By Susan Mizner, ACLU
COVID-19 has ripped through nursing homes, psychiatric hospitals, and other congregate settings for people with disabilities. People living in these settings make up less than 1 percent of the U.S. population, but nearly 50 percent of COVID-19 deaths.
Some have said these deaths are inevitable. Some have even called for “weeding out the weak” as part of herd mentality. But these deaths are far from inevitable. They arise from decades of indifference, invisibility, and deadly discrimination against the people who live and work in these settings. They also arise from our government’s abdication of its responsibility to regulate and monitor these segregated institutions.
Congregate settings for people with disabilities include nursing homes, psychiatric facilities, and intermediate care facilities for people with developmental and intellectual disabilities. Long before COVID-19, these facilities already had a poor track record with insufficient oversight, poor infection control, under-staffing, and inadequate training. Combined, these conditions created the powder keg. COVID-19 lit the match.
How has this happened? This is the first in a series of ACLU blogs addressing this crisis, in which we will break down the causes at the institutional level and the personal effect on individuals such as staff and residents. The focus today is on the U.S. Department of Health and Human Services (HHS), and its agency, the Centers for Medicaid and Medicare Services (CMS). Together, HHS and CMS are charged with regulating and monitoring the vast majority of the institutions where we have warehoused people with disabilities. HHS is responsible for the primary funding and for ensuring the safety of people in these facilities. And it has failed miserably in the age of COVID-19.
On Jan. 31, HHS declared a national public health emergency to respond to COVID-19. As a primary response to the pandemic, all of our medical and political leaders demanded social distancing. We closed schools and dormitories, required employees to work from home, and shuttered bars, restaurants, and ball parks. But we did not extend this disease prevention tactic to nursing homes, psychiatric hospitals, and developmental disability facilities. In fact, HHS has done the opposite. It has instructed nursing homes to take new patients without first confirming that they are not infected with COVID-19, and it has waived regulations to help divert people from entering institutions.
HHS has mechanisms at its disposal to reduce the overcrowding and dangerous conditions in these institutions. It can increase its funding for Home and Community Based Services and community mental health services, so people can stay in their own homes to get support. It can encourage states to advertise a provision allowing family members — so many of whom are sheltering in place without work — to take their relatives out of nursing homes and get paid to provide their care. And, it could increase the discharged planning process to move those who wish to be back in the community to move there. But it has failed on all counts.
HHS also has obligations to step up infection control and safety for the people who cannot yet leave these institutions. But it has not required states to prioritize personal protective equipment (PPE) or testing for staff or residents, and it has failed to increase the consequences for facilities that violate infection prevention measures. As a result, these institutions, rather than being havens from infection, are ‘death pits’ — among the most dangerous places in the country during this pandemic.
And finally, HHS should provide transparency, so that individuals and families can decide for themselves whether to enter — or stay — in an institution. Instead, more than four months passed before HHS started to require nursing homes to publicly report COVID-19 infection and death rates. And even this is incomplete — as nursing homes can choose not to report deaths before May 6, and other congregate settings — such as psychiatric hospitals, group homes, and institutions for people with intellectual and developmental disabilities — have no reporting obligations at all.
(This week) marked the 21st anniversary of Olmstead v. L.C., the landmark Supreme Court decision that recognized that “unjustified institutional isolation of persons with disabilities is a form of discrimination.” The court went on to observe that institutional confinement limits every part of a person’s life, and that such confinement “perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.”
Today, we filed a petition calling on HHS and its agencies to meet their obligations under Olmstead and under federal law. We are asking HHS to get people out of institutions as quickly and safely as possible, to provide genuine infection prevention and control measures for those who remain, and to provide true transparency as to who is living, working, and dying in these institutions.
HHS must respond. Collectively, we have much more to do. As a society, we must reckon with our relentless marginalization and de-prioritization of people with disabilities and the people who support them. We must look at the tens of thousands of deaths inside congregate care settings as a collective, systemic tragedy. These victims of COVID-19 are mothers, fathers, brothers, sisters, grandmothers, grandfathers — all of us. We must end the disregard and discrimination that took their lives and that threatens — if we do not act quickly — to take many more.
Susan Mizner is the director of ACLU’s Disability Rights Program, which she founded in 2012. She earned her bachelor’s degree from Yale University and her law degree from Stanford University. To read more of Mizner’s opinion columns, visit aclu.org/news/by/susan-mizner/.