UNITED SPINAL ASSOCIATION for UNITED SPINAL ASSOCIATION

Health Issues HCR

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.

Contacted: Labor, Dept of (DOL); Transportation, Dept of (DOT); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); Federal Communications Commission (FCC); Centers For Medicare and Medicaid Services (CMS); Social Security Administration (SSA); Food & Drug Administration (FDA); SENATE; Agriculture, Dept of (USDA); Health & Human Services, Dept of (HHS); AMTRAK - Natl Railroad Passenger Corporation

Bills named: H.R. 2073 (116th), S. 110 (116th), H.R. 1301 (116th), S. 1835 (116th)

Taxation/Internal Revenue Code TAX

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

Contacted: Federal Communications Commission (FCC); SENATE; Natl Institutes of Health (NIH); Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); Agriculture, Dept of (USDA); Social Security Administration (SSA); Transportation, Dept of (DOT); AMTRAK - Natl Railroad Passenger Corporation; Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS)

Bills named: H.R. 1814 (116th), S. 651 (116th)

Medicare/Medicaid MMM

Department of Health and Human Services (HHS) United Spinal, as a Steering Committee Co-Chair of both ITEM Coalition and the Coalition to Preserve Rehabilitation, met with HHS External Affairs team to discuss the need for specialized rehabilitation for our population and the importance of protections for customized wheelchair features such as standing wheelchairs and seat elevation. Continue to advocate for opposition to HHS competitive bidding program for customized wheelchairs and ventilators and medical supplies to be included in Medicares competitive bidding program. United Spinal signed on to and helped draft a letter to the Centers for Medicare and Medicaid Services (CMS) opposed to including ventilators in the competitive bidding program. As part of the ITEM Coalition and CPR Steering Committees and HAB Coalition membership, we also raised concerns in a letter to CMS on its proposal to expand the sale of health insurance across state lines which may leave adults and children, particularly those with disabilities and chronic health conditions, with less comprehensive coverage and higher out-of-pocket costs but we support the efforts of increasing coverage in general. Sent letters to CMS opposing inclusion of ventilators in Medicares competitive bidding program. Worked with PCHA, ResMed and helped draft letters for the ITEM Coalition for Congress. 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. United Spinal, as a member of the MAP Rx Coalition, signed onto a letter to leadership of the House Ways and Means Committee and the Energy & Commerce Committee supporting caps to out of pocket costs for Medicare Part D beneficiaries and other issues. CMS As a member of the Personal Connected Health Alliance (PCHAlliance), a non-profit membership association, United Spinal joined in comments on the Interoperability and Patient Access for Medicare Advantage Organization and Medicaid Managed Care Plans, State Medicaid Agencies, CHIP Agencies and CHIP Managed Care Entities, Issuers of Qualified Health Plans in the Federally-Facilitated Exchanges and Health Care Providers (CMS-9115-P) in an effort to advance CMS policy to enable consumers access to health information and administrative consumer information. United Spinal Association supports H.R.3215/S.1754 - Disaster Relief Medicaid Act which would ensure that Medicaid-eligible individuals displaced during a disaster are able to access those same services. United Spinal submitted a letter of support for H.R. 1839/ Medicaid Services Investment and Accountability Act of 2019, Public Law 116-16. This bill extends protection for Medicaid recipients of home and community-based services against spousal impoverishment as well as strengthens the Medicaid program for children with complex medical needs and protects seniors and people with disabilities. Medicares Competitive Bidding Program United Spinal, as a member of the ITEM Coalitions Steering Committee, United Spinal helped draft and singed on to letters to Congress supporting CRT bills and exemption of manual CRT accessories from competitive bidding as well as opposition to inclusion of ventilators in the competitive bidding program and helped with additional Congressional signatories to opposing including ventilators in the program.

Contacted: Centers For Medicare and Medicaid Services (CMS); Social Security Administration (SSA); Transportation, Dept of (DOT); Natl Institutes of Health (NIH); Labor, Dept of (DOL); Health & Human Services, Dept of (HHS); Food & Drug Administration (FDA); Federal Communications Commission (FCC); HOUSE OF REPRESENTATIVES; Agriculture, Dept of (USDA); AMTRAK - Natl Railroad Passenger Corporation; SENATE

Bills named: S. 1223 (116th), H.R. 1839 (116th), H.R. 2408 (116th), H.R. 2293 (116th), S. 1754 (116th), H.R. 3215 (116th)

Civil Rights/Civil Liberties CIV

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.

Contacted: Food & Drug Administration (FDA); Natl Institutes of Health (NIH); Centers For Medicare and Medicaid Services (CMS); Federal Communications Commission (FCC); Social Security Administration (SSA); Transportation, Dept of (DOT); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); SENATE; AMTRAK - Natl Railroad Passenger Corporation; Health & Human Services, Dept of (HHS); Agriculture, Dept of (USDA)

Bills named: H.R. 555 (116th), S. 117 (116th)

Agriculture AGR

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.

Contacted: Agriculture, Dept of (USDA); HOUSE OF REPRESENTATIVES; Social Security Administration (SSA); Transportation, Dept of (DOT); Centers For Medicare and Medicaid Services (CMS); Federal Communications Commission (FCC); AMTRAK - Natl Railroad Passenger Corporation; Food & Drug Administration (FDA); Health & Human Services, Dept of (HHS); SENATE; Natl Institutes of Health (NIH); Labor, Dept of (DOL)

Transportation TRA

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.

Contacted: AMTRAK - Natl Railroad Passenger Corporation; SENATE; Health & Human Services, Dept of (HHS); Natl Institutes of Health (NIH); Food & Drug Administration (FDA); Transportation, Dept of (DOT); Social Security Administration (SSA); Centers For Medicare and Medicaid Services (CMS); Labor, Dept of (DOL); Agriculture, Dept of (USDA); HOUSE OF REPRESENTATIVES; Federal Communications Commission (FCC)

Disaster Planning/Emergencies DIS

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.

Contacted: Food & Drug Administration (FDA); Natl Institutes of Health (NIH); Social Security Administration (SSA); Federal Communications Commission (FCC); AMTRAK - Natl Railroad Passenger Corporation; Transportation, Dept of (DOT); Labor, Dept of (DOL); Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE; Agriculture, Dept of (USDA)

Bills named: S. 1755 (116th), H.R. 3208 (116th)

Veterans VET

H.R. 1925/S. 898: A bill to designate the Manhattan Campus of the New York Harbor Health System of the Department of Veterans Affairs as the Margaret Cochran Corbin Campus of the New York Health Care System". Supporting the first renaming of a VAMC after a woman veteran by providing a letter of support directly to the House Veterans Affairs Committee. Margaret Corbin was the first female combat veteran to receive a pension from the US government, serving in the Revolutionary War. H.R. 846, the Veterans Serving Veterans Act Provided letter of support to Rep Gonzalez-Colons office for the Veterans Serving Veterans Act which directs the Secretary of the VA to establish a vacancy recruitment database to facilitate the recruitment of certain members of the Armed Forces to satisfy occupational needs within the Department in order to overcome chronic staffing shortage. H.R. 2557, The Get Veterans a Doctor Now Act Provided letter of support to Representative Sean Patrick Maloneys office for the Get Veterans a Doctor Now Act, which allows the VA to recruit resident physicians earlier, offering doctors a conditional job offer up to two years prior to their graduation. H.R. 299: The Blue Water Navy Vietnam Veterans Act. Signed onto joint letter of support to the HVAC as part of the 18-member National Military and Veterans Alliance. This act recognizes and brings relief to veterans who, during active military, naval, or air service, served offshore of the Republic of Vietnam during the period beginning on January 9, 1962, and ending on May 7, 1975 by amending Title 38 to recognize the presumption that these veterans have been exposed to the herbicide Agent Orange, notwithstanding that there is no record of evidence of such disease during the period of such service.

Contacted: Transportation, Dept of (DOT); Federal Communications Commission (FCC); Health & Human Services, Dept of (HHS); Natl Institutes of Health (NIH); Labor, Dept of (DOL); HOUSE OF REPRESENTATIVES; Food & Drug Administration (FDA); Centers For Medicare and Medicaid Services (CMS); AMTRAK - Natl Railroad Passenger Corporation; Social Security Administration (SSA); SENATE; Agriculture, Dept of (USDA)

Bills named: H.R. 1925 (116th), H.R. 2557 (116th), S. 898 (116th), H.R. 299 (116th), H.R. 846 (116th)

Budget/Appropriations BUD

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.

Contacted: AMTRAK - Natl Railroad Passenger Corporation; Centers For Medicare and Medicaid Services (CMS); Natl Institutes of Health (NIH); Health & Human Services, Dept of (HHS); Food & Drug Administration (FDA); SENATE; Agriculture, Dept of (USDA); HOUSE OF REPRESENTATIVES; Social Security Administration (SSA); Federal Communications Commission (FCC); Transportation, Dept of (DOT); Labor, Dept of (DOL)

Aviation/Airlines/Airports AVI

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

Contacted: Labor, Dept of (DOL); Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES; Centers For Medicare and Medicaid Services (CMS); Social Security Administration (SSA); Federal Communications Commission (FCC); Health & Human Services, Dept of (HHS); Transportation, Dept of (DOT); Agriculture, Dept of (USDA); AMTRAK - Natl Railroad Passenger Corporation; Natl Institutes of Health (NIH); SENATE

Bills named: H.R. 1549 (116th), S. 669 (116th), H.R. 302 (116th)

Labor Issues/Antitrust/Workplace LBR

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.

Contacted: SENATE; AMTRAK - Natl Railroad Passenger Corporation; Agriculture, Dept of (USDA); Social Security Administration (SSA); Natl Institutes of Health (NIH); Transportation, Dept of (DOT); Centers For Medicare and Medicaid Services (CMS); Federal Communications Commission (FCC); Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); Health & Human Services, Dept of (HHS)

Bills named: H.R. 873 (116th), S. 260 (116th)

Science/Technology SCI

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.

Contacted: Health & Human Services, Dept of (HHS); Natl Institutes of Health (NIH); Federal Communications Commission (FCC); AMTRAK - Natl Railroad Passenger Corporation; Labor, Dept of (DOL); HOUSE OF REPRESENTATIVES; Social Security Administration (SSA); Agriculture, Dept of (USDA); SENATE; Transportation, Dept of (DOT); Centers For Medicare and Medicaid Services (CMS); Food & Drug Administration (FDA)

Communications/Broadcasting/Radio/TV COM

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.

Contacted: AMTRAK - Natl Railroad Passenger Corporation; Transportation, Dept of (DOT); Agriculture, Dept of (USDA); Centers For Medicare and Medicaid Services (CMS); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; Labor, Dept of (DOL); Federal Communications Commission (FCC); Natl Institutes of Health (NIH); Social Security Administration (SSA); Food & Drug Administration (FDA); SENATE