and support complete streets principles. Discussed with DOT the development of training modules to improve the air travel environment for passengers with disabilities.

Signed onto letter to President Obama urging the notice of proposed rulemaking for revising the Title III regulations of the ADA to be released.

United Spinal Association urged the U.S. Sneate to act this year to make permanent key provisions of the Earned Income Tax Credit (EITC) and refundable Child Tax Credit (CTC and to use this opportunity to improve the EITC by expanding it for low-income childless adults and non-custodial parents who could benefit from the change.

Department of Labor Appropriations United Spinal Association signed onto a Consortium for Citizens with Disabilities Employment and Training Task Force letter to the Senate Appropriations Committee opposing the Committees proposal to transfer the Office of Disability Employment Policy (ODEP) into the Employment and Training Administration (ETA) and reduce its funding by $15 million. This funding bill seriously undermines the stated intent of Congress to enhance and promote the employment of people with disabilities.

United Spinal signed onto Consortium for Citizens with Disabilities Social Security Task Force describing ways to improve work incentives and Social Security Disability Insurance (SSDI) benefits for SSDI. United Spinal Association signed onto a Consortium for Citizens with Disabilities Social Security Task Force letter in support of H.R. 3150, the One Social Security Act to the Ranking Member of the Social Security Subcommittee of the House Ways and Means Committee, Representative Xavier Becerra, (D-CA 34th). The legislation combines two trust funds, the Social Security Trust Fund and the Old Age and Survivor and Disability Insurance. The Disability Insurance Trust Fund is projected to be depleted at the end of 2016, at which time Social Security Disability Insurance beneficiaries face a nearly 20% benefit cut unless action is taken. United Spinal Association signed onto a Consortium for Citizens with Disabilities Social Security Task Force letter and supports Senator Wyden and Representative Levins Social Security Earned Benefits Payment Act. The bill implements the Presidents proposal to reallocate funds between the Old Age and Survivors Insurance and Disability Insurance trust funds to equalize both funds through 2034. The bill will prevent the 20% across the board cut in Social Security Disability Insurance (SSDI) at the end of 2016 and doing so with no cuts to Social Security benefits, eligibility or coverage. Benefit Offset Review United Spinal supports the Consortium for Citizens with Disabilities Social Security Task Force response to Congress on recommendations regarding review of a Benefit Offset program. The purpose of a Benefit Offset program is to determine the effect of various interventions, in combination with a benefit offset, on employment outcomes including wages, benefits, hours worked, and job retention. Economic security and work incentives must be core concepts within a benefit offset program with $1 benefit offset for every $2 of earnings over the earning disregard threshold.

Supports H.R. 1516/S. 1013 - Ensuring Access to Quality Complex Rehabilitation Technology Act - to ensure Medicare beneficiaries' access to customized wheelchairs. Supports H.R.3229 - To amend title XVIII of the Social Security Act to provide for the non-application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. Opposes CMS' Miscellaneous Coding policy which limits access to wheelchair accessories based on whether the price of that accessory exceeds $150 [Healthcare Common Procedure Coding System (HCPCS) Codes Used for Processing Medicare Claims for Miscellaneous Durable Medical Equipment (DME)]. The HAB Coalition discussed with CMS the provision of habilitation benefits at the federal and state levels and asking for better clarification on coverage to include habilitative devices. United Spinal Association signed on to letters as part of the Coalition to Preserve Rehabilitation Steering Committee to the Centers for Medicare and Medicaid Services opposing bundling payments of episodes of care for Medicare beneficiaries and opposing restrictive lower limb prosthesis policy. United Spinal staff was interviewed by the U.S. Government Accountability Office on the impact of Medicares competitive acquisition program on people with disabilities for their 2015 report. United Spinal continues to monitor the impact of the program on access issues for Medicare beneficiaries. As a member of the Coalition to Preserve Rehabilitation Steering Committee, United Spinal supports strengthening consumer protections in rehab facilities and urged Medicare to establish stronger language around resident services provided with clearer definitions; stronger language around comprehensive person-centered planning urging CMS to add that if facility discharge is determined to not be feasible, the plan must document the specific reasons for that conclusion, the services that resident receives and the reasons why those services could not be provided; better definition around the provision of rehabilitative services, discharge planning and resident rights for example. United Spinal also signed onto an American Association for Justice letter urging CMS to remove pre-dispute arbitration clauses as inherently unfair and disadvantageous to nursing home residents. First and foremost, an essential component of any decision-making process is gathering the information needed to make the best decision. Pre-dispute arbitration agreements force individuals to make a decision without any information at all about the dispute, for example, in cases of alleged severe neglect, serious injuries or death.

United Spinal is monitoring closely the impact of communications accessibility regulations on the disability community and is sharing feedback with the Federal Communications Commission.

Federal Surface Transportation Bill United Spinal submitted a letter to key Senators advocating for the removal of a harmful pay-for provision in a proposed long-term surface transportation bill. United Spinal urged the Senators to oppose Section 52303 of the DRIVE Act. The provision would have cut Social Security benefits to hundreds of thousands of people as one solution to dwindling transportation funding. United Spinal supported the efforts of the CCD Social Security Task force to raise awareness of the harmful provision and call for action amongst disability advocates and the Transportation Equity Caucus. United Spinal discussed with U.S. DOT the issue of adding equity to the US DOTs Beyond Traffic report on the future of transportation in the US. United Spinal recommended changes to the existing report, and inclusion of income as a barrier to transportation for people with disabilities. United Spinal submitted comments to US DOT in response to proposed rulemaking regarding paratransit fares. The proposed rule would have allowed an exception for a provider in LA County to charge more than the federally allotted rate (twice the fixed route fare). United Spinal urged US DOT to deny the request. United Spinal submitted similar comments on behalf of the Consortium for Citizens with Disabilities Transportation Task force as well. United Spinal Association wrote a letter to Representative Frank LoBiondo, (R-NJ), who sits on the House Committee on Transportation and Infrastructure in support of expanded Federal Aviation Administration language to allow for power inhibition devices to be used when stowing passenger wheelchairs as airline cargo. The inhibition device stops the power from accidentally turning on in the cargo which has been the cause of fires. The inhibition device/plug is also easy to insert and avoids airline crew being up to speed on all the variations of chairs and varying battery set-ups where battery cables must be disconnected.

Non-Defense Discretionary United United Spinal Association signed onto a letter to Congress, spearheaded by NDD United, urging for the protection of discretionary programs which include public services, such as environmental protection, education, job training, border security, veterans health care, scientific research, transportation, economic development, some low-income assistance, law enforcement, and international assistance.

Non-Defense Discretionary United United Spinal Association signed onto a letter to Congress, spearheaded by NDD United, urging for the protection of discretionary programs which include public services, such as environmental protection, education, job training, border security, veterans health care, scientific research, transportation, economic development, some low-income assistance, law enforcement, and international assistance.

United Spinal Association urged the U.S. Sneate to act this year to make permanent key provisions of the Earned Income Tax Credit (EITC) and refundable Child Tax Credit (CTC and to use this opportunity to improve the EITC by expanding it for low-income childless adults and non-custodial parents who could benefit from the change.

United Spinal is monitoring closely the impact of communications accessibility regulations on the disability community and is sharing feedback with the Federal Communications Commission.

Supports H.R. 1516/S. 1013 - Ensuring Access to Quality Complex Rehabilitation Technology Act - to ensure Medicare beneficiaries' access to customized wheelchairs. Supports H.R.3229 - To amend title XVIII of the Social Security Act to provide for the non-application of Medicare competitive acquisition rates to complex rehabilitative wheelchairs and accessories. Opposes CMS' Miscellaneous Coding policy which limits access to wheelchair accessories based on whether the price of that accessory exceeds $150 [Healthcare Common Procedure Coding System (HCPCS) Codes Used for Processing Medicare Claims for Miscellaneous Durable Medical Equipment (DME)]. The HAB Coalition discussed with CMS the provision of habilitation benefits at the federal and state levels and asking for better clarification on coverage to include habilitative devices. United Spinal Association signed on to letters as part of the Coalition to Preserve Rehabilitation Steering Committee to the Centers for Medicare and Medicaid Services opposing bundling payments of episodes of care for Medicare beneficiaries and opposing restrictive lower limb prosthesis policy. United Spinal staff was interviewed by the U.S. Government Accountability Office on the impact of Medicares competitive acquisition program on people with disabilities for their 2015 report. United Spinal continues to monitor the impact of the program on access issues for Medicare beneficiaries. As a member of the Coalition to Preserve Rehabilitation Steering Committee, United Spinal supports strengthening consumer protections in rehab facilities and urged Medicare to establish stronger language around resident services provided with clearer definitions; stronger language around comprehensive person-centered planning urging CMS to add that if facility discharge is determined to not be feasible, the plan must document the specific reasons for that conclusion, the services that resident receives and the reasons why those services could not be provided; better definition around the provision of rehabilitative services, discharge planning and resident rights for example. United Spinal also signed onto an American Association for Justice letter urging CMS to remove pre-dispute arbitration clauses as inherently unfair and disadvantageous to nursing home residents. First and foremost, an essential component of any decision-making process is gathering the information needed to make the best decision. Pre-dispute arbitration agreements force individuals to make a decision without any information at all about the dispute, for example, in cases of alleged severe neglect, serious injuries or death.

Supports S.849 - Advancing Research for Neurological Diseases Act of 2015. This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases. Also support the companion bill, HR 292 (which was included in the 21st Century Cures Initiative). United Spinal supports the Patient Access to Disposable Medical Technology Act of 2015, S.1253/H.R. 1018 - portable medical equipment that can be used outside of the hospital. United Spinal joined a coalition, led by the Center for Responsible Science, to file an FDA petition to broaden testing options in drug development and to update regulations that govern preclinical drug and device development. As a member of the Patients for Biologics Safety and Access, United Spinal is engaged in an advocacy campaign with Congress to ensure that Congress hold an oversight hearing with the Food and Drug Administration to ask for expedited publication of guidances on consumer safety and clinical testing for biological pharmaceuticals. A Senate HELP hearing with the FDA CDRH Director, Janet Woodcock testifying took place in September. United Spinal Association signed on to a letter spearheaded by the Advanced Medical Technology Association (AdvaMed) in support of repealing the tax on medical device manufacturers. Research shows that innovations in medical technology have greatly improved outcomes of individuals with disabilities. We are concerned that the medical device tax will curtail investments in future innovation, thereby reducing consumer access to innovative medicine and hampering their quality of life.

Federal Surface Transportation Bill United Spinal submitted a letter to key Senators advocating for the removal of a harmful pay-for provision in a proposed long-term surface transportation bill. United Spinal urged the Senators to oppose Section 52303 of the DRIVE Act. The provision would have cut Social Security benefits to hundreds of thousands of people as one solution to dwindling transportation funding. United Spinal supported the efforts of the CCD Social Security Task force to raise awareness of the harmful provision and call for action amongst disability advocates and the Transportation Equity Caucus. United Spinal discussed with U.S. DOT the issue of adding equity to the US DOTs Beyond Traffic report on the future of transportation in the US. United Spinal recommended changes to the existing report, and inclusion of income as a barrier to transportation for people with disabilities. United Spinal submitted comments to US DOT in response to proposed rulemaking regarding paratransit fares. The proposed rule would have allowed an exception for a provider in LA County to charge more than the federally allotted rate (twice the fixed route fare). United Spinal urged US DOT to deny the request. United Spinal submitted similar comments on behalf of the Consortium for Citizens with Disabilities Transportation Task force as well. United Spinal Association wrote a letter to Representative Frank LoBiondo, (R-NJ), who sits on the House Committee on Transportation and Infrastructure in support of expanded Federal Aviation Administration language to allow for power inhibition devices to be used when stowing passenger wheelchairs as airline cargo. The inhibition device stops the power from accidentally turning on in the cargo which has been the cause of fires. The inhibition device/plug is also easy to insert and avoids airline crew being up to speed on all the variations of chairs and varying battery set-ups where battery cables must be disconnected.

United Spinal signed onto a letter, spearheaded by the Epilepsy Foundation of America urging Congresss House and Senate Judiciary Committees to amend H.R. 9, the Innovation Act to preserve the strong patent protections that sustain medical research.

Department of Labor Appropriations United Spinal Association signed onto a Consortium for Citizens with Disabilities Employment and Training Task Force letter to the Senate Appropriations Committee opposing the Committees proposal to transfer the Office of Disability Employment Policy (ODEP) into the Employment and Training Administration (ETA) and reduce its funding by $15 million. This funding bill seriously undermines the stated intent of Congress to enhance and promote the employment of people with disabilities.

Non-Defense Discretionary United United Spinal Association signed onto a letter to Congress, spearheaded by NDD United, urging for the protection of discretionary programs which include public services, such as environmental protection, education, job training, border security, veterans health care, scientific research, transportation, economic development, some low-income assistance, law enforcement, and international assistance.

United Spinal signed onto Consortium for Citizens with Disabilities Social Security Task Force describing ways to improve work incentives and Social Security Disability Insurance (SSDI) benefits for SSDI. United Spinal Association signed onto a Consortium for Citizens with Disabilities Social Security Task Force letter in support of H.R. 3150, the One Social Security Act to the Ranking Member of the Social Security Subcommittee of the House Ways and Means Committee, Representative Xavier Becerra, (D-CA 34th). The legislation combines two trust funds, the Social Security Trust Fund and the Old Age and Survivor and Disability Insurance. The Disability Insurance Trust Fund is projected to be depleted at the end of 2016, at which time Social Security Disability Insurance beneficiaries face a nearly 20% benefit cut unless action is taken. United Spinal Association signed onto a Consortium for Citizens with Disabilities Social Security Task Force letter and supports Senator Wyden and Representative Levins Social Security Earned Benefits Payment Act. The bill implements the Presidents proposal to reallocate funds between the Old Age and Survivors Insurance and Disability Insurance trust funds to equalize both funds through 2034. The bill will prevent the 20% across the board cut in Social Security Disability Insurance (SSDI) at the end of 2016 and doing so with no cuts to Social Security benefits, eligibility or coverage. Benefit Offset Review United Spinal supports the Consortium for Citizens with Disabilities Social Security Task Force response to Congress on recommendations regarding review of a Benefit Offset program. The purpose of a Benefit Offset program is to determine the effect of various interventions, in combination with a benefit offset, on employment outcomes including wages, benefits, hours worked, and job retention. Economic security and work incentives must be core concepts within a benefit offset program with $1 benefit offset for every $2 of earnings over the earning disregard threshold.

United Spinal Association urged the U.S. Sneate to act this year to make permanent key provisions of the Earned Income Tax Credit (EITC) and refundable Child Tax Credit (CTC and to use this opportunity to improve the EITC by expanding it for low-income childless adults and non-custodial parents who could benefit from the change.

Supports S.849 - Advancing Research for Neurological Diseases Act of 2015. This bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases. Also support the companion bill, HR 292 (which was included in the 21st Century Cures Initiative). United Spinal supports the Patient Access to Disposable Medical Technology Act of 2015, S.1253/H.R. 1018 - portable medical equipment that can be used outside of the hospital. United Spinal joined a coalition, led by the Center for Responsible Science, to file an FDA petition to broaden testing options in drug development and to update regulations that govern preclinical drug and device development. As a member of the Patients for Biologics Safety and Access, United Spinal is engaged in an advocacy campaign with Congress to ensure that Congress hold an oversight hearing with the Food and Drug Administration to ask for expedited publication of guidances on consumer safety and clinical testing for biological pharmaceuticals. A Senate HELP hearing with the FDA CDRH Director, Janet Woodcock testifying took place in September. United Spinal Association signed on to a letter spearheaded by the Advanced Medical Technology Association (AdvaMed) in support of repealing the tax on medical device manufacturers. Research shows that innovations in medical technology have greatly improved outcomes of individuals with disabilities. We are concerned that the medical device tax will curtail investments in future innovation, thereby reducing consumer access to innovative medicine and hampering their quality of life.

Federal Surface Transportation Bill United Spinal submitted a letter to key Senators advocating for the removal of a harmful pay-for provision in a proposed long-term surface transportation bill. United Spinal urged the Senators to oppose Section 52303 of the DRIVE Act. The provision would have cut Social Security benefits to hundreds of thousands of people as one solution to dwindling transportation funding. United Spinal supported the efforts of the CCD Social Security Task force to raise awareness of the harmful provision and call for action amongst disability advocates and the Transportation Equity Caucus. United Spinal discussed with U.S. DOT the issue of adding equity to the US DOTs Beyond Traffic report on the future of transportation in the US. United Spinal recommended changes to the existing report, and inclusion of income as a barrier to transportation for people with disabilities. United Spinal submitted comments to US DOT in response to proposed rulemaking regarding paratransit fares. The proposed rule would have allowed an exception for a provider in LA County to charge more than the federally allotted rate (twice the fixed route fare). United Spinal urged US DOT to deny the request. United Spinal submitted similar comments on behalf of the Consortium for Citizens with Disabilities Transportation Task force as well. United Spinal Association wrote a letter to Representative Frank LoBiondo, (R-NJ), who sits on the House Committee on Transportation and Infrastructure in support of expanded Federal Aviation Administration language to allow for power inhibition devices to be used when stowing passenger wheelchairs as airline cargo. The inhibition device stops the power from accidentally turning on in the cargo which has been the cause of fires. The inhibition device/plug is also easy to insert and avoids airline crew being up to speed on all the variations of chairs and varying battery set-ups where battery cables must be disconnected.

United Spinal signed onto a letter, spearheaded by the Epilepsy Foundation of America urging Congresss House and Senate Judiciary Committees to amend H.R. 9, the Innovation Act to preserve the strong patent protections that sustain medical research.

United Spinal is monitoring closely the impact of communications accessibility regulations on the disability community and is sharing feedback with the Federal Communications Commission.

United Spinal signed on to testimony submitted by the CCD Transportation and Housing Task Forces, as well as several other disability organizations. The testimony urged the Senate appropriations committee to maintain funding for Department of Transportation (DOT) and Housing and Urban Development (HUD) programs impacting people with disabilities in the FY 2016 Transportation, Housing and Urban Development, and Related Agencies (T-HUD) appropriations bill

United Spinal participated, as an alternate, in the U.S. Access Board's Rail Vehicles Access Advisory Committee (RVAAC) April meeting. The RVAAC is developing consensus recommendations for the Access Boards use in updating sections of the guidelines that cover vehicles of fixed guideway systems, including rapid, light, commuter, intercity, and high speed rail. United Spinal submitted comments concerning U.S.DOT proposed rulemaking on Geographic-Based Hiring Preferences in Administering Federal Awards. United Spinal supported USDOTs efforts to allow city and state departments of transportation to set economic and geographic preferences for projects receiving federal funds. In addition, United Spinal urged USDOT to extend the allowance for targeted hiring provisions, including women and people with disabilities. United Spinal recommended language supporting contractor compliance with the U.S. Department of Labor (DOL) Section 503 rule requiring affirmative action policies leading to the employment of people with disabilities. United Spinal participated in an executive roundtable at the USDOT on Connectivity. The roundtable sought to examine equity measures seeking to ensure all people, including mobility device users, are getting where they need to go. United Spinal participated in a conference call with USDOT staff regarding future webinars to support the USDOTs Mayors Challenge for Safer People, Safer Streets initiative. Mayors offices (and state and other local officials, and planning organizations) who had signed up to participate in the challenge convened for a day at the USDOT headquarters earlier this year. Participants will receive technical assistance throughout the year. United Spinal supports S.705, the Transportation Alternatives Program Improvement Act. S.705 ensures adequate funding for sidewalk and other pedestrian and biking programs. The bill would allocate funds to local communities, and smaller rural communities, to build accessible networks, and to non-profits for safety education. United Spinal signed on to a letter to all members of Congress in support of adequate funding for transportation alternative programs (TAP), which includes funding for sidewalks and curb ramps. United Spinal signed on to a letter to all members of Congress in support of adequate funding for transportation alternative programs (TAP), which includes funding for sidewalks and curb ramps. United Spinal signed on to a letter to Congress regarding the need for reauthorization for a surface transportation bill. The letter highlighted the need for accessible transportation programs, funding for travel training and technical assistance, accessible taxis and public rights-of-way, and quality paratransit and coordinated transportation. United Spinal attended a conversation with USDOT Secretary Foxx, the DC DOT Director, Iowa DOT Director, and a key VA DOT official. The speakers discussed funding challenges and potential solutions. United Spinal attended a talk and interview with House Transportation & Infrastructure Chairman Shuster on transportation funding. Supports HR 2071, the Safe Streets Act of 2015, sponsored by Rep. Matsui (D-CA-6th). The bill encourages communities to consider safety improvements for all users in transportation project planning. United Spinal also calls on Congress to pass a long-term surface transportation bill with adequate funding measures. Any bill should incentivize solutions to ensuring an accessible, affordable, reliable and safe transportation system for all in urban, suburban, and rural settings. United Spinal provided guidance to Representative Duckworths staff regarding a bill that would require spaces be provided in airports for mothers to breastfeed. Duckworths staff requested recommended language to ensure the spaces provided would be accessible to all H.R.2530 - the Friendly Airports for Mothers Act of 2015. United Spinal provided a letter of support to Representative Langevins office in support of HR 1448, the Transit Accessibility Innovation Act of 2015. The bill would provide grants to public transit agencies to improve paratransit programs. United Spinal co-signed a letter to the Coast Guard as the Co-Chair of the CCD Transportation Task Force. The letter was addressed to Coast Guard Admiral Zukunft, and ccd key Senate offices on the Coast Guard subcommittee, FEMA, and the White House. The letter raised the concern that the House-passed Coast Guard Reauthorization Act weakens a requirement that survival craft keep a persons entire body out of the water. United spinal co-signed a letter, as Co-Chair of the CCD Transportation Task force, thanking Representative Rick Larsen for adding language to the Federal Aviation Administration (FAA) reauthorization. The language urged the U.S. Department of Transportation (DOT) to swiftly promulgate long-awaited regulations on the Air Carrier Access Act (ACAA) that increase access to accessible air travel for people with disabilities. The letter also raised the hope that rulemaking would increase access to lavatories, for passengers with service animals, and ensure the safety of people with disabilities mobility devices during travel. United Spinal signed on to a Congressional letter organized by Rails-to-Trails in support of funding and maintenance of the Trasnportation Alternatives Program (TAP) under USDOT. TAP provides authorization and funding for bicycle and pedestrian infrastructure and safety programs around the country. United Spinal participated, as an alternate, in the US Access Board Rail Vehicles Access Advisory Committee (RVAAC) June meeting. The RVAAC is developing consensus recommendations for the Access Boards use in updating sections of the guidelines that cover vehicles of fixed guideway systems, including rapid, light, commuter, intercity, and high speed rail.

United Spinal submitted a proposal to the Department of Labor on ways to improve recruitment of people with disabilities into the federal government contractor rolls. Discused 503 regs.

United Spinal signed on to comments organized by the CCD Rights Task force and submitted to the Co-Chairs of the Presidents Task Force on 21st Century Policing. The comments urged the Task Force to give full consideration to the ways in which law enforcement officers interact with individuals with physical and mental disabilities, and the need for improved awareness and training. United Spinal Association signed onto a letter drafted by the Consortium of Citizens with Disabilities asking Democratic Whip of the United States House of Representatives, Rep. Steny Hoyer, to weigh in with the Equal Employment Opportunity Commission regarding its April 20, 2015 proposed rule to amend its ADA regulations which takes away important workplace rights that Congress enacted to protect people with disabilities. The letter shared concerns that the EEOCs Proposed Rule narrows the protections of the ADA-specifically, its limits on employers ability to subject employees to medical inquiries and examinations unrelated to their jobs.

United Spinal is working with the FCC on highlighting and encouraging broadband enabled health solutions for people with disabilities by introducing partnerships with companies in the consumer electronics space and working with the FCCs Connect to Health Task Force. The FCC is planning technology expos for people with disabilities this Fall. United Spinal has been working closely with Verizon and other IT companies to expand access for people with disabilities to consumer electronics, software applications and communications devices. United Spinal is looking at ways to improve upon the Telecommunications Act of 1996. So many technology changes have occurred since then. United Spinal continues to highlight with Congressional offices the need to look at a new policy framework which encourages investment and innovation; promotes competition, and protects consumers. Regarding consumer access to devices and content, a light regulatory approach would be beneficial being mindful that there continue to be multiple communication platforms with different software and application versions for use by individuals who are blind, deaf and live with manual dexterity limitations. United Spinal continues to advocate against restrictions on access to telemedicine for our members and the broader disability community.

Supports H.R. 1516/S. 1013 - ENsuring Access to Quality Compex Rehabiliation Technology Act - to ensure Medicare beneficiaries' access to customized wheelchairs. United Spinal advocated distributed a Congressional Dear Colleague letter urging that CRT accessories (specialty controls such as head-rests) are not set at competitive bidding pricing the same as standard wheelchairs due to their highly customized nature for a small population living with significant disabilities. United Spinal highlighted our concern with CRT Accessories, described above and with our concerns with access to durable medical equipment for wheelchair users under the competitive acquisition program. United Spinal signed on to a letter to US Health and Human Services Secretary Burwell and CMS officials regarding a pending case, Davis v. Shah, in the U.S. Second Circuit Court of Appeals - a challenge to New York Medicaid's attempt to limit coverage of compression stockings and orthopedic shoes only to Medicaid recipients with specific diagnoses. Supports the Steve Gleason Act which lifts caps on access to speech-generating devices. (HR 1919, H.R. 629, S, 768, S. 984. United Spinal supported Congressional testimony on behalf of the Coalition to Preserve Rehabilitation Steering Committee highlighting the need to eliminate site-neutral payments under Medicare and also advocated for additional signatories to a Dear Colleague letter stating the same issue. United Spinal supports expanded state participation in Medicaid programs that increase funding for HCBS such as the Community First Choice Option, Money Follows the Person, and the Balancing Incentive Program; and oppose restructuring of Medicaid funding through block grants, State Flexibility Funds, or per capita caps. United Spinal signed on to a letter to the Centers for Medicare and Medicaid Services in support of an improved mechanism for the reimbursement of Lemtrada to ensure speedier access to this therapy for individuals with multiple sclerosis. United Spinal signed onto three comment letters to the Centers for Medicare and Medicaid Services in support of improved rehab policy, namely: on in-patient rehabilitative facilities and on skilled nursing facilities to allow for improved quality reporting and on acute care hospitals and payment issues to ensure that bundled payments of services does not hinder coverage of episodes of care for individuals with multiple needs. United Spinal signed onto a MapRx letter to urge the Senate Finance Committee to include, in their discussion of chronic care, robust formularies, coverage of the six-protected classes of drugs, strong oversight, and transparency for consumers are among the design principles essential to meet the needs of Medicare beneficiaries. In addition, a process for notice of non-coverage, appeals and exceptions is critical to providing access to needed drug therapies. United Spinal supports S.1253, the Patient Access to Disposable Medical Technology Act of 2015.The legislation amends title XVIII (Medicare) of the Social Security Act to cover disposable medical technology in addition to equipment traditionally described as durable medical equipment. This legislation was introduced by Senators Burr (R-NC) and Bennet (D-CO) this spring and is identical to its House counterpart, H.R. 1018, which United Spinal has also supported. United Spinal supports the Protect Medical Innovation Act of 2015, HR 160, introduced by Rep. Eric Paulsen of Minnesota, which repeals the medical device tax on medical device manufacturers and importers. United Spinal signed on to a letter to Congress to convey support for the goals of the final Home and Community Based Settings (HCBS) rule issued by the Centers for Medicare & Medicaid Services (CMS) in January 2014. This rule is the first time CMS has defined community for Medicaid-funded HCBS programs. The letter also urges Congress to: protect cuts to funding; support the requested additional $2.8m in CMS funding for HCBS; and defend against policies or changes to the rule that would hinder the goal of providing supports through HCBS so that people with disabilities can live meaningful lives.

The National Disabilities Leadership Alliance Employment Team, co-chaired by United Spinal Association and EINSOF Communications, met with DOLs Office of Federal Contract Compliance Programs (OFCCP) to discuss continued implementation of Section 503 of the Rehabilitation Act of 1973 which prohibits discrimination and requires employers with federal contracts or subcontracts that exceed $10,000 to take affirmative action to hire, retain, and promote qualified individuals with disabilities.

Supports Ensuring Quality Access to Complex Rehab Technology Act - working to reintroduce House and Senate legislation. HR 1516 was introduced in March. Working on reintroducing Senate legislation. The bill provides separate recognition for customized wheelchairs under Medicare for indiduals with significant disabilities. Supports Steve Gleason Act, 2015, HR 628 - provides Medicare beneficiary access to eye-tracking accessories for speech genearating devices and removes the rental cap restriction for SGDs. Supports Medicare Access to Rehabilitation Services Act - HR 773/S.539 - amends title XVIII of the Social Security Act to repeal the Medicare outpatient rehabilitation therapy caps. Supports Patient Access to Disposable Medical Technology Act of 2015/HR 1018 which amends title XVIII (Medicare) of the Social Security Act to cover substitute disposable medical technology, subject it to a special payment rule, and exempt it from competitive acquisition. Supports HR 729 Medicare Demonstration of Coverage for Low Vision Devices Act of 2015 which directs the Secretary of Health and Human Services to commence a project to demonstrate and evaluate the fiscal impact of covering low vision devices under part B (Supplementary Medical Insurance) of title XVIII (Medicare) of the Social Security Act in the same or similar manner as coverage is provided for durable medical equipment under such part. Directs the Secretary of Health and Human Services to commence a project to demonstrate and evaluate the fiscal impact of covering low vision devices under part B (Supplementary Medical Insurance) of title XVIII (Medicare) of the Social Security Act in the same or similar manner as coverage is provided for durable medical equipment under such part. Discussed improvements to orthotics and prosthetics rules and essential health benefits regulations. Discussed support of the Affordable Care Act, definitions of the summary of benefits and coverage for rehabilitation and habilitation services to prescription drug formularies. Discussed removing competitive acquisition pricing from complex rehab technology accessories. Support HR 2 - the Medicare Access and CHIP Reauthorization Act of 2015 which amends title XVIII (Medicare) of the Social Security Act (SSAct) to: (1) remove sustainable growth rate (SGR) methodology. Supports Improving Medicare Post-Acute Care Transformation Act of 2014 (S. 2553/HR 4994) - amends title XVIII of the Social Security Act to provide for standardized post-acute care assessment data for quality, payment, and discharge planning. Discussion of postponement of consideration of site-neutral payment policy for inpatient rehabilitation hospitals and units (IRFs) and skilled nursing facilities (SNFs).

Discussed US DOT's Safer Streets initiative and increased accessibility including the need for accessibility and disability-related data collection; the importance of human services coordinated transportation in rural America; needed regulation for the non-motorized safety performance measures and the Pedestrian Safety Enhancment Act; ADA enforcment; AMTRAK, air travel, technical assistance; and commercial drivers' licenses for people with disabilities. US Access Board Rail Vehicles Access Advisory Committee (RVAAC) - discussed the development of consensus recommendations regarding vehicles of fixed guideway systems, inlcuding rapid, light, commmuter, intercity and high speed rail. United Spinal suppported an amendment to HR 749 - Passenger Rail Reform and Investment Act of 2015. The amendment requires Amtraks Office of Inspector General to submit a report to the House T&I and Senate Commerce Committees on boarding procedures at the 10 busiest stations for wheelchair users and passengers using or transporting bicycles. Rep. Lipinski mentioned United Spinals support in his floor speech and clarified that the amendment would require the report to include motorized and non-motorized wheelchairs. HR 749 passed with the amendment. United Spinal supports HR 1448 - Transit Accessibility Innovation act of 2015 (HR 1448). The legislation would create a competitive grant program under the Federal Transit Administration (FTA) to encourage transit systems to make public transportation more accessible and user-friendly for individuals with disabilities. United Spinal provided recommendations on multi-modal accessible transporation appplications that would promote independent living and mobility of travelers with disabilities and improve the travel experience of all users. United Spinal discussed strategies for creating successful models for building connected communities and measuring the benefits for its citizens. United Spinal raised questions regarding the accessibility of innovative transportation modes, and the importance of ensuring existing transportation is connecting people with disabilities to their homes, work, schools, and other important destinations. United Spinal engaged in a discussion with senior National Highway Traffic Safety Administration (NHTSA) staff regarding data collection of pedestrians with disabilities injuries and fatalities, as well as the need to report on wheelchair user injuries and fatalities.

United Spinal provided comments to the White House on 21st Century policing regarding criminal justice and strategies for building improved trust between law enforcemnet and the disability community. United Spinal signed on to a Consortium for Citizens with Disabilities (CCD) letter to the President to urge the Administration not to erode the workplace rights afforded by the Americans with Disabilities Act (ADA) as it writes policy concerning employer-based wellness programs.

Discussed the Suicide Prevention Research INnovaTion Act (S. 2035). Supported the Mental Health First Aid Act of 2013 (S. 153). Supported ensuring network adequacy and protections for pediatric benefits within ACA's essential health benefits. Supports providing improved guidance around notification on Medicare eligibility to individuals not yet collecting Social Security benefits. Supports improving health benefit designs and a guarantee that there is health insurance plan transparency for Affordable Care Act enrollees. Supports protecting the definition of habilitative services and ensuring nondiscrimination as its relates to the provision of health benefits and services. Continues to discuss the 21st Century Cures Initiative with Congress. This initiative attempts to ensure improved access in the discovery, development and delivery of pharmaceutical therapies for the spinal cord injury community. Supports improved access to durable medical equipment and assistive technologies. Supports the Food and Drug Administration (FDA) addressing patient safety issues and the need for more guidance from the FDA on how biologics and biosimilars are being tested and made available to the public. Urges Congress to repeal the cap on therapy services under Medicare. Urges Congress to pursue passage of Ensuring Access To Quality Complex Rehabilitation Technology Act (HR 942/S. 948). Urges Congress to pass HR 4920 - The DMEPOS Medicare Improvement Act - requires state licenses for providers of durable medical equipment (DME) providers and requires that DME companies contracted with the Centers for Medicare and Medicaid must be bound by that contract to provide services and equipment to Medicare and Medicaid beneficiaries. Supports S. 1027 - improved co-ordination of disability and rehabilitation research funding at the National Institutes of Health. Opposes site-neutral payments under Medicare. Supports CMS including a broader range of remote access technologies in the basic health benefit packages offered under CMS.

Dialogue with the Federal Communications Commission regarding the Roadmap for Improving E911 Location Accuracy, highlighting the need for close monitoring of this roadmap to ensure adjustments can be made throughout the process.

Urged the Department of Labors Assistant Secretary for Veterans Employment and Training Service to swiftly implement Section 521 of the National Defense Authorization Act (P.L. 113-66). Discussed with the Department of Labor implementation of the Workforce Innovation and Opportunity Act (P.L. 113-128) as it relates to disabled veterans. Supported the Protect Veterans Employment and Training Services Act (Protect VETS Act) (S. 2834). Discussed recommendations for implementation of Section 503 of the Rehabilitation Acct of 1973. US DOL Home Care Rule - Urges Congress to delay implmentation of the DOL Home Care Rule. Supports providing improved guidance around notification on Medicare eligibility to individuals not yet collecting Social Security benefits.

Discussed ways that FEMA can improve communications with the disability community on emergency preparedness issues.

Discussed the Suicide Prevention Research INnovaTion Act (S. 2035). Supported the Mental Health First Aid Act of 2013 (S. 153). Supported ensuring network adequacy and protections for pediatric benefits within ACA's essential health benefits. Supports providing improved guidance around notification on Medicare eligibility to individuals not yet collecting Social Security benefits. Supports improving health benefit designs and a guarantee that there is health insurance plan transparency for Affordable Care Act enrollees. Supports protecting the definition of habilitative services and ensuring nondiscrimination as its relates to the provision of health benefits and services. Continues to discuss the 21st Century Cures Initiative with Congress. This initiative attempts to ensure improved access in the discovery, development and delivery of pharmaceutical therapies for the spinal cord injury community. Supports improved access to durable medical equipment and assistive technologies. Supports the Food and Drug Administration (FDA) addressing patient safety issues and the need for more guidance from the FDA on how biologics and biosimilars are being tested and made available to the public. Urges Congress to repeal the cap on therapy services under Medicare. Urges Congress to pursue passage of Ensuring Access To Quality Complex Rehabilitation Technology Act (HR 942/S. 948). Urges Congress to pass HR 4920 - The DMEPOS Medicare Improvement Act - requires state licenses for providers of durable medical equipment (DME) providers and requires that DME companies contracted with the Centers for Medicare and Medicaid must be bound by that contract to provide services and equipment to Medicare and Medicaid beneficiaries. Supports S. 1027 - improved co-ordination of disability and rehabilitation research funding at the National Institutes of Health. Opposes site-neutral payments under Medicare. Supports CMS including a broader range of remote access technologies in the basic health benefit packages offered under CMS.

Urged the Department of Labors Assistant Secretary for Veterans Employment and Training Service to swiftly implement Section 521 of the National Defense Authorization Act (P.L. 113-66). Discussed with the Department of Labor implementation of the Workforce Innovation and Opportunity Act (P.L. 113-128) as it relates to disabled veterans. Supported the Protect Veterans Employment and Training Services Act (Protect VETS Act) (S. 2834). Discussed recommendations for implementation of Section 503 of the Rehabilitation Acct of 1973. US DOL Home Care Rule - Urges Congress to delay implmentation of the DOL Home Care Rule. Supports providing improved guidance around notification on Medicare eligibility to individuals not yet collecting Social Security benefits.

Discussed the 25th Anniversary of Americans with Disabilities Act.

Urge the Department of Labors Assistant Secretary for Veterans Employment and Training Service to swiftly implement Section 521 of the National Defense Authorization Act (P.L. 113-66). Supported the Protect Veterans Employment and Training Services Act (Protect VETS Act) (S. 2834). United Spinal supported the Workforce Innovation and Opportunity Act/ HR 803.The legislation will help prepare jobseekers for in-demand occupations in their communities through relevant skills training and job placement services. Discussed strategies to improve employing people with disabilities in the federal government.

Discussed the Suicide Prevention Research Innovation Act (S. 2035). Supported the Mental Health First Aid Act of 2013 (S. 153). Signed on to a letter to the U.S. Department of Transportation and the U.S. Department of Health and Human Services asking for all modes of public transportation to announce the Suicide Prevention Lifeline for passengers on World Suicide Prevention Day. United Spinal highlighted improved clinical outcomes for rehabilitative care at in-patient rehab facilities over skilled nursing facilities for individuals with spinal cord injuries and other conditions such as brain injury and stroke. United Spinal discussed the 21st Century Cure initiative of Chairman Fred Upton (R-MI-6th) focusing on patient centered care. United Spinal supports Lifespan Respite Care Reauthorization Act (H.R.4683), a free-standing bill that reauthorizes the Lifespan Respite Care Program at $15 million a year for five years. United Spinal discussed the need to provide clarity and certainty for appropriate, risk-based oversight of health information technology.United Spinal supports HR 3077, the TeleMed Act, which allows Medicare providers licensed in one state to provide telemedicine services to certain Medicare beneficiaries across state lines. CMS has proposed a rule to expand prior authorization for DME affecting power wheelchairs, lower limb prostheses and negative pressure wound therapy. United Spinal is in general support of prior authorization is a process that certifies DME suppliers with CMS before they provide equipment and services to Medicare beneficiaries. United Spinal highlighted improved clinical outcomes for rehabilitative care at in-patient rehab facilities over skilled nursing facilities for individuals with spinal cord injuries and other conditions such as brain injury and stroke. United Spinal supports Ensuring Access to Quality Complex Rehabilitation Technology Act/HR 942/ S 948. which creates a separate benefit under Medicare for customized equipment known as complex rehab technology needed by people with significant disabilities. United Spinal discussed the negative impact capped rental agreements for medical equipment and supplies have on access to equipment for individuals with disabilities. United Spinal supports action on improving benefit designs, including cost-sharing options, and guarantee that there is plan transparency for ACA enrollees. United Spinal discussed the 21st Century Cure initiative of Chairman Fred Upton (R-MI-6th) focusing on patient centered care with Congressional staff. United Spinal discussed ACA enrollment and reenrollment matters with HHS. Discussed state of managed care in NYC for dual eligibles and potential improvements in the short term. United Spinal supports greater transparency in Medicare's competitive acquisition program for DMEPOS program as to how providers are evaluated by the Centers for Medicare and Medicaid Services and how the health of beneficiaries are being evaluated. United Spinal supports Medicare Demonstration of Coverage for Low Vision Devices Act of 2013 (H.R. 3749) which would establish a demonstration under the Medicare program for coverage of low vision aids. United Spinal supports HR 713/ S. 367 - Medicare Access to Rehabilitation Services Act of 2013 which eliminates therapy caps for rehabilitative services under Medicare without requiring an exceptions process. United Spinal presented recommendations to the Centers for Medicare and Medicaid Services regarding improvements to the Home and Community Based Services (HCBS) rule which was implemented in January 2014. The rule enhances the quality of HCBS, provides additional protections to HCBS program participants, and ensures that individuals receiving services through HCBS programs have full access to the benefits of community living. The letters recommendations include: ensuring transparency throughout the process; maintaining consistency with Olmstead [The Olmstead Supreme Court decision requires states to provide people with disabilities with the most integrated setting appropriate to their needs]; issuing necessary guidance promptly; clarifying consumer rights and ensuring that states properly identify and categorize settings. United Spinal supports the Community Integration Act/S. 2515. The Act would support the rebalancing of policies to ensure individuals with disabilities can leave institutions and live in the setting of their choosing. United Spinal supports HR 4920, the DMEPOS Medicare Improvement Act of 2014 which requires that providers of durable medical equipment, in areas known as competitive bidding areas, must be licensed in the states that they provide equipment and services and must be bound to the contract that they submitted to CMS if they are awarded a contract to provide equipment and services to Medicare beneficiaries. United Spinal discussed and presented recommendations to the Centers of Medicare and Medicaid Services to proceed with extreme caution when implementing a reimbursement cut in the provision of wound care therapy due to the effects of implementation on beneficiary access to NPWT. Supports making improvements to Medicare trust funds regarding liability settlements.

Urge the Department of Labors Assistant Secretary for Veterans Employment and Training Service to swiftly implement Section 521 of the National Defense Authorization Act (P.L. 113-66). Supported the Protect Veterans Employment and Training Services Act (Protect VETS Act) (S. 2834). United Spinal supported the Workforce Innovation and Opportunity Act/ HR 803.The legislation will help prepare jobseekers for in-demand occupations in their communities through relevant skills training and job placement services. Discussed strategies to improve employing people with disabilities in the federal government.

Discussed the 25th Anniversary of Americans with Disabilities Act.

Discussed the Suicide Prevention Research Innovation Act (S. 2035). Supported the Mental Health First Aid Act of 2013 (S. 153). Signed on to a letter to the U.S. Department of Transportation and the U.S. Department of Health and Human Services asking for all modes of public transportation to announce the Suicide Prevention Lifeline for passengers on World Suicide Prevention Day. United Spinal highlighted improved clinical outcomes for rehabilitative care at in-patient rehab facilities over skilled nursing facilities for individuals with spinal cord injuries and other conditions such as brain injury and stroke. United Spinal discussed the 21st Century Cure initiative of Chairman Fred Upton (R-MI-6th) focusing on patient centered care. United Spinal supports Lifespan Respite Care Reauthorization Act (H.R.4683), a free-standing bill that reauthorizes the Lifespan Respite Care Program at $15 million a year for five years. United Spinal discussed the need to provide clarity and certainty for appropriate, risk-based oversight of health information technology.United Spinal supports HR 3077, the TeleMed Act, which allows Medicare providers licensed in one state to provide telemedicine services to certain Medicare beneficiaries across state lines. CMS has proposed a rule to expand prior authorization for DME affecting power wheelchairs, lower limb prostheses and negative pressure wound therapy. United Spinal is in general support of prior authorization is a process that certifies DME suppliers with CMS before they provide equipment and services to Medicare beneficiaries. United Spinal highlighted improved clinical outcomes for rehabilitative care at in-patient rehab facilities over skilled nursing facilities for individuals with spinal cord injuries and other conditions such as brain injury and stroke. United Spinal supports Ensuring Access to Quality Complex Rehabilitation Technology Act/HR 942/ S 948. which creates a separate benefit under Medicare for customized equipment known as complex rehab technology needed by people with significant disabilities. United Spinal discussed the negative impact capped rental agreements for medical equipment and supplies have on access to equipment for individuals with disabilities. United Spinal supports action on improving benefit designs, including cost-sharing options, and guarantee that there is plan transparency for ACA enrollees. United Spinal discussed the 21st Century Cure initiative of Chairman Fred Upton (R-MI-6th) focusing on patient centered care with Congressional staff. United Spinal discussed ACA enrollment and reenrollment matters with HHS. Discussed state of managed care in NYC for dual eligibles and potential improvements in the short term. United Spinal supports greater transparency in Medicare's competitive acquisition program for DMEPOS program as to how providers are evaluated by the Centers for Medicare and Medicaid Services and how the health of beneficiaries are being evaluated. United Spinal supports Medicare Demonstration of Coverage for Low Vision Devices Act of 2013 (H.R. 3749) which would establish a demonstration under the Medicare program for coverage of low vision aids. United Spinal supports HR 713/ S. 367 - Medicare Access to Rehabilitation Services Act of 2013 which eliminates therapy caps for rehabilitative services under Medicare without requiring an exceptions process. United Spinal presented recommendations to the Centers for Medicare and Medicaid Services regarding improvements to the Home and Community Based Services (HCBS) rule which was implemented in January 2014. The rule enhances the quality of HCBS, provides additional protections to HCBS program participants, and ensures that individuals receiving services through HCBS programs have full access to the benefits of community living. The letters recommendations include: ensuring transparency throughout the process; maintaining consistency with Olmstead [The Olmstead Supreme Court decision requires states to provide people with disabilities with the most integrated setting appropriate to their needs]; issuing necessary guidance promptly; clarifying consumer rights and ensuring that states properly identify and categorize settings. United Spinal supports the Community Integration Act/S. 2515. The Act would support the rebalancing of policies to ensure individuals with disabilities can leave institutions and live in the setting of their choosing. United Spinal supports HR 4920, the DMEPOS Medicare Improvement Act of 2014 which requires that providers of durable medical equipment, in areas known as competitive bidding areas, must be licensed in the states that they provide equipment and services and must be bound to the contract that they submitted to CMS if they are awarded a contract to provide equipment and services to Medicare beneficiaries. United Spinal discussed and presented recommendations to the Centers of Medicare and Medicaid Services to proceed with extreme caution when implementing a reimbursement cut in the provision of wound care therapy due to the effects of implementation on beneficiary access to NPWT. Supports making improvements to Medicare trust funds regarding liability settlements.

Supported the Veterans Homebuyer Accessibility Act (H.R. 3422) which would provide tax credits for first time veteran homebuyers and for housing adaptations. Supported Senate efforts to extend and expand the Work Opportunity Tax Credit to incentivize business hiring of people with disabilities and veterans with service-connected disabilities.Advocated for Achieving a Better Life Experience Act of 2013 (ABLE Act) adjusts the Internal Revenue Code to establish tax-exempt ABLE accounts to assist people with disabilities save private funds to pay for education, housing, transportation, employment support and other personal support expenses.

Supported the CHAMPVA Childrens Protection Act (H.R. 288/S. 325). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs).Opposed eligibility restrictions surrounding social security benefits for people with disabilities and suggested improvements in the disability determinations process.

Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities.Advocated for Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 which creates a separate benefit under Medicare for customized wheelchairs and equipment. (HR 942/S. 948). Discussed legislative options for improved access to wheelchair repair, capped rental equipment and speech-generating devices. Advocated for Access to Inpatient Rehabilitation Therapy Act of 2014(H. R. 4755) which includes recreational therapy among the therapy modalities that constitute an intensive rehabilitation therapy program in an inpatient rehabilitation hospital or unit. Discussed suggested improvements for collecting data on patients within the Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act) which addresses data collectin procedures on rehabilitiation treatments and therapies under Medicare. Discussed personal injury settlements under Medicare affecting individuals with disabilities. Advocated for improved access for consumers to telemedicine and advocated for the lifting of restrictions of reimbursement for telemedicine at Accountable Care Organizations. Discussed strategies to improve information sharing for ACA navigators for the purpose of helping them enroll people with disabilities into the right health care plans.

Discussed the Suicide Prevention Research Innovation Act (S. 2035). Supported the Mental Health First Aid Act of 2013 (S. 153). Discussed with Senate HELP Committee Staff omnibus legislation that includes durable medical equipment, accessible technology, housing, accessible housing and recreation provisions.

Urge the Department of Labors Assistant Secretary for Veterans Employment and Training Service to swiftly implement Section 521 of the National Defense Authorization Act (P.L. 113-66).Discussed federal contractor regulations (503) related to the hiring of people with disabilities. Discussed strategies around the hiring and retention of people with disabilities in the federal government. Advocated in support of the Workforce Innovation and Opportunity Act which implements competitive integrated employment opportunities for people with disabilities. Advocated in support of extending the effective date of compliance with the Fair Labor Standards Act to Domestice Service for another 18 months.

Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities. Discussed passage of House and Senate legislation, Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 -HR 942/S 948. Discussed raising the capped rental rule on some complex rehab technology products and accessories. Discussed possible solutions around improved access to wheelchair repair. Discussed next steps regarding FDA action around biosimilar regulation and the implementation of biosimilar clinical trials. Discussed opposition to restricting Medicare coverage of protected classes of prescription drugs under Medicare Part D. Discussed solutions regarding Medicare physician payment updates known as the 'doc fix' including the repeal of the therapy cap. Discussed solutions regarding Medicare and Medicaid secondary payer regulations. Discussed solutions with state governments and Federal agencies regarding the administration of Medicaid Managed Care programs to ensure protections are in place for people with disabilities. Discussed solutions around CMS guidance on home and commuity based settings. Promote adequate fudning for all Medicaid services that allow people with disabilities to remina in their homes and contribute to the community. Discussed solutions to Medicare's current competitive acquisition program and support - Medicare DMEPOS Market Pricing Program Act of 2013 - HR 1717 Discussed solutions around improved quality measures for home and community based services for the aging and disability communities with HHS. Support advocacy efforts to expand Medicaid.

Supported the CHAMPVA Childrens Protection Act (H.R. 288/S. 325). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs).Oppose the Chained CPI which lowers social security benefits significantly over time and support the Chained CPI-E (Experimental Price Index for the Elderly) to calculate SSI and SSDI to ensure people with disabilities continue to have the critical income support they need to cover essential needs such as food, medicine and shelter. Support HR 649/S.308 - Protecting and Preserving Social Security Act of 2013and S.567 - Strengthening Social Security Act of 2013. Oppose reducing or eliminating concurrent unemployment insurance/disability insurance benefits as a partial pay-for for legislation to extend unemployment benfits as part of the budget discussions that ended in mid-January. Oppose the policy to not provide SSN print outs and benefit verification statements at SSA field offices.

Discussed the drafting of a rule on gainful employment for for-profit colleges and universities that accept federal funds with staff from the White House, Office of Management and Budget, and the Department of Education. Opposed the Academic Freedom Through Regulatory Relief Act (H.R. 2637).Support the TEACH Act, Technology, Equality, and Accessibility in College and Higher Education Act - HR 3505 and the reuathorization of the Elementary and Secondary Education Act including requests for increased funding of state assistive technology programs and captioning legislation.

Supported The Independent Budget for the VA budget recommendations for VA and related agencies serving veterans for FY 2014 and FY 2015. Advocated to protect social security, Medicare and Medicaid benefits and services on behalf of people with disabilities.Supported an amendment to the Senates FY 2014 Budget Resolution that would prohibit using the chained CPI to determine the COLA for veterans and Social Security benefits. Supported the highest funding level possible for the House and Senate versions of the Transportation and Housing and Urban Development appropriation for FY 2014. Supported the Barber Amendment to the House Transportation, Housing and Urban Development, and Related Agencies appropriations bill (H.R. 2610) which would add $1 million to the HUD VASH program. Supported efforts to limit educational institutions use of GI Bill funds in the House and Senate versions of the Military Construction VA appropriation for FY 2014 (H.R. 2216). Supported efforts to limit educational institutions use of DODs Tuition Assistance Program and MyCAA funds and level fund spinal cord injury research in the House and Senate versions of the Defense appropriation for FY 2014. Discussed the FY 2014 National Defense Authorization Act and related amendments (H.R. 1960/H.R. 3304/S. 1197). FY2014 budget appropriations letter U.S Congress requesting funding for programs that matter most to people with disabilities: ADA compliance, paratransit, technical assistance, and programs that increase access to transportation options.

Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities.HR 942/S. 948 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 Creates a separate benefit category under Medicare for CRT, protecting access to these customized products so that people living with significant disabilities, including MS, can remain independent and address their medical needs. Advocate for improved benefits and services under Medicare and Medicaid for people with disabilities. Supports HR 1717 - The Medicare DMEPOS Market Pricing Program Act of 2013/HR 1717 will replace the poorly designed bidding program at the Centers for Medicare and Medicaid Services (CMS) with a market pricing program to ensure that access to quality equipment and services is protected.

Discussed efforts to ensure that disabled veterans have information regarding disability rights and protections in seeking employment and education opportunities.Discussed elimination of subminimum wage for people with disabilities that is authorized by section 14(c) of the Fair Labor Standards Act, including the Fair Wages for Workers with Disabilities Act of 2013 (H.R. 831). Submitted testimony to the House Committee on Education and Workforce, Subcommittee on Workforce Protections regarding the VEVRAA and Section 503 final regulations. Workforce Investment Act - reauthorization.

Supported The Independent Budget for the VA budget recommendations for VA and related agencies serving veterans for FY 2014. Supported an amendment to the Senates FY 2014 Budget Resolution that would prohibit using the chained CPI to determine the COLA for veterans and Social Security benefits.Supported the highest funding level possible for the House and Senate versions of the Transportation and Housing and Urban Development appropriation for FY 2014. Supported efforts to limit educational institutions use of GI Bill funds in the House and Senate versions of the Military Construction VA appropriation for FY 2014 (H.R. 2216). Supported efforts to limit educational institutions use of DODs Tuition Assistance Program and MyCAA funds and level fund spinal cord injury research in the House and Senate versions of the Defense appropriation for FY 2014. Discussed the FY 2014 National Defense Authorization Act (H.R. 1960/S. 1197). United Spinal met with House Representatives and supports $2.49 million for lifespan respite programs as approved by the Senate Labor, Health and Human Services Appropriations subcommittee.

United Spinal continued its work to ensure that taxi and sedan services in the District of Columbia are accessible for wheelchair and mobility device users and accessible measures for people with disabilities under Washington Metropolitan Area Transit Authority (WMATA).

Discussed with DOJ Civil Rights Division a multitude of issues related to the ability of people with disabilities to fully integrate into their communities, including access to voting. Discussed with DOJ efforts to provide long-term services and supports to veterans in the most integrated setting.Opposed the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act (H.R. 994). Opposed the Pool Safety and Accessibility for Everyone (Pool SAFE) Act (H.R. 203). Opposed the ADA Notification Act (H.R. 777). In request for information comments submitted to the HHS' Office of Civil Rights, United Spinal highlighted the physical barriers to health facilities and programs as well as regulatory barriers - such as Affordable Care Act restrictions around the provision of essential health benefits namely rehabilitative and habilitative services and devices which includes durable medical equipment - in providing full access to care regarding accessible medical equipment diagnostic equipment to individuals with disabilities. United Spinal advocated for members of Congress about joining the Congressional Bipartisan Disabilities Caucus in the House of Representatives. United Spinal discussed Medicaid protections for people with disabilities with members of Congress.

Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities.Promote Congressional support of H.R. 942/S.948 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013. This legislation creates a separate benefit for complex rehab technology under Medicare for individuals with significant disabilities and functional limitations. United Spinal discussed concerns with the Centers for Medicare and Medicaid Services (CMS) regarding access to wheelchair repair under CMS' competitive acquisition program and outside of competitive acquisition areas across the country. United Spinal raised concerns with CMS regarding the Affordable Care Act healthcare marketplaces and navigator training to ensure consumer protections for enrollees. United Spinal discussed with the Department of Health and Human Services' Administration for Community Living access to the right type of wheelchair equipment, H.R. 942/S.948 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 (described above) and related wheelchair coding issues, concerns with consumer protections under Medicaid, essential health benefits under the Affordable Care Act and respite care funding matters. In June 2012, Medicare issued an Advanced Notice of Proposed Rulemaking (ANPRM) that seeks to significantly expand Medicare Secondary Payer authority to require that current Medicare beneficiaries and non-beneficiaries project what their future medical needs may be related to the accident, injury or illness in question and then place settlement funds in trust to ensure future medical treatment is fully funded before the beneficiary can access any additional settlement funds. United Spinal raised our concerns regarding the need for consumer protections in this regulation and met with the White House, Congress and CMS. United Spinal signed on to a letter to the Director of the Medicare-Medicaid Coordination Office at the Centers for Medicare and Medicaid Services. The letter thanked the office for providing states with an opportunity to apply for funding to develop independent Demonstration Ombudsman Programs. United Spinal and a host of other organizations have been recommending that CMS require ombudsmen for dual demonstration projects. United Spinal submitted comments to the Centers for Medicare and Medicaid Services regarding their proposed policy of converting complex rehab technology (Medicare beneficiary customized purchase items) to capped rental items. United Spinal supports Part D Beneficiary Appeals Fairness Act, S. 1365/H.R. 2827 which permits Medicare Part D beneficiaries to request lower co-pays for high-cost specialty drugs used to treat chronic illnesses. Healthcare Coalition Protecting Dialysis Care United Spinal signed onto a letter to CMS Administrator Marilyn Tavenner opposing a proposed 9.4% cut to dialysis care. This significant cut is likely to result in restrictions in access or have other negative effects on patient care. United Spinal supports Medicare Access to Rehabilitation Services Act of 2013 (H.R 713/S. 367) and have raised our concerns with CMS and Congress. United Spinal raised concerns with the White House regarding recent companionship regulations and matters around institutionalization for the disability community as well as our support of improvements to the provision of home and community-based services. United Spinal supports the Medicare DMEPOS Market Pricing Program Act of 2013/H.R. 1717 which replaces CMS' current competitive acquisition program to allow for imporved choces of medical equipment providers for Medicare beneficiaries.

Supported ratification of the UN Convention on the Rights of Persons with Disabilities.

Discussed with Congress reforms around post-acute care on issues including quality assessment tools, performance measures, hospital readmission rates, bundled payments, site neutral payments and beneficiary protections.

Discussed efforts to ensure that disabled veterans have information regarding disability rights and protections in seeking employment and education opportunities. Discussed elimination of subminimum wage for people with disabilities that is authorized by section 14(c) of the Fair Labor Standards Act, including the Fair Wages for Workers with Disabilities Act of 2013 (H.R. 831). United Spinal supports H.R. 831.United Spinal supports the Workforce Investment Act/S. 1356 which is part of the Rehabilitation Act of 1973 which makes adjustments to the federal government's oversight over the provision of vocational rehabilitation training programs and services for people with disabilities.

Supported the Eleanor Smith Inclusive Home Design Act (H.R. 2352). Supported the Housing Assistance for Veterans Act of 2013 (Haven Act) (H.R. 385/S. 1387). This legislation will leverage the ability of nonprofits to assist disabled and low-income veterans with needed housing adaptations and home repairs.Discussed the Homes for Heroes Act of 2013 (H.R. 384/H.R. 386). Discussed improving accessibility and visitability in Department of Housing and Urban Development programs. United Spinal supports the proposed rule: Affirmatively Furthering Fair Housing which recognizes that furthering fair housing includes affording people with disabilities the opportunity to live in the most integreated setting appropriate to their needs. United Spinal supports Arkansas' decision to accept fedal Medicaid funding to move forward with the extension of coverage to low-income parents and adults.

Supported an amendment to the Senate's FY 2014 Budget Resolution that would prohibit using the chained CPI to determine the COLA for veterans and Social Security benefits. Supported Senate Concurrent Resolution 15 which expresses the sense of Congress that the Chained CPI should not be used to calculate COLAs for Social Security or veterans benefits.United Spinal supports and discussed the Achieving a Better Life Experience (ABLE) Act of 2013 (H.R. 647/S. 313). This measure, which continues to have broad bipartisan support, will allow individuals to have tax-exempt savings accounts to be used for health education and wellness, employment supports, vehicle modification, assistive technology. United Spinal continues to advocate the Social Security Administration to ensure the preservation of disability benefits and advocates Congress and the Administration to oppose cutting social security benefits with a formula known as the Chained CPI formula which will result in significant benefit cuts for supplemental security income recipients and social security disability income recipients. United Spinal submitted comments and recommendations to the Commission on Long-Term Care in favor of measures that support consumers with spinal cord injuries and disorders and continued dialogue with Congress on these matters. United Spinal supported the CHAMPVA Children's Protection Act (H.R. 288/S. 325). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs). United Spinal opposes the chained consumer price index which lowers social security benefits significantly over time and supports the chained CPI-E (Experimental Price Index for the Elderly) to calculate SSI and SSDI to ensure people with disabilities continue to have the critical income support they need to cover essential needs such as food, medicine and shelter. United Spinal supports H.R. 649/S. 308 Protecting and Preserving Social Security Act of 2013, and S. 567/H.R. 3118, Strengthening Social Security Act of 2013. Supports H.Con. Res. 34, Expressing the sense of the Congress that the Chained Consumer Price Index should not be used to calculate cost-of-living adjustments for Social Security benefits.

Discussed the Veterans Homebuyer Accessibility Act which would provide tax credits for first time veteran homebuyers and for housing adaptations.Supports HR 647/S. 313 - Achieving a Better Life Experience Act of 2013 which adjusts the Internal Revenue Code to establish tax-exempt ABLE accounts to assist people with disabilities save private funds to pay for education, housing, transportation, employment support and other personal support expenses.

Supported ratification of the UN Convention on the Rights of Persons with Disabilities.

Discussed with DOJ Civil Rights Division a multitude of issues related to the ability of people with disabilities to fully integrate into their communities, including access to voting. Discussed with DOJ efforts to provide long-term services and supports to veterans in the most integrated setting.Opposed the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act (H.R. 994). Opposed the Pool Safety and Accessibility for Everyone (Pool SAFE) Act (H.R. 203). Opposed the ADA Notification Act (H.R. 777).

Supported the CHAMPVA Childrens Protection Act (H.R. 288/S. 325). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs).Supported an amendment to the Senates FY 2014 Budget Resolution that would prohibit using the chained CPI to determine the COLA for veterans and Social Security benefits. Supported Senate Concurrent Resolution 15 which expresses the sense of Congress that the Chained CPI should not be used to calculate COLAs for Social Security or veterans benefits. Discussed the President's Budget proposal and social security protections and benefits for people with disabilities. Opposed the Chained CPI which lowers social security benefits significantly over time and support the Chained CPI-E (Experimental Price Index for the Elderly) to calculate SSI and SSDI to ensure people with disabilities continue to have the critical income support they need to cover essential needs such as food, medicine and shelter. Support HR 649/S. 308 Protecting and Preserving Social Security Act of 2013 and S. 567, Strengthening Social Security Act of 2013.

Advocating against Chained Consumer Price Index which would change the Social Security cost of living adjustment (COLA) to a lower index for beneficiaries resulting in lower COLAs for beneficiaries. HR 8 - American Taxpayer Relief Act - advocated to have consumer representation on the Commission on Long-Term Care(Sec 643, HR 8), namely Paul J. Tobin, President and CEO of United Spinal Association. Supported the CHAMPVA Childrens Protection Act (H.R. 288/S. 325). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs [VA]). Supported an amendment to the Senates FY 2014 Budget Resolution that would prohibit using the chained CPI to determine the COLA for veterans and Social Security benefits.

We support Congress' continued investment in innovative medical research at the National Institutes of Health that can help prevent, treat and cure diseases, such as multiple sclerosis. We support the preservation of funding for the Congressionally Directed Medical Research Programs for novel multiple sclerosisresearch. We urge Congress to continue to pay attention to multiple sclerosis-related issues with the Congressional Multiple Sclerosis Caucus and continue to recognize Multiple Sclerosis Awarenees Week every March. Support an adequately resources Food and Drug Administration through Congressional approproiations regarding the availability of drugs and devices for individuals living with multiple sclerosis and other disabilities.

Advocate against Medicaid cuts and in support of home and community-based services. Support and promote HR 942 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013. This legislation creates a separate benefit for complex rehab technoogy under Medicare for individuals with significant disabilities and functional limitations.Raised our concerns with the Centers for Medicare and Medicaid Services, the Government Accountability Office, the United States House of Representatives and the United States Senate regarding CMS' competitive acquisition program for DMEPOS. Under this program, providers are too far from the homes of beneficiaries and consumers have difficulty funding suppliers to repair their wheelchairs. Support/advocate for nomination of Marilyn Tavenner as CMS Administrator. Support the Medicare Access to Rehabilitation Services Act of 2013 (HR 713/S 367). The bill would repeal the arbitrary Medicare Part B outpatient therapy caps now affecting an estimated 640,000 Medicare beneficiaries being denied access to needed services. Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities.

Discussed the need to ensure that efforts to address mental health needs as part of gun control do not create barriers for or discriminate against people with disabilities.

United Spinal supports preserving the Social Security benefit. Social Securitys disability programs are critical to people with disabilities and their families. United Spinal is opposed to proposing linking social security benefits to a different CPI measure, the chained CPI, instead of the CPI-W (Urban Wage Earners and Clerical Workers) will result in a significant benefit cut for both current and future Social Security beneficiaries in the disability, retirement, and survivors programs. United Spinal opposes the Chained Consumer Price Index (CPI). The chained CPI would lead to lower COLAs for beneficiaries. Use of a chained CPI could have dramatic impacts on current and future Social Security beneficiaries. Beneficiaries receiving the average 2012 Disability Insurance benefit could see cuts of 2.6% after 10 years, 5.4% after 20 years, and 8.13% after 30 years. United Spinal Association stated to the Office of Management and Budget the need of a minimum of $12.3 billion for its FY 2014 administrative funding to be able to manage increasing workloads regarding claimant hearings and disability determination services (DDS) with reduced staff. Discussed the CHAMPVA Childrens Protection Act of 2011 (H.R. 115/S. 490). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs [VA]). Urged Congress to leave any needed Social Security reforms out of the fiscal cliff negotiations. Includes the submission of a letter to Congress detailing the detrimental impact that adopting the chained CPI would have on veterans.

FDAs Prescription Drug User Fee Act Patient-Focused Drug Development - this FDA initiative is being conducted to fulfill FDA performance commitments made as part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V). This effort provides for a more systematic approach under PDUFA V for obtaining the consumer/patient perspective on the disease severity and the currently available treatments for a set of disease areas. FDA is published a preliminary list of nominated disease areas for this initiative, which currently does not include multiple sclerosis or ALS. United Spinal provided comments on this issue requesting that FDA expand its current list of nominated disease areas to include MS, ALS, co-morbidities and related secondary conditions. United Spinal urged the release of the Food and Drug Administrations (FDA) draft guidance on the regulation of laboratory developed diagnostic tests (LDTs). We have reached a critical point in the development of advanced diagnostics at which it has become essential that FDA move this guidance forward to ensure appropriate and efficient oversight of safe and effective diagnostics.

Continues to advocate on HR 4378 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2012. This legislation creates a separate benefit for complex rehab technology under Medicare for individuals with significant disabilities and functional limitations. Discussed concerns and possible solutions to prior authorization and physician documentation matters regarding the submission of medical claims for Medicare beneficiaries and people with disabilities. Discussed concerns with the dual-eligible population regarding those who are individuals with disabilities and the availability of home and community-based services and supports. Supports HR 3613, Part D Beneficiary Appeal Fairness Act of 2011. This legislation resolves some of the concerns surrounding high-cost prescription drug coverage in the following ways: It would permit requests from beneficiaries for exceptions and appeals for all tiers in Medicare Part D tiers, including specialty tier drugs. It would prohibit insurance companies from blocking a more favorable cost-sharing structure as an outcome of the exceptions and appeals process decision. This legislation ensures that all Part D beneficiaries have access to an exceptions and appeals process if they find their medications unaffordable and prevents anyone from being at a disadvantage or subject to discrimination due to a specific condition. Supports HR 1546 and S. 829 - Medicare Access to Rehabilitation Services Act. This legislation would repeal the arbitrary Medicare Part B outpatient therapy caps now affecting an estimated 640,000 Medicare beneficiaries who depend on outpatient rehabiliation therapy. United Spinal advocated for lifting the cap on therapy and extending the exceptions process for beneficiaries that are in need of additional therapy and who have exceeded the cap. Supports HR 6490 - Medicare DMEPOS Market Pricing Program Act of 2012 replaces Medicare's current competitive bidding program under Medicare with a market pricing program for durable medical equipment. United Spinal supports changes to HHS' proposed rule entitled, Patient Protection and Affordable Care Act; Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation. Section 1302(b) of the Affordable Care Act directs the Secretary of Health and Human Services (the Secretary) to define essential health benefits (EHB) which must include the following 10 benefit categories: (1) ambulatory patient services, (2) emergency services (3) hospitalization, (4) maternity and newborn care, (5) mental health and substance use disorder services, including behavioral health treatment, (6) prescription drugs, (7) rehabilitative and habilitative services and devices, (8) laboratory services, (9) preventive and wellness services and chronic disease management, and (10) pediatric services, including oral and vision care. Non-grandfathered plans in the individual and small group markets both inside and outside of the state insurance marketplaces, (known as the exchanges), certain Medicaid plans and other health programs must cover EHB beginning in 2014. United Spinal supports the need for greater clarity related to nondiscrimination regulations and state mandates and for more specificity and expanded coverage regarding habilitation, mental health and prescription drug benefits. In market reform comments to CMS, United Spinal supports the need for consumer protections against discrimination and adverse selection. Discussed possible solutions for improving access to Medicaid for military families who have children with disabilities. Advocated with Congress on the need to protect people with disabilities from additional cuts to Medicaid. United Spinal supports the following principles for an improved prescription drug benefit design over what currently exists under Medicare Part D: a robust formulary; required coverage for the six protected classes of drugs plus additional classes where there are unnecessary restrictions in place; appropriate oversight to the benefit; transparency on coverage and out-of-pocket costs; clear description of notice of non-coverage, appeals and exceptions process and rigorous oversight of medication utilization management tools (such as medication substitution, step therapy or quantity limits). Under Medicaid: Expand managed care where feasible to higher risk, higher cost beneficiaries and those dually eligible for Medicare with strict oversight and patient protections to improve care coordination and achieve efficiencies for these patients. Restore Medicaids discount prescription drug pricing to those dually eligible for Medicare. Under the state demonstrations to integrate care for dual-eligible individuals, urge CMS to establish and fund ombudsmen for each demonstration project, who would, at a minimum, provide: 1) information and assistance in pursuing complaints and appeals, 2) negotiation and mediation, 3) case advocacy assistance interpreting law, 4) reports on patterns of non-compliance, and 5) individual case advocacy in hearings and court proceedings related to benefits. United Spinal supports protecting Medicaid against future cuts. United Spinal opposes cuts to Medicaid provider taxes. Provider tax reductions would result in a cost shift to the states that could cause significant problems with state Medicaid budgets and restrictions on the provision of and access to healthcare. Other sustainable ways to address Medicaid costs should be investigated.

Supported ratification of the UN Convention on the Rights of Persons with Disabilities.

Opposed amendments to the House Commerce, Justice, Science Appropriations bill (H.R. 5326) that would prohibit the Department of Justice from enforcing its ADA regulations relating to fixed pool lifts and the definition of a service animal and defund the American Community Survey. Discussed the Senate version of this legislation and our desire to ensure that these amendments not attach to that version. Supported continued funding for the competitive Special Cord Injury research account in FY 2013 Defense Appropriations bills in the House (H.R. 5856) and Senate versions. Urged Congress to provide the highest level of funding possible for the Transportation, Housing, and Urban Development, and Related Agencies FY 2013 appropriation. Supported The Independent Budget for the VA budget recommendations for VA and related agencies serving veterans for FY 2012 and 2013. Urged the Select Committee on Deficit Reduction to consider the negative impact of budget reductions on veteran specific and other programs that benefit disabled veterans before enacting cuts. Discussed the potential impact of the budget proposal of House Budget Chairman Paul Ryan on programs for veterans and people with disabilities. Discussed the potential impact of the deficit reduction proposals of Senator Claire McCaskill on programs that benefit veterans with disabilities. Urged Congress to protect government services and supports for people with disabilities in light of deficit reduction discussions.

Sent a letter to DOJ concerning practices related to the settlement of Federal Tort Claims Act claims brought by individuals with disabilities who have been harmed by medical malpractice. Discussed with DOJ Civil Rights Division a multitude of issues related to the ability of people with disabilities to fully integrate into their communities. Opposed the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act (H.R. 3356). Opposed legislation that would amend the Americans with Disabilities Act of 1990 to prohibit the Attorney General from administering or enforcing certain accessibility regulations relating to pools at public accommodations or provided by public entities (H.R. 4200). Opposed the Pool Safety and Accessibility for Everyone (Pool SAFE) Act (H.R. 4256). Opposed legislation that would amend the Americans with Disabilities Act of 1990 to prohibit the Attorney General from administering or enforcing certain accessibility regulations relating to pools at public accommodations or provided by public entities (S. 2191). Opposed legislation that would amend the Americans with Disabilities Act of 1990 to prohibit the Attorney General from administering or enforcing certain accessibility regulations relating to pools at public accommodations or provided by public entities (S. 2186).

Participated in discussions regarding the staff discussion draft of the Workforce Investment Act reauthorization. Support HR 4227, the Workforce Investment Act (WIA) of 2012. This legislation would modernize Rehabilitation Act programs, promote employment in competitive integreated employment and foster post-secondary education for people with disabilities. Support reauthorization and funding of the Work Incentives Planning Assistance (WIPA) and Protection and Advocacy for Beneficiaries of Social Security (PABSS), two employment counseling programs that help SSDI beneficiaries return to work. Their funding expires June 30 and September 30, 2012 respectively. Support H.R. 3086, the Fair Wages for Workers with Disabilities Act, introduced by Reps. Cliff Stearns (R-6th FL) and Tim Bishop (D-1st NY), to phase out outmoded special wage certificates under the Fair Labor Standards Act of 1938 (FLSA). These certificates allow individuals with disabilities to be employed at subminimum wage rates in sheltered settings. Advancements in vocational rehabilitation, technology, and training of workers with disabilities have contributed to dramatic growth of such workers in the national workforce and rendered the FLSA provision obsolete. Support making the Medicaid Buy In program mandatory nationwide. To maintain their capacity for employment that keeps them off the Medicaid rolls, workers with disabilities often need long-term services and supports. In many states, they are able to purchase affordable Medicaid coverage for this purpose but the benefits vary. To promote the productivity and independence of workers with disabilities, Medicaid buy-in coverage should be made consistent in scope, remain affordable and offered for purchase in all states.

Discussed the CHAMPVA Childrens Protection Act of 2011 (H.R. 115/S. 490). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs [VA]). Urged Congress to leave any needed Social Security reforms out of the deliberations of the Joint Select Committee on Deficit Reduction. Includes the submission of a letter and report to Congress and the Administration detailing the detrimental impact that adopting the chained CPI would have on veterans. Endorsed the importance of Social Security for veterans and their families through the booklet, Social Security: Serving Those Who Serve Our Nation. United Spinal endorsed Consortium for Citizens with Disabilities testimony at a hearing September 14 entitled, Securing the Future of the Social Security Disability Insurance (SSDI) Program, before the House Ways and Means Committee Social Security Subcommittee. The testimony highlighted the need to protect SSDI for those with significant disabilities and their families. The Social Security Administration has asked the Government Accountability Office (GAO) to review the GAOs opinion regarding its recommendation that the Work, Incentives, Planning and Assistance Program (WIPA) and the Protection and Advocacy for the Beneficiaries of Social Security Program have legal authority to continue despite its lack of appropriations. Unfortunately, during its review, neither program can provide assistance to those in need of its services. United Spinal continues to advocate for measures (particularly WIPA and PABSS) to stimulate employment opportunities and improved income security for people with disabilities which promotes self-sufficiency and independent living via meaningful work opportunities, income generation, asset-building and community integration and engagement. Supports, HR 6061, WIPA and PABSS Continuation of Services Act of 2012. This legislation amends Title XI of the Social Security Act to repeal the expired authorization of appropriations for (and thus continue services under) the Work Incentives Planning and Assistance (WIPA) program and the Protection and Advocacy for Beneficiaries of Social Security (PABSS) program.

Support of the Office of Federal Compliance Contractor/Section 503 of the Rehabilitation Act United Spinal Association expressed its continuing support to the Department of Labors OFCCP to issue final regulations implementing and strengthening the compliance goals of Section 503 of the Rehabilitation Act which speaks to affirmative action in federal contractor and subcontractor hiring of qualified workers with disabilities. These contractors are estimated to be employers to about 20% of the overall U.S. workforce. United Spinal Association signed onto a letter spearheaded by the Consortium for Citizens with Disabilities supporting the Department of Labors thorough review of public comments on its proposed changes to rules implementing Section 503 of the Rehabilitation Act and the Vietnam Era Veterans Adjustment Act (VEVRAA), and urged that the final revised regulations be issued as soon as possible. Participated in discussions regarding the staff discussion draft of the Workforce Investment Act reauthorization. HR 4227: the Workforce Investment Act (WIA) of 2012 which reauthorizes WIA of 1998 to strengthen investment in innovation, alignment and improvement of employment, training and education programs. The bill, introduced by Reps. John Tierney (D-6th MA), Ruben Hinojosa (D-15th TX) and George Miller (D-7th CA), would modernize Rehabilitation Act programs, promote employment in competitive integrated employment and foster post-secondary education for people with disabilities. Reauthorization and funding of the Work Incentives Planning Assistance (WIPA) and Protection and Advocacy for Beneficiaries of Social Security (PABSS), two employment counseling programs that help SSDI beneficiaries return to work. Their funding expires June 30 and September 30, 2012 respectively. H.R. 3086: the Fair Wages for Workers with Disabilities Act, introduced by Reps. Cliff Stearns (R-6th FL) and Tim Bishop (D-1st NY), to phase out outmoded special wage certificates under the Fair Labor Standards Act of 1938 (FLSA). These certificates allow individuals with disabilities to be employed at subminimum wage rates in sheltered settings. Advancements in vocational rehabilitation, technology, and training of workers with disabilities have contributed to dramatic growth of such workers in the national workforce and rendered the FLSA provision obsolete.

United Spinal Association, as part of the Consortium for Citizens with Disabilities, submitted a statement for the record, entitled, "Stay-at-Work and Return-to-Work Strategies: Lessons from the Private Sector" hearing which was before the Senate HELP Committee in April. The statement emphasized the Social Security Disability Insurance and Supplemental Security Income (SSI) programs as vital to our nations safety net. Recommendations for strengthening Social Security Disability Insurance (SSDI) include the following: Support and strengthen programs designed to allow flexibility for people with disabilities to return to work, including programs authorized under the Ticket to Work and Work Incentives Improvement Act (TWWIIA). Provide a continued attachment to SSDI and Medicare, as long as a beneficiarys impairments last. Revise rules for impairment-related work expenses (IRWE). CCD proposals for revising IRWE include: Apply the current SSI blindness rule to SSDI disability claimants and beneficiaries to allow the consideration of all work expenses, not only those that are impairment-related. Allow beneficiaries to include their health insurance premiums as Impairment Related Work Expenses (IRWEs). This would recognize the higher costs incurred by workers with disabilities who must pay premiums for the Medicaid Buy-In or for continued Medicare after the termination of free Part A benefits. Reinstate SSAs Title II Demonstration Authority and the Demonstration to Maintain Independence, which expired in 2005. Work Incentives Planning and Assistance (WIPA) and Protection and Advocacy for Beneficiaries of Social Security. United Spinal Association signed onto a letter spearheaded by NDLA to support extending the Work Incentives Planning and Assistance (WIPA) and Protection Advocacy for Beneficiaries of Social Security (PABSS) for an additional 18 months. The extension of these two programs will ensure the continuity of employment support counseling services for SSA disability beneficiaries as Congress deliberates and reauthorizes the WIPA/PABSS programs. Discussed the CHAMPVA Childrens Protection Act of 2011 (H.R. 115/S. 490). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs [VA]). Urged Congress to leave any needed Social Security reforms out of the deliberations of the Joint Select Committee on Deficit Reduction. Includes the submission of a letter and report to Congress and the Administration detailing the detrimental impact that adopting the chained CPI would have on veterans. Endorsed the importance of Social Security for veterans and their families through the booklet, Social Security: Serving Those Who Serve Our Nation.

Opposed amendments to the House Commerce, Justice, Science Appropriations bill (H.R. 5326) that would prohibit the Department of Justice from enforcing its ADA regulations relating to fixed pool lifts and the definition of a service animal and defund the American Community Survey. Discussed the Senate version of this legislation and our desire to ensure that these amendments not attach to that version. Supported continued funding for the competitive Special Cord Injury research account in FY 2013 Defense Appropriations bills in the House (H.R. 5856) and Senate versions. Urged Congress to provide the highest level of funding possible for the Transportation, Housing, and Urban Development, and Related Agencies FY 2013 appropriation. Supported The Independent Budget for the VA budget recommendations for VA and related agencies serving veterans for FY 2012 and 2013. Urged the Select Committee on Deficit Reduction to consider the negative impact of budget reductions on veteran specific and other programs that benefit disabled veterans before enacting cuts. Discussed the potential impact of the budget proposal of House Budget Chairman Paul Ryan on programs for veterans and people with disabilities. Discussed the potential impact of the deficit reduction proposals of Senator Claire McCaskill on programs that benefit veterans with disabilities.

United Spinal Supports H.R. 5428 - The Injured and Amputee Veterans Bill of Rights As part of the Independence through Enhancement of Medicare and Medicaid (ITEM) Coalition, United Spinal Association signed on to a letter to the House Veterans Affairs Committee in support of HR 5428 - the Injured and Amputee Veterans Bill of Rights. This bill would establish a written list of rights that all injured and amputee veterans have access to high quality orthotic and prosthetic (O&P) care. O&P care, consisting of orthopedic braces, artificial limbs, and the clinical services necessary to treat the patient, is vital to veterans who have lost limbs or have sustained injuries or disorders of the arms, legs, back and neck. Supported the GI Bill Consumer Awareness Act of 2012 (S. 2241). Supported the Honoring Americas Veterans and Caring for Camp Lejeune Families Act of 2012 (HR 1627). This omnibus legislation contains many provisions that we have advocated for including access for service dogs to VA facilities. Discussed access to VA mental health services with the Department of Veterans Affairs, Veterans Health Administration. Supported the Veterans I.D. Card Act (H.R. 2985). This legislation directs the Secretary of VA to issue a veteran's identification card to any veteran who requests such card and is neither entitled to military retired pay nor enrolled in the VA system of patient enrollment. Supported the Veterans Data Breach Timely Notification Act (H.R. 3730). Requires the VA Secretary, in the event of a data breach with respect to sensitive personal information that is processed or maintained by the Secretary, to notify Congress and each individual whose sensitive personal information is involved in the data breach. Supported the Veterans Affairs Employee Accountability Act (H.R. 4481). Directs the VA Secretary to ensure that no employee of VA who violates any civil law covered by the Federal Acquisition Regulation receives any retention incentive, payment, or award for or during the year of such violation. Supported the Veterans Fiduciary Reform Act of 2012 (H.R. 5948). Supported the Women Veterans and Other Health Care Improvements Act of 2012 (S. 3313). Supported the Mental Health Access to Continued Care and Enhancement of Support Services Act (S. 3340) Discussed legislation that would amend title 38, United States Code, to require the Secretary of Veterans Affairs to consider the resources of individuals applying for pension that were recently disposed of by the individuals for less than fair market value when determining the eligibility of such individuals for such pension, and for other purposes (S. 3270). Supported legislation that would amend title 38, United States Code, to provide for coverage under the beneficiary travel program of the Department of Veterans Affairs of certain disabled veterans for travel for certain special disabilities rehabilitation, and for other purposes (S. 1755). Discussed the Veteran Voting Support Act of 2011 (S. 1264). Directs the VA Secretary to provide mail voter registration application forms to each veteran who: (1) seeks to enroll in VA health care system at the time of such enrollment; and (2) is already enrolled in such system when there is a change in the veteran's enrollment status or when there is a change in the veteran's address. Discussed with VA the long-term care benefits available to birth children of Korean and Vietnam conflict veterans who have spina bifida. Discussed the Consolidating Veteran Employment Services for Improved Performance Act of 2012 (H.R. 4072). This legislation would consolidate programs currently carried out by DOLs Veterans Employment and Training Service in VA. It would also consolidate the disabled veterans' outreach program specialists and local veterans' employment representatives into a single provision establishing veteran employment specialists, which shall perform both tasks. Supported the Military and Veterans Educational Reform Act (S. 2179). This legislation would make needed reforms to ensure that veterans and servicemembers receive the full benefit of their DOD and VA educational benefits. Supported the VOW to Hire Heroes Act of 2011 (H.R. 674/Pub. Law 112-56). This legislation includes provisions to increase employment opportunities for veterans and represents a blend of proposals that were included in H.R. 2433 and S. 951. Discussed the Veteran Voting Support Act of 2011 (S. 1264). This legislation would require VA to provide voter registration applications and assistance in absentee voting for certain veterans. Urged Congress and the Administration to address the treatment of our nations veterans by some for-profit educational institutions. This includes amending the 90/10 rule. Supported the Veterans Opportunity to Work Act (H.R. 2433). This legislation would help to ensure that veterans receive the training, transition, and placement assistance they need to allow them to gain meaningful employment opportunities. Supported the Helping Our Homeless Heroes Act (H.R. 2559). This legislation would make improvements to Department of Veterans Affairs (VA) programs that assist homeless veterans and their families. Supported the CAL Undiagnosed Diseases Research and Collaboration Network Act of 2011 (H.R. 2671). This legislation would help to track undiagnosed diseases and facilitate collaboration between physicians, researchers, and government agencies by creating a patient registry to be maintained by the National Institutes of Health. Supported the Veterans Dog Training Therapy Act (H.R. 198). This legislation would direct the VA Secretary to carry out a pilot program for assessing the effectiveness of addressing post-deployment mental health and post-traumatic stress disorder symptoms through a therapeutic medium of service dog training and handling for veterans with disabilities. Also discussed Senate companion bill (S. 1838). Supported H.R. 2074, as amended. The amended legislation includes H.R. 198 and H.R. 1154. Supported S. 914, as amended. The amended legislation includes S. 769, S. 411, and S. 957. Discussed the Hiring Heroes Act of 2011 (S. 951) and the need to ensure that there are platforms for the development of internship opportunities for wounded warriors with private employers. Supported the Helping our Homeless Veterans Act (S. 411/H.R. 1133). This legislation would allow changes to the U.S. Department of Housing and Urban Development and the U.S. Department of Veterans Affairs Supported Housing (HUD-VASH) program to ensure that homeless veterans receive more effective case management services. Supported the Veterans Traumatic Brain Injury Rehabilitative Services Improvements Act of 2011 (S. 957). This legislation would help to ensure that veterans with traumatic brain injuries receive the critical rehabilitation services needed to allow them to maximize their independence. Supported the Housing, Employment, and Living Programs (HELP) for Veterans Act of 2011 (H.R. 117). This legislation includes provisions that would not only reform the VAs Special Home Adaptation grant program to allow veterans who meet the nationally accepted standard of legal blindness to receive assistance with critical home modification, but also increase the amount of grant funding available for this program and the Specially Adapted Housing grant program. Supported the Andrew Connolly Veterans Housing Act (H.R. 1671). This legislation would extend until December 31, 2016, the authority of the VA Secretary to provide adaptive housing assistance under the Temporary Residence Adaptation grant program to veterans with disabilities who are temporarily residing with family members. Supported legislation establishing an Injured and Amputee Veterans Bill of Rights (H.R. 805). This legislation directs the VA Secretary to ensure that an Injured and Amputee Veterans Bill of Rights is printed on signage in accessible formats and displayed prominently and conspicuously in each VA prosthetics and orthotics clinic. It also requires VA employees who work at such clinics, as well as patient advocates of veterans who receive care there, to receive training on the Bill of Rights and directs the Secretary to conduct outreach to inform veterans about it. Supported the Veterans Equal Treatment for Service Dogs Act (VETS Dogs Act) (H.R. 1154/S. 769). The VETS Dogs Act states that the VA Secretary may not prohibit the use of service dogs in VA facilities or on VA property. Discussed the CHAMPVA Childrens Protection Act of 2011 (H.R. 115/S. 490). This legislation increases from 23 to 26 the maximum age of eligibility for certain dependent children of veterans for medical care under CHAMPVA (the Civilian Health and Medical Program of the Department of Veterans Affairs [VA]). Urged Congress to expand the extended caregivers program authorized by the Caregivers and Veterans Omnibus Health Services Act (P.L. 111-163) to include all veterans who are eligible for VA health care and meet certain needs-based criteria. Urged Congress to expand VA home and community-based services for veterans with disabilities. Urged Congress to increase Dependency and Indemnity Compensation benefits and to eliminate the offset of military Survivor Benefit Plan annuities. Urged Congress to provide appropriate oversight for and resources to address the VAs benefits claims processing backlog. Urged VA to accept the authority granted to them by states through the National Voter Registration Act of 1993 to serve as a voter registration agency.

United Spinal Association has been advocating to protect the civil rights of persons with disabilities and is opposed to various pieces of legislation including H.R. 4200, recently introduced by Rep. David Schweikert (R-5th AZ) which amends the Americans with Disabilities Act of 1990 to prohibit the U.S. Attorney General from administering or enforcing certain ADA accessibility regulations relating to pools at public accommodations or provided by public entities. We also oppose H.R. 4256, the Pool Safety and Accessibility for Everyone (Pool SAFE) Act, introduced by Rep. Rick Mulvaney (R-5th SC), directs the Attorney General to revise certain rules under Titles II and III of the ADA each requirements related to accessible means of entry to public pools. The counterpart bills in the Senate are S. 2191 and S.2186, both introduced by Sen. Jim DeMint (R-SC). United Spinal also submitted comments to the Department of Justice on its delay in implementing the final ADA pool accessibility regulations until May 21, 2012 in response to hotel owner complaints to the White House despite the fact that the intended rules were first announced in 2010. United Spinal expressed that the existing provisions for program accessibility (28 CFR 35.150) and readily achievable barrier removal (28 CFR 36.304) provide sufficient relief for entities that may not be able to immediately comply with the requirements to provide pool or spa access, especially when they more than one such facility as a property. We urged that the requirement be made effective immediately upon the close of the comment period on May 21, 2012. United Spinal opposes the following: H.R. 881, the ADA Notification Act of 2011, denies lawsuit in state or federal court for discrimination in public accommodations and certain private services unless the plaintiff notified defendant prior in writing, notice alleged specific facts, 90 days elapsed after notice, notified they had 90 days, notice states complaint has not been corrected. H.R. 3356 is the ACCESS (ADA Compliance for Customer Entry to Stores and Services) Act of 2011 and denies lawsuits based on inaccessibility in public buildings unless owner/operator is provided notice and they fail to provide description of improvements or plan on how barrier will be removed. H.R. 2032 prohibits any agency that receives funds from the government (such as DOJ) to consult with residents of DD facilities before filing lawsuits (i.e., on Olmstead violations). Residents can remove themselves from a lawsuit to remove the threat of being discharged from that facility. United Spinal helped to craft a Consortium for Citizens with Disabilities statement for the record following the hearing on the pool regulations issue held at the end of April, before the Committee on the Judiciarys Subcommittee on the Constitution entitled, Department of Justices Guidance on Access to Pools and Spas under the ADA. Also, United Spinal submitted our own statement for the record following the hearing stating that United Spinal Association strongly supports the principles of the ADA, enabling equal opportunities for individuals with disabilities in the areas of employment, public services, public transportation, public accommodations and communications. The law reflects hard-fought victories for civil rights and equality. We urge that the Department of Justice be permitted to move forward without further delay to make effective the requirements to provide access to polls, wading pools and spas on May 21, 2012. United Spinal also signed on to an Association of University Centers on Disabilities (AUCD) letter to the United States House of Representatives in opposing an amendment of Representative John Carter (R-31st TX) to the Commerce, Justice, and Science Appropriations Bill that would prevent the Justice Department from using its funds to enforce the ADA regulations to increase access for people with disabilities to swimming pools. Opposed the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act (H.R. 3356). Opposed legislation that would amend the Americans with Disabilities Act of 1990 to prohibit the Attorney General from administering or enforcing certain accessibility regulations relating to pools at public accommodations or provided by public entities (S. 2191). Opposed legislation that would amend the Americans with Disabilities Act of 1990 to prohibit the Attorney General from administering or enforcing certain accessibility regulations relating to pools at public accommodations or provided by public entities (S. 2186). Support ratification of the Convention on the Rights of Persons with Disabilities to advance the rights of people with disabilities throughout the world.

Supported ratification of the UN Convention on the Rights of Persons with Disabilities.

Prepared and submitted a comment letter to HHS on behalf of the National Disability Leadership Alliance in response to CMS' Center for Consumer Information and Insurance Oversight's December 16th release of a pre-regulatory bulletin on the defnition of the "essential health benefits" to be included in all policies sold on the insurance exchanges nationwide under ACA. United Spinal raised the following issues: the need for more information on model plans; the need for strong federal oversight to ensure adequacy of coverage under the various plan options proposed and compliance with the letter of the law; the need to clarify the relationship of essential benefits for insurance exchange plans to Medicaid coverage and access to long-term services and supports and Medicaid buy-in options; the need for further assurance of an acceptable habilitative care definition and benefit and how mental health parity will be met and the need to determine how and on what basis "medical necessity" will be defined. United Spinal staff also worked closely with the Consortium for Citizens with Disabilities (CCD) to prepare the CCDs comments on this guidance. The CCD response recommended the following to HHS; HHS should establish a federal oversight process; HHS should create an Advisory Board: the Secretary should establish a formal public transparent process to review, EHB plans in future years; HHS should develop and enforce safeguards for EHB coverage; HHS should specify what constitutes a plan that is substantially equal to a benchmark plan; HHS should provide a process for states to include their mandates in their EHB plans at federal expense, at least for an initial two-year period; HHS should prohibit benchmark plans from using benefit-specific limitations; insurers should be directed to capture a patients individual functional needs in determining medical necessity; evidence-based medicine or comparative effectiveness research should be applied in a manner that does not lead to inappropriate restrictions in coverage of and access to therapies, treatments, medications, assistive devices and long term services and supports for people with disabilities and chronic illnesses; HHS should define in regulations the term rehabilitation and habilitation services and devices in the EHB package to explicitly include services that maintain as well as improve function; HHS should apply mental health parity in the EHB context to coverage under the mental health, substance use disorder and behavioral health coverage category; HHS should require plans to use medical criteria to make benefit determinations and disclose such criteria to consumers. United Spinal Association met with CMS Acting Administrator, Marilyn Tavenner to discuss a range of issues including: CMS' power mobility device demonstration project; the importance of creating a separate benefit for complex rehab technology such as sophisticated, customized mobility devices that can save enormous costs in medical and hospitalization costs due to injuries and lesions experienced with the wrong equipment; the impact of CMS' competitive acquisition program on the SCI/D community on access to durable medical equipment and the ability to service such equipment as the Round One Rebid saw a significant diminution in eligible suppliers nationwide; needing consumer representation from United Spinal President Paul Tobin on any external advisory panel that is created to help CMS seriously examine Medicare's treatment of DME and its impacts on those with significant disabilities; and the faulty rationale for Medicare's restrictive policy on approval of wheelchair and other mobility device use in the home only. United Spinal, along with other stakeholders, have crafted legislation to create a separate benefit for complex rehab technology (CRT). CRT is used by individuals with disabilities who have medical conditions significantly different from those experienced by the traditional elderly Medicare population. CRT requires a broader range of services and specialized personnel than those required for standard DME. Many of the products require a physician evaluation and CMS has included additional and more rigorous quality standards with which CRT companies must comply. In March, United Spinal sent letters of support to all members of the House and Senate respectively to encourage sign-on to Dear Colleague letters initiated by Rep . Jim Langevin (D-RI) and Senators Robert Casey (D-PA) and Dick Blumenthal (D-CT), requesting that the Appropriations Committees in each house approve $5 million for the Lifespan Respite Care programs in FY 2013. The letter cautioned that Lifespan Respite Care program is small and therefore vulnerable to being cut without appreciating its value. Yet, the correspondence stated, the program plays a powerful role in helping states to: (1) better coordinate federal, state and local resources; (2) recruit and train respite workers; (3) better train the caregivers themselves; and (4) make more efficient the delivery of both emergency and assigned respite services. Supported reauthorization of the Traumatic Brain Injury Act. This is the only federal legislation that specifically assists states and other entities to develop and expand service delivery systems, and provide needed advocacy to meet the needs and protect the rights of individuals who have sustained a TBI and their families.