On July 6th, the New York State Department of Health (NYSDOH) issued a report intended to determine the cause of the outbreak of COVID-19 in the state’s nursing facilities where the coronavirus spread like wildfire and has killed or is presumed to have killed nearly 6500 people. The NYSDOH report appeared to be intended to absolve the Cuomo administration of any responsibility for its decision to send individuals infected with the coronavirus into these facilities.  The report, however, completely failed to address the state’s responsibility for continuing to rely on institutional placement instead of aggressively advancing community integration through the use of Home and Community Based Services.

 “Although the state can argue that staff and visitors brought the virus into these facilities, it needs to recognize that the pandemic’s horrifying death toll in nursing facilities and other institutions was not caused by these individuals.  It is the institutional model, itself, and the state’s over-reliance on it that are to blame for these deaths,” said Bruce Darling, President and CEO of the Center for Disability Rights. “Housing large numbers of people in a crowded facility where they share rooms and staff, particularly when they are at high risk, is – itself – a recipe for disaster.  If group living was safe, everyone would still be on cruise ships.”

The institutional model has been the single largest contributor to the devastation caused by COVID-19. Although people in nursing facilities comprise roughly 0.4% of the population of the country, even the most conservative analysis suggests they account for at least 40% of the coronavirus death toll.  “That just counts the resident of these facilities who died, it doesn’t consider how these facilities serve as virus incubators helping spread infection in the community,” said Dara Baldwin, CDR’s Director of National Policy.  “The virus doesn’t just move in one direction.  Although the state’s Health Department points to staff bringing the virus into the facilities, as infection spread through the facilities staff would have brought the virus back out into the community. Because most of the staff in these institutions are Black and Brown people, these institutions are helping spread the coronavirus through communities of color. That needs to be addressed with systemic change.” 

Disability rights advocates have tried to work with the state to reduce the density of nursing facilities and other institutions and allow elderly and Disabled people to leave these institutions with support as a way to protect themselves from the virus.  On April 24, advocates sent a letter to the Cuomo administration to take action, but the state has not responded.  Most recently, on June 29, community members of the state’s Most Integrated Setting Coordinating Council requested the state respond and set up a meeting with advocates, but the state has still not responded.

“They can’t see beyond their own ableism,” said Gregg Beratan, CDR’s Director of Advocacy.  “I think they can’t wrap their heads around the fact that elderly and Disabled people can live outside these institutions, even though we have decades of experience doing just that. Instead, they keep looking for ways to make the institutions “safer,” but that safety is really just an illusion.”  Governor Cuomo, himself, tried to make the case that our state’s nursing facilities were safer than receiving home care services while a guest on Meet the Press.  “On the face of it, that just doesn’t make sense.  On the one hand, you have large numbers of people in a confined space sharing staff and equipment.  On the other hand, you have people living in their own place with a few people coming and going. Telling the American public that the institutions are safer is as irresponsible as discouraging people from wearing face masks.”

The governor is also under fire for moving elderly individuals in the state’s prison system into a “nursing home prison” in the Adirondacks.  In this case, social and racial justice advocates called on the state to allow these individuals to leave the institution and be able to protect themselves from the virus.  Instead, the state brought them all into a single facility like this.  The Center for Disability Rights joins these advocates in calling for the immediate release of these individuals.  “These people – mostly Black and Brown people– have been put into a death trap when the state should be protecting their lives.  They need to be released immediately,” said Baldwin. CDR is a member of the Justice for Women Task Force a group dedicated to upholding and protecting the inherent dignity, value and human rights of incarcerated in NY and urge protection of women behind bars during COVID19. 

We also were one of the over 500 signatures on a letter sent April 18th to Governor Cuomo demanding the release of these women.  

While the Center continues its work at the state level, it is also looking to Congress – and specifically Senate Minority Leader Schumer – to address this problem. The Senator is the lead Senate sponsor of the Disability Integration Act (S.117/HR.555) which would give people with disabilities the right to receive services in the community, rather than be forced into institutions.  The bill also includes a specific provision that would require states and managed care companies to provide community-based services in response to an emergent need – like the coronavirus pandemic.

“If this bill was law today, instead of begging state and local officials to help us get people out of the institutions in response to the pandemic, we would be able to take legal action when they refuse,” said Beratan. “Members of Congress – including Congressman Pallone who chairs the House Energy and Commerce Committee – may be concerned about the financial cost, but we can see the human cost of not taking action.  How many more must die before Congress acts?”