CURE SMA for CURE SMA

Health Issues HCR

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), Long-Term Care Workforce Support Act (S.4120/H.R.7994); 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); Creating Hope Reauthorization Act (H.R.7384/ S. 4583), 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), accessible medical diagnostic equipment, durable medical equipment, intermittent catheter coding, FDA Rare Disease Center of Excellence, Think Differently Database Act (H.R.670), Accelerating Kids Access to Care Act ((H.R.4758/S.2372)

Contacted: SENATE; Centers For Medicare and Medicaid Services (CMS); Natl Institutes of Health (NIH); Centers For Disease Control & Prevention (CDC); Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; Food & Drug Administration (FDA)

Bills named: H.R. 1493 (118th), S. 1298 (118th), S. 762 (118th), H.R. 1691 (118th), H.R. 6296 (118th), H.R. 2706 (118th), H.R. 7994 (118th), H.R. 7384 (118th), S. 1183 (118th), S. 3118 (118th), H.R. 670 (118th), H.R. 4758 (118th), S. 652 (118th), H.R. 1092 (118th), H.R. 2630 (118th), H.R. 485 (118th), S. 526 (118th), H.R. 6160 (118th), S. 1332 (118th), S. 4583 (118th), S. 4120 (118th), S. 2372 (118th), H.R. 7573 (118th)

Budget/Appropriations BUD

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 (accessible airport pilot program), Further Consolidated Appropriations Act of 2024 (H.R.2882), fiscal year 2025 Labor-HHS-Education Appropriations bills, FY 2025 Transportation-HUD Appropriations bills

Contacted: Centers For Disease Control & Prevention (CDC); Housing & Urban Development, Dept of (HUD); Natl Institutes of Health (NIH); Health & Human Services, Dept of (HHS); Social Security Administration (SSA); Federal Emergency Management Agency (FEMA); HOUSE OF REPRESENTATIVES; Transportation, Dept of (DOT); Education, Dept of; Labor, Dept of (DOL); SENATE

Bills named: H.R. 2882 (118th)

Education EDU

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 (IDEA Program funding)

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Education, Dept of

Bills named: H.R. 7261 (118th), H.R. 4519 (118th), S. 2217 (118th), S. 1071 (118th)

Transportation TRA

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/H.R.3935), 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 (accessible airport pilot program funding)

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

Bills named: S. 1813 (118th), S. 400 (118th), H.R. 3082 (118th), S. 1939 (118th), H.R. 1267 (118th), S. 1459 (118th), S. 1765 (118th), S. 545 (118th), H.R. 3935 (118th), H.R. 3845 (118th), H.R. 1445 (118th)

Civil Rights/Civil Liberties CIV

Individuals with Disabilities Act (P.L. 101-336), nondiscrimination for people with disabilities, healthcare access, accessible medical diagnostic equipment, innovative durable medical equipment, 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), Disability Pride Month Resolution

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

Bills named: H.R. 2371 (118th), H.R. 6029 (118th), H.R. 3824 (118th), H.R. 5408 (118th), S. 3120 (118th), S. 2767 (118th), S. 1049 (118th)

Medicare/Medicaid MMM

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, accessible diagnostic equipment, and durable medical equipment, such as power wheelchairs and power wheelchair features such as seat elevators and standing systems, intermittent catheter coding, 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 ((S.4120/H.R.7994), Creating Hope Reauthorization Act (H.R.7384/ S. 4583)

Contacted: Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE; Centers For Medicare and Medicaid Services (CMS)

Bills named: S. 3118 (118th), H.R. 7573 (118th), S. 1332 (118th), S. 4583 (118th), H.R. 7384 (118th), S. 762 (118th), S. 4120 (118th), H.R. 7994 (118th), H.R. 1493 (118th), S. 1298 (118th), H.R. 6296 (118th)

Unemployment UNM

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, Long-Term Care Workforce Support Act (S.4120/H.R.7994)

Contacted: HOUSE OF REPRESENTATIVES; Centers For Medicare and Medicaid Services (CMS); SENATE; Education, Dept of; Labor, Dept of (DOL)

Bills named: H.R. 1263 (118th), H.R. 7994 (118th), H.R. 2941 (118th), S. 1298 (118th), S. 1332 (118th), S. 533 (118th), S. 4120 (118th)

Taxation/Internal Revenue Code TAX

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

Contacted: HOUSE OF REPRESENTATIVES; SENATE

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

Science/Technology SCI

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, FY 2024 Labor-HHS-Education Appropriations bill

Contacted: Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS); Education, Dept of; SENATE

Bills named: H.R. 1691 (118th)

Disaster Planning/Emergencies DIS

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)

Contacted: Homeland Security, Dept of (DHS); HOUSE OF REPRESENTATIVES; Federal Emergency Management Agency (FEMA); SENATE

Bills named: S. 3120 (118th), S. 1049 (118th), H.R. 2371 (118th), S. 2333 (118th), H.R. 6029 (118th)

Housing HOU

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

Contacted: SENATE; Housing & Urban Development, Dept of (HUD); HOUSE OF REPRESENTATIVES