Terry H. Schwadron
July 7, 2020
We know that nursing homes have been among the hardest-hit epicenters of the coronavirus pandemic. Their residents are the oldest victims, and commonly have underlying medical conditions that worsen the effect of contagion.
I cannot help but think that this was a prime area of the government missing the virus boat altogether. We knew it, and yet we made it worse, not better.
Indeed, current projections are that upwards of 90,000 nursing home residents could die by Oct. 1, or about half of all deaths. That nursing homes were vulnerable was true from the first days in that Washington State site.
Within those numbers, there appears to be a disproportionate impact on Black and brown residents even within nursing home populations, although reporting on deaths is variable among states and nursing homes themselves.
We also know that nursing home staffers have suffered higher-than-average outbreaks of disease as a result of close contact in a highly contagious environment.
Since we have seen enough incident information almost since the start, several questions have gone unanswered:
— Why is it so difficult to have detailed statistical health information about what is happening inside nursing homes?
— Are government officials at all levels recognizing the issues and acting fully on them?
— Are nursing homes changing or are we doomed if we have a parent or grandparent staying there?
Groups, including the ACLU, are starting legal actions in an attempt to find out.
It took four months after the U.S. Department of Health and Human Services (HHS) declared a public health emergency, before it started to require nursing homes to publicly report COVID-19 infection and death rates. HHS still does not require that institutions for people with developmental disabilities and mental health facilities, to report deaths.
A Devastating Effect
Let’s be clear. Despite mistake early on, there are guidelines in place for nursing homes. The Centers for Disease Control has rules for residents, staff and visitors, and the American Health Care Assn., which represents thousands of U.S. nursing homes, has used them to offer advice to homes and families, in recognition that the industry is under increasing pressure just to survive. The trade group asked Congress for $10 billion in aid to spend on testing, protective equipment, salaries for expanded staff and hazard pay, as well as lost revenue from not being able to admit new patients.
But many facilities have failed to report deaths, and others have actually hidden deaths from families and from the government. One New York City facility actually covertly shipped out bodies, and New Jersey officials found a home that had packed 17 bodies into a shed. Stories about families left uninformed about a relative’s death became common.
As it turns out, states have the say over reporting requirements, and 41 do, but they too have sometimes lagged in counting the full-scale of incidents. In New York, Gov. Andrew Cuomo has acknowledged that in the panic over finding hospital beds, they turned to nursing homes for recovering patients, a strategy that backfired.
Some states count deaths but without details. Only 12 name facilities and distinguish between residents and staffer, who are mostly people of color, and only two collect racial and other details. Still, collecting accurate demographic information has been a challenge.
The ACLU is pressuring HHS to get the data.
Still, there is enough data around to know that many deaths were avoidable with proper preparations and distancing.
The ACLU argument here is that the deaths arise from indifference and invisibility, and want government to step up to regulate and monitor settings filled with disabled people at serious risk by a notoriously low-income staff. Before the virus, these facilities already had a poor track record of insufficient oversight, infection control and inadequate staffing and training.
HHS could be taking a hand at reducing overcrowded and potentially dangerous conditions, and could increase spending on community services that would be allow more people to remain in their own homes. The ACLU believes that HHS should encourage states to promote provisions for family members to take their relatives out of nursing homes and get paid to provide their care.
The ACLU bases its arguments on a landmark Supreme Court case called Olmstead v. L.S. that recognized that “unjustified institutional isolation of persons with disabilities is a form of discrimination.”
It seems too easy to lose track of individual arms of a sprawling pandemic to focus on whether nursing homes will be a part of our future once vaccines arrive to halt spread.
What we do know is that if the White House ignores the disease altogether, it certainly will never get to the task of halting nursing home deaths.