All Dependents Count Act of 2020

H.R. 4795, STABLE Act (generally no specific provisions). S. 3652 All Dependents Count Act (generally no specific provisions). H.R. 6420 All Dependent Children Count Act (generally no specific provisions). S.4318 American Workers, Families, and Employers Assistance Act (Provision extending the $500 dependent tax rebate to disabled adult children)

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, Labor, Dept of (DOL), Office of Personnel Management (OPM), SENATE, Small Business Administration (SBA), Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)

-H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with epilepsy including increased federal support for state Medicaid programs and targeted support for Medicaid home- and community-based services; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; institute guardrails and protections around step therapy and other utilization management; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. -H.R. 6420 / S. 3652 All Dependents Count Act, support passage. -H.R. 6680 / S. 3619 Strengthening Unemployment Insurance for Coronavirus Impacted Workers and Students Act, support passage. -H.R. 6305 / S. 3544 Coronavirus Relief for Seniors and People with Disabilities, support passage. -H.R. 2279/S. 2546, Safe Step Act, support passage -H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless -H.R. 2093/S. 1028, STATES Act, support passage -H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage -H.R. 4322/S. 2400, Expanding Cannabis Research and Information Act, support passage -H.R. 1425, Patient Protection and Affordable Care Enhancement Act, support passage.

Client expense: $50,000 · Firm income: Not reported

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

Implementation of the Achieving a Better Life Experience (ABLE) Act, P.L. 113-295 Improvements to ABLE Act Age Adjustment Act, S.651 and H.R.1814 Supporting expansion of the child tax credit and the earned income tax credit. Supporting the Recovery Rebates included in the CARES Act, (H.R. 748) Supporting All Dependents Count Act (S. 3652) included in the HEROES Act (H.R. 6800) Supporting provisions benefitting the non-profit sector in COVID relief legislation

Client expense: $70,000 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), Federal Emergency Management Agency (FEMA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Housing & Urban Development, Dept of (HUD), SENATE, Transportation, Dept of (DOT)

H.R. 748, the CARES Act H.R. 1814/S. 651, the ABLE Age Adjustment Act H.R. 2073/S. 110 H.R. 4045/S. 2290, the Disabled Access Credit Expansion Act H.R. 6420, the All Dependent Children Count Act H.R. 6800, the Health and Economic Recovery Omnibus Emergency Solutions Act or the HEROES Act S. 1628, the Paid Family Leave Pilot Extension Act S. 3652, the All Dependents Count Act Senate COVID Relief Package--Health, Economic Assistance, Liability Protection, and Schools (HEALS) Act Senate COVID Relief Package-- Delivering Immediate Relief to Americas Families, Schools and Small Businesses Act (ANS to S. 178) Implementation of the CARES Act (Public Law 116-136) Senate Draft Bill, Automatic Cash Assistance Act

Client expense: $78,368 · Firm income: Not reported

A bill not yet introduced to provide COVID-19 relief/H.R. 6800, The Heroes Act, provisions to assist the autism community, including increased funding for home and community-based services, special education funding, telehealth, and supplemental funding for research institutions. H.R.7120, George Floyd Justice in Policing Act of 2020, provisions related to law enforcement training. H.R.6420, All Dependent Children Count Act/S. 3652, All Dependents Count Act of 2020, all provisions. H.R.7308, Research Investment to Spark the Economy Act, provisions related to supplemental funding for Institute for Education Services. H.R.8523/S.4100, Supporting Children with Disabilities During COVID-19 Act, all provisions. S.1895, Lower Health Care Costs Act, provisions related to improving public health. S.1122, Mental Health Services for Students Act of 2019, all provisions. Pub. L. No. 114-255, 21st Century Cures Act, provision related to electronic visit verification. Pub. L. No. 116-60, Autism Collaboration, Accountability, Research, Education, and Support Act of 2019, all provisions. Pub. L. No. 116-136, CARES Act, provisions related to recovery rebates for individuals and educational waivers. A bill not yet introduced making appropriations for Fiscal Year 2021, provisions related to autism funding at the National Institutes of Health, Centers for Disease Control and Prevention, the Health Resources and Services Administration, Department of Defense, Department of Education, and other entities. A bill not yet introduced relating to autism services. A bill not yet introduced relating to open access for federally funded research. A bill not yet introduced to create patient-centered health reform. A bill not yet introduced to improve professional development opportunities for educators. Expanding access to and continuing flexibility for telehealth services for autistic individuals. Expanding access for autistic individuals to CHAMPVA benefits. Expanding access for autistic individuals to Medicaid's Early and Periodic Screening, Diagnostic, and Treatment benefit. Ensuring autistic individuals benefit from the Health Resources and Services Administration's programs for Children and Youth with Special Health Care Needs. Ensuring autistic individuals have access to Indian Health Service services.

H.R. 4795, STABLE Act (generally no specific provisions). S. 3652 All Dependents Count Act (generally no specific provisions). H.R. 6420 All Dependent Children Count Act (generally no specific provisions). S.4318 American Workers, Families, and Employers Assistance Act (Provision extending the $500 dependent tax rebate to disabled adult children)

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, SENATE, Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)

COVID-19 Advocacy/CARES Act Support A one-year expansion of federal funding for Medicaid home and community-based services (HCBS), from July 1, 2020 to June 30, 2021. An expansion of the paid leave program to cover family caregiving of adults with disabilities, which would allow all family members, not just parents, to take paid leave for caregiving. Additional pay of up to $10,000 for personal care attendants, home health aides, and direct support professionals for their work during the COVID-19 pandemic. An additional round of Economic Impact Payments, resolving bureaucratic issues for SSI, SSDI, and VA benefits recipients, and fixing an issue that left adult dependents ineligible for these payments. A requirement that that the Department of Health and Human Services (HHS) make specific plans to ensure that COVID-19 testing is accessible to people with disabilities and people with underlying health conditions or compromised immune systems. A requirement that States ensure that absentee or mail-in ballots are accessible for people with disabilities. Support All Dependent Children Count Act introduced by Rep. Craig in the House (H.R. 6420), and Sen. Smiths All Dependents Count Act, S. 3652. Support H.R. 6680 which would disregard unemployment benefits from eligibility consideration for means-tested programs such as SSI and SNAP - Strengthening UI for Coronavirus Impacted Workers and Students Act. Department of Health and Human Services Supported letter to Secretary Azar and Director Severino to express our strong and urgent support for the Departments Office for Civil Rights to issue additional guidance to ensure that schemes to ration scarce health care resources during the coronavirus disease 2019 (COVID-19) pandemic comply with federal nondiscrimination laws. Justice in Aging request HHS Secretary Azar to Remove Barriers for Medicare Enrollment During COVID Pandemic United Spinal joined Justice in Aging and numerous organizations requesting the Department of Health and Human Services take action to remove barriers and to streamline enrollment in health insurance coverage for low-income older adults and people with disabilities who are at highest risk of serious illness and death from COVID-19. United Spinal advocated to exempt non-invasive ventilators from Medicares competitive bidding program which limits choice for consumers and cuts reimbursement to Medicare providers. During the COVID-19 pandemic, it is the wrong time to place additional restrictions on access to life-saving equipment. United Spinal sent in its own letter to Congress along with other stakeholders such as the ALS Association and the company RESMED. As a CCD Rights Task Force co-chair, United Spinal advocacy and policy staff signed a letter to HHS Secretary Alex Azar, CMS Administrator Seema Verma, and CDC Director Robert Redfield urging them to collect and report data on the impact of COVID-19 on people with disabilities, including numbers of tests, testing rates, numbers and rates of positive tests, hospitalizations, deaths and death rates, recoveries, transfers from community living to institutional settings and discharges from institutional settings, and analysis of that data to identify trends and correlational factors. United Spinal advocacy and policy staff provided comments as part of the Disability and Rehabilitation Research Coalition (DRRC) to Senator Warren (D-MA) and Reps. Pressley (D-MA) & Kelly (D-IL) on a bill to require the CDC to collect and report demographic data related to COVID-19; we urged them to include data collection on disability factors. oOn April 14, Reps. Ayanna Pressley, Robin Kelly, and other members of the Congressional Black Caucus, along with Sen. Elizabeth Warren and others introduced the Equitable Data Collection and Disclosure on COVID-19 Act, which would require the Department of Health and Human Services (HHS) to collect and report racial, ethnic, and other demographic data on COVID testing, treatment, and fatality rates. The introduced legislation did mention disability but did not include significant focus on the importance of disability data collection. oMembers of the DRRC, which includes United Spinal, along with other stakeholders, drafted revisions to the legislation. The edits were intended to achieve three purposes: 1) integrate the concerns and interests of the disability community throughout the bill to ensure that disability rights are universally considered civil rights, 2) include on the mandated data collection commission agencies with disability, independent living, and rehabilitation research portfolios, and 3) authorize targeted COVID research funding to NIDILRR comparable to the targeted funding provided to other research agencies. These edits were shared with Sen. Warrens office along with other congressional disability champions, including Sen. Bob Casey (D-PA) and Rep. Jim Langevin (D-RI). Following work in March that resulted in Federal guidance being issued by the Office for Civil Rights (OCR) at the Department of Health and Human Services to remind States and health care providers of their responsibilities under Federal law not to discriminate against people with disabilities in providing health care, United Spinal signed onto a guidance document developed by the disability community outlining principles for states and health care providers to follow in adhering to the Federal guidance. United Spinal also joined over 400 organizations in calling on HHS for additional Federal guidance on nondiscrimination in health care to be issued by OCR. United Spinal, as a member of the ITEM Coalition Steering Committee, endorsed a letter to HHS Secretary Alex Azar urging for improved access to this treatment. We have written to CMS before about the complex and burdensome billing requirements associated with the dNPWT benefit that have resulted in decreased patient access to this important treatment. Proposed Rule and Medicare Advantage (MA), Medicare Part D and Medicaid United Spinal, as a Steering Committee member of CPR endorsed comments to the Centers for Medicare and Medicaid Services highlighting important provisions of benefit to Medicare and Medicaid beneficiaries: Revisions to supplemental benefits for beneficiaries with chronic conditions (SSBCI), Network adequacy requirements for MA plans, Star rating program enhancements, and New tools for beneficiaries under the Medicare prescription drug benefit program (Part D). PCHAlliance Proposed Rule and Medicare Advantage (MA), Medicare Part D and Medicaid United Spinal, as a member of PCHAlliance signed onto this coalitions letter: Interoperable, connected health, requires a broad ecosystem of shared digital health information. It is particularly noteworthy that this proposed rule advances Medicare Advantage coverage of patient centered digital, interoperable, connected healthcare. PCHAlliance members support the advancement of evidence based connected health. CMS work to develop and ensure appropriate use of connected care is particularly noteworthy as one of the key enablers of modernizing Medicare for the use of evidence based connected care is to improve patient outcomes. United Spinal comments on FY 2021-2025 NIH-Wide Strategic Plan Framework United Spinal provided comments on the National Institutes of Healths (NIH) Request for Information on the FY 2021-2025 NIH-Wide Strategic Plan Framework, in support of strengthening and advancing disability and rehabilitation research and included support of the comments submitted by the Disability and Rehabilitation Research Coalition, of which United Spinal Association is a member. United Spinal supports COVID-19 Recovery for Seniors and People with Disabilities Act - S. 3740. United Spinal supports Nursing Home COVID-19 Protection and Prevention Act - S. 3768. United States Postal Services (USPS) - COVID-19 United Spinal signed onto a letter, facilitated by AARP, to House and Senate leadership in support of USPS continued funding in order to provide the vital services that millions of Americans, especially older Americans and those with chronic conditions, depend upon, especially during this pandemic, as it relates to pharmacy and medical supplies needs as well as access to voting. United Spinal sent a letter to the U.S. Senate Aging Committee thanking them for holding a hearing examining the devastating impact COVID-19 has had on nursing homes and urging them to engage the disability community as they seek solutions. Support increased appropriations funding for the SCI Model Systems under the NIDILRR grant. Support continued appropriations funding for CDC's National Neurological Conditions Surveillance System. As a member of the Coalition to Preserve Rehabilitation Steering Committee, United Spinal endorsed these comments: Medicare Program; Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities; Updates to the Value-Based Purchasing Program for Federal Fiscal Year 2021 [CMS-1737-P, RIN: 0938-AU13] - Concerns with the Patient-Driven Payment Model. CPR continues to be concerned with the observed and ongoing impact of the Patient-Driven Payment Model (PDPM) implemented in the SNF PPS effective October 1, 2019. CMS implemented this new case-mix classification model to group patients admitted to SNFs during covered Medicare Part A stays, replacing the Resource Utilization Group, Version IV (RUG-IV) system. As a member of the Coalition to Preserve Rehabilitation Steering Committee, United Spinal endorsed these comments: Medicare Program; Inpatient Rehabilitation Facility Prospective Payment System for Federal Fiscal Year 2021 Proposed Rule [CMS-1729-P; RIN 0938-AU05]. Under this proposal, non-physician practitioners would be able to conduct or designate another certified clinician to conduct the preadmission screening (PAS), review and concur with the findings of the preadmission screening, conduct the post-admission physician evaluation (PAPE), which CMS proposes to eliminate, lead the required weekly interdisciplinary team meetings, conduct required face-to-face visits with the patient, and develop and modify the patients plan of care. In sum, CMS proposes to defer to the IRF to determine whether a non-physician practitioner has sufficient specialized training and experience in inpatient rehabilitation to essentially fulfill the role of the rehabilitation physician. CPR views this proposal as a major broadside attack on the integrity and value of care provided by inpatient rehabilitation hospitals and units. We strongly oppose this proposal and believe that, if finalized, it would materially undercut IRF care and decrease the level and quality of care provided in an IRF, potentially causing significant harm to patients with complex conditions who need an intensive, coordinated, interdisciplinary course of inpatient hospital-level rehabilitation treatment.

-H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with epilepsy including increased federal support for state Medicaid programs and targeted support for Medicaid home- and community-based services; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; institute guardrails and protections around step therapy and other utilization management; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. -H.R. 6420/S. 3652 All Dependents Count Act, support passage. -H.R. 6680/S. 3619 Strengthening Unemployment Insurance for Coronavirus Impacted Workers and Students Act, support passage. -H.R. 6305/S. 3544 Coronavirus Relief for Seniors and People with Disabilities, support passage. -H.R. 2279/S. 2546, Safe Step Act, support passage. -H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless. -H.R. 2093/S. 1028, STATES Act, support passage. -H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage. -H.R. 4322/S. 2400, Expanding Cannabis Research and Information Act, support passage.

Client expense: $60,000 · Firm income: Not reported

Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage

H.R. 748, the CARES Act H.R. 1814/S. 651, the ABLE Age Adjustment Act H.R. 2073/S. 110 H.R. 4045/S. 2290, the Disabled Access Credit Expansion Act H.R. 6420, the All Dependent Children Count Act H.R. 6800, the Health and Economic Recovery Omnibus Emergency Solutions Act or the HEROES Act S. 1628, the Paid Family Leave Pilot Extension Act S. 3652, the All Dependents Count Act Implementation of the CARES Act (Public Law 116-136) Senate Draft Bill, Automatic Cash Assistance Act

Client expense: $71,212 · Firm income: Not reported

Government targets: AMTRAK - Natl Railroad Passenger Corporation, Architectural & Transportation Barriers Compliance Board, Centers For Medicare and Medicaid Services (CMS), Education, Dept of, Federal Emergency Management Agency (FEMA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Housing & Urban Development, Dept of (HUD), Internal Revenue Service (IRS), Justice, Dept of (DOJ), Labor, Dept of (DOL), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation Security Administration (TSA), Transportation, Dept of (DOT), Veterans Affairs, Dept of (VA), Veterans Employment & Training Service

Implementation of the Achieving a Better Life Experience (ABLE) Act, P.L. 113-295 Improvements to ABLE Act Age Adjustment Act, S.651 and H.R.1814 Supporting expansion of the child tax credit and the earned income tax credit. Supporting the Recovery Rebates included in the CARES Act, (H.R. 748) Supporting dependent rebates (S. 3652) included in the HEROES Act (H.R. 6800) Supporting the Disclosure of Tax Havens and Offshoring Act (S. 1609; H.R. 5933)

Client expense: $70,000 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), Federal Emergency Management Agency (FEMA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Housing & Urban Development, Dept of (HUD), SENATE, Transportation, Dept of (DOT)

A bill not yet introduced to provide COVID-19 relief/H.R. 6800, The Heroes Act, provisions to assist the autism community, including increased funding for home and community-based services, special education funding, telehealth, and supplemental funding for research institutions. H.R 7120, George Floyd Justice in Policing Act of 2020, provisions related to law enforcement training. H.R. 6420, All Dependent Children Count Act/S. 3652, All Dependents Count Act of 2020, all provisions. H.R.7308, Research Investment to Spark the Economy Act, all provisions. S.4100, Supporting Children with Disabilities During COVID-19 Act, all provisions. S. 1895, Lower Health Care Costs Act, provisions related to improving public health. Pub. L. No. 115-199, RAISE Family Caregivers Act, all provisions Pub. L. No. 116-60, Autism Collaboration, Accountability, Research, Education, and Support Act of 2019, all provisions. Pub. L. No. 116-136, CARES Act, provisions related to recovery rebates for individuals and educational waivers. A bill not yet introduced making appropriations for Fiscal Year 2021, provisions related to autism funding at the National Institutes of Health, Centers for Disease Control and Prevention, the Health Resources and Services Administration, Department of Defense, Department of Education, and other entities. A bill not yet introduced to create a navigator program for individuals with autism and other developmental disabilities A bill not yet introduced to create patient-centered health reform Expanding access to and continuing flexibility for telehealth services for autistic individuals Providing additional COVID-19 relief for the autism community

Client expense: $100,000 · Firm income: Not reported

H.R. 4795, STABLE Act (generally no specific provisions). S. 3652 All Dependents Count Act (generally no specific provisions). H.R. 6420 All Dependent Children Count Act (generally no specific provisions).

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, SENATE, Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)