Anita Cameron: How Many More Have To Die In Nursing Facilities In the Age of COVID-19?

COVID-19 continues to rage through America, but not many of us outside the media and disability rights and justice groups are talking about an overlooked population – residents of nursing facilities and institutions for disabled people, who are dying of COVID-19.

To date, more than 51,000 residents and employees of nursing homes and long-term care facilities have died. That’s more than 40 percent of the total death toll in the United States. These are only the numbers they tell us.

In April, 17 deceased people were discovered in a morgue in a facility in Andover, NJ, after authorities received a tip. Those 17 were among 68 recent deaths at the facility, Andover Subacute and Rehabilitation Center I and II. Two nurses also died. Of those who died, 26 people had tested positive for the virus. People are still dying in that facility.

A high school friend, whose relative died in May in a Georgia nursing home, was told that 142 people contracted COVID-19 in that facility. 100, including her relative, died.

These are the numbers we know. What of the numbers we don’t know? And what’s being done to protect residents and staff?

Because relatives and loved ones in nursing facilities have been denied visitors due to COVID-19,  it’s almost impossible to find out what’s happening. Family members sometimes learn well after the fact that their loved one has died.

Nursing homes want immunity from civil suits when their residents die of COVID-19, and several states, including New York, have given it, making it impossible to investigate violations and neglect, or pursue justice when people have died.

So, what, if anything, is being done to help and protect folks in nursing facilities, institutions and other congregate facilities?

Disability justice activists and independent living centers have been working on ways to safely transition folks to community settings. Chicago ADAPT, along with other local disability organizations, had a meeting with Illinois State administrators and department heads on emergency evacuations, or relocations. Some of their demands on transition were:

I. TRANSITIONS
Governor Pritzker to implement an executive order to:

1) Transition facility residents to hotels/temporary independent housing that is less likely to put residents and workers at risk of infection

2) Reassign overflow nurses to these non‐institutional settings rather than to institutions

Governor Pritzker to reinforce the Colbert/Williams [Olmstead class action] Decrees by:

• Utilizing the Strike Force to expedite the decrees
• Establishing a consumer-led body to work with the Strike Force on transitions to provide essential input
• State of Illinois to require that MCOs [managed care organization] provide community-based consumers the same or broader waivers as those provided to institutional settings

Peter Grosz, of Chicago ADAPT, says that while Pritzker’s staff seemed sympathetic at the meeting, they received this response on May 21st. Note, this is the response regarding transitions, not the entire response to all of their demands, which overall, were unhelpful.

“While the Olmstead Decrees continue to remain a priority for the entire Administration, we have assessed that IDHS and its service providers are unable to conduct safe transitions while providing the typical, robust level of community-based supports during this pandemic. IDHS will continue to work tirelessly to plan around this pandemic in the interest of Class Members, including providing virtual services.

“IDHS also remains committed to ensuring that Class Members, regardless of where
they are currently residing, maintain their status in Consent Decree programming and access to the same entitlements. IDHS is preparing for a complete re-vamping of the service delivery system for Class Members for the time it becomes safe to facilitate transitions.”

“As you know, people in institutions are no different from people not in institutions except that they are in institutions,” said Peter Grosz. “Illinois has not hesitated to transition homeless and front-line workers to temporary facilities equipped with nurses and other supports. In the eyes of the state, the label alone of nursing home resident or psych facility resident or prisoner diminishes an individual’s rights to appropriate safeguards and services against all form of injustices and natural disasters, including at this time, pandemics.”

Members of ADAPT participated in a townhall meeting with other disabled stakeholders in response to COVID-19 in nursing facilities. Anaya Robinson, of Atlantis Community, an independent living center in Denver, Colorado, detailed their plan of relocating people to a local hotel and pairing them with attendants who would quarantine with them. Atlantis Community is hiring currently homeless individuals who receive attendant services training while quarantined with the former nursing home resident, and housing when that person is then transitioned into their own place. Misty Dion, of Roads to Freedom Center for Independent Living, in Williamsport, Pennsylvania, cited a similar program of emergency relocation. They’ve teamed up with restaurants to provide free meals to those in their program. The Center for Disability Rights, in Rochester, New York, has a relocation program quite similar to Denver’s; they train homeless folks in attendant services training through their consumer directed attendant services program, while they quarantine in a local hotel with their supervisors [individuals needing consumer-directed services].

I spoke with three individuals in a Chicago nursing home, Lyndsay, Ernest, and Gina. Their facility has 15 people who tested positive for COVID-19. I wanted to know how they felt about living there during this pandemic.

“It’s very scary, like a time bomb” said Ernest. “They aren’t telling us anything. Its like we’re in a dark room. We have 15 cases of COVID-19 here, but they only told us about 4 people. We’ve been quarantined here for 4 months, but every day, they’re bringing in new staff from the outside. Some of them wear masks, some of them don’t.”

“We have become each other’s support,” said Gina. “The nurses they bring in don’t have the training to do stuff we need, like wound care, so we help each other. There’s been 4 doctors here since January, actually, 3 doctors and a physician’s assistant. I saw a doctor two weeks ago. He just stuck his head in the door to say hi. That’s all.”

“My transition person disappeared,” said Lyndsay. “She said she couldn’t do this anymore. I’m trying to find out what I can do. This is a matter of life and death now, with COVID-19. My transition has just stopped and nobody’s doing anything. I’m waiting for housing and nobody’s telling me anything.”

Therein lies another issue. People’s Olmstead rights are being violated. Olmstead v LC is the Supreme Court decision affirming the right of people in nursing facilities and other institutions, like psychiatric hospitals, to live in the community with the services and supports they need to remain independent. According to the decision, “Unnecessary institutionalization is discrimination under the Americans with Disabilities Act.” Each state is supposed to have an Olmstead plan to transition folks from institutions to their own homes and receive services “in the most integrated setting possible.”

While governmental agencies are saying that people in nursing homes are too medically fragile to be transitioned to the community, many disabled folks reject that claim. Today, on the 21st anniversary of the Olmstead decision, they are still fighting  for the right to live at home. You would think with COVID-19 on the rampage in nursing facilities, there would be concerted efforts nationwide to get people out of those places, to safety, then into their own homes. How many more people in nursing homes and other institutions for disabled folks have to get sick and/or die from COVID-19 before we do anything?