ACLU Petition Sent to Federal Agencies on Disability Death Toll in Congregate Settings


June 25, 2020 | by Amber Smock

Access Living friends and allies:

Today, we’d like to bring your attention to a federal petition filed on Tuesday, related to the horrifying loss of disabled lives due to Covid-19 in congregate settings, with disproportionate impact on people of color and poor people. The full document, posted at the national American Civil Liberties Union (ACLU) website, can be read at this link.

The petition calls out the U.S. Department of Health and Human Services (HHS) and its agencies, the Centers for Medicare and Medicaid Services (CMS), Center for Clinical Standards and Quality (CCSQ), and the Centers for Disease Control and Prevention (CDC). The petition’s lead organizational authors are the ACLU and Service Employees International Union, with the national cosigners being the American Association of People with Disabilities, Autistic Self-Advocacy Network, Disability Rights Education and Defense Fund, National Council on Independent Living, Partnership for Inclusive Disaster Strategies, and World Institute on Disability.

The petition makes the argument that HHS and its agencies have failed their responsibilities in at least four ways that have unnecessarily magnified the death toll for people who live in nursing homes and other congregate settings for people with disabilities:

  • Hiding the true size of the problem.
  • Creating bad circumstances in congregate settings, and not doing anything to stop them.
  • Failing to reduce crowding in congregate settings for people with disabilities.
  • Issuing incomplete, inconsistent, and confusing guidance.

The petition makes the case that the congregate setting crisis disproportionately affects marginalized people in the following ways:

  • Nursing homes with predominantly Black and Latinx residents have been twice as likely to be hit by COVID-19 as predominantly white nursing homes.
  • More than 60 percent of nursing homes where at least a quarter of the residents are Black or Latinx have reported at least one coronavirus case, which is double that where Black and Latinx people are less than 5 percent of the population.
  • The workforce serving congregate settings for people with disabilities are disproportionately women of color. Eighty-two percent of aides in long-term care facilities are women; nearly one third of aides are Black; 16 percent are Latinx; 23 percent are immigrants.

The advocates lay out three main areas of action items under three main categories:

  • Require transparency and accountability
  • Reduce the census in congregate settings
  • Protect residents and staff

We note that resolving this situation does NOT mean we need more congregate settings. In fact, we note that despite the existence of federal and state disability rights laws and courts decisions, people with disabilities STILL remain under threat for our lives due to failure to build and invest in housing for people with disabilities, and community based programs.

The ACLU is also beginning a blog series on this topic. Read the first installment by Susan Mizner at this link.

Please share this broadly with concerned advocates.