On January 20, 2021 the United States marked one year since the first death of the Coronavirus (COVID-19). On January 19, 2021 then President-elect Biden and Vice-President-elect Harris commemorated the 400,000 lives lost to this horrific and deadly virus. What was not discussed by many who reported this horrible number is the fact that 100,000+ people with disabilities and elderly individuals lost their lives while in a congregate setting; specifically nursing homes, many of whom were Black and Brown people. Also not discussed is public health officials have warned that congregate settings, long term care facilities, nursing homes and other institutions are deathtraps.

Yesterday (January 28, 2021), New York’s Attorney General Letitia James released a preliminary report: Nursing Home Response to COVID19 Pandemic. The report found that New York State had significantly under-reported the number of COVID-19 deaths in the state’s nursing facilities by excluding nursing facility residents who were sent to hospitals and died.  Hours after the release of the report, NYS Health Department officials released new data that increased the nursing facility death toll by more than 3,800, to account for nursing facility residents who had died in hospitals and not previously been counted by the state as nursing facility deaths. This change increased the overall nursing facility COVID-19 death toll by more than 40 percent, putting the total number of COVID-19 deaths connected to NY nursing facilities at 12,743. The death toll could be even higher, as the NYS Attorney General’s report suggested that the state’s previous tally could be off by as much as 50 percent.

The Attorney General’s report provides a number of recommendations for addressing the needs of nursing facility residents during COVID-19; however, it does not include getting people out of nursing facilities and into the community where they are safer and can be with their families. “We applaud our Attorney General for her work in uncovering and documenting this travesty,” said Bruce Darling, CDR’s President and CEO. “Now we need the Attorney General and policy makers in Albany to take the next step.”

CDR has been a leader in the work to assist people to get out of institutions and to implement the promise of the Americans with Disabilities Act of 1990 (ADA), which is community integration. “Congregate settings are not a place where people can thrive or have an independent life, and today during a pandemic they are deadly,” said Dara Baldwin, CDR’s Director of National Policy. “This isn’t just rhetoric. Receiving Home and Community-Based Services, instead of being placed in an institution, has been demonstrated to save people’s lives.”

Research published in JAMDA, the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine, has demonstrated that individuals in Connecticut who were receiving Home and Community-Based Services were 11 times less likely to be infected by COVID-19 and die than their counterparts in nursing facilities. The determining factor in this research was not the significance of the individual’s disability, but their setting.

The NYS Attorney General’s report also discusses changes needed at the federal level, but none of those federal solutions do what is absolutely necessary in this situation – get people out of these congregate settings. In response to the widespread – and growing – number of COVID-19 deaths in nursing facilities in New York and across the country, CDR calls for passage of the Disability Integration Act (DIA) – bipartisan and bicameral civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions, where they lose their basic civil rights and their lives.

During the last Congress, there was wide support for the bill with over 890 civil and human rights organizations. In Congress, 238 House members and 38 US Senators supported DIA, including Senator Charles Schumer who was the bill’s Senate sponsor. The work of getting DIA passed into a civil rights law continues in this new Congress.

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About the Center for Disability Rights:

CDR advocates for the full integration, independence, and civil rights of people with disabilities. CDR works for national, state, and local systemic change to advance the rights of people with disabilities by supporting direct action, coalition building, community organizing, policy analysis, litigation, training for advocates, and community education.