Part II - COVID-19, Disparities, and Vulnerable Populations

Introduction

Asees Bhasin

COVID-19 has claimed over one million lives in the United States alone. The disease transcends race, class, gender, age, and religion, prompting many to refer to it as “the great equalizer.” The chapters in Part II of this volume debunk the “level playing field” myth and instead examine how the pandemic lays bare the social fault lines of our society. Each of these chapters delves into a discussion about how COVID-19 disproportionately impacts a specific historically marginalized community or population and exacerbates existing inequities while simultaneously giving rise to new ones.

In Chapter 6, “Tolerating the Harms of Detention: With and Without COVID-19,” Dr. Jaimie Meyer, Marisol Orihuela, and Judith Resnik examine the impact of COVID-19 on people in detention and locate the present moment within a historical movement for greater rights for prisoners. This chapter describes the poor spacing, lack of shared spaces and ventilation, and the scarcity of resources in prisons which give rise to “tinderbox situations” that lead to high rates of infections and clusters of outbreaks. It also discusses the legal and public health call for “dedensification” and critiques the institutional response to these demands as well as the limitations of the Eighth Amendment standard of “deliberate indifference to serious medical needs” in questioning conditions of confinement.

In Chapter 7, “A Bend Toward Greater Realized Health Equity and Racial Justice: How the Confluence of the COVID-19 Pandemic and Structural Racism Will Monumentally Shape American Law and Policy,” Scott Schweikart, Fernando De Maio, Mia Keeys, Joaquin Baca, Brian Vandenberg, and Dr. Aletha Maybank examine how the inequitable epidemiological burden of COVID-19 falls on Black, Indigenous, and People of Color communities in terms of tangible indicators such as mortality rates and life expectancy, as well as more ancillary indicators such as job loss and decline in employment income. This chapter demonstrates why such disparities cannot be attributed simply to preexisting conditions such as asthma and obesity; instead, a holistic examination of the impact of white supremacy and racism is warranted. Building on Abbe Gluck’s position that traditional health law should encompass public law that is defined by the role of the government, this chapter compellingly argues that factors such as structural racism are core areas of law related to the social and structural determinants of health, and further shows how nearly all areas of law could be deemed “health law” due to their impact on health equity.

Govind Persad and Jessica Roberts in Chapter 8, “Access to Vaccines and Critical Care Treatments for Older People and People with Disabilities,” take a more theoretical approach, outlining frameworks governing the formal allocation of critical care and vaccines in times of scarcity and exploring whether certain protocols and policies have the result of magnifying disadvantages for older Americans and people with disabilities. This chapter also discusses frameworks that could remediate disadvantages through intentional efforts, but goes on to describe how implementing such approaches could be made difficult due to barriers such as unconscious biases of health care providers and lack of transportation and technology, all of which make it hard for elderly people and people with disabilities to access care.

In Chapter 9, “Humane and Resilient Long-Term Care: A Post-COVID-19 Vision,” Nina Kohn details the devastating number of deaths and infections in long-term care facilities and, as does the chapter on incarceration, likens them to tinderboxes. This chapter attributes “preventable suffering” in long-term care facilities to public health failures, such as the lack of mandates for testing residents and staff, a limited supply of personal protective equipment, and a bumpy vaccine rollout. It also concretely identifies the lack of regulation and failure to implement existing regulations as problems made visible by COVID-19.

Each of these chapters reckons with the possibility that the pandemic “is a portal, a gateway between one world and the next,” as writer and political activist Arundhati Roy has described it. Chapter 6 on incarceration is less optimistic and exposes the tension between the heightened awareness of health risks to incarcerated populations and the state’s continuing appetite for mass incarceration and tolerance for debilitating modes of detention. In Chapter 7, on structural racism, the authors take a more optimistic view, finding that the pandemic’s legacy may include expanded health care access, criminal justice reform, and correction of historical redlining – each of which favorably impacts health equity. In Chapter 8, the authors put forth lessons learned from the pandemic, including the need for “debiasing” care and improving access to resources such as vaccines. Chapter 9, on long-term care, also focuses on what can be learned from the pandemic and outlines how financial incentives can be used to improve the quality of care.

Upon perusing these chapters, the reader will understand exactly why it is a mistake to think of the pandemic as an equalizer instead of a multiplier of inequities. That said, the purpose of these chapters is not to encourage despair, but to foster calls to action and make tangible legal and policy recommendations. It is powerful that these authors see this pandemic as an inflection point for more than mere superstructural changes to the policy framework, and intentionally identify deeper issues, such as mass incarceration, racism, ableism, and the lack of community-based care, as impeding us from creating a safer, healthier, and more equitable future for our society’s most vulnerable people.

6 Tolerating the Harms of Detention, With and Without COVID-19

Jaimie Meyer , Marisol Orihuela , and Judith Resnik ^*

I Introduction

What does COVID-19 teach about the lives of people in detention and the obligations of those running such facilities? How should the experiences of this pandemic inform the body politic about COVID-19 and about incarceration?

In a host of ways, COVID-19 has been radically disruptive. Yet, for people in detention, whether housed in jails before trial, in prisons after conviction, or as immigrants potentially subject to deportation, COVID-19 presents challenges that they faced before this pandemic. The loss of free movement and autonomy is what detention in the United States currently is. A risk of contagion accompanies confinement, which too often entails hyper-density as well as profound isolation, if people are held in solitary confinement.

The stunning dysfunction, expense, and racial inequities of the prison system have become topics of national concern. From a variety of vantage points (whether from conservative groups described as “right on crime” or progressive activists), curbing incarceration has become imperative. When COVID-19 hit, some commentators thought that it would provide a new impetus for radical revisions in support of the prison abolition movement. Yet, the heightened risks of COVID-19 atop the other harms incarcerated people face have not, to date, dislodged widespread commitments in the United States to incarceration.

This chapter analyzes how the experiences of COVID-19 for people in detention illuminate both the achievements and the limits of the previous decades. Health care became inscribed as a constitutional right of detained and incarcerated people, yet its implementation remained elusive. COVID-19 underscored the total dependence of detained people on the governments that confine them and made vivid the health care failures endemic before COVID-19 and the degree of connection between prisons and the communities in which they sit. The divisive debates about regulation, government obligations, and the need for joint venturing to reduce the risk of disease have shaped the responses to COVID-19, in and outside the prison gates.

II COVID-19 – In and Out of Prison

Congregate settings such as jails and prisons enable the rapid spread of infectious diseases that are transmitted person to person, especially those passed by droplets emitted by coughing and sneezing. People are generally required to share bathrooms, showers, eating areas, and other common spaces. Many facilities are old, dilapidated, and have poor ventilation.

The density of prison populations, before and after the development and availability of COVID-19 testing, vaccines, and treatment, is an obvious problem. Detained people arrive from other institutions, as do visitors and service providers, including full-time staff, contract personnel, vendors, health care professionals, attorneys, and religious leaders. Under usual circumstances, people in need of specialized health care are sent to outside medical facilities.

Once COVID-19 hit, international and national public health organizations began to provide some guidance. In March 2020, the World Health Organization released “Preparedness, Prevention and Control of COVID-19 in Prisons and other Places of Detention.”¹ Shortly thereafter, the Centers for Disease Control and Prevention (CDC) put forth its “Interim Guidance on Management of COVID-19 in Correctional and Detention Facilities.”² Both documents called for operationalizing basic tenets of infection prevention: cleaning and disinfecting, hand hygiene, testing, contact tracing, quarantining, and medical isolation. Yet, and to the dismay of many health care experts, incarcerated people, and their families, the CDC guidelines were silent on an important facet of prevention: lowering prison population density.

Given poor equipment, limited resources and, at times, a lack of commitment, implementation of the guidance provided was uneven. Most facilities lacked disinfecting supplies and adequately trained personnel to support infection prevention. Despite mandates for soap and hand sanitizer, prisons set time limits on how long people could use sinks; gave out minimal amounts of free soap; required prisoners to purchase (if they could) more disinfectants; and rejected sanitizers because they are often alcohol-based, flammable, or potentially ingestible.

Moreover, many facilities did not have spaces for appropriate medical quarantine. Some people were warehoused in common areas and others put in cells designed to isolate for punishment. Some institutions imposed lockdowns that cut off access to outside health care providers and often prevented specialists, as well as lawyers, family, and other visitors, from coming in. Nonetheless, staff continued to go in and out, and some facilities admitted new people into detention. In public health terms, the result was a “tinderbox scenario” in which rampant spread occurred, in and around prisons.

In July 2020, the New York Times reported that 80 percent of the largest clusters of COVID-19 cases had occurred in prisons.³ By November 2020, the health disparities between people residing and working in prisons and the general public widened. Staff in federal and state prisons were 3.2 times more likely to be infected with COVID-19 compared to the US population, and the likelihood for incarcerated people was 1.4 times higher still.⁴ As of June 2021, one report identified 398,627 COVID-19 cases and 2,715 deaths of people confined in prisons.⁵ In another model of the impact which controlled for differences in race and gender, the death rate from COVID-19 in prisons was three times higher than in the general US population.⁶ COVID-19 infection rates in Immigration and Customs Enforcement (ICE) detention were twenty times higher than in the general population and five times greater than in prisons.⁷ Yet such estimates were an undercount. Not all systems keep high-quality records or make complete and accurate accountings public. In the summer of 2021, researchers at the University of California, Los Angeles-based COVID Behind Bars Data Project reported that several states had stripped public-facing dashboards of relevant information on infection and death rates.⁸ These statistics have public health implications beyond those facilities. As noted, staff members come in and out, and detained people rely on area hospitals for acute care. A 2020 modeling study predicted that, were every intensive care unit bed made available for sick detainees, COVID-19 outbreaks in nine ICE detention centers would, within three months, overwhelm local intensive care units within a fifty-mile radius, and that the capacity to care for others would be greatly reduced. Other researchers focused on the comparable impacts to the community from COVID-19 in prisons.⁹ For example, a multi-county study using data from the summer of 2020 estimated that incarceration contributed to over half a million COVID-19 cases both inside facilities and in the surrounding communities.¹⁰

III Seeking the Protection of the Law

Documentation of detention facilities’ health care failures came by way of expert analyses provided to legislatures, government officials, and courts. One overview of the inadequacies in the Federal Bureau of Prisons (BOP), with some 120 facilities across the United States, came from testimony by Homer Venters, a physician and epidemiologist who had served as the Medical Director and Chief Medical Officer of New York City Correctional Health Services, and then as a member of the Biden–Harris COVID-19 Health Equity Task Force.¹¹ In his April 14, 2021 statement to the US Senate Judiciary Committee, Dr. Venters reported that COVID-19 “revealed a disturbing lack of access to care” in general. To seek care in the BOP, a written request had to be submitted; with and without the pandemic, requests were ignored, mishandled, or received a delayed response.

The consequence, as Dr. Venters reported, was that “when COVID-19 arrived, incarcerated people relied on broken systems of sick call to seek care.” Individuals who did report COVID-19 symptoms were often met with delays; that slow response resulted in belated care and isolation, which meant that contagious individuals could unwittingly transmit the virus to others. For people who had other medical issues, the situation became dire. Many described disabling delays – before as well as during acute phases of COVID-19 – in receiving specialized and necessary care. The result, according to Dr. Venters, was that the “pre-existing weakness in the BOP health services worsened the morbidity and mortality of COVID-19.”¹²

Parallels abounded in the states. In October 2021, a California state court judge provided more than 100 pages on the failures in the state. His conclusion was that California’s Department of Corrections had caused “the worst epidemiological disaster in California correctional history;” rather than comply with the various recommendations to mitigate harms, “it chose to litigate the matter while people died.”¹³

The lawsuit that prompted that account is one marker of significant changes that have been won by people in detention who, in prior centuries, had virtually no legal protection. In the 1960s, incarcerated people around the United States challenged the injustice of their exclusion from constitutional rights. Through political protests, petitions to government officials, and pleadings in courts, incarcerated people pushed the law to make good on what they read the Constitution to promise: the equal protection of the law and a ban on cruel and unusual punishments. Prisoners asserted that they had rights to a modicum of safety, sanitation, and activities and to protection against violence, such as being whipped, starved, stripped, or held in cold bare cells.¹⁴

The specific issue of health care reached the Supreme Court in 1976 through the efforts of J.W. Gamble, who was incarcerated in Texas. He filed a handwritten petition and told a federal judge that, while working, he had been hit by a 600-pound bale of cotton. Although seen by prison doctors, the prison did not follow through on the doctor’s prescriptions and then sent him to solitary confinement as punishment because of his inability to work. Reversing a lower court decision that had thrown Gamble out of court, appellate judges noted the “woefully inadequate” medical services; one facility had a single doctor for 17,000 incarcerated people.¹⁵

What does the Constitution say about health care in prisons? The Fifth and Fourteenth Amendments protect “life, liberty, and property” from deprivations without “due process,” and the Eighth Amendment prohibits “cruel and unusual punishments” from being used on those serving a criminal sentence. Before Gamble’s case went to the Supreme Court, a few lower courts concluded that, either as a matter of a person’s “liberty” or because of the ban on “cruel” punishments, prison officials had to provide some health care, but many judges responded to only the direst situations. Writing for the majority honing in on what the Eighth Amendment required, Justice Thurgood Marshall explained in Estelle v. Gamble that the ban on cruel and unusual punishments embodied “broad and idealistic concepts of dignity, civilized standards, humanity, and decency,” which required states not to be deliberately indifferent “to serious medical needs.”¹⁶

Even as this constitutional pronouncement was a major breakthrough, its test raises many questions. If a prison system does not provide adequate care, why should the intent – as contrasted with knowledge – of the administrators matter? And why should the burden rest with the incarcerated person? Those points were part of the dissent in Estelle by Justice John Paul Stevens, criticizing the majority’s “deliberate indifference” requirement.

Losing and winning is one way to understand what happened thereafter. That ruling insulated prison officials, who could rebut claims by arguing they did not have the requisite level of intent to be subjected to injunctive orders to make changes or be held liable for monetary damages. Less than nine months after Mr. Gamble “won” in the Supreme Court, the appellate court dismissed his case because he could not meet the “rigorous guidelines” of showing the prison system’s indifference to “satisfy” the Supreme Court’s standard.¹⁷

Yet the Supreme Court’s decision also opened the courthouse door to arguments about the level and kind of care provided in detention. The opinion has supported a host of court rulings requiring system-wide relief to improve medical and mental health services for people in prison. In 2011, obligations established in Estelle v. Gamble were part of another Supreme Court decision upholding the release of people from prison in California because massive overpopulation rendered it impossible to provide minimally adequate health care.¹⁸ Estelle v. Gamble also spawned new organizations aiming to improve care.¹⁹ Several private corporations saw the potential for profits. A few have a large market share of lucrative contracts and long lists of complaints about their failures to provide adequate services.

A distinctive feature of the Estelle v. Gamble ruling needs to be highlighted. In contrast to the constitutions of many other countries, the Constitution of the United States has rarely been read to require affirmative support from the government. Many commentators see the Constitution as creating “negative liberties” that produce freedom from government intervention rather than “positive rights” of provisioning. Moreover, even as other countries have social policies that provide for universal health care, as well as education and other benefits, the United States currently does not. Yet the Court’s 1976 requirement that prisons not be deliberately indifferent to serious medical needs does impose an affirmative obligation to provide health care. Prisons are, therefore, one of the few places in the United States where a form of access to health care has a degree of constitutional protection.

In the decades since Estelle v. Gamble, it has become clear that some level of health care should not be equated with high-quality care. Long before the arrival of COVID-19, an array of reports and lawsuits documented the ongoing failures of prison systems to provide minimally adequate care as compared to what was available in the community.²⁰

IV De-densification as a Public Health Strategy and as a Legal Obligation

This account makes plain that detention itself is a major source of risk of infections. When COVID-19 hit, social distancing, coupled with masks and, as the science developed, testing and vaccines, became the safety protocols for people for whom these were available. In congregate settings, when masks, testing, and vaccines were often not available, “de-densification” was central. One study identified both testing and de-densification as key, as together they reduced transmission by more than 55 percent.²¹

Prison overcrowding is an artifact of decades of social policy. Beginning with the political shifts in the latter part of the twentieth century, a “war on crime,” fueled by racist tropes, produced prosecution policies and sentencing laws that resulted in massive numbers of people held in detention.²² Incarceration rates that had been relatively stable (with about 320,000 people incarcerated nationwide in 1980) rose to record highs.²³ By the end of 2020, the Federal Bureau of Justice Statistics reported that 1.4 million people were incarcerated in prisons, with another 750,000 held in jails. About 58 percent of the US population was categorized as “white,” even though only 31 percent of people in prison are white prisoners. In this context, as in many others, the risks of detention are borne disproportionately by people of color.²⁴

The public health call to de-densify was in sync with the goals of the decarceration movement, which has been vividly embodied in Angela Davis’s call for “prison abolition.”²⁵ Advocates’ hope was that COVID-19, along with the myriad harms and costs of incarceration, would widen acceptance of the need to limit incarceration.²⁶ Advocates deployed that movement’s slogans (such as “Free Them All”) and coined others (such as “Free Them All 4 Public Health”) to mark the abolitionist aim.

Whether abolitionist or not, an array of communities and professionals mobilized to try to mitigate the risk COVID-19 caused in detention. People in prison and their lawyers filed hundreds of lawsuits, some seeking individual releases and others class-wide remedies.²⁷ One theory was that, because COVID-19 infection put a person at risk of illness and death, COVID-19 turned a lawful sentence for a term of years into unlawful detention. The remedy was release, either by “enlarging” the place of custody to permit serving time outside of prison, to admit a person to “bail,” or to grant a petition for habeas corpus.²⁸ Another theory was that, under Estelle v. Gamble, prison systems were deliberately indifferent to known medical needs. Some lower court judges agreed and ordered soap, masks, distancing, reduction of time, release of eligible individuals, and more.

These efforts were complicated by a 1996 statute known as the Prison Litigation Reform Act, through which Congress circumscribed judges’ authority to respond when prisoners sought relief from conditions of confinement. One line of COVID-19 cases rejected lawsuits because prisoners had not “exhausted” administrative remedies by asking prison officials for action before going to the courts, even though the public health crisis and the limited kinds of relief in prison grievance programs undermined the utility of such requests.²⁹ Other trial-level judges recognized the need for release and did so by shortening sentences or relocating individuals to spend the remaining time in “home confinement.”³⁰ Some of those rulings remained in place,³¹ but appellate courts stayed or reversed others,³² and in a few instances, the Supreme Court (over dissents) blocked relief.³³ Those decisions generally relied on prison officials’ arguments that whatever they did to buffer against COVID-19 was sufficient under the test of “deliberate indifference to known medical needs.” Thus, after an initial spurt of lower court judges insisting on methods to lessen the risks to people’s lives and health, several courts showed their tolerance for the status quo.³⁴

Courts were one venue to seek de-densification, executive action another. Many communities called on directors of correctional facilities, governors, federal officials, and legislatures to take affirmative steps to de-densify. One response came from Congress in the Coronavirus Aid, Relief, and Economic Security Act (CARES) Act, which became law in March 2020. That Act authorized the Attorney General, during the Act’s covered emergency period, to direct the BOP to expand the number of people eligible for “home confinement” by “lengthen[ing] the maximum amount of time for which the Director is authorized to place a prisoner in home confinement.”³⁵ Thus, people who would otherwise not have met the requirements for reassignment were able – if the BOP acted – to serve the remainder of their sentences at their homes or in halfway houses.³⁶

On April 3, 2020, the Attorney General made the relevant finding that the emergency conditions created by COVID-19 materially affected the functioning of the BOP.³⁷ That decision gave the BOP Director authority to de-densify by letting some people out and lowering the number of people held in close proximity to one another. Yet the BOP used this opportunity less than it could have done. For example, at the sole federal prison in Connecticut, prison officials did little until incarcerated people brought a class-action lawsuit and a federal court issued an order that the prison’s warden had likely violated the Eighth Amendment by failing to release people eligible for home confinement.³⁸ As of October 18, 2021, the agency’s website reported that since March 2020, the BOP had released 33,056 people on home confinement and that 7,586 individuals then remained on home confinement status.³⁹ Those numbers demonstrate that many released individuals would have been eligible for release even without the CARES Act provision, for they were close to the end of their sentences.

Low numbers of releases were also visible in data from states. For example, by the fall of 2020, 10,000 people were confined in Connecticut state prisons and jails, of whom 3,100 were either held before trial or on misdemeanor convictions – all facing the risks that COVID-19 imposed. A lawsuit challenged those failures, but as some courts took a narrow view of the “deliberate indifference” standard, an agreement was put into place about monitoring conditions rather than releasing individuals.⁴⁰

Lawsuits to protect people detained by immigration were at times somewhat more successful than those brought on behalf of people in state and federal prisons. Several facility-wide class-action lawsuits resulted in the release of significant numbers of people from ICE detention, even when lower court decisions were subsequently modified or reversed.⁴¹ These ICE detention suits did not face the legal hurdles imposed by the Prison Litigation Reform Act, including its exhaustion requirements. Moreover, because people held in ICE detention are “civil” detainees, their right to health care comes from constitutional guarantees of liberty rather than prohibitions on cruel and unusual punishment. A few judges focused on the lack of health care and did not require demonstration of proof of intent (“deliberate indifference”), as courts have done in the post-conviction context.⁴²

In terms of the whole country, between January 2020 and January 2021, the number of people held in jails and in prisons declined somewhat in some jurisdictions.⁴³ Yet rather than resulting from releases of people who were already incarcerated, much of that decline was attributed to COVID-19-induced slowdowns in prosecution and in courts, as well as the appropriate reluctance of some prosecutors and judges to put people in confinement while awaiting trial. Moreover, the benefits of these policies did not inure to people of color as they did to white populations.⁴⁴ Atop these front-end shifts, only a few governors exercised their pardon, clemency, parole, or other authority to release people from prison, and when they did, it was typically to release only small numbers. One exception came from North Carolina, where the governor, responding to litigation about prison conditions, issued an order for a plan to release 3,500 people.⁴⁵

Populations declined in the federally run immigration detention system as well. In the winter of 2020, the government held approximately 39,000 non-citizens for potential removal. By April 2021, that number was down to 14,000.⁴⁶ Whether the reduction in population was due to decisions by the Department of Homeland Security to de-densify is not clear; arrests for immigration violations did decline. Some analysts point to the government’s virtual closing of the border as a significant source of the decrease, and this possibility could have more explanatory power than a decrease in arrests inside the country.⁴⁷

In general, the consensus among public health experts on de-densification was not met by adequate responses from a host of governmental officials, the CDC included. A few initiatives aspired to do more. For example, “complete clemency” is the shorthand for providing that all the people released from the federal system through the CARES Act and serving their sentences under home confinement should remain outside prison.⁴⁸ In addition, the harms of COVID-19 helped to energize efforts in some jurisdictions to legislate to limit the practice of reincarcerating people who may have violated conditions when on bail, probation, or parole. Violations range from committing new crimes to minor problems such as not showing up on time for a meeting or not completing drug testing and mental health treatment. An initiative in New York called “Less is More” had, since 2017, sought to limit using such violations to put people back into high-risk detention. New York City’s Rikers Island provided a horrific example; in the first ten months of 2021, thirteen people – held before trial – died because of an understaffed, lawless, and dangerous facility.⁴⁹ New York’s legislature passed “Less Is More,” which Governor Kathleen Hochul signed in that September 2021.⁵⁰

Parallel concerns helped to close an immigration detention facility, Bristol County House of Corrections in the Northeast. Advocates in New England documented terrible conditions of confinement and provided crucial support and organizing for the class-action litigation brought on behalf of all people detained at the facility.⁵¹ The litigation resulted in a significant reduction of the population at the facility, and, in 2021, the Biden Administration terminated its contract authorizing non-citizens to be detained at the facility.⁵² Members of California’s congressional delegation, citing COVID-19, called for closing some of the detention facilities there as well.⁵³

V COVID-19 Vaccines: The Promise and Challenges of Delivery in Prisons

As is now familiar, COVID-19 prompted a remarkable effort to produce vaccines; the results exceeded many predictions in terms of timing and efficacy. When vaccine supplies were limited, some states put prisoners, along with others in congregate housing such as nursing homes, on the list of priority recipients.⁵⁴ Other states did not, and one court ruled that the state’s categories for access had to treat prisoners the same as others, similarly situated, and make vaccinations available as the state did for all in congregate settings.⁵⁵

As vaccine availability increased, the issues turned from access to obligations: Who would get vaccinated, and could vaccines be mandated in detention? Available data suggested that, as of February 2022, in those jurisdictions providing information, the percentage of incarcerated people with at least one dose of a COVID-19 vaccine ranged from 52 percent to 94 percent. The rates of prison staff who had received at least one dose ranged from 23 percent to 82 percent.⁵⁶

That variation brought issues of obligation to the fore. In at least one instance, a court directed state facilities to lower the risk of the spread of infection by requiring vaccines for people denoted as “workers” entering the facilities.⁵⁷ In the fall of 2021, the White House COVID-19 Action Plan mandated vaccines for federal employees and federal contractors, and applied that requirement to people working for BOP and ICE.⁵⁸ In 2022, after the Supreme Court concluded that the Occupational Safety and Health Administration lacked the authority to mandate vaccines and testing for the private sector, the agency substituted guidelines that encouraged those practices and additional care for “at risk” populations.⁵⁹ Given the mix of public and private staff in detention facilities, facility administrators became the source of important decisions about how to protect the safety of people in detention and staff.⁶⁰

The question of imposing vaccine mandates for detained people is nested in oppressive histories of detention and of medical experimentation. As discussed, given the lack of care in many facilities, people in prison have many reasons to distrust the system that detains them. Further, informational sources are regulated; incarcerated patients face challenges in making well-informed choices. To respect a modicum of autonomy related to health care, most jurisdictions have not required vaccinations against diseases such as influenza.

COVID-19 contagion put stress on that approach. Innovative responses have aimed to address the challenges of ethical and equitable vaccine distribution in prisons. Public health experts focused on identifying “trusted messengers” who could provide information beyond what staff gave to incarcerated people. Such innovative information campaigns aimed to provide accurate knowledge and counteract misinformation. For example, the National Commission on Correctional Health Care and AMEND, based at the University of California, San Francisco Medical School, provided free materials, developed with input from people in detention, on COVID-19 vaccines.⁶¹ In Rhode Island, handouts shaped by incarcerated people were provided weeks before vaccines arrived to all people in detention in the Rhode Island Department of Corrections.⁶² The University of Massachusetts Medical School, through a contract with the Massachusetts Office of Public Safety, developed a “COVID-19 vaccines in prison” information campaign in several languages and included factsheets, posters, and videos; these were distributed to people incarcerated, staff, and state police.⁶³

VI COVID-19’s Lessons

Our account of COVID-19 in US detention from 2020 to 2021 is embedded in the unhealthy (in all senses of that word) attachment to incarceration, which diminishes the well-being of the people required to live in prison, the staff who work there, and the communities and country of which they are a part. The global and national experience of this public health emergency has again underscored that massive incarceration undermines public and personal health. Moreover, even after vaccines rolled out and the end of an acute phase of pandemic came into sight in the United States, COVID-19 is becoming endemic and the risks it poses to people in congregate settings remain high.

Further, COVID-19 is far from the only risk to health associated with incarceration. Prison is bad for people on a host of dimensions. For example, according to 2020 federal data, people in prison have a 2.5 times higher risk of dying from homicides than those in the community.⁶⁴ One lesson that COVID-19 ought to have provided is that the hyper-density of detention (coupled at times with the profound isolation of solitary confinement) is unsafe as well as unwise and unjust.

COVID-19 also underscored the interdependence of communities around the world, including prisons, and the centrality of education in improving public health. The conflicts over collective action to respond to the health emergency of COVID-19 took place in many venues. Divides about mask and vaccine mandates, economic support, eviction bans, and religious exemptions in relationship to COVID-19 are intertwined with conflicts about the government’s role in providing help and care more generally. Likewise, insufficient responses to COVID-19 in detention mirrored the lack of sufficient health care in prison for other diseases.

COVID-19 has thus served as a painful reminder that prison is a place where the harms of confinement are known and tolerated. We are “in medias res” – in the middle of understanding the import of the pandemic and in the middle of conflicts about how to generate the political and social will to provide for more safety and to support well-being for all. For people in prison, rethinking detention, with and without COVID-19, is required.

7 COVID-19 and Racial Justice in America

Scott J. Schweikart , Fernando De Maio , Mia Keeys , Joaquin Baca , Brian Vandenberg , and Aletha Maybank ^*

I Introduction

In the United States, the impact of COVID-19 is influenced and exacerbated by an embedded social issue: structural racism and its attendant systemic inequities.¹ In this chapter, we address how structural racism – broadly construed as the deeply rooted discriminatory policies and systems that produce the chronic systemic inequities faced by Black, Indigenous, and People of Color (BIPOC) people in American society – have influenced, with notable detriment,² COVID-19’s impact in the United States. We argue that the pandemic’s legal and policy legacy will be one of greater realized health equity and racial justice. The United States is at a pivotal political point. The confluence of an ever-looming pandemic intertwined with racial equity protests and a newly elected president provide the political impetus for monumental legal and social change. Notably, because of the pervasive nature of systemic inequities and structural racism, legal and social changes flowing from this pivot point will influence both health and non-health law realms. Probable changes to American law and policy are likely to be immense – historic in both scope and impact. We broadly examine these possibilities, providing an ultimate assessment of the probable far-reaching legal and policy legacy of COVID-19: naming and challenging the foundation of structural racism in the United States.

II Racism in the Epidemiology of COVID-19

Understanding the epidemiology of COVID-19 requires one to name racism as a fundamental cause of health inequity, and to acknowledge that racism and white supremacy have shaped data systems across the country. This has operated in several ways, including failing to collect critically important data, either through colorblind ideology or through the systemic failure to fund critical public health infrastructure, and manifests in the research questions that are asked and the models that are created to explain population health patterns.

On an empirical level, the inequitable epidemiologic burden of COVID-19 has been well established. The earliest studies, emerging in April 2020, warned of a disproportionate cost for marginalized and minoritized groups.³ Health equity researchers warned that COVID-19 would amplify existing inequities as it spread throughout the country. As the United States crossed the threshold of 600,000 total deaths from COVID-19, it continued to see the significant inequities that were revealed in the early weeks of the pandemic. The latest data (as of July 2021) show that age-adjusted mortality rates for Latinx and Black people are more than double that of White people (2.3 times and 2.0 times, respectively).⁴ Indigenous people have experienced age-adjusted mortality rates 2.2 times higher than for White people; Pacific Islanders have a rate that is 2.7 times higher.⁵ This translates into an unprecedented level of excess deaths across the country.⁶ If the COVID-19 mortality rate experienced in the White population applied universally to BIPOC communities, more than 21,000 Black, 10,000 Latinx, and 1,000 Indigenous people would still be alive today – estimates that continue to rise every month.⁷ This burden is clear in epidemiologic models, and it is clear in empirical data; the latest analysis of national vital statistics data reveal that US life expectancy dropped by a full year in the first half of 2020, from 78.8 years in 2019 to 77.8 years in the first half of 2020.⁸ This life expectancy decline was largest among non-Hispanic Black males, whose life expectancy dropped by three years in just one year. Hispanic males also saw a large decrease in life expectancy, with a decline of 2.4 years. Non-Hispanic Black females saw a life expectancy decline of 2.3 years, and Hispanic females faced a decline of 1.1 years.⁹ This hit – driven primarily, but not exclusively, by COVID-19 mortality – adds to an already inequitable picture with excess deaths associated with all-cause mortality.¹⁰

The disparate impact is also evident regarding problems ancillary to the pandemic, such as the economic recession, which has inflicted a greater toll on BIPOC communities as well. Job and wage losses due to COVID-19 have hit marginalized and minoritized communities hardest; more than half of Hispanic (58 percent) and Black (53 percent) households in the US Census Bureau’s Household Pulse Survey reported a decline in employment income since mid-March 2020.¹¹ Black workers have experienced the highest rates of unemployment and the weakest recoveries since the March-April 2020 unemployment peak.¹²

Early in the pandemic, it became evident that the country’s public health infrastructure would strain to meet the demand for timely, granular, and actionable data. In particular, it was clear in the first weeks of the pandemic that despite promises to do so, race/ethnicity data were not being collected in systematic and comprehensive ways. These data are critical for understanding injustice and ensuring the optimal health of all communities – but it was gravely missing from COVID-19 test data throughout the country.¹³ These data are also missing from many vaccination records, again hampering efforts to challenge racial injustice and center equity. Despite continued problems with missing race/ethnicity data, the inequitable burden of COVID-19 is well established.¹⁴

Some have interpreted racial/ethnic inequities in COVID-19 incidence and mortality through behavioral explanations, arguing that patterns are explained by preexisting conditions, including higher levels of obesity, asthma, and heart disease. Yet such logic fails to acknowledge root causes, what epidemiologists call “the causes of the causes.”¹⁵ On this point, Data 4 Black Lives is clear: “[W]hy are Black people particularly vulnerable and over-represented among COVID-19 cases and deaths? The conditions that make Black communities vulnerable to the virus are the same conditions that make Black communities vulnerable to the daily harms of structural racism.”¹⁶ And as Rachel Hardeman points out, “[O]ur traditional notions of white supremacy keep us focused on hate groups and vulgar language rather than a culture and ideology born from the premise of Black inferiority and false notions of race as biological that have permeated the ways in which we conduct our research.”¹⁷

One of the lessons from the COVID-19 pandemic has been the need to reexamine the political underpinnings of public health data systems, particularly the ways that racism and white supremacy have inhibited our collective actions. There are new national efforts in this area, with a Robert Wood Johnson Foundation-funded Commission to Transform Public Health Data Systems noting that it “is the time to fundamentally reprioritize our public health data and related health data systems so they work better to ensure equitable outcomes for all.”¹⁸

III Political Pivot Point

A political and social-cultural pivot point has been several years in the making, starting with the Black Lives Matter (BLM) movement,¹⁹ and arguably reaching a crescendo in 2020 with the murder of George Floyd, concurrent with the inequitable hardships inflicted by the COVID-19 pandemic. Some data have indicated that the BLM movement reached new heights in 2020, possibly becoming the largest mass movement in American history.²⁰ Douglas McAdam, a scholar of social movements, noted that BLM is “setting in motion a period of significant, sustained and widespread social, political change” and that such an achievement by a mass movement is allowing society to experience “a social change tipping point” that is both “rare” and “potentially consequential.”²¹

Indeed, public health experts have also noted a “sea change” in America’s growing “recognition of racism as a durable feature of US society and of its high cost in Black lives.”²² Moreover, it is important to recognize that the confluence of the BLM protests of 2020 and the COVID-19 pandemic is not accidental; there is a linkage between the two. If not for the COVID-19 pandemic, the strong momentum, size, and influence of the BLM protests in 2020 following Floyd’s death would likely not have materialized to the same extent.²³ Hence, viewed broadly, any outcomes toward equity made by the BLM protests of 2020 could also be viewed as part of the broader legacy of the pandemic.

Also significant is the coupling of the BLM political movement – and its power – with the election of President Biden,²⁴ and the seismic change transitioning from the Trump Administration to one that is, on the surface, not as hostile to racial and health equity.²⁵ For example, President Biden has signaled a willingness to protect the Affordable Care Act (ACA),²⁶ and to implement some reforms called for by BLM activists.²⁷ Additionally, the Democrats gained control of the Senate,²⁸ giving the party complete control of both houses of Congress, along with control of the Presidency, at the beginning of 2021. While there is debate about how much progress the Democrats can accomplish toward racial and health equity, the Democrats’ goals are more closely aligned with racial and health equity goals, and they provide the BLM movement with actualized political power at the federal level. However, it is important to note that much of the law that impacts health equity also exists at the state and local levels. And while there have been gains made at such levels,²⁹ local gains vary across the country, as some states are not embracing legal changes advancing health equity. Indeed, there has been significant political pushback. A year after the 2020 election, the scope of gained political power has reached greater uncertainty. Many progressive goals have gone unfulfilled,³⁰ and the Republican Party is likely to retake the House in 2022,³¹ making the legacy of the political pivot of 2020 somewhat murkier and more nuanced than might have been initially surmised at the height of 2020’s political momentum. Still, the political gains and momentum observed in 2020 further solidify the pivot point in which America currently finds itself – a pivot created by an increasingly influential political and social movement coupled with political power gained in Washington, DC.

IV Legal and Policy Impact

Considering the political moment in which the United States currently finds itself – combined with the historic public health crisis – it is both logical and important to question what the legal and policy impact of this pivotal instance in American history will be. While, in a traditional sense, COVID-19’s societal impact is most likely to be acutely observed within the lens of health care and medicine (as the crisis is, at its core, a public health and medical problem), the impact of COVID-19 in American society will likely be quite broad, especially with regards to the pandemic’s impact on health equity and structural racism. Structural racism – regardless of whether it is directly or tangentially related to health or medicine – has an impact on health, and hence is also key to moving the needle on health equity. For example, police brutality affects health.³² When evaluating the pandemic’s legal impact (especially in the context of health equity and structural racism), it is important to use a broad lens to take account of the multi-faceted way in which health and law interact beyond narrow notions of “health law.” This holistic vantage point helps reveal what COVID-19 dramatically exposed – that inequities are structural, engrained, systemic, and inescapable, continually reinforcing flawed systems in all domains of daily life.

A Law and Health

The relationship between law and health is complex. One might imagine that the nexus of law and health that produces “health law” would be confined to the directly related jurisprudence, for instance, medical malpractice torts, health insurance contracts, medical privacy, patient autonomy, and informed consent. Abbe R. Gluck notes that these traditional modes of health law are typically “private law,” which is focused “on regulating relationships among private parties” and has been historically sourced from “states, local governments, and the medical profession itself.”³³ However, in our modern society, there is a need to look beyond these traditional relationships between private parties. Gluck notes that health law should encompass a focus on “public law” – in other words, on “a field that is defined by the role of the government” – particularly pointing out the ACA and its outsized role influencing health beyond the traditional “private law” domain.³⁴

Additionally, it is important to consider areas of law that may be – on their face – tangential and not directly related to health. However, these “tangential” areas are more than ones merely touching on health care concerns; they are instead truly core areas of law related to the social and structural determinants of health, and have documented impacts on health disparities affecting BIPOC people, including the disparities observed with COVID-19.³⁵ Social determinants include discrimination, poverty, legal and political systems, housing, and health care.³⁶ Hence, areas of jurisprudence, such as immigration,³⁷ employment law,³⁸ criminal law, education, tax law,³⁹ and housing/zoning,⁴⁰ are relevant to health equity. As previously addressed, criminal justice is a good example, given that the linkage between health and police brutality is now documented.⁴¹ “Mass incarceration” is also a structural determinant of health that has “disproportionality harmed low-income and racial and ethnic minorities.”⁴² Nearly every aspect of daily life plays a role in constructing one’s health. These aspects of daily life – in other words, the conditions where people live, learn, work, and play – are part of the social determinants of health.⁴³ The law also touches on every aspect of daily life and thus also touches on the social determinants of health. In this way, nearly every area of law could be deemed “health law” and have some influence on societal health equity.

B Legal Legacy

COVID-19’s imperfect legal legacy on health justice is unfolding before us. A legacy that bends the United States toward greater health equity is possible and can be rooted in several areas of policy and law, such as state and local law, and federal administrative law. In this section, we broadly examine four possible examples of legal legacy: (1) expanded health care access; (2) criminal justice reform; (3) the correction of historical red-lining; and (4) the reformation of administrative enforcement of Title VI of the Civil Rights Act.

First, expanded health care access is a key component of combating health inequities and tackling the pandemic,⁴⁴ and expansion is likely to be one of COVID-19’s legal legacies.

Expansion will most likely be demonstrated through protecting and expanding the ACA and Medicaid coverage. In 2021, President Biden issued an executive order reopening enrollment to ACA health plans, explicitly noting that doing so would “protect and build on the Affordable Care Act, meet the health care needs created by the pandemic, reduce health care needs created by the pandemic, reduce health care costs, protect access to reproductive health care, and make our health care system easier to navigate and more equitable.”⁴⁵ President Biden is also signaling an end to the Trump Administration’s “health policy goal” of approving state Medicaid waivers to allow work requirements for Medicaid enrollees.⁴⁶ Work requirements are state mandates that require Medicaid recipients to work a set number of hours per month in order to receive Medicaid benefits.⁴⁷ Data have shown that work requirements are harmful and lead to coverage loss.⁴⁸ Rolling back work requirements removes a barrier to accessing care. However, a possible pitfall in the expansion of health care is the continuing deadlock in Congress. For example, the Democrat’s “Build Back Better” bill contains measures that would help address the expansion of health care, such as closing the Medicaid coverage gap,⁴⁹ and reducing high drug prices,⁵⁰ among other ambitious priorities. But with the bill stalled and the increasing possibility of the Democrats losing control of Congress in the midterms, the chances of such legislative initiatives succeeding in reducing health inequities are limited.

A second legal legacy is criminal justice reform. Flowing from the political pivot earlier discussed, issues of criminal justice reform have taken on recent impetus. Additionally, criminal justice is a key factor in racial inequity in the United States, and reform is important to reduce health inequities. A recent example of reform comes from Illinois, where the state passed a sweeping reform of criminal law.⁵¹ The law notably makes Illinois the first state to eliminate cash bail and narrows the definition of felony murder, something criminal justice reform advocates have been calling for nationwide for years. Such reforms are critical from a health equity standpoint. Like police brutality, criminal justice and incarceration have notable and recognized links to health and health equity in American society.⁵²

A third possible legacy is addressing housing equity. In 2015, the Obama Administration instituted an administrative rule enforcing the Affirmatively Further Fair Housing (AFFH) provision of the Fair Housing Act. The Obama rule conditioned “receipt of HUD [US Department of Housing and Urban Development] funds by local recipients on their [local governmental authorities] looking searchingly at unequal access by community members to housing located in neighborhoods of opportunity.”⁵³ AFFH serves as a federal governmental incentive to influence local government zoning law, where “HUD beneficiaries are required to initiate discussion about how to move toward fair housing for all and then to take action.”⁵⁴ The Obama-era proposal was lauded as finally allowing administrative enforcement of the AFFH. However, the Trump Administration terminated the rule, citing it as “unworkable” and a “waste of time.”⁵⁵ As was widely expected, the Biden Administration reinstated the Obama-era rule, effective July 31, 2021.⁵⁶ A return to the Obama-era rule is an important push toward health equity, with HUD Secretary Marcia Fudge noting that the return reflects the fact that “HUD is taking a critical step to affirm that a child’s future should never be limited by the ZIP code where they are born.”⁵⁷ Another key aspect of housing in the realm of health equity is that of the COVID-19 eviction moratorium. In 2020, the Centers for Disease Control and Prevention took the unprecedented step of halting evictions to stop the spread of COVID-19.⁵⁸ The moratorium was a positive step toward health equity, while also underscoring broader housing concerns.⁵⁹ However, the Supreme Court struck down the moratorium in August 2021.⁶⁰ The order doing so was 6-3, along ideological lines, a reminder of another barrier toward effectuating health equity. Considering the substantial change in the federal judiciary over the last few years via the Trump Administration’s conservative judicial appointments, ones which lack any meaningful reflection of the nation’s diversity,⁶¹ it is important to recognize that this unrepresentative judiciary could imperil equitable progress.

A final example is reformation of administrative enforcement to Title VI of the Civil Rights Act to better effectuate health equity. With the increased recognition and understanding of structural racism and how it is a root cause of health inequities,⁶² it makes sense that structural pillars such as federal governmental agencies are part of the structural problem producing inequities that continue into the COVID-19 era. However, reformation of a structural pillar such as administrative enforcement is also a key opportunity to reduce inequities. In the context of health care, “Title VI prohibits health care facilities in receipt of government funding from using racial bias to determine who receives quality health care.”⁶³ The promise of Title VI to eliminate health inequities has not been fulfilled. A key reason is that the “Supreme Court ruled that private parties do not have a right to sue for disparate impact bias under Title VI,”⁶⁴ leaving enforcement to the Department of Health and Human Services, whose track record has been “woefully inadequate” in enforcing Title VI to stop segregation and inequities in federally funded health care facilities.⁶⁵ Hence, there is an opening for the Biden Administration to prioritize effective Title VI enforcement. With the right leadership and guidance, administrative enforcement can potentially be more effective than private enforcement in the courts, as federal agencies have the “institutional advantages” of “resources” and “expertise” that courts may not have.⁶⁶

V Conclusion

The legacy of the pandemic in the context of structural racism is unfolding; its path, while uncertain, contains promise to better effectuate health equity in the United States. How far the pandemic will move the country toward health equity is difficult to predict with precision; however, the unique moment presents the possibility of significant, if not monumental, progress. We believe that the legacy of COVID-19 in the context of American structural racism will be one that yields greater health equity; however, this outcome is not certain because while there are clear forces that can help propel America to greater health equity, opposing forces remain and will mitigate gains. While we offer our analysis as a predictive legacy informed by what has unraveled thus far, we also hope that it inspires and informs key stakeholders of the critical policy and legal areas on which to focus energy in the wake of the “twin crises” of the pandemic and structural racism.⁶⁷ Indeed, it is no guarantee that the arc of history will “bend” toward justice; it must be actively steered and pulled toward an equitable destination.⁶⁸ The future is in our hands.

8 Access to Scarce Interventions Age and Disability

Govind Persad and Jessica L. Roberts ^*

I Introduction

The COVID-19 pandemic placed older people and people with certain disabilities at especially acute risk of death. This risk did not stem merely from the virus, but from unfair policies during the pandemic. This chapter focuses on two resources that were scarce at different points in the pandemic: (1) critical care interventions; and (2) vaccines. We explore both formal allocation guidelines and their implementation, focusing on older adults and people with disabilities.¹ We conclude that while inclusive, non-discriminatory policies are necessary, they are insufficient alone. True fairness and equality require addressing biases and inequities in implementation.

II Critical Care Resources

Patients who are severely ill, whether with COVID-19 or other conditions, often need critical care. When need exceeds availability, difficult choices among patients arise. Ventilator scarcity was publicized early in the US pandemic response, but rarely materialized. More common has been scarcity of staff, intensive care unit (ICU) beds, equipment such as dialysis machines, and supplies such as oxygen. This part explores US crisis standards of care, starting with written policies and then turning to implementation.

Crisis standards of care are formalized resource allocation protocols designed to guide health care providers in emergencies. They articulate how scarce, potentially life-saving health care should be distributed when need outstrips availability. How can we ensure that protocols for responding to scarcity treat older people, or people with preexisting medical conditions or disabilities, fairly? Three concerns about protocols should be distinguished: (1) whether an outcome is fundamentally inappropriate to consider; (2) whether considering an outcome may exacerbate disadvantage; and (3) whether predictions regarding an outcome may be inaccurate.

Some fairness concerns may apply more broadly than others. Legally, protections against disparate treatment (for instance, exclusion of specific medical conditions) often apply to individuals rather than groups. In contrast, protections against disparate impact – protocols that may create unequal outcomes – require considering population-level effects.

A Benefit-Based Frameworks

Unfairness charges have been leveled at protocols that aim to achieve three different types of outcomes: (1) quality of life; (2) years of life preserved; and (3) deaths prevented. These aims could be pursued through individualized assessments – for instance, use of Sequential Organ Failure Assessment (SOFA) scores. They could also be pursued through less individualized approaches.² We discuss each of these three outcomes in turn.

1 Quality of Life

Outside of scarcity contexts, there is little disagreement that treatments’ effect on quality of life matters. That a treatment lacks painful side effects, for instance, is a point in its favor. Almost all recognized frameworks, however, regard using preexisting quality of life to distribute scarce resources among individuals as inadvisable.³ Individuals are typically best placed to judge their own past and present quality of life, which makes present quality of life a poor basis for choosing among individuals. In addition, distributing scarce resources based on preexisting quality of life will likely worsen disadvantage by providing fewer resources to people whose preexisting quality of life is lower.⁴ No states proposed using expected quality-adjusted life-years to allocate critical care treatments. Some, however, initially used criteria that referenced medical conditions, such as intellectual disabilities, that might be thought to reflect quality of life factors. These criteria have now been removed, some after legal challenges were announced though not by court order. One ethically defensible exception to a general rule against using others’ quality of life judgments to allocate treatments among individuals under scarcity might involve individuals to whom the concept of a quality of life does not apply, such as those who are persistently unconscious.⁵

2 Years of Life Preserved

How much a treatment extends life typically matters greatly in medicine – achieving even an extra year of survival is regarded as a breakthrough. Efforts to prolong life avoid the problem of overriding individual experience involved in attempts to assess quality of life, since individuals are typically not best placed to predict their future life expectancy. But considering future life expectancy may sometimes exacerbate disadvantage. Certain medical conditions tend to decrease future life expectancy, which means that considering future life expectancy may disproportionately exclude people with such conditions. How to weigh the risk of disproportionate exclusion against the preservation of future life is complex. Some take the position that life expectancy should be completely irrelevant to resource allocation. Others believe that where medical resources are scarce, it is ethically defensible to prioritize someone with Down syndrome or cystic fibrosis over someone with a drastically life-shortening condition such as terminal cancer, but not to prioritize someone facing no impediments to lifespan over someone with Down syndrome or cystic fibrosis. Still others do not regard life expectancy as fundamentally irrelevant, but worry that using present health status to estimate future life expectancy is too inaccurate or allows for the introduction of bias.

Although no court has found that considering how much a treatment would extend a patient’s life violates the law, several states have elected to remove its consideration from crisis standards of care because of concerns about disproportionately excluding candidates with life-shortening conditions. There is, however, no reported case law rejecting the legality of considering future life expectancy in crisis standards of care to allocate ventilators or other treatments. Some studies have indicated strong public support (upwards of 75 percent) for considering life expectancy,⁶ but others suggest lower levels of support.

Notably, using age as a predictor of future life expectancy is less likely to exacerbate overall disadvantage than using health status as a predictor.⁷ This is true for several reasons: (1) having already lived a long time means one is less likely to have experienced many years of discrimination or poor health; (2) people who are medically or socially vulnerable are likely to become ill earlier in life, when they still have a long future life expectancy; and (3) it is more disadvantaging to die earlier in life. The outsized toll of lost years of life in US minority communities,⁸ for instance, suggests that preserving future life by prioritizing the prevention of early deaths may remediate rather than exacerbate disadvantage.⁹ Metrics such as Standardized Expected Years of Life Lost, which uses the global highest life expectancy at the time of death as a comparator rather than individuals’ actual life expectancy, could capture the importance of preventing early deaths without disadvantaging individuals who have life-shortening medical conditions or face shorter life expectancies due to structural racism, and without categorically excluding older adults.¹⁰

3 Deaths Prevented

To prevent more deaths with a limited supply of resources, many protocols consider recipients’ probability of survival, and some also consider the quantity of resources (e.g. time on dialysis) they are expected to need in order to benefit. Almost everyone agrees that preventing more deaths matters. But considering probability of survival or quantity of resources required could also exacerbate some forms of disadvantage, if those who are less likely to benefit or who need more resources also tend to be more disadvantaged. This presents a question about how to weigh saving more lives against not exacerbating disadvantage. In assessing this question, it matters whether some of the additional people saved by considering probability of survival or quantity of resources needed are themselves disadvantaged, as appears plausible given the connection between disadvantage and various health risks. For instance, considering quantity of resources used may not exacerbate disadvantage if more disadvantaged patients (for instance, people needing regular dialysis or ICU care for illnesses other than COVID-19) require fewer resources to obtain the same quantum of benefit, compared to COVID-19 patients who are very sick right now but who were not previously disadvantaged. Predictions about future resource use, which are less certain, may also be differentiable from facts about actual resource use – for instance, whether a patient’s condition has improved after seven days of ICU treatment.

B Benefit-Downplaying Frameworks

Allocation protocols that completely reject the relevance of quality of life, preserving future life, and preventing more deaths might be termed benefit-insensitive: a patient’s prospect of benefit is irrelevant to whether they receive treatment. Benefit-insensitive approaches include first-come, first-served and random selection of treatment candidates.¹¹ While these approaches claim to avoid biased decisions, they countenance more loss of life and do not make individualized judgments. Benefit-insensitive approaches may also fail to prevent the magnification of prior disadvantage because disadvantaged people have been more likely to contract and be hospitalized for COVID-19, meaning that the additional loss of life countenanced by benefit-insensitive approaches may fall disproportionately on disadvantaged people.

An alternative approach might be called benefit-binary.¹² Unlike the wholesale rejection of the ability to benefit of the benefit-insensitive model, this approach sorts patients into two categories: “unable to benefit” and “able to benefit.” Those able to benefit can be prioritized over those who are unable to do so, but there is no further benefit-based prioritization among those able to benefit – instead, benefit-insensitive approaches such as lotteries or first-come, first-served distribution are used to choose among them. This approach is more individualized and could therefore result in fewer deaths than completely benefit-insensitive approaches. But, because it ignores individual variations in the ability to benefit, it would tolerate substantially more loss of life – again, concentrated among those more exposed to COVID-19 – than benefit-based views. It is also unclear whether benefit-binary approaches will address disadvantage or disability discrimination, since non-COVID-19 patients with disabilities or who are disadvantaged may sometimes be more likely to benefit from an intervention (such as a ventilator or dialysis treatment) than previously healthy or advantaged acute COVID-19 patients who are also able to benefit but less likely to do so. Last, benefit-binary approaches create a sharp distinction between being “unable” and “able” to benefit that treats people with similar prospect of benefit very differently, and may generate pressure to expand the category of people “unable to benefit,” since few patients truly have zero prospect of any benefit from an intervention.

C Frameworks That Remediate Disadvantage

Rather than eliminating or reducing consideration of benefit in the hope that doing so will treat disadvantaged people more fairly, disadvantage could instead be addressed through intentional efforts. Some have suggested a “reserve” or categorized priority system that would set aside a subset of available resources for priority access for people who are disadvantaged.¹³ Others object to approaches such as reserve systems, however, because they address disadvantage at a community rather than an individual level.¹⁴ Even if a reserve system that considers both disadvantage and prospect of benefit is better for disadvantaged people overall than a benefit-insensitive approach, those specific individuals who are less likely to benefit from treatment may have better chances of receiving treatment under a benefit-insensitive approach.

For policymakers concerned about the fairness of a purely benefit-based approach, the choice between an approach that explicitly incorporates both harm prevention and addressing disadvantage, such as a reserve system, and one that deemphasizes or removes consideration of either value, as benefit-insensitive approaches do, depends on a more fundamental question. If what policymakers value is protecting from the harms of COVID-19 people who are unfairly disadvantaged, including by ableism or ageism, a reserve system is an appealing modification to benefit-based approaches. Under conditions of scarcity, a reserve system can improve the fairness of distribution compared to a purely benefit-based approach, while averting a similar amount of harm. Or it could give further priority to disadvantaged people while averting modestly less harm than purely benefit-based approaches. Under either design, a reserve system can better address overall disadvantage and avert more harm than an outcome-insensitive approach. But benefit-insensitive approaches are preferable if policymakers instead regard treating everyone identically or providing a treatment to those specific individuals who are less likely to benefit from that treatment (as opposed to providing treatments to individuals who are disadvantaged more broadly) as fundamentally important. Similar questions about the relative priority of disadvantaged communities’ interests and individual anti-discrimination claims have arisen elsewhere, such as in debates over allowable health benefit designs.¹⁵

The widespread use of age as a factor in vaccine allocation, meanwhile, suggests inconsistency with objections to the use of age in critical care allocation. Notably, one recent study suggested that assessments of expected ventilator benefit using the SOFA score were “significantly inferior to simply using age” to prioritize younger patients; another found that a youngest-first allocation both saved more lives and reduced disparities compared to SOFA or random allocation; and yet another concluded that data from a scoring system based on SOFA alone “strongly suggest the score was biased against younger people.”¹⁶ While using age as the sole basis for allocation is not consistent with current legal guidance, that guidance also explicitly permits the use of age as one factor.¹⁷ If age is predictive of benefit – albeit in opposite directions – for both ventilators and vaccines, it is difficult to defend its use in one context but not the other. Using age as a factor in distributing scarce ICU beds or ventilators could improve benefit while remediating disadvantage, by protecting younger but very ill people – often people with life-shortening disabilities or members of minority communities – who can benefit from treatment and who were excluded by the age-based prioritization of older patients for vaccines and therapeutics. One study concluded that a SOFA-only approach that excluded consideration of age would likely lead to “giving an older person with a poor prognosis a ventilator instead of a younger patient with a better prognosis” and to “prioritizing older White patients at the expense of younger BIPOC [Black, Indigenous, and People of Color] patients.”¹⁸

III Vaccines

As the pandemic progressed, interventions that forestall the need for critical care – ranging from new therapies for COVID-19 patients to vaccines that could prevent COVID-19 infection – became available but were often scarce. This part turns to the allocation of therapeutics and preventatives with a focus on vaccine prioritization and access. In this context, older Americans and Americans with disabilities were often given formal priority in written protocols, but this priority often did not translate into actual priority in access.

Few advocated benefit-insensitive (first-come, first-served or random) vaccine distribution. Nor was individualized assessment required: categorical inclusions and exclusions based on health status or age were typical. This likely reflects the fact that vaccines and therapeutics present less tension between addressing disadvantage and preventing harm: those whose disadvantage worsens their prospect of benefit from a ventilator or ICU bed also gain most in relative safety by becoming vaccinated.

Debates over vaccine prioritization focused on the list of categorical inclusions: which medical vulnerabilities would make a person eligible for early vaccination. The Centers for Disease Control and Prevention (CDC) listed specific medical conditions associated with greater COVID-19 risk, and many studies identified similar high-risk conditions.¹⁹ These studies, however, typically focused on infection fatality rates – that is, risk among those infected – rather than risk of exposure to COVID-19.

Considering exposure risk would also recommend prioritizing people living in congregate settings and potentially those whose medical vulnerabilities preclude effective protective measures, such as masking or socially distancing. In contrast, conditions that do not affect exposure risk or risk if infected were not a basis for accelerated eligibility. Just as certain disabilities, such as those affecting mobility, qualify individuals for parking permits but others do not, conditions such as Down syndrome that increase risk of severe outcomes if infected should support early eligibility for COVID-19 vaccines, while conditions that do not increase risk should not.

Most states used an “honor system,” requiring only self-attestation of medical risk.²⁰ This approach avoided the need for documentation. But it allowed people at lower risk who misinterpreted guidance or willfully misrepresented their status to receive vaccines before people at higher risk. Additionally, while some states prioritized people with multiple risk-increasing conditions, few prioritized among risk-increasing conditions, even though certain conditions (such as Down syndrome or cancer) appeared to increase risk much more than others. Some states allowed providers discretion to manage medical eligibility.²¹ This approach might be superior to an “honor system” at matching eligibility to actual risk and be more inclusive of people at high risk because of uncommon conditions, but could present challenges for individuals without providers and introduce subjective judgment by providers. An alternative approach would be active outreach and provision of vaccine appointments to people with documented high-risk conditions, rather than requiring individuals to assess their own risk or provide proof.²² This approach was used in some health systems but presents challenges due to health system fragmentation.

In contrast to many states’ total removal of age from critical care distribution protocols, vaccine eligibility was often based on older age alone. Age was a reasonable access criterion given the sharply increasing risk of COVID-19 death at older ages. However, one-size-fits-all age cutoffs, such as 75, were criticized for exacerbating disadvantage and health disparities, given that disadvantaged people and people with certain disabilities face shorter life expectancies and higher COVID-19 risk earlier in life than others.²³ Empirical research also demonstrated that including factors other than age was both more equitable and prevented more harm than age cutoffs.²⁴ In response, some states lowered age thresholds or permitted universal eligibility for certain populations, such as Federally Qualified Health Center patients.²⁵

A few states even attempted to use age as the only criterion for vaccine access, touting its administrative simplicity and strong correlation with risk.²⁶ These approaches quickly faced challenges for excluding individuals at high medical risk,²⁷ and they may have also been inconsistent with regulatory language interpreting the Age Discrimination Act, which prohibits the use of age as the sole determinant of access to treatment. These approaches were either revised or became moot with universal vaccine eligibility.

IV Barriers to Implementation

While attempts to adopt non-discriminatory allocation policies are laudatory, these efforts alone will not be sufficient to ensure that older Americans and Americans with disabilities receive the care that they deserve during a public health crisis.

A Unconscious Bias

Even health care providers who lack discriminatory intent may nonetheless make decisions based on unconscious beliefs or attitudes about particular groups.²⁸ Over the past decade, experts have recognized implicit bias as a potential contributor to health disparities.²⁹ While race has been the primary research focus,³⁰ studies have also documented implicit bias on the basis of age and disability in health care.³¹ Sadly, the pandemic has further exposed socially pervasive ageism and ableism.

Importantly, research shows that, when health care professionals exhibit implicit bias, it lowers the quality of care that they provide.³² Unconscious bias against older people and people with disabilities could influence seemingly impartial medical judgments about the kinds of resources an individual might require (including potential accommodations during treatment), the prospects of long-term survival, or the effect of permanent disabilities on short-term recovery. Unconscious bias is particularly salient to approaches that allow for physician discretion rather than a formalized scoring system. These biases could influence the outcomes of allocation approaches that incorporate subjective medical judgment or rely on providers’ intuition and affect the provision of non-scarce resources to COVID-19 patients throughout their interaction with health systems. Thus, even well-intentioned health care providers who wish to provide inclusive COVID-19 treatment that conforms with applicable standards and policies could still make biased decisions because of their unconscious negative beliefs about older people and people with disabilities.

B Lack of Access to Technology

Many public health authorities relied on digital tools to connect eligible individuals with vaccination appointments. For example, states offer online registration systems for eligible residents that promise to notify them of appointments, often by text or email.³³ Interactive, web-based maps allow people to locate nearby vaccine providers.³⁴ Unfortunately, relying too heavily on these technologies may exclude some of the most vulnerable Americans. While older adults are online more now than ever before, a digital divide still exists between older and younger Americans.³⁵ Older, poorer, and less educated seniors are even less likely to be comfortable with digital technology.³⁶ Troublingly, some of these differences fall on racial lines: older Black Americans are significantly less likely to go online or have broadband access.³⁷

Preexisting access barriers related to technology may likewise impede vaccination for people with certain kinds of disabilities and health conditions. Despite the Americans with Disabilities Act,³⁸ much of the Internet remains inaccessible for people with disabilities that affect vision, communication, and dexterity. One study found that 98 percent of the home pages of one million popular websites failed to meet web accessibility standards.³⁹ Thus, reliance on online tools to help locate vaccine sites and book appointments could inadvertently exclude people with disabilities.

C Lack of Access to Transportation

Despite a diversity of locations, both seniors and people with disabilities encounter serious transportation barriers getting to vaccination appointments. Many older adults no longer drive and lack access to convenient public transportation.⁴⁰ In fact, in the United States, about 1.6 million adults over 65 are homebound,⁴¹ and over half of homebound older Americans have at least one additional barrier to vaccination, such as living alone or not having access to technology.⁴² Complicating matters more, they may also not have friends or family members who can drive them places.⁴³ Vaccination sites, which are often hospitals or pharmacies, may be prohibitively far for seniors, who generally receive health care through individual physicians or health centers.⁴⁴ One study from late 2020 found that, in 12 percent of counties, about half of older adults would have to travel more than ten miles for a vaccine.⁴⁵ Again, race is a complicating factor. Only 3 percent of White older adults are homebound, compared to 15 percent of Hispanic older adults and 7 percent of Black older adults.⁴⁶

Similarly, over 25 million Americans with disabilities report travel limitations, and 3.6 million people with travel-limiting disabilities are homebound.⁴⁷ As a group, people with disabilities are less likely to drive than people without disabilities, meaning they may need assistance to reach vaccine sites.⁴⁸ People with disabilities also encounter barriers in both public transportation and in paratransit.⁴⁹ Stations may be inaccessible; lifts and ramps may be inoperable; drivers may not stop for people with visible disabilities; scheduled pick-ups may be difficult to book, run late, or be completely missed; and travel times may be excessively long.⁵⁰ In addition, buildings or medical equipment may be inaccessible,⁵¹ and medical facilities may lack sufficient communication supports such as interpreters, qualified readers, informational materials, and accessible kiosks.⁵² These same issues could likewise impede vaccine access, even after a person with a disability manages to secure transportation and arrive at the vaccination site.

V Recommendations

Drawing from the lessons of the pandemic, we make the following recommendations for ensuring the fair allocation of limited health care resources.

A Debiasing

Given health care providers’ reported biases regarding older adults and people with disabilities and the vulnerability of those populations during the pandemic, debiasing will be essential to ensuring fair treatment and better outcomes. Studies have shown that interventions can effectively reduce ageism and improve attitudes toward older adults.⁵³ Reducing or eliminating negative stereotypes could then, in turn, reduce the effects of implicit bias, including in the context of health care. Effective strategies consist of education, intergenerational interactions, or some combination of the two.⁵⁴ Similarly, incorporating disability perspectives into medical education and practice could have a debiasing effect.⁵⁵ In addition, removing barriers to equitable treatment for older adults and their caregivers is essential. These factors, for instance, might support allowing many older adults and patients with certain disabilities to be accompanied by appropriately protected companions, even during a pandemic.

B Improving Access

The use of specific disabilities as a priority factor in vaccine allocation is a welcome attempt to address the outsized burdens that people with certain disabilities have borne during the COVID-19 pandemic. Yet simply listing older adults and people with disabilities as priority groups in vaccination plans will not by itself ensure that these populations receive vaccines.

Offering more vaccines in settings used by people with risk-increasing disabilities, and reaching out proactively rather than requiring people to prove eligibility, could have both improved the fairness of allocation and practically eased the process of obtaining vaccines for people with disabilities. In March 2021, President Biden took action to improve vaccine access for both older Americans and Americans with disabilities.⁵⁶ His plan includes a partnership between the CDC and the Administration for Community Living to provide almost $100 million in grant funding to networks for seniors and people with disabilities across the country with the goal of addressing barriers to vaccination.⁵⁷ The Administration for Community Living has already identified a number of promising strategies for combating many of the challenges described above. States, municipalities, and community partners can ensure that websites and materials are accessible and easy to understand, and that hotlines are available as an alternative to schedule appointments.⁵⁸ Advocacy organizations and networks can act as partners to help schedule appointments, provide transportation, and offer reminders.⁵⁹ Organizations can also help to identify access barriers at vaccination sites and to locate vaccination sites friendly to older adults and people with disabilities.⁶⁰ And finally, all stakeholders – states, municipalities, and community partners – can collaborate to facilitate mobile and in-home vaccinations.⁶¹

VI Conclusion

Several states adopted openly discriminatory resource allocation policies, especially in the early days of the pandemic. Much attention was given to these policies, and they were revised before being put into place. Most disparities, however, appeared to stem from problems in implementation. Regardless of crisis standards of care and vaccine distribution policies, older Americans and Americans with disabilities may still experience disparities. These issues do not disappear in the course of a pandemic, when tensions run high and resources run low. We have certainly learned many lessons from the current public health crisis. However, if we are serious about health equity in the future, adopting non-discriminatory and inclusive policies will not be enough. We must address the causes of health disparities in health care delivery to ensure that these laudable standards do not falter at implementation.

9 Humane and Resilient Long-Term Care A Post-COVID-19 Vision

Nina A. Kohn

I Introduction

Long-term care institutions were ground zero for the COVID-19 pandemic in the United States. The first reported outbreaks in the country were in long-term care institutions; such facilities continued to experience very high rates of infection and death during the first two years of infection, and substantial risk well into 2023.¹

Long-term care residents make up less than 1 percent of the US population. Yet, by January 2021, before the benefits of the COVID-19 vaccinations had been realized to any significant extent,² residents and staff of these institutions accounted for 38 percent of all US deaths from COVID-19,³ and nursing home residents alone accounted for about 25 percent of confirmed US deaths.⁴ A year later, residents and staff of long-term care facilities still represented a very disproportionate share of COVID-19 fatalities – as of January 2022, they accounted for at least 23 percent of all COVID-19 deaths in the United States.⁵ This chapter explains the underlying causes of this devastation and what can be learned from it to improve the future quality of long-term care. It shows how the patterns observed in long-term care facilities are the combined result of an inadequate public health response to the needs of long-term care residents, preexisting regulatory failures that rendered long-term care institutions infection tinderboxes, and policies that steered vulnerable adults into these institutions in the first place. It then suggests the regulatory and cultural shifts needed to create a more humane and resilient model of long-term care.

II The Crisis in Long-Term Care Institutions

In the United States, long-term care facilities fall into two major categories. First, there are nursing homes, highly regulated institutions that provide skilled medical and custodial care to adults with substantial chronic-care needs. Second, there are assisted living facilities, which provide a varied combination of housing, meals, and health-related services to adults with a broader range of care needs.

Residents of both types of long-term institutions are highly susceptible to COVID-19, as they are to other infectious diseases. Living in a congregate care setting impedes social distancing, and the flow of staff and visitors in and out of facilities creates many potential vectors of contagion. In addition, residents’ underlying health conditions make them highly vulnerable to the effects of infections, increasing the likelihood that they will experience serious illness and death if infected with COVID-19.

However, as detailed in this part, COVID-19’s disastrous impact on residents of long-term care institutions cannot be explained simply by residents’ susceptibility to infection. Rather, it also reflects an inadequate public health response to COVID-19 in these facilities, as well as a preexisting regulatory failure that left long-term care residents unreasonably vulnerable to pandemic conditions.

A The Role of Public Health Response Failures

COVID-19’s impact on long-term care residents reflects a slow and inadequate public health response to the heightened risk the virus posed to residents. Testing of nursing home residents and staff was not mandated by the Centers for Medicaid and Medicare Services (CMS), the federal agency that regulates such homes, until September 2020, six months after the start of the pandemic in the United States.⁶ Nursing homes were provided with limited personal protective equipment (PPE) by the federal government. However, the Federal Emergency Management Agency (FEMA), which was tasked with provision, provided woefully insufficient amounts of PPE, much of which was simply unusable (e.g., faulty masks, gowns with no armholes) or clearly inappropriate (e.g., condoms as PPE);⁷ FEMA never provided the N95 masks that workers needed to avoid infecting residents.⁸ Of course, testing deficiencies and PPE shortages also occurred in hospital settings, but nursing homes were generally given lower priority than hospitals for testing and PPE allocation, despite their highly vulnerable populations.

The public health response to the needs of assisted living residents was even slower and more haphazard than that to nursing home residents. The Centers for Disease Control and Prevention prioritized all long-term care facilities for the administration of vaccines, and states largely followed this advice. Nevertheless, the rollout to assisted living facilities was slower and bumpier than in nursing homes, in part because the facilities are less equipped to facilitate medical care.⁹ Similarly, the federal government provided support to nursing homes in general but provided support only to assisted living communities serving Medicaid-eligible residents (some 16 percent of assisted living facilities).¹⁰

B The Role of Regulatory Failure

The degree of danger that COVID-19 has posed to long-term care residents reflects long-standing problems in how these facilities are operated. The extent of the operational failures, in turn, is shaped by two types of regulatory failure: (1) a failure to mandate certain practices essential to ensuring safe and humane care; and (2) a failure to enforce existing regulations designed to protect residents.

1 Inadequate Regulatory Requirements

The extent to which long-term care institutions are subject to regulations designed to protect residents varies by type of long-term care facility. Nursing homes are highly regulated. Since the adoption of the federal Nursing Home Reform Act as part of the Omnibus Reconciliation Act of 1987, nursing homes certified to receive Medicaid or Medicare funding must have a comprehensive resident assessment and care planning system, meet federal standards related to quality of care and resident safety, and respect and support a litany of residents’ rights. By contrast, assisted living facilities, which are home to approximately one million Americans, are regulated almost exclusively at the state level (with significant variation from state to state) and are subject to far fewer regulatory requirements than nursing homes.¹¹ This difference in regulation can be attributed to several factors, including that: (1) assisted living was developed, at least ostensibly, as a nonmedical model of care; (2) the primary source of funding for assisted living facilities is private payment (unlike nursing homes); and (3) the 1987 Act was enacted prior to the ascendence of the assisted living industry.

Under-regulation of assisted living facilities is a serious concern. Such facilities increasingly take high-needs patients who might otherwise require nursing home care.

Nevertheless, state requirements for staffing – both in terms of the number and qualifications of personnel – are often minimal; assisted living facilities in some states are not even required to have staff present throughout the entire day.¹² A 2016 study found that although the majority of assisted living facilities admit residents who require nursing care, most did not have a licensed care provider on staff; rather, such facilities were staffed primarily by patient care aides, who, on average, were required to have fewer than seventy-five hours of training before they began providing care to residents, and who, in some facilities, were not required to have any formal training before providing resident care.¹³ This lack of skilled staffing is often attributed to the use by assisted living facilities of a “social model” of care instead of a “medical model,” but it raises serious concerns, by both patient advocates and medical providers,¹⁴ about the ability of assisted living facilities to meet residents’ basic needs, even during normal, non-pandemic conditions.¹⁵

Of particular relevance during the COVID-19 pandemic, infection-control requirements for assisted living facilities are also meager, despite the known risk of infectious disease outbreaks in such facilities.¹⁶ Only approximately one quarter of the states impose specific infection-control requirements on assisted living facilities, and over a third do not even require facilities to have infection-control plans.¹⁷ The result is a lack of proper planning and preparation for preventing transmission of disease. The lack of federal engagement is also a barrier to national-level planning and intervention. For example, assisted living facilities do not report COVID-19 infections and fatalities directly to the federal government,¹⁸ making it more difficult to understand and address the overall risk COVID-19 has posed to their residents.

While nursing homes are much more highly regulated than assisted living facilities, regulatory gaps still exist. Most importantly, federal regulations governing nursing homes fail to impose minimum staffing ratios. This failure had been identified as a major risk long before COVID-19 hit. It was well recognized that nursing home quality of care was undermined because nursing homes tend to be chronically under-staffed and to over-rely on part-time staff and staff who lack sick leave benefits (and thus are more likely to come to work when ill). There was also widespread agreement among experts that a minimum of 4.1 hours of direct-care staff per resident per day is needed on average to avoid systemic neglect,¹⁹ although most nursing homes provide less.²⁰ Recent evidence from the COVID-19 pandemic further underscores the danger of this gap by demonstrating the close relationship between staff time and resident well-being. Studies are finding that higher staffing levels (especially nurse staffing levels) are associated with reduced presence of COVID-19 in long-term care facilities,²¹ and with increased ability to contain outbreaks when they do occur.²² In addition, studies have linked over-reliance on part-time and agency staff, as well as lack of paid sick leave, to the spread of COVID-19 both within and among long-term care facilities.

2 Under-Enforcement of Existing Regulations

Whereas the primary regulatory failure in the assisted living context is a failure to mandate necessary practices, the primary failure in the nursing home context is under-enforcement of existing regulations. Under federal law, US nursing homes that accept Medicare or Medicaid funds – virtually all US nursing homes – are required to meet extensive quality-of-care requirements.²³ For example, nursing homes must ensure that their residents receive individualized care in accordance with professional standards of practice and do not experience avoidable harm or avoidable reductions in functional abilities.²⁴ If such requirements were enforced, the fact that nursing homes are not directly required to use the inputs they need to achieve those outcomes (such as sufficient staffing levels) would be of little practical consequence. However, that is not the case: nursing homes are rarely held to account for their failure to comply with regulations designed to protect residents.

This under-enforcement of regulations designed to protect nursing home residents is the combined result of two failures. The first is a failure of state inspectors to identify and accurately assess violations. As the Government Accountability Office has found, state inspectors systematically underreport serious deficiencies, including ones that pose immediate threats to residents’ health and safety.²⁵ Similarly, the Government Accountability Office has criticized regulators for failing to collect the information necessary to protect residents from identified abuse and neglect.²⁶

The second type of under-enforcement failure is a failure to correct and penalize identified violations. Regulators have statutory authority to impose significant penalties on facilities – including holds on new admissions or payment, as well as monetary fines. However, CMS has instead taken an approach that imposes no financial consequences for most regulatory violations. When violations are found – even serious violations – facilities are typically simply directed to make corrections and regulators may never assess whether those corrections are actually made.²⁷ Fines are rare and are reserved for certain categories of violation; they are also typically too small to deter bad behavior.

These problems became more acute during the Trump Administration,²⁸ in part because the Administration moved away from assessing fines for violations on a per-day basis in favor of assessing them on a per-instance basis.²⁹ Moreover, the Trump Administration severely curtailed enforcement efforts during the COVID-19 pandemic as CMS suspended a broad array of enforcement actions and waived key regulatory requirements for nursing homes,³⁰ often as part of broader efforts to ease burdens on health care providers.³¹ In addition, in response to the pandemic, nearly half of the states granted nursing homes (as well as other health care providers, such as hospitals) new immunity from civil liability, either by executive order or by statute.³² This was despite the much weaker justification for immunity in the nursing home context. As Jessica Roberts and I observed in spring 2020: “Hospitals justify their push for immunity on the grounds that courts should not second-guess the ethically charged resource allocation decisions made rapidly in response to a crush of COVID-19 patients. By contrast, the primary concern for nursing homes is that they will be held liable for inadequate infection control – a problem that typically reflects more deliberative choices over time.”³³

The result is that regulations designed to ensure that nursing homes provide adequate care are treated more like aspirational standards than enforced rules. It should not be surprising, then, that preventable suffering plagues nursing home residents. For example, roughly 20 percent of Medicare beneficiaries in skilled nursing facilities suffered avoidable harm during their stays,³⁴ and most nursing homes had documented infection-control problems.

III A Path Forward

The problems made visible by COVID-19 suggest the need to improve the regulatory framework governing long-term care facilities.³⁵ This section outlines regulatory changes that could better align financial incentives with quality of care and advocacy strategies that could help pave the way for such reforms.

A Align Financial Incentives for Institutions with Quality Indicators

Improving the overall quality of nursing home care in the United States will require adjusting the regulatory environment to create a much stronger economic incentive for nursing homes to deliver humane, high-quality care.

Economic incentives could take several forms. First, regulators could pursue enforcement approaches that include economically meaningful consequences for falling below acceptable standards. This would require making a broader range of violations fineable events and withholding new admissions and payments to facilities that are not in compliance with regulatory requirements. One way to do this would be to substantially expand the Special Focus Facility Program, which puts facilities with consistently high deficiencies on a more frequent inspection cycle and on a path to possible decertification, as legislation introduced in the US Senate in 2021 would do.³⁶ A more comprehensive approach would be to apply a broader and more robust range of penalties to all facilities – not merely those previously identified as particularly problematic.

Additionally, the Secretary of Health and Human Services might create real consequences for owners or operators with a track record of deficient care by refusing to certify the facilities that they own for participation in Medicare and Medicaid programs,³⁷ thereby cutting off primary sources of revenue.³⁸ Given that many facilities are part of large chains, and that chain ownership has been linked to lower quality care,³⁹ this could have substantial impacts.

Second, public funding for long-term care facilities could be much more closely tied to outcomes. Specifically, a robust pay-for-performance scheme could vary payments to facilities based on metrics of resident well-being. Such an approach would be a significant departure from the status quo. Most nursing home residents in the United States have their care paid for by the Medicaid program. Yet the Medicaid program provides little incentive for nursing homes to provide high-quality care. The precise formulas by which state Medicaid programs reimburse nursing homes for care can be complicated and are largely based on a per-resident, per-day approach, with increases common for patient mix and some limited increases for certain factors related to quality. Nursing homes that provide a high level of personalized care can therefore expect to receive similar levels of compensation as homes that provide woefully substandard care. The result is an insufficient incentive to provide high-quality care and an opportunity for unscrupulous providers to profit at the expense of their residents’ well-being.

The United States has never seriously tried a pay-for-performance system. Some states have offered small bonuses for certain improvements – but often these payments are too small to make those improvements economically attractive. Even amid the pandemic, as massive federal relief flowed to nursing homes, this windfall was almost entirely devoid of conditions,⁴⁰ and much of it may have never gone to patient care.⁴¹ Indeed, although the Trump Administration offered what it termed a “pay-for-performance” scheme in fall 2020, that scheme created no new requirements or meaningful new incentives. Rather, it simply offered bonus payments to facilities that kept new COVID-19 infections below a certain threshold – something the pay-per-resident model already incentivized. (Even without the payments, especially given shrinking admissions, nursing homes had an incentive to retain existing patients by avoiding lethal infections.)

The pandemic has exposed the need to consider moving to a robust pay-for-performance mechanism for long-term care facilities. Such an approach would encourage such facilities to improve performance and give facilities that make good choices for residents a stronger competitive advantage.

Third, public funding for long-term care facilities could be tied to inputs that research indicates predict quality of care and quality of life. That is, funding could be tied to use of inputs that are proxy measures of performance instead of (or in addition to) tying funding to direct measures of performance, as one would in a traditional pay-for-performance model. For example, funding – or at least increases in funding – should be tied to nursing homes meeting direct-care staffing minimums – including the 4.1 hours of direct-care staffing per day, which experts agree is critical to avoid systemic neglect.

Another way to prompt investment in critical inputs would be to adopt a “medical loss ratio” approach in which providers would be required to use at least a certain percentage of revenue to provide resident care. Much as the Affordable Care Act requires insurance providers to spend at least 80 or 85 percent of premium dollars on providing medical care, the federal government could require long-term care providers that accept Medicaid or Medicare funds to spend a minimum percentage of those funds on direct resident care (and not on administrative costs and profit).

Several states – spurred by concerns exposed by the COVID-19 pandemic – have begun to experiment with this type of spending requirement. In September 2020, Massachusetts announced that nursing homes in the state would be required to spend 75 percent of their revenue on direct-care staffing costs.⁴² The following month, New Jersey adopted legislation requiring that its nursing homes spend 90 percent of annual aggregate revenue on direct resident care, potentially broadly defined.⁴³ New York followed suit in April 2021, when – as part of the state’s annual Budget Bill – it adopted a requirement that nursing homes spend at least 70 percent of their revenue on direct patient care.⁴⁴

Ultimately, the success of this type of approach, however, will depend on several factors.

These include how states categorize expenses. New York, for example, defines “direct patient care” to include expenses that arguably do not fit that description (such as “plant operation and management”) and thus would allow for less money to be spent on what the lay person might think of as “direct patient care” than the language of its requirement suggests. It will also depend on setting the threshold at the correct level (i.e., higher than the 70 percent New York requires), so that owners do not unreasonably profit at the expense of residents. In addition, it will require imposing transparency requirements that prevent nursing homes from hiding profits as expenses through transactions with related entities.

B Increase Support for Community-Based Care

The pandemic revealed the inherent danger posed by the current policy framework, which favors institutional care over community-based care. Currently, Medicaid – the primary funding source for long-term care services in the United States – steers older adults in need of long-term care into institutions by (1) requiring states to use Medicaid funds to cover nursing home care but allowing states to choose whether to pay for most home-based care; and (2) allowing states that cover home-based care services to cap the number of beneficiaries served. Thus, in some states older adults must wait years before they can get home-based care.⁴⁵ Even then, care recipients may receive less help than they need because nearly three quarters of states limit how many hours they can get.⁴⁶ Thus, Medicaid pushes individuals – especially those with a lower socioeconomic status – into institutions even when they could live healthier and more satisfying lives with in-home help.

This institutional bias cannot be justified on fiscal grounds as it is not clear that steering individuals into facilities reduces public costs; there is some evidence that it may actually increase care-associated costs.⁴⁷ Nor can it be squared with the integration mandate of the Americans with Disabilities Act, which prohibits states from unreasonably requiring individuals with disabilities to receive services in a segregated setting when their needs could be reasonably accommodated in the community.⁴⁸

If the devastation that COVID-19 has wrought on residents of long-term care institutions has taught policymakers nothing else, it should teach them this: Medicaid’s bias in favor of institutionalization is dangerous and must end. Where a Medicaid beneficiary’s long-term care needs could be met in the community, and providing such care in a community-based setting would not be more expensive than providing care in an institutional setting, states should be required to provide coverage for community-based care on at least equal terms with institutional care. States should also be encouraged, even if not required, to cover care in community-based settings when doing so is not prohibitively expensive.

C Change the Narrative

The lack of protection for long-term care residents indicates an underlying willingness on the part of policymakers to tolerate suffering and isolation among older adults. This tolerance, which was present long before the COVID-19 pandemic, has been revealed in stark terms by the crisis itself. Indeed, the pandemic has shown not only how policymakers allowed dangerous conditions and patterns to persist, but also that they are willing to accept unprecedented levels of isolation and suffering. For example, federal and state regulators have responded to the pandemic by barring residents from having family visitors, while doing nothing to reduce the number of staff entering facilities. Limits on family visitors – even those who were serving as caregivers – were accepted in the name of protection, even though it meant condemning residents to conditions akin to solitary confinement. At the same time, not a single state adopted a one-site rule limiting staff to working in one care facility during the pandemic, as Canadian provinces did.⁴⁹ Nor did regulators require facilities to make efforts to reduce reliance on part-time and agency staff, despite evidence suggesting that eliminating staff linkages could reduce COVID-19 infections in nursing homes by 44 percent.⁵⁰

This tolerance suggests that public outcry and advocacy for the good care and humane treatment of long-term care residents is not yet sufficiently aligned or effective to support reform. Particularly in the context of a strong nursing home industry lobby – which demonstrated its muscle last year by extracting billions of dollars in payouts, in addition to liability relief from the COVID-19 pandemic – a different narrative and more robust advocacy effort is likely to be needed to significantly change the status quo.

It is instructive to compare policy and advocacy related to institutionalized older adults to that pertaining to children and disabled younger adults. A bias in favor of institutionalization persists for older adults even as it is eroded for younger ones. Although public funding continues to steer older adults into institutions, institutions for children and younger adults (e.g., orphanages, mental hospitals, and institutions for the developmentally and cognitively disabled) are increasingly shuttered, with the money diverted to community-based care. Ageism likely also shapes the willingness to tolerate regulatory violations in nursing homes. As noted above, nursing homes that violate regulations designed to protect residents from harm typically face a mere slap on the wrist. By comparison, childcare centers in violation of state regulations designed to protect children in their care commonly have their licenses revoked and their facilities closed.

Creating the momentum for reforming the status quo will therefore require concerted advocacy efforts to make it clear to policymakers that it is worthwhile to invest the political capital and resources necessary to transform long-term care – that the lives of those who need long-term care are worth it. This, in turn, will likely require creating a vocal, organized constituency for reforming long-term care systems. Advocates have long worked to improve regulations and policy interventions by working with regulators to improve the design and administration of long-term care policy. Little focus, by comparison, has been placed on creating public momentum or awareness of the issues, or on organizing stakeholders, such as family members, to advance reform.

With the consequences of the status quo laid bare by COVID-19, advocates should seize the moment to change the narrative about long-term care. Specifically, advocates must describe over-institutionalization of older adults, and the neglect they receive in facilities, not merely as a policy challenge, but as a civil rights issue of major moral consequence. By embracing a narrative that focuses on rights and morality, advocates may be able to capitalize on the moment to invigorate advocacy efforts and potentially foster a grassroots movement to push for a system of long-term care that is both humane in its approach and resilient to future disruptions.

IV Conclusion

The vulnerability of nursing homes and other long-term care facilities to COVID-19 both exposes the failures of current regulatory schemes designed to protect residents and points to what needs to happen to build a humane long-term care system that is resilient to public health disruptions. Fortunately, the policy changes needed to make long-term care resilient and humane are not radical; they would merely bring interventions that have been applied in other health care contexts into the long-term care space. However, making these changes will require confronting not only entrenched financial interests and institutions, but also the underlying attitudes that have enabled systems that normalize isolation and suffering.