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Excerpted From: George M. Powers, Lex Frieden and Vinh Nguyen, Disability, Access, and Other Considerations: A Title II Framework for a Pandemic Crisis Response (Covid-19), 14 Saint Louis University Journal of Health Law & Policy 345 (2021) (100 Footnotes) (Full Document)
A pandemic like COVID-19 creates situations where the needs of the patient population overwhelm the medical resources available. The United States (U.S.) government, like the governments of many other countries, has not been able to weather the challenge. Life and death decisions have had to be made because there were not enough ventilators to treat everyone. These situations raise a number of ethical, moral, and legal questions, answers to which have been unneeded for a century. For example, if three patients with the novel coronavirus need a ventilator to survive, and if there are only two ventilators available at a hospital, then who decides which two patients get a ventilator? How is that decision influenced if one of those patients has a disability?
A number of difficult decisions have had to be made during emergencies, and planning for these scenarios is a responsibility of health care providers and the government. This Article will explore how to create a “pandemic crisis response plan” that is consistent with Title II of the Americans with Disabilities Act (ADA).
COVID-19, and its impact on the global population, is unlike any crisis in modern history. Almost every nation is dealing with this virus. There are a number of social and economic consequences of this virus, and the most devastating may be the real cost of human life. Very few are lucky enough to not feel the direct impact of the medical emergencies created by the novel coronavirus. Essential and frontline workers face especially great risks.
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During pandemics, health care providers and government officials may have to decide how to allocate a limited amount of medical resources to a population that cannot be wholly served. Unfortunately, “state officials and hospitals are quietly preparing to make excruciating decisions about how they would ration lifesaving care.” Many states, and countless health systems, are putting in place “policies to determine which coronavirus patients would get ventilators if they run short-- essentially deciding whose lives to save first.” These horrific choices have had to be made both internationally and in the United States. Moreover, COVID-19 may cause other shortages of medical resources and equipment.
People with disabilities are generally perceived to have increased susceptibility to other health problems and underlying conditions that may require health care providers to use more effort, time, space, and scarce medical resources for treatment. These perceptions are reinforced by how most health care providers perceive people with disabilities in the first place. In short, doctors, nurses, and other health care providers operate under the “medical model” of disability. By virtue of their education, training, and experience, most health care professionals have deep-rooted perceptions that the quality of life for a person with a disability is lower than that of a person without a disability. The medical model produces an unhealthy view of disability as something that needs fixing, as opposed to a characteristic that is a part of a person's identity.
Many people with disabilities have previously experienced subpar and discriminatory treatment from health care providers, but discriminatory treatment in the midst of a pandemic can result in death. All of these factors, in addition to the pressures of a crisis, can create a discriminatory environment in which people with disabilities are denied care in favor of the welfare of those without disabilities.
Our Constitution, civil rights laws, and shared values do not support a purely utilitarian approach to any situation, much less a crisis. On the other hand, there are forces in every society that drive utilitarian values. For example, a number of international governments are suppressing data, information, and the press to propagandize the true impact of COVID-19. A healthy economy is an important factor that governments need to legitimately stay in power. Furthermore, there are economic forces to which health care systems will bend. In the United States, at least, the organization of nearly all health care providers parallels that of other businesses. These entities have economic incentives to underreport their failures and maximize their successes. On a more micro level, health care professionals are under too many psychological burdens and professional demands to make speedy decisions about the fair administration of limited resources. Without the proper application of our civil rights laws, other rules, and norms, we risk loss of control of the immediate COVID-19 crisis and much more for the future.
The Office for Civil Rights (OCR) within the U.S. Department of Health and Human Services released a bulletin that summarized the protections provided by our civil rights laws. Roger Severino, the Director of OCR, said, “Persons with disabilities, with limited English skills, or needing religious accommodations should not be put at the end of the line for health services during emergencies.” His statement signifies the necessity of enforcing our civil rights laws during this pandemic.
People with disabilities, like other marginalized groups, have legitimate concerns and fears about not receiving equitable health care during the COVID-19 pandemic. History and past experiences have given form to these fears, and they can become a reality without proper safeguards.
The unfortunate story of one patient in particular exemplifies the resulting cruelty of this perfect storm. Mr. Michael Hickson was a middle-aged father of five with quadriplegia, a brain injury, and vision loss. Mr. Hickson initially became disabled in 2017 after he went into sudden cardiac arrest. Mr. Hickson was assigned a legal guardian due to the accident that caused his disability, and after his wife objected to his institutionalization in a nursing facility. Mrs. Hickson instead wished for rehabilitative services for her husband. Tragically, Mr. Hickson became ill at his assigned nursing facility with the SARS-CoV-2 virus, which causes COVID-19, and was taken to the hospital's intensive care unit (ICU). Against his wife's wishes, who was not his legal guardian, Michael Hickson was denied medical treatment. Mrs. Hickson recorded a conversation with the treating doctor in which the doctor stated that medical care would be withheld because of Mr. Hickson's “quality of life.”
The decision not to treat was ultimately made by Mr. Hickson's legal guardian, the medical professionals, and the probate court. The hospital later argued that ventilating Mr. Hickson would have been futile and that it was making the “humane” decision by denying care. Mr. Hickson's sister, a fellow at George Washington University Hospital, agreed with the decision to withhold intubation and other medical care. His sister's opinion at least demonstrates how influential the medical model can be for providing care to a person with a disability. Two of his closest family members reached polar opposite conclusions about his lifesaving medical care.
Any perspective on the decision to withhold medical treatment has moral implications that go far beyond the scope of this Article. In relation to disability rights however, it is very significant that Mr. Hickson's “quality of life” was a factor in the treating doctor's decision. The conversation was recorded by Mrs. Hickson, even though the hospital officials later clarified that they withheld treatment because Mr. Hickson would not survive it.
The inconsistency and controversy inherent in Mr. Hickson's story can be partially illuminated by the medical model's influence on the medical professionals that made the ultimate decision. This bias can apply to Mr. Hickson's sister as well. The medical professionals ultimately believed that they had the authority to make a decision about how a person's disability impacted that person's quality of life. As a person with a disability, I have no doubt that my disability affects my quality of life. That impact, however, is very complex and should not be a consideration in whether or not I receive lifesaving medical treatment. The expectation is that those kinds of medical decisions are based on objective medical evidence. How a person's disability impacts his or her quality of life is far too personal, subjective, and complicated to be made by medical professionals, especially when those professionals are under the pressures of emergency situations. It is all of the three authors' opinion that the very nature of how a disability impacts a person's quality of life precludes it from a medical professional's consideration. Even though it may not be apparent, these kinds of considerations violate civil rights laws like the ADA.
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It is a bizarre reality in which we find ourselves now. There are many uncertainties, fears, and anxieties that are looming as we face this pandemic. History has taught us that crises create environments where repressive governments rise. The worse the emergency, the worse the government and the atrocities it can commit. We have to remember that civil rights laws are one of the many institutional protections we have in place to prevent the rise of such oppressive governments, and disregarding or ignoring these laws during emergencies only fosters the harmful ingredients necessary for such regimes. Ingredients such as high poverty and unemployment rates, victimization or perceived victimization of minority populations, and the distortion of truth can increase the influence of repressive regimes. The denial of health care based on disability is a small and complex ingredient, making its occurrence more likely.
Those with disabilities experience disparities in receiving equitable health care generally. Emergencies, like the COVID-19 pandemic, amplify these disparities, and create scenarios where discriminatory decisions can thrive.
Finally, the ADA is just one civil rights law. It is the authors' intent that this Article be used to understand the duty that state governments owe to individuals with disabilities during an emergency situation like a pandemic. The state's traditional role of overseeing medical practice, the inadequacy of other decision makers, the need for uniformity, the inherent discriminatory nature of the medical field, and a number of other reasons point to the state's duty to create an inclusive pandemic crisis response plan. In planning for how to allocate limited resources during such emergencies, the principals of the ADA must be observed. Rationing plans cannot have elements where assumptions, biases, and misinformation are part of the equation.
George Powers is a legal specialist at the Southwest ADA Center at TIRR Memorial Hermann.
Lex Frieden is a professor of biomedical informatics and rehabilitation at The University of Texas Health Science Center at Houston and director of the ILRU program at TIRR Memorial Hermann.
Vinh Nguyen is director of the Southwest ADA Center at TIRR Memorial Hermann.Excerpted From: Amanda M. Caleb and Stacy Gallin, Policies of Exclusion: the Impact of Covid-19 on People with Disabilities, 14 Saint Louis University Journal of Health Law & Policy 321 (2021) (167 Footnotes) (Full Document)
Title: Policies of Exclusion: the Impact of Covid-19 on People with Disabilities
Author: Amanda M. Caleb and Stacy Gallin
“The Government should acknowledge persons with disabilities in the same time as they include others. They will go right past us, and leave us out if we don't speak out.” These words, spoken by Susan, a deafblind woman living in Massachusetts, encapsulate the feelings of many people with disabilities (PwDs): a sense of exclusion has been exacerbated by the COVID-19 pandemic and related policies, which, while intended to protect the health of the population, have led to the further marginalization of PwDs. For the approximately 61.4 million adults (25.7% of the population) in the United States who report a disability, COVID-19 has further exposed the systemic inequities they face; these include unmet health care needs due to cost (31.4% of PwDs, ages 18-34), lack of internet access (54%, compared to 85% of all U.S. adults), and inadequate transportation (34%, compared to 16% of all U.S. adults). Early research from the United States and the United Kingdom suggests that people with intellectual disabilities are dying from COVID-19 at rates between three and six times higher than people without intellectual disabilities.
The health outcomes related to these statistics are not, in fact, products of individual bodies (impairments) but rather of social, cultural, and political models that have historically marginalized PwDs and created the notion of disability as oppositional to normal, a statistical average of what people should be able to do. Understanding disability as a product of historical, cultural, and political discourses (i.e., systems designed to contain and control individuals as part of the body politic) complicates both the reporting about disability and our response to disability, moving it away from an individual-only issue to an issue of structural injustice. The dividing practices embedded in disability--how a PwD becomes a disabled person, linguistically, medically, and politically--is an example of Foucault's biopower, the means by which a state controls the national body by regulating the individual body. Framed within neoliberalism, disability becomes that which has decreased value because of its decreased usefulness--its dis-ability.
Biopower during a pandemic is even more pronounced, particularly for PwDs who experience increased levels of control via restrictions that may impact their health and mental wellbeing. Pandemic responses are about regulating bodies--both “sick” and “healthy” ones--in an effort to reduce disease transmission. Quarantine and isolation strategies, social distancing policies, and shelter-in-place mandates all serve to control the movement of bodies and the movement of disease itself. None of this is bad from a public health standpoint; however, the balance of pandemic biopower is delicate, as the very nature of these policies is built upon modes of difference (i.e. sick vs. healthy). Acts of control that are informed by a neoliberal sentiment of value and product(ivity) are often implied in decisions such as the allocation of scarce resources and vaccination distribution--risk the further marginalization and subsequent health of PwDs.
For those in minoritized communities, the failings we are witnessing are merely a case study of the exacerbation of a broken system for which equity and justice do not apply to all people. Particularly for PwDs, the national response to COVID-19 has proven to be a continuation of our country's tendency towards structural ableism, both in practice and policy. The bioethical foundations of autonomy, beneficence, nonmaleficence, and justice have continuously been violated with respect to the care of people with disabilities, thus creating an environment of distrust of the medical profession. In non-pandemic times, “our country has forced sterilizations of people with mental illnesses and developmental disabilities, exploited institutionalized persons with disabilities for research, and instituted routine use of prenatal genetic testing that raises concerns about devaluing and increasing hostility towards disabled people--to name a few.” Data on the treatment of PwDs during crises such as 9/11, the H1N1 pandemic, and Hurricane Katrina are limited, yet one glaring finding from these emergencies that has been highlighted by the media is the failure to properly care for and evacuate those with disabilities, leaving them to suffer and die in favor of saving the able-bodied. This history of medical mistreatment and abuse of PwDs calls into question the standards of care, policies, and practice being utilized as the world struggles to deal with COVID-19.
COVID-19 has exacerbated the already numerous challenges facing PwDs in health care. Just as it has for other minoritized groups, the pandemic has highlighted systemic discrimination and inequalities confronting those with disabilities. The current strain on the global health system is unprecedented in modern times, thus making it incredibly difficult to mandate any type of immediate reforms to a system that was already in need of repair before the pandemic hit. However, strides made in disability studies and bioethics should not be ignored in favor of “catastrophe ethics” invoked in times of crisis. As argued by multiple scholars in a recent Hastings Center Report article, “there is a moral duty to shine a light on structural disability bias that may distort how crisis standards of care are put into practice.” Therefore, it is necessary to examine these public health policies and standards of care policies and how they are being practically applied to ensure that the rights of PwDs are being protected and to take action if and when improvement is needed.
This Article analyzes how health policies implemented during the COVID-19 pandemic act within a biopower that further marginalizes PwDs. Divided into four sections, this Article first discusses public health policies that were implemented during the pandemic that, while intending to be inclusive, were modes of exclusion of PwDs, through social distancing guidelines and the use of remote health care. Second, this Article analyzes diagnostic care in light of triage policies for the scarce allocation of resources and the harm of such policies on PwDs. Third, this Article considers the concept of social utility as it applies to early vaccine prioritization and the ramifications for PwDs. Lastly, this Article offers recommendations for changes in policy and practice that allow for better accessibility and inclusion.
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Rather than viewing COVID-19 as a once-in-a-lifetime pandemic for which global health systems could not adequately prepare, we need to understand it in light of systemic inequalities that have exacerbated the health impacts on marginalized groups, especially PwDs. It is important that we do not allow a crisis situation to be an excuse to further marginalize a group by neglecting their moral and legal rights to fair treatment and care. As the one-year anniversary of the discovery of the coronavirus approaches, society has begun to acknowledge the unjust, unethical, and ineffective methods that have been haphazardly put into effect to deal with this crisis and the effect these policies have had on the disabled community. The challenge we now face is to remedy these policies of exclusion.
Amanda M. Caleb is Professor and Director of Medical and Health Humanities and Professor of English at Misericordia University..
Stacy Gallin is the Founder and Director of the Maimonides Institute for Medicine, Ethics, and the Holocaust. She is currently a Visiting Assistant Professor of Medicine, Biomedical Ethics and Humanities Program at New York Medical College.
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