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Julia Bascom's picture

Congress has voted on a third bill to address the impact of COVID-19. The $2 trillion bill includes some small pieces for people with disabilities, but fails to recognize the full needs of our community. People with disabilities are disproportionately impacted by COVID-19; not only by the virus itself, but by the strain on the health care system and the disruption to routine services and infrastructure. Congress must ensure that future bills specifically and meaningfully address the ramifications of COVID-19 for the disability community. Our lives, our safety, and our civil rights are on the line.

The bill does take some small but important steps to include the disability community. People with disabilities who rely on SSI, SSDI, Medicaid, and other programs with income or asset limits will be able to receive stimulus checks without being penalized. Medicaid providers who support people with disabilities will be able to access small business loans and can apply for a limited pool of new Medicaid funding to respond to the pandemic. Direct support professionals who work for people with developmental disabilities will be able to come with us if we need to go to the hospital, permanently fixing a long-standing Medicaid waiver glitch. Money Follows the Person has been funded through November, giving states another tool to move people with disabilities out of dangerous congregate settings during this crisis. The Administration for Community Living received $995 million related to pandemic response, including $85 million to support Centers for Independent Living. Important programs for people with disabilities like SNAP (food stamps), education, and housing all received additional funds.

However, the bill largely fails to address the profound crisis facing the disability community. In the days and weeks leading up to this vote, the disability community communicated clearly and frequently with Congress about what we need. Congress made the choice to ignore many of our most pressing issues. The bill does not include:

  • Adequate Medicaid funding to ensure states can provide care to everyone who needs it.
  • Specific grants for home and community-based services to support people with disabilities in our homes and communities during the severe worker shortages caused by COVID-19.
  • Permanent reauthorization of Money Follows the Person, which is necessary in order for states to fully use the program and deinstitutionalize as many people as possible. This has been needed since 2016.
  • Recognizing direct care workers as essential personal, so they can access personal protective equipment and other important resources to keep themselves and the people they support safe.
  • A clear prohibition on discrimination in COVID-19-related health care—even though disability rights advocates are blowing the whistle on states across the country that deem us less worthy of life.
  • Fixing the emergency COVID-19 paid leave program to include family caregivers for adults with disabilities, not just children.
  • Adequate funding to support all students with disabilities, especially those for whom distance learning is not accessible. In addition, the bill asks Secretary DeVos to recommend which parts of IDEA and Section 504 she thinks should be waived, further threatening the rights of students with disabilities.
  • While people who rely on SSI, SSDI, Medicaid, and similar programs will be able to get stimulus checks without impacting income or asset limits, people do have to file taxes in order to get these checks. For almost 4 million people on SSI, who do not file taxes because they have no other income, this is a significant barrier that must be fixed.
  • The bill makes it easier for people on Medicare to get an extra 90-day supply of their medications in case of emergency, but it does not include people on Medicaid or private insurance. It also does not include people with disabilities who rely on controlled substances.

These needs are serious and urgent. If they are not addressed right away, people with disabilities will lose important services that support us in our homes, schools, and communities. We will not get the health care that we need, and our civil rights will be violated. But Congress has now gone into recess and does not plan to return until May. For many people with disabilities, May will be too late. Congress must not stop working until it has fully addressed what our entire country, including people with disabilities, needs in this crisis. ASAN urges Congress to immediately reconvene, remotely if necessary, and begin work on a fourth bill that finally does right by us all.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community run by and for autistic Americans, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

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