National Call To Action: A Year Later

March 5, 2021

One year ago, The Partnership for Inclusive Disaster Strategies, the World Institute on Disability, and the National Council on Independent Living issued a National Disability Rights Call To Action to federal, state, and local governments to remind them of their obligation to protect the rights and lives of 61 million disabled people across the United States in response to the COVID-19 public health emergency. 

This Call To Action gained the support of 183 disability rights and disability justice organizations and our allies across the nation. One year later, hundreds of thousands of people with disabilities across the nation have died from COVID-19. Most were Black, Brown, Indigenous, and other multiply marginalized disabled people who continue dying at a disproportionately high rate. This massive loss of the lives of people with disabilities of all ages is due to the refusal to act and is nothing less than a genocide.

This is especially egregious because our Call To Action, our shared lived experiences, and our expertise were ignored. From the moment that the public health emergency and major disaster declarations were declared, federal, state, and local governments were derelict in complying with their obligations to the protected class of people with disabilities. To make matters worse, rather than defining people as disabled, with unwavering civil rights protections, people with disabilities of all ages were routinely classified as “old,” “fragile,” “vulnerable,” and as having “underlying conditions.” This disconnect facilitated an unlawful abrogation of the governments’ civil rights responsibilities, with lethal results.

According to the American Community Survey, 96.3% of all nursing home residents have disabilities.

Among all COVID-19 deaths, the CDC has determined that 94% were people with “comorbidities” and “underlying conditions.” These terms are euphemisms for disability and these individuals should have been afforded civil rights protections. This means 486,000 of all COVID-19 deaths thus far have been people with disabilities.

34% of all COVID-19 deaths were of people who live or work in nursing homes. In other words, at least 174,000+ of all COVID-19 deaths were people with disabilities in nursing homes and most were Black, Brown, Indigenous and other multiply marginalized people.

The death toll reflects the reality of the genocide:

According to CDC, in the first eight weeks of 2021 alone, over 15,000 people with disabilities died from COVID-19 in long-term care facilities, a 14% increase over 28 days. With 62,168 new long-term care facility admissions in the past month, it is clear that the safety of the people being admitted is disregarded in favor of capitalist priorities to fill empty death beds and keep government and third-party funds flowing. The horrifying picture is worsened by the fact that only 1/3 of staff in these facilities have opted to be vaccinated, posing a very real threat to newly admitted people who are COVID-negative. Despite the staggering numbers and the clear indication that these facilities are not safe, people with disabilities continue to be forced into facilities and used as cash cows.

Our previous Call To Action foresaw the lack of response to the COVID-19 pandemic that would disproportionately harm or kill disabled people of all ages. Similar to previous disasters, our community was left behind, ignored, and abandoned. This time, due to blatant unwillingness to act, the death toll has been so massive that it can no longer be considered incidental. Concurrent disasters throughout the pandemic have further illustrated just how inadequate government is at every level.

Our Call to Action predicted many inevitabilities, but the list of failures was even more egregious:  

  • Black, Brown, Indigenous, and other multiply marginalized people died and are continuing to die at disproportionate rates
  • Lack of continuity of operations, programs, and service plans
  • Lack of equally effective communication, including life-saving instructions
  • Inaccessible crisis counseling
  • Discriminatory medical rationing 
  • Denial of lifesaving treatment
  • Denial of aids, services, and family support in medical settings
  • Denial of special education programs and services
  • Government sanctioned waivers of civil rights 
  • Ignoring daily living needs: direct support providers and personal assistance services and to maintain health, safety, and independence
  • Denial of personal protective equipment, bulk distribution of food, medication, and health maintenance supplies
  • Absence of instructions and training on legal obligations 
  • Denial of individual right to take legal action through liability shields
  • Medical experimentation on disabled people in congregate and acute care settings
  • Denial of the right to live in the community: services in the most integrated setting appropriate
  • Lack of consultation with disability community leaders who are subject matter experts
  • Congregate facilities, including carceral, youth, mental health, other detention, and pseudo-community-based facilities, are widely known to house very high percentages of people with disabilities, but without the lifesaving and life-sustaining protections to which they are entitled. 

The federal government has consistently failed to meet its responsibility to disabled people throughout the pandemic, and in ensuring that federal funds granted and subgranted are spent in compliance with obligations under the Rehabilitation Act. 

  • FEMA has engaged in discriminatory actions against disabled people and has repeatedly refused to meet with disabled subject matter experts, even as recently as in February 2021. 
  • HHS has repeatedly enacted waivers that enable states to place people with disabilities in nursing facilities or “death pits,'' as they are referred to by the New York Times. 
  • Data collection requirements are waived, as well, adding to the dangers for people moved into dangerous settings.
  • Key federal agencies with leadership responsibilities for COVID response exclude disability-led organizations from decision-making roles. 

Local governments have also perpetrated failures in meeting their obligations to disabled people:

  • Sign Language interpreters are absent when critical information is disseminated.
  • Websites that contain life-saving information and enable people to register for vaccines are not accessible to people with physical, intellectual, cognitive, and sensory disabilities, nor people who are Deaf and hard of hearing, and people who are blind or low vision).
  • Personal protective equipment is not equitably disseminated to people with disabilities. 
  • When transportation is provided to the public, accessible transportation is not included in planning. 
  • Affordable accessible housing is not prioritized.
  • People with disabilities continue to face healthcare discrimination through the use of crisis standards of care and other forms of medical malpractice.

One year later, we ask: will the government continue to ignore their obligations to protect the rights and needs of disabled people, especially disabled Black, Brown, Indigenous, and other multiply marginalized people? 

Doing so makes it clear that the actions of the government are more than just the consequences of neglect or oversight rather, this abject failure to protect hundreds of thousands of people is an intentional genocide.

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