• Research into spinal muscular atrophy, timely access to care, treatments, medical devices, and home and community-based services, newborn screening, newborn screening funding, coverage of rare disease treatments and care, HCBS Access Act (H.R. 1493, S. 762), BENEFIT Act (H.R. 1092, S. 526), Safe Step Act (S. 652, H.R. 2630), Protecting Health Care for All Patients Act of 2023 (H.R. 485), Supporting Our Direct Care Workforce & Family Caregivers Act (S. 1298), HCBS Relief Act (S. 3118, H.R. 6296); Recognizing the Role of Direct Support Professionals Act (S. 1332), Medicaid unwinding protections for people with SMA and other disabilities, direct care workforce shortage, healthcare discrimination (i.e., quality adjusted life years), Ensuring Patient Access to Critical Breakthrough Products Act (H.R. 1691); healthcare utilization protocols (i.e., prior authorization and step therapy), Patient Protection and Affordable Care Act (111-148), Inflation Reduction Act (P.L. 117-169), Supporting accessible medical diagnostic equipment, Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 2706/S. 1183), Lifespan Respite Reauthorization Act (H.R. 6160), Stop Unfair Medicaid Recoveries Act (H.R. 7573)
• National Institutes of Health research into spinal muscular atrophy, newborn screening funding, Social Security Administration funding, federal disability program funding, including education (IDEA programs), emergency preparedness (FEMA), employment (vocational rehabilitation program), housing (Sec. 811 Housing for People with Disabilities & Mainstream Housing Choice Vouchers), technology (assistive technology state grants), and transportation, Further Consolidated Appropriations Act of 2024 (H.R.2882)
• Individuals with Disabilities Education Act (P.L. 94-142), IDEA Full Funding Act (H.R. 4519, S. 2217), IDEA programs, RISE Act (S. 1071), Reimagining Inclusive Arts Education Act (H.R.7261), disability accommodations for students with SMA and other disabilities, Career and Technical Education, Labor-HHS-Education Appropriations bill
• Accessible transportation for people with SMA and other disabilities, including accessible air travel, mass transit, and trains. Air Carrier Access Amendments Act (S. 545, H.R. 1267), Securing Growth and Robust Leadership in American Aviation Act (H.R. 3935), FAA Reauthorization Act (S. 1939), Prioritizing Accountability and Accessibility for Aviation Consumers Act (S. 400, H.R. 1445), Emergency Vacating of Aircraft Cabin Act (S. 1765), Airport Accessibility Act, Air Carrier Access Act (P.L. 92-313), MOBILE Act (S. 1459, H.R. 3082), Disability Access to Transportation Act (H.R. 3845, S. 1813), Airport Universal Changing Station bill, ADA Standards for Transportation Facilities, Transportation-HUD Appropriations bill
• Individuals with Disabilities Act (P.L. 101-336), nondiscrimination for people with disabilities, healthcare access, Supplemental Security Income Program, SSI In-Kind Support and Maintenance, SSI asset limit, disability marriage fairness, Marriage Equality for Disabled Adults Act, Supplemental Security Income Savings Penalty Elimination Act (H.R. 5408, S. 2767), SSI Restoration Act (H.R.3824), emergency disaster preparedness for people with SMA and other disabilities (REAADI for Disasters: S. 1049/ H.R. 2371; Pandemic and All-Hazards Preparedness Act; Disaster Relief Medicaid Act (S. 3120, H.R. 6029)
• Medicaid home and community-based services, continuation of HCBS services following the public health emergency, Medicaid unwinding, healthcare access and coverage, including to patient preferred treatment, assistive technology devices, and durable medical equipment, such as power wheelchairs and power wheelchair features such as seat elevators and standing systems, HCBS Access Act (H.R. 1493, S. 762), HCBS Relief Act (S. 3118, H.R. 6296), Supporting Our Direct Care Workforce & Family Caregivers Act (S. 1298), Recognizing the Role of Direct Support Professionals Act (S.1332), Stop Unfair Medicaid Recoveries Act (H.R. 7573), Long-term Care Workforce Support Act
• Promote employment opportunities for people with SMA and other disabilities, reasonable accommodations and workforce protections for workers with SMA and other disabilities, direct care workforce shortage (DSP standard occupational classification), vocational rehabilitation, Labor-HHS-Education Appropriations bill, Disability Employment Incentive Act, Transformation to Competitive Integrated Employment Act (S. 533, H.R. 1263), Supporting Our Direct Care Workforce & Family Caregivers Act (S.1298), Recognizing the Role of Direct Support Professionals Act (H.R. 2941; S. 1332), Apprenticeship and Career and Technical Education Programs NPRM
• Disability employment tax incentives, Disability Employment Incentive Act, ABLE Act (113-295), Supplemental Security Income Savings Penalty Elimination Act (H.R. 5408, S. 2767), Supplemental Security Income (asset limit), SSI rental liability determination
• Access to assistive technology devices and durable medical equipment, including power wheelchairs and wheelchair options such as seat elevators and standing systems, Ensuring Patient Access to Critical Breakthrough Products Act of 2023 (H.R. 1691), assistive technology state grants
• disaster preparedness for people with SMA and other disabilities (REAADI for Disasters: S. 1049/ H.R. 2371), Pandemic and All Hazard Preparedness Act (P.L. 113-5), PAPHRA Reauthorization Act (S. 2333), Disaster Relief Medicaid Act (S. 3120, H.R. 6029)
• Accessible, affordable housing for people with disabilities, Section 811 Supportive Housing for Persons with Disabilities, Housing Choice Program, rental subsidy policies, Transportation-HUD Appropriations Bill

Duration: August 28, 2017 to present

General Issues: Health Issues, Budget/Appropriations, Education, Transportation, Civil Rights/Civil Liberties, Medicare/Medicaid, Unemployment, Taxation/Internal Revenue Code, Science/Technology, Disaster Planning/Emergencies, Housing, Defense

Spending: about $1,302,500 (But it's complicated. Here's why.)

It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.

Agencies lobbied since 2017: Health & Human Services - Dept of (HHS), House of Representatives, U.S. Senate, Food & Drug Administration (FDA), Centers For Medicare and Medicaid Services (CMS), Centers For Disease Control & Prevention (CDC), Natl Institutes of Health (NIH), Transportation - Dept of (DOT), Housing & Urban Development - Dept of (HUD), Education - Dept of, Labor - Dept of (DOL), Social Security Administration (SSA), Federal Emergency Management Agency (FEMA), White House Office, Homeland Security - Dept of (DHS), Energy - Dept of