On March 23, there were 146 nursing homes known to have outbreaks of COVID-19. Just one week later, that number jumped to 400. Nurses and caregivers have started calling in sick, either because they are infected with the new coronavirus or because they fear working in facilities that lack sufficient safety standards and equipment. Many states, including Connecticut, do not track who has contracted the virus, compounding existing concerns. A recent Washington Post investigation revealed that nationwide, 40 percent of the current 650 nursing homes experiencing outbreaks have had multiple violations of infection control. All of these factors have led COVID-19 to spread like wildfire throughout congregate settings.
Why are nursing homes being hit so hard by the outbreak? One reason is that they are a target of the Trump administration’s aggressive deregulation agenda.
In the early days of the COVID-19 outbreak, more than half of cases could be traced to the same nursing home in Washington state. Pretty soon, visitors, firemen, cruise ship passengers, and local priests could all trace their illness to the Life Care Center of Kirkland, Washington. But what happened in Washington state did not have to become the norm.
After more than 200 nursing home deaths during Hurricane Katrina and 4,500 rescues of residents from adult housing and nursing homes during Superstorm Sandy, former Presidents George W. Bush and Barrack Obama worked to increase nursing home emergency and preparedness standards. Though levels of compliance have varied, nursing homes and other long-term care facilities have historically been required to operate under strict standards intended to improve the health and care of their residents as well as the safety of their staff.
The Nursing Home Reform Act of 1987 established a residents’ bill of rights that includes rights to communication, self-determination, and freedom from abuse, mistreatment, or neglect. It set up standards of care and a process by which on-site visits by trained professionals enforce compliance with those standards. It also created a series of sanctions and penalties that can be levied if the nursing home is not in compliance.
Later, in 2016, the Obama administration enacted a series of rules to improve the treatment of patients in nursing homes and long-term care facilities. These rules strengthened the standards for quality of care and infection prevention and levied significantly higher fines and penalties than those previously in place. They also strengthened the original residents’ bill of rights legislation with a specific focus on the use of binding arbitration.
The nursing home lobby rebelled against this increased level of oversight and rising penalties. The inauguration of President Donald Trump and the growing Republican control of Congress saw the beginning of a robust advocacy campaign by the industry to roll back the changes, citing the onerous nature of the standards and the severity of the financial penalties.
In March 2017, lobbyists for the nursing home industry also began advocating for changes to the Nursing Home Reform Act. They argued that fines should be significantly lessened or eliminated if there was no harm done to residents or if the situation took place before an inspection. They also asked to eliminate the requirement for nursing homes to evaluate the staffing levels needed to provide adequate care—and wanted residents to agree to binding arbitration should they seek to sue at some point in the future.
Despite these lobbying efforts, in 2018, U.S. Senate Finance Committee minority staff released a report that demonstrated how a failure of state and federal oversight led to 12 deaths in a Florida nursing home after Hurricane Irma. The report also documented the many others who suffered or died in nursing homes as a result of Hurricane Harvey.
In response, the nursing home lobby again advocated for less oversight, and in July 2019, the Trump administration proposed new rules relaxing the requirements tied to infection control. It suggested that consultants could be used, instead of requiring infection specialists to be employed at the site, at minimum, on a part-time basis. This meant that there was no longer a requirement for a full-time, hands-on expert in infection contamination on-site. This lack of additional oversight—combined with the prior regulatory rollbacks on staffing ratios, fines levied for injuries, and requirements for arbitration—served to undermine safety for nursing home patients and staff.
A number of nursing homes—and the Federal Bureau of Prisons—have initiated “observational studies” by providing their patients with hydroxychloroquine, the medication that President Trump and some administration officials have cited as a potential treatment. In Texas, the head of a nursing home appropriately noted that many of these patients and their families are unable to give consent for these studies, and in fact, the CEO did not believe consent was required. This serves as an example of the long history of experimentation on aging and disabled people. Hydroxychloroquine is known to have side effects that may include seizures and blindness, and a recent trial in Brazil was ended early due to irregular heart rates occurring in some patients. The long-term effects on people who do not have lupus, rheumatoid arthritis, and other medical conditions that require the use of this drug are still unknown.
Yet lobbyists are actively pushing to limit the legal recourse of nursing home residents who were exposed to COVID-19. In Florida, a state with nearly 700 nursing homes and more than a quarter of the population over 60, some nursing homes are asking the governor to grant them immunity from gross negligence or reckless misconduct charges stemming from the pandemic that are tied to staff shortages. A decision by Gov. Ron DeSantis (R) is pending.
It will undoubtedly take years to unpack everything that contributed to—and multiplied the effects of—the coronavirus pandemic. While nursing homes have been a second-choice housing option for a majority of seniors and people with disabilities, these groups’ vulnerability to pandemics has been exacerbated by the deregulation efforts of some Republican leaders in Congress and the Trump administration.
Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress. Valerie Novack is a fellow with the Disability Justice Initiative at the Center.
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