Special Issue, Uncategorized

Intellectual Disability and Justice in a Pandemic

Ryan H. Nelson & Leslie P. Francis

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. Much of the discussion of care prioritization during the COVID-19 pandemic has focused on access to high-technology, intensive care under crisis conditions. This is understandable in light of initial fears that widespread triage and rationing measures would become necessary. However, as observations about the interplay between social determinants of health and COVID-19 infection rates and outcomes have become increasingly clear, attention has also been directed to inequalities in health and healthcare in the US. In this paper, we address another less-discussed set of issues: problems of discrimination and injustice involving people with intellectual disabilities confronted by COVID-19 that go beyond those seen in policies governing triage and rationing. After discussing the proper role of quality of life judgments in healthcare, we consider a range of issues relevant to people with intellectual disabilities, including staffing and structures in group-home facilities, the need for adaptive communication, and the role of support persons during care. Addressing some of these issues will require policy changes that may be widely beneficial; adjustments particular to individuals will also need to be evaluated from the perspective of whether they create undue risks. To address these issues, we draw insights from disability anti-discrimination law as it interfaces with the ethics of patient care, especially the distinction between accommodations for individual patients and modifications of policies addressing access to services and healthcare.

INTRODUCTION

If the COVID-19 crisis has brought any benefits, one is the increased attention paid to persons with disabilities in the contexts of clinical medicine and public health. There has been a great deal of insightful discussion since the outbreak about controversial disability issues the pandemic has brought to light. For a population often overlooked in both academic circles and the public square, mere visibility is a victory. There are at least two important respects in which the discussion remains underdeveloped, however.

First, much of the work being done has focused on disability considerations in policies governing triage and the rationing of critical care resources under crisis conditions. This is undoubtedly an important, and ethically complex, issue. Yet its immediate significance is limited since the vast majority of hospitals have not needed to implement their triage policies and thus have largely avoided the difficult “two patients, one ventilator” kinds of decisions initially feared. This being so, it is worth looking beyond crisis care to broader issues concerning contingency care, the health needs of persons with disabilities, and how the healthcare system can ethically respond to them in a pandemic.

Second, while disability in general has been a focal point throughout the crisis, intellectual disability (ID) in particular has received much less attention. ID is classified as a childhood onset neurodevelopmental disorder (APA 2013) involving a number of factors, including intellectual functioning (often measured with an IQ test) and adaptive behaviors (such as conceptual, practical, and social skills) (AAIDD 2010). The needs of people with ID, and the challenges they face, warrant independent consideration as they are often distinct from those of the broader disability community. Moreover, those with ID often face additional barriers to self-advocacy and are therefore less well represented in disability debates.[1] In this article, we aim both to broaden the COVID-19 discussion beyond triage and rationing and to focus it on the circumstances of people with ID.

We begin by outlining the recent debate over quality of life judgments in crisis care plans, highlighting how concerns about disability discrimination extend well beyond the context of crisis and apply to people with ID. We then consider how the unique needs of those with ID may impact their use of medical resources and affect ethical judgments about allocation. Next, we draw insights from disability anti-discrimination law as it interfaces with the ethics of patient care, particularly with respect to the distinction between accommodations and modifications. We conclude by identifying some additional forms of direct and indirect disadvantage associated with ID, considering whether any can be justified, and developing an ethical account of how they may be addressed.

INTELLECTUAL DISABILITY AND QUALITY OF LIFE

As state governments and private hospitals scrambled to develop crisis standards of care plans, triage protocols, and rationing guidelines in the early days of the COVID-19 crisis, disability advocates became increasingly concerned that people with disabilities were being unfairly disadvantaged. This concern appears to have been well founded. In its analysis of thirty state policies, the Center for Public Integrity (2020) found that “all but five had provisions of the sort advocates fear will send people with disabilities to the back of the line for life-saving treatment.” Antommaria et al. (2020) report that only around a quarter of allocation policies specify that decisions should not be based on disability, also noting “potential inconsistencies” in policies that “exclude disability discrimination but categorically exclude patients with certain preexisting conditions from receiving mechanical ventilation.”

Of particular concern has been the role of quality of life judgments in the plans. While the vast majority avoid explicit appeals to quality of life, a number of policies include provisions that, critics charge, discriminate against persons with disabilities and may rely on judgments that are at least indirectly related to quality of life judgments. Advocates have objected to ill-defined considerations related to “baseline functional status,” “comorbidity,” “health,” and “long-term survival” considerations as dogwhistles for disability bias (CPR et al. 2020; Stramondo 2020). Some argue that only criteria directly related to short-term survival—as calculated by SOFA or APACHE II scoring systems, for example—are legitimate for prioritization, thus rejecting categorical exclusion criteria and consideration of long-term prognosis (CPR et al. 2020). Other advocates go further, insisting that even differences in short-term survivability criteria risk being discriminatory against people with disabilities and that only strict “futility” provides legitimate grounds for denying treatment (DREDF 2020; Ne’eman 2020).

Concerns about potential discrimination may be compounded for people with ID, due in part to perceptions about the connection between intellectual functioning and quality of life. In an especially controversial example of guidelines disability advocates found objectionable, the state of Alabama initially emphasized a “successful outcome” with regard to “cognitive, neurological, and psychosocial” functioning, stating that “persons with severe mental retardation…may be poor candidates for ventilator support” (2020). A complaint from Alabama Disability Advocacy Program condemned the practice of “singling out and authorizing the denial of treatment to individuals with intellectual and cognitive disabilities based on misguided assumptions about the quality of life, the value of life, the prospects for survival, and the resource needs of people with disabilities” (ADAP 2020). Although Alabama has since withdrawn the guidelines, the ID advocacy group The Arc (2020) has filed similar complaints in Washington, Tennessee, Utah, Oklahoma, Connecticut, North Carolina, and Oregon.

While it is certainly worthwhile to point out the potential for ableist bias in crisis plans, we suggest that a more immediate concern lies in the role quality of life judgments play in contingency care, the space between convention and crisis in which a hospital “adapts available patient care spaces, staff, and supplies as part of the response to a surge in demand for services” (IM 2009). This concern is more immediate for two reasons. First, a number of hospitals have actually been operating in a contingency state due to the surge of COVID-19 patients, whereas very few have needed to implement crisis standards. Second, contingency care has the potential to be much more variable than that provided under crisis standards. However flawed their content, crisis plans typically include explicit protocols and oversight to ensure consistency of application. Contingency care, on other hand, can involve a range of less well-defined and more discretionary actions, which risks introducing a greater degree of inconsistency and bias.

Decisions that individual clinicians may be inclined, encouraged, or forced to make in a contingency state include those pertaining to hospital admissions from the emergency department, ICU admissions from the hospital floor, interventions offered and recommendations made, code status discussion, choices among resources to conserve and how aggressively to conserve them, and more. Granting that the vast majority of clinicians operate with good intentions, data about ableist bias in medicine gives us reason to believe that persons with disabilities may be disadvantaged in these kinds of unavoidably subjective, bedside decisions.

For example, the National Council on Disability has found that misperceptions about the quality of life of people with disabilities have “negatively influenced physicians’ medical futility decisions and resulted in the withholding/withdrawal of necessary medical care from people with disabilities” (NCD 2019, 9). Similarly, Putman et al. report that “physicians were half as likely to recommend full medical treatment when the patient had severe cognitive deficits” and that they were much more likely to use DNR orders in patients with diminished cognitive function (2016; see also Chakraborty and Creaney 2006). What is more, research into the phenomenon of “diagnostic overshadowing” has “consistently demonstrated that the cognitive deficits displayed by an individual negatively impacted the ability of clinicians to make accurate judgments with regard to other co-occurring disorders” (Kanne 2013).

It is plausible to suppose that the pressures of a pre-crisis pandemic surge would only amplify these effects. In this context, disability discrimination risks going unnoticed, since it may stem from relatively subtle forms of individual bias and because the relevant decisions tend not to be strictly governed by publicly available institutional or state policies. Without oversight, it will prove difficult to gather data about how the range of care decisions made under contingency conditions impact those with ID. This is important; one study already published reveals higher case-fatality rates from COVID-19 of people with intellectual and developmental disabilities especially among younger adults, notes the paucity of data about this population, and suggests that one possible explanation for these differences may be comorbidities (Turk et al. 2020). The study does not explore the potential role of differences in contingency care.

QUALITY OF LIFE: OBJECTIONS AND ARGUMENT

The debates surrounding COVID-19 and disability have given rise to two distinct objections to incorporating of quality of life judgments in healthcare, which we will call the ‘practical objection’ and the ‘principled objection.’ According to the practical objection, quality of life judgments are objectionable insofar as they are inaccurate. One form of the practical objection holds that it is infeasible to conduct accurate quality of life assessments under crisis conditions. For example, in their widely-cited discussion of triage protocols, Emanuel et al. (2020) argue that “limited time and information during an emergency…counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.”

Another form of the practical objection appeals to the well-documented concern that quality of life judgments are fraught with ableist bias and often fail to account for the complexity of the relationship between disability and wellbeing (Peña-Guzmán and Reynolds 2019; Campbell and Stramondo 2017). Peña-Guzmán and Reynolds, for example, explore how physicians’ epistemic overconfidence rooted in ableism affects communication with patients with disabilities and judgments about quality of life, thus contributing to medical errors. The National Council on Disability reports that “providers often perceive people with disabilities to have a low quality of life when, in reality, most report a high quality of life and level of happiness” (NCD 2019). There is a particularly strong connection between clinicians’ perception of quality of life and “diminished cognition” (Putman et al. 2016). Moreover, discrimination against people with ID may be difficult to identify since “evaluative judgments about appropriate treatment based on subjective quality of life considerations are often framed as medical decisions” (NCD 2019).

The practical objection, then, holds that quality of life judgments are unreliable and risk introducing unnecessary subjectivity, inconsistency, and bias into medical practice. By contrast, the principled objection holds that quality of life judgments, even if feasible and reliable, are simply not ethically relevant to decisions about the allocation of healthcare. This argument has been based on the fundamental equality and dignity of persons: that all human life is valuable and worthy of protection. In a joint statement addressing various forms of bias in the response to COVID-19, Anderson et al. (2020) argue that

no…prioritization principles should be allowed to undermine a core conviction of our moral tradition, viz., that the lives of all human beings are of inherent, equal, and indeed incalculable value. We should eschew all invidious discrimination and recommit ourselves to treating all who are ill as bearers of profound, inherent, and equal worth and dignity.

Roger Severino, director of the Office of Civil Rights, echoed this point forcefully in a recent statement: “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism” (HHS OCR 2020).

The idea of equal and inherent worth of human beings is certainly a powerful one. Yet the principled objection may be seen as wishing away some of the most difficult problems in medical ethics. How are we to allocate transplantable organs if all human life is equally worthy of protection? How can we make sense of the idea that some life-sustaining treatments are inappropriate if life is inherently valuable? Why do we allow determinations of death by neurologic criteria if cognitive functioning is an illegitimate consideration? In the context of a pandemic, the principled objection risks ignoring the fact that practicing medicine can involve unavoidable zero-sum tradeoffs among patients, as well as judgments about what counts as beneficial treatment and a successful outcome.

One important question, then, is how to avoid discriminating against people with ID while recognizing that drawing certain distinctions between patients is necessary—and, indeed, appropriate, especially in pandemic medicine. Our suggestion sketched here is that implausible sanctity-of-life commitments can be avoided without introducing the problematic comparative quality of life judgments that so often unfairly disadvantage those with ID. The key lies in distinguishing the subjective grounding of quality of life judgments from judgments about the existence of life itself.

Judgments about a person’s quality of life are about the value of the life for the person—the person’s good—and are thus conditioned on subjectivity. That does not mean that the individual must make these judgments for herself, but it does mean that they must be rooted in some experiential life of the individual (Francis and Silvers 2007). Our view also does not take sides on whether quality of life judgments are themselves subjective or objective; all we assume here is that a necessary condition for quality of life judgments to be made about a person is that the person has at least minimal experiential life to serve as a basis for judgments about what is in that person’s interests or for that person’s good.[2] Experiential life, in turn, requires a minimal level of cognitive functioning that may be absent in patients with certain disorders of consciousness and the most severe forms of ID. Attributing a quality of life judgment to these patients, therefore, involves a kind of category mistake. Distinguishing between patients who are and are not the subjects of quality of life is importantly different than actual comparisons of quality of life, in that the distinction does not depend upon judgments about whether a given quality of life is acceptable or superior to another quality of life. Instead, the idea is that patients can be said to benefit from medical treatment only if they are capable of being subjects of quality of life at all. This view potentially aligns with the Society of Critical Care Medicine’s recommendations regarding medically inappropriate treatment, which notes that patients should have “sufficient cognitive ability to perceive the benefits of treatment” (Kon et al. 2016, 1771), at least if “perceive” is understood to mean “experience subjectively.”

Healthcare is for the person’s good. While in situations of non-scarcity, we might be willing to offer healthcare (and even pay for it) for reasons other than the person’s experiential good (such as the value of life per se or the wishes of the family), prioritizing a scare resource is arguably different. If so, there is an argument for distinguishing being the subject of a quality of life from being a life in cases involving the allocation of scarce medical resources.

LEGAL CONTEXT: ACCOMMODATIONS AND POLICY MODIFICATION

In the previous section, we argued that quality of life judgments unfairly disadvantage people with ID by negatively impacting the medical care they receive in a pandemic, irrespective of any decisions about triage and rationing. We then argued that the rejection of quality of life judgments does not entail that no justified distinctions can be drawn between patients, since some patients are simply not subjects of quality of life in the relevant sense for the allocation of scarce healthcare resources.

In this section, we explain a distinction between two different forms of discrimination against people with ID in the legal context that, we argue, is also critical to contingency care decisions in pandemic conditions. Legal challenges for people with ID in pandemic conditions may involve both accommodations for individual differences and modifications of living circumstances, state reimbursement policies, or medical treatment protocols. Understanding these challenges requires a basic distinction between individualized accommodations and more general policy modifications. This distinction between accommodations and modifications is ethically important, too. The former are tailored to individuals in ways that enable them, but may seem unfairly costly; the latter may be available to everyone but may require changes in policies or programs that are seen as unacceptable. Our argument here is that accommodations for individuals must be available within structures of policy modifications that are fair.

Under the Rehabilitation Act and the Americans with Disabilities Act, “accommodations” are individualized adjustments that allow qualified persons with disabilities to perform their jobs or enjoy meaningful access to public services or accommodations. Common examples of accommodations for people with ID include altered forms of communication, decision-making supports, job coaches, or adjustments in how therapy is delivered. “Modifications” are changes in policies or the built world. Modifications are not tailored to individuals; they potentially affect many people. Curb cuts and ramps are quintessential examples of modifications in the built environment. Examples of modifications that are particularly relevant to people with ID are the establishment of home- and community-based service programs, changes in Medicaid reimbursement levels, or the formation of a Special Olympics sports program. This difference—between individual accommodation and programmatic modification—is woven throughout disability anti-discrimination law and ethics.

Moreover, the choice of whether to address disability through accommodation or modification matters, both legally and ethically. Legally, accommodations must be requested by the individuals seeking them. Individuals must be qualified for the jobs or services they seek, with or without the accommodation. Accommodations must be reasonable; they are not required if they impose undue hardship on the employer or undue burdens on public accommodations. Accommodations are not required, for example, if providing them would jeopardize the safety of the employee or the public. Modifications may be required for public services if they are reasonable and for public accommodations if they do not require a fundamental alteration of what the accommodation offers.

The distinction between individualized accommodations and programmatic modifications has been confused by courts since the seminal case interpreting the Rehabilitation Act, Southeastern Community College v. Davis.[3]Davis was a hearing-impaired applicant for Southeastern’s nursing program. She requested accommodations in the form of adjustments in communication, such as instructors facing her so that she could lipread and the availability of sign interpretation when lip reading would not suffice, and she wanted the College to make only those program adjustments that would be needed for her with these accommodations. The College refused to consider her capabilities with these accommodations; instead, they did not consider offering accommodations and instead asserted that the only possibility for her was to modify the nursing program so that she could graduate without participating in the clinical portion of the program. The Supreme Court agreed with the College and construed Davis’s request for “affirmative” relief as “affirmative action” on behalf of someone who was unqualified, echoing the criticisms of affirmative action programs involving race or sex that were growing at the time Davis was decided.

In the next major decision interpreting the Rehabilitation Act, the Supreme Court compounded its error in Davis. Alexander v. Choate involved Tennessee’s decision to address financial shortfalls by cutting back the number of days in the hospital available annually on its Medicaid program.[4] The decision set forth an ethically important standard: states must provide people with disabilities “meaningful access” to public services. However, the Court determined that this standard had been met: the state provided meaningful access to the benefit it defined—fourteen days in the hospital. So, the Court reasoned, the state had not discriminated, even though people with disabilities might be disadvantaged by the limitation. In so reasoning, the Court viewed the petitioners as asking for an unreasonable accommodation in the form of “affirmative action” that would give each the full amount of healthcare they needed, even though other Medicaid recipients did not receive this privilege. But here, the Court confused accommodations with modifications. The Choate petitioners were not asking for individually tailored healthcare. Instead, the petitioners were asking for a modification in the structure of the Medicaid program so that the costs of austerity might be distributed more equitably.

The confusion matters ethically, too. Accommodations—as the analogy to affirmative action suggests—may be construed as special privileges and as unfair to those who do not receive them. Conversely, when accommodations are misconstrued as modifications, the result may be the judgment that people are asking for inappropriate fundamental alterations in programs, as Davis was misunderstood to be asking to graduate as a nurse without any clinical training. In the context of ID and COVID-19, disentangling accommodations from modifications will be critical to understanding whether what is needed is a readjustment of state programs or public accommodations in a manner that can be fair to people with ID (a modification) or an individualized adjustment (an accommodation) that might pose undue risks to the individual or to others.

ACCOMMODATIONS AND MODIFICATIONS: CONSIDERING THE COSTS

In order to continue to benefit from public services or to enjoy public accommodations on a basis equal to others, some people with ID will require individualized accommodations during COVID-19 .[5] These include accommodations for adaptive communication, support during treatment, and care management. Under the law, individuals are only entitled to accommodations that are reasonable. The legal question is whether an individual accommodation such as a support person during treatment would be an undue hardship, a defense that has principally been invoked because of increased costs or risks. The ethical question would be whether any increased costs or risks from in-person contacts would be ethically acceptable. Here, law and ethics are intertwined, with the question being whether what the law might regard as an “undue hardship” tracks what might be regarded as ethically appropriate reasons for refusing to undertake any increased costs or risks. In what follows, we begin by describing several likely forms of accommodations then provide responses to arguments that they may be unreasonable because of their costs or the risks they may pose to others. One ethical conclusion we draw is that increased costs should not be a basis for denying accommodations but that unreasonable risks to others may be—if the assessment of risks is unbiased and based on an individualized assessment. Another is that some program modifications may be required in light of the costs of accommodations and that the increased costs of these modifications should be considered as part of a fair allocation of the overall costs of COVID-19, rather than being seen as a fixed limit on the reasonableness of accommodations.

Many people with ID require adjusted forms of communication to increase their understanding. With COVID-19, it may be difficult for people with ID to understand the need for social distancing, hand-washing, or different routines. Communication adaptations may include simple language, repeated explanations, pictures or videos, or support persons to help interpret complex information. Some of these forms of adaptive communication, especially those requiring in-person support, may be more difficult if social distancing is required to prevent COVID-19 spread. Yet the failure to provide adaptive communication might leave people with ID not only unable to enjoy some of their frequent daily activities but also lonely and frightened. It may be possible to address some individual needs by increased and imaginative use of technologies that do not require in-person contact. Just as Zoom and WebEx have become common modes of telecommuting, so robots and video images may be designed to soothe, instruct, or entertain people with ID who must isolate for their protection or the protection of others.

More generally, the need for support persons may be different and greater during COVID-19. While social distancing is in effect, routines will be disrupted. Staying home rather than enjoying favorite outings, day-center activities, or vocational training will be difficult. People who are working may be laid off or unable to go to work because of increased health risks. Public transit—an often-necessary mode of transportation for people who cannot get driver’s licenses—may be disrupted or more dangerous to use because of risks of infection. All of these disruptions may alter and intensify personal support needs.

Support needs may also be intensified in order to protect people with ID from putting themselves or others at risk. People with ID may have difficulty recognizing or communicating symptoms. They may be at greater risk of infecting others who live with them if their illness remains undiagnosed. They may have difficulty understanding the need to wear masks or how to do so correctly. They may require support in handwashing or other modes of personal hygiene. As people with ID are unlikely to live alone, supports for them may be critical to reducing infection spread to others. These are all accommodations that may matter to the ways in which people with ID receive contingency care in pandemic conditions.

These accommodations will increase costs, and the question is whether these costs are reasonable or an undue hardship. Answering this question requires understanding some of the policy determinations that are currently in place. Individuals with ID likely receive many of these services under Medicaid “home and community-based services” (§1915) waiver programs designed to allow people to receive a variety of medical and non-medical services to allow them to live in their homes or communities rather than in institutions. For approval, these waiver programs must demonstrate cost-neutrality to the federal government. States may exclude individuals from their waiver programs if they are likely to have home- and community-based service expenditures that are higher than their costs in an institution. As a result—and also due to state fiscal constraints—these programs typically impose significant cost constraints, including long waiting lists, restrictive eligibility requirements, and service unit limitations.[6] As state revenues contract, and service needs expand, the impact of cost constraints may become more severe. Already limited by cost controls, waiver programs may simply not have the resources to expand supports to accommodate needs during COVID-19.

Ethically, we argue, the conclusion should be just the reverse; program modifications may be needed for reasons rooted in both non-comparative and comparative justice. Non-comparatively, the problem is whether individuals with ID will be able to meaningfully access benefits to which they are entitled without support. Here, meaningful access to healthcare is a good example. People who do not recognize COVID-19 symptoms—but who might do so with support—will not identify the need to access healthcare. People who cannot communicate their symptoms may go longer without care and be far sicker if and when they do access care. Without support, they also may have more difficulty in tolerating what is involved in care, especially in the unfamiliar setting of a hospital. Isolation is difficult for everyone, but even more distressing for people who lack full understanding of why it is needed. Absent support, therefore, it is arguable that in a number of ways people with ID may not have meaningful access to healthcare for COVID-19.

Comparatively, expenditures by the federal and state government are vastly expanding to meet many other needs related to COVID-19. If the supports required by people with ID are not increased at least in a manner that is fair, these individuals will be subject to comparative injustice. Yet, aid programs such as the CARES Act do not provide any increased funding for Medicaid—indeed, state Medicaid expenditures are specifically designated as ineligible for CARES Act funding (USDT 2020). From this comparison, however, it does not follow that everyone should get all of the supports that they need—that would be to confuse accommodations with modifications. Rather, there should be modifications in funding for programs such as §1915 waivers to ensure that they receive their fair share of resources. Further consideration might be directed towards how to allocate additional funds for support, including whether they should be prioritized to services that reduce disease spread or individual distress, or that attempt to improve meaningful access to care.

ACCOMMODATIONS AND MODIFICATIONS: CONSIDERING THE RISKS

Risks may differ from costs, however. Arguably, with risks the undue hardship analysis should be whether the risks are minimally acceptable rather than whether they are fairly allocated. Here, our claim is that fairness does matter, at least insofar as it would be unfair to accept risks for others that are not similarly accepted for contingency care of people with ID. Many groups of people may be affected by COVID-19 risks associated with people with ID: people with ID themselves, people with whom they live, support persons, other patients receiving care, and healthcare providers treating people with ID who become infected with COVID-19.

We have already discussed how accommodations such as communication aids actually may mitigate some risks to people with ID by identifying the need for treatment, enabling people with ID to engage in social distancing or take other precautions against disease spread. These accommodations may, however, increase risks because they involve increased contacts with support persons. These risks presented by increased needs for contacts with support persons can and should be mitigated in the same way that other risks from COVID-19 are mitigated for people who live in group homes or other congregate living settings. Mitigation measures may include individual accommodations such as allowing trusted family members to provide increased support. Accommodations might also include allowing individuals to receive services in their homes so that they can return home for the duration of the pandemic, reducing risks to themselves as well as other residents, who may benefit from facilities becoming less fully occupied.

Some of these accommodations may be facilitated by policy modifications such as allowing family members to receive increased pay as caregivers.[7] Reductions in waiting lists for home- and community-based services are also policy modifications that might reduce risks to people with ID living in nursing homes or other congregate settings. Even if only for the duration of the COVID-19 pandemic, these temporary reductions might allow more people to move out of larger care facilities and return to their families, if they wish to do so. Policies such as health checks and sick leave for caregivers should also be implemented to reduce risks both to themselves and to those for whom they provide care.

Some support workers may be more willing than others to take risks associated with caring for people with ID during the COVID-19 pandemic. Family support workers, for example, may be more willing to take risks for their loved ones. Some of the changes in policies for paying these workers mentioned above may help shift support work to those who voluntarily assume it, as may changes in sick leave, pay, or protections for care workers. These policy changes, while not eliminating risks, at least attempt to increase the likelihood that people who take the risks are not compelled by their own dire circumstances to do so. To the observation that these forms of risk-mitigation may increase costs, we would make the same point as made above: that as modifications these increased costs should not be viewed as unfair privileges but as part of overall fair distribution of the increased resources being devoted to alleviating impacts of the pandemic.

Perhaps the most difficult ethical problem about the ethics of risks involves the potential of increased risks to others in healthcare facilities, including other patients and healthcare personnel caring for people with ID who become ill with COVID-19. To lower risks to hospital personnel and patients, hospitals have implemented strict no-visitors policies with limited exceptions. However, because hospital care and isolation may be particularly disturbing for people with ID, some policies do make exceptions to allow support persons into the hospital. For example, the University of Utah’s “no visitors” policy contains one-visitor exceptions for patients with disruptive behavior, in which a family member is key to their care, and patients who have altered mental status or developmental delays (where caregiver provides safety/information) (University of Utah Health 2020). But such policies are not uniform; for example, Connecticut’s no-visitors guidance for hospitals reportedly does not have an explicit exception for persons with disabilities who live at home (Abrams 2020). To the extent that hospitals allow visitors for other persons, such as partners in childbirth or family members of patients near death, we would argue, it is unfair to fail to allow similar visitor policies for persons with ID who may have increased difficulty with hospital care.

Finally, persons with ID may have more intense care needs than others who become ill with COVID-19, including longer hospital stays and more intense nursing care. A particular concern for healthcare workers is that persons with ID may require more sedation to deal with the hospital environment and thus potentially have increased needs for intubation. Intubation is one of the riskiest procedures for healthcare workers. Here, we would argue that general principles regarding risky care should be applied, in the same way they are for people who do not have ID. One recent ethical framework recommends that when benefits to patients are minimal, risky procedures such as cardiopulmonary resuscitation may be withheld (Kramer, Lo, and Dickert 2020). This framework also cautions that estimations of patient benefit must be evidence-based and free from the kinds of bias that we detailed in the beginning sections of this article, such as importation of quality of life judgments. Applying this framework would lead to the conclusion that if the benefits of resuscitation would justify providing it for patients without ID, resuscitation should also be provided for patients with ID.

CONCLUSION

In this article, we have sought to address some of the less-discussed problems of justice involving people with ID confronted by COVID-19. We have argued that quality of life considerations should not come into play for persons who are capable of having subjectively based quality of life judgments made regarding them. For such persons with ID, even severe ID, any judgments must be evidence-based and free from bias. We have then argued that justice may require both individual accommodations and policy modifications to address the impacts of the COVID-19 pandemic in this population.

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[1] See Coaston (2020) for perspectives on the pandemic from people with ID.   

[2] This minimalist assumption is, we think, consistent with both hedonistic and at least some perfectionist accounts of the person’s good. Hedonistic accounts assume at least some capacity to experience pleasure, pain, or happiness. Perfectionism of the sort defended by Shea (2019) relies on an account of human flourishing that involves at least some elements of subjectivity, such as the ability to engage in relationships and experience social thriving.

[3] 442 U.S. 397 (1979).

[4] 469 U.S. 287 (1985).

[5] Beyond the distinction between accommodations and modifications, we set aside here many other complex questions about the structure of anti-discrimination law but note them briefly here for reference. The Rehabilitation Act prohibits discrimination on the basis of disability in federally funded programs or activities, 29 U.S.C. § 794; § 1557 of the Affordable Care Act explicitly incorporates this ground of prohibited discrimination in any federally funded health care. Under the Rehab Act, people with disabilities must have “meaningful access” to federally funded programs or activities for which they are qualified, Alexander v. Choate, 469 U.S. 287 (1985). Title II of the ADA, applying to public services, programs, or activities, provides that it is discrimination to exclude or deny benefits to any individual with disabilities meeting essential eligibility requirements with or without auxiliary aids or reasonable modifications to rules, policies, or practices, 42 U.S.C. §§ 12132, 12131(2). Title II does not explicitly state an undue hardship defense, although one has been incorporated into the understanding of what modifications are reasonable, e.g., National Federation of the Blind, Inc. v. Lamone, 2020 WL 618674 (D. Md. Feb. 10). Title III of the ADA, applying to public accommodations (which include medical facilities and social service establishments, 42 U.S.C. § 12181(7)(F), (K), prohibits discrimination “on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation,” 42 U.S.C. § 12182(a). Accommodations must be provided to individuals in the “most integrated setting” that is appropriate, 42 U.S.C. § 12182(b)(1)(B). Failures to make reasonable modifications are discriminatory, unless the modifications would be fundamental alterations of the nature of the goods, services, facilities, privileges, advantages, or accommodations, 42 U.S.C. §12182(b)(2)(A)(ii). Failures to provide auxiliary aids and services is discrimination, unless the aids or services would fundamentally alter the nature of the good, service, facility, privilege, advantage, or accommodation, or would be an undue burden, § 42 U.S.C. § 12182(b)(2)(A)(iii). The Title III regulations define “undue burden” as “significant difficulty or expense” and list as factors to be considered in this determination the nature and cost of the needed action, the overall financial resources of the site, and legitimate safety requirements among other factors, 28 C.F.R. § 36.104. These complex differences have been largely bypassed in court decisions applying the same standards under the Rehab Act, ADA Title II, and ADA Title III.

[6] See Ng et al. (2015) and Hakshi (2019).

[7] Family members can be paid caregivers, but with significant limits. For example, one recent report indicates that only twelve states permit legal guardians to be paid caregivers. This would preclude parents who have become legal guardians of their adult children with ID from being paid. See Sarmah-Hightower (2019).

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