Ableism and COVID-19 Vaccine Distribution
Ableism and COVID-19 Vaccine Distribution
Ableism in COVID-19: Insight into medical injustices suffered by people with intellectual or developmental disabilities during the COVID-19 pandemic
By Alana DeVirgilio
This research paper explores the implications of ableism in the medical field, specifically within the COVID-19 pandemic. Through researching the effects of ableist misconceptions, lack of access to resources for people with disabilities, and the effects of vaccine priority placement of people with IDD, I have identified consequences of ableism in medicine on patients with intellectual or developmental disabilities, their families, and the disabled community at large. This paper will focus on specific disparities within the COVID-19 pandemic in order to provide clarity on the injustices in the medical field overall. Utilizing key ethical concepts, such as the value of safety, deontology, and evaluating autonomy, this paper will investigate the effects of ableism within the medical field.
Table of Contents
- Background on COVID-19 and Vaccine Development
- History of Ableism in Medicine
- Injustices in COVID-19 Pandemic
- Courses of Action
The implications of the COVID-19 pandemic for people with intellectual or developmental disabilities (IDD) are widespread and dangerous. Through numerous medical protocols, such as allocation of resources, triage, and vaccine allocation, many people with disabilities in the United States have faced hardships and distress throughout the pandemic. Though people with IDD are more vulnerable to severe COVID-19 and its effects when compared with the general population, they have not been prioritized in many instances of medical care. In this essay, the ethics of this injustice will be explored under multiple ethical lenses, and alternative courses of action for providing accessibility and equitable care for this community will be discussed.
The rapid spread of the illness COVID-19 has had a dramatic impact on the world, and cases in many countries have risen to pandemic proportions. While COVID-19 has shut down entire cities, scientists have worked to develop a vaccine to return life to a new normal. With vaccines now available, the questions of how vaccines will be distributed and who will be prioritized have been on the minds of many. Among those anxiously awaiting the end of the pandemic are disabled communities, specifically those with intellectual or developmental disabilities (IDD), but unfortunately, they could be subject to a longer wait.
IDD, defined by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, are “disorders that are usually present at birth and that negatively affect the trajectory of the individual’s physical, intellectual, and/or emotional development.” These disabilities can impact the severity of suffering as a result of the virus and the treatment of patients with IDD. For example, these patients are 5.9x more likely to die from COVID-19 when compared with the general population (Henderson). Despite this, many states, including California, have not prioritized this vulnerable group in the creation of COVID-19 vaccination priority lists.
Though the Centers for Disease Control (CDC) has a recommended protocol for determining vaccine priority in which people with IDD are listed as high priority (and above their non-disabled fellow citizens of the same age), as versions of a priority list for the allocation of the COVID-19 vaccine within individual states have been developed, those considered non-essential and have a disability (or disabilities) have been seen listed as of lower priority than those who are not disabled and of the same age, if listed explicitly at all. Whether implicit or explicit, this disparity highlights the injustices suffered by the disabled community during the COVID-19 pandemic and in the medical field as a whole.
Allocation of ventilators, vaccines, and other necessary but scarce resources has negatively impacted and discriminated against those with disabilities. In this essay, the ethics of the crisis at hand will be discussed, and the extent to which disabled communities, specifically those with IDD, suffer from these medical injustices will be explored. There is an overall breach of justice and responsibility by the medical field as a whole in considering the lack of prioritization of disabled communities that can be seen throughout the COVID-19 pandemic. States must take an equitable approach when it comes to determining vaccine priority lists, being sure to consider all implications they may have. Because current vaccine and resource allocation procedures are known to have negative implications on those with IDD, promote ableism within the COVID-19 pandemic, and are not the most ethical practice for this situation, improvements must be made to these allocation procedures. Specific acknowledgements of people with IDD must be included in medical protocols and procedures, especially COVID-19 vaccine allocation priority lists, accessibility to all steps of receiving a vaccine (scheduling, transportation, communication) must be increased and valued for all people with IDD, and people with IDD must be listed as high priority for receiving the vaccine due to their vulnerability to severe COVID-19 (Swenor).
Background Information on COVID-19 and Vaccine Development
COVID-19, the illness caused by the coronavirus SARS-CoV-2 has demonstrated that it is not a sickness to be taken lightly, and its ability to spread quickly has led to the resulting pandemic. Common symptoms of COVID-19 include fever, chills, and coughing, in addition to a loss of taste and smell and conjunctivitis (Ozturker). These symptoms can worsen and lead to further medical issues, and the COVID-19 illness has been shown to lead to long-term effects as well. These long-term complications resulting from COVID-19 include depression or anxiety, multisystem inflammatory syndrome, and autoimmune conditions (CDC). It is still unknown how long some of these symptoms and complications may last.
The most common way the virus is spread is through saliva droplets expelled from the nose or mouth. These droplets, once inhaled into the lungs, allow for the SARS-CoV-2 virus to develop into COVID-19. Since the cause of spread had been determined, medical masks have been recommended nationwide and mandated in many states to slow the spread of the sickness throughout the pandemic. Wearing masks in public and whenever possible has continued to be highly recommended by organizations such as the CDC and the World Health Organization. Other Centers for Disease Control and Prevention (CDC) recommended safety measures aimed at slowing the spread of the virus include social distancing, or keeping at least six feet apart whenever with someone who does not live in your household. As of May 14, 2021, 25 states and the District of Columbia have statewide mask mandates, while 25 states have allowed previous mask mandates to expire (Markowitz).
Since the start of the pandemic, scientists have been working tirelessly to develop an effective vaccine. The produced vaccines have successfully passed through clinical trials and are now available for distribution. These vaccines are a newer form of vaccine that has never been used to the extent that can now be seen in this pandemic: mRNA vaccines. These mRNA COVID-19 vaccines provide instructions on creating SARS-CoV-2 spike proteins to immune cells, allowing the cells to recognize the protein as SARS-CoV-2 and create antibodies.
Companies such as Moderna, Pfizer, and Johnson & Johnson have completed clinical trials and released their respective vaccines for public distribution, although these vaccines have restrictions. Moderna and Johnson & Johnson are recommended for those aged 18+, while Pfizer may be administered to those aged 12+ as of May 10, 2021. Clinical trials for the Moderna and Pfizer vaccines have shown to have a 94%-95% efficacy rate in reducing the risk of severe COVID-19, while the Johnson & Johnson vaccine has proven 66.3% effective.
The recent release and distribution of COVID-19 vaccines has led many to turn their attention to the question of how it will be distributed. Organizations such as the CDC have answered this question by looking at what groups are disproportionately affected by COVID-19. These groups include people with a higher risk of contracting COVID-19 due to a medical condition or place of living, such as people with IDD. The groups at the highest risks are recommended to receive the vaccine first, as an effort to reduce the numbers of cases of COVID-19, hospitalizations due to COVID-19, and deaths due to COVID-19. Among groups disproportionately affected by the pandemic are disabled communities, specifically among people with IDD (Swenor). Though other groups, such as those over the age of 65 and racial and ethnic minority groups, have also been disproportionately affected by the COVID-19 pandemic, this research focuses on the injustices within the treatment of people with IDD.
These disorders can impact a person’s physical and intellectual/emotional development. Because of this, many patients with IDD have suffered more intensely from COVID-19 than those without a disability. They are more likely to have conditions that worsen the effects of COVID-19, leading to more significant hospitalizations and deaths. This disparity must be taken into account when determining COVID-19 protocols and procedures to best protect this vulnerable group. Unfortunately, not all states within the U.S. are providing for these disparities.
History of Ableism in Medicine
The inequitable medical care of those with IDD during the COVID-19 pandemic is not a new concept. The unjust treatment of those with disabilities has long existed within the medical field, and the repercussions of such treatment are only exemplified with the recent pandemic conditions. These issues have been particularly emphasized through the use of triage protocols, such as the use of measures like the Quality Adjusted Life Year (QALY) and Sequential Organ Failure Assessment (SOFA) score. However, they are not limited to these protocols and measures. Assumptions regarding social utility, quality of life, and patient health can negatively impact the trajectory of a disabled patient’s well-being, therefore preventing them from acquiring the treatment needed.
General Resource Allocation
Allocation of resources has become a prominent issue as the COVID-19 pandemic has progressed. Along with vaccines, ventilators and life-sustaining medical treatment have increased in demand as hospitalizations have risen. Triage is classically defined as the process of determining treatment received based on urgency when there is a large number of patients who need said treatment. This process alone can be impacted by negative ableist assumptions, or preconceived beliefs that people who do not have a disability should be prioritized and valued in all aspects of life. Further issues can be seen with a closer inspection of protocols used within triage decisions.
The SOFA score takes into account multiple bodily systems and functions, such as respiration and coagulation. The function of each system is scaled and compared in order to determine a patient’s SOFA score, where a higher score indicates decreasing organ function.
The Quality Adjusted Life Year, or QALY, is a measurement that helps to predict the longevity and quality of a patient’s life after medical treatment. Using the Health-Related Quality of Life (HRQL), it takes into account factors such as mobility, pain/discomfort, self-care, anxiety/depression, and usual activities to determine to compare the effectiveness of a new treatment, compare health benefits of treatments for different conditions, and determine the cost-effectiveness of treatment. Comparing the longevity of life within a one-year frame and the utility during that year, a QALY score of 0 to 1 is determined.
In order to make an informed and accurate decision regarding a QALY and a patient’s quality of life, it is vital for the doctor to have an accurate conceptualization of the patient’s everyday life and feelings. In a society where ableist assumptions are common, a doctor or caregiver may assume that disabled patients live a lower quality of life than a person without a disability. For example, a doctor may compare a disabled patient’s life to his personal prototype of what a fulfilled and so-called “normal” life looks like. When comparing his conception of quality life with the life of a patient with a disability, the two situations may appear drastically different. If the way in which the doctor compares these two lives places the stereotypical life of a person without a disability as the norm, the IDD patient’s life seems to lack quality. Therefore, a patient with IDD may receive a lower QALY score due to the assumptions and stereotypes of a doctor.
These perceptions can have severe impacts on determining QALYs in addition to having negative impacts on the communication between patient and doctor. In addition to possibly having a direct impact on a patient’s treatment and health, this also poses a threat to patient autonomy and can impose paternalism. Autonomy, defined as a state of self-governance, is a necessary consideration in ethical decision-making, as are paternalistic (an authority figure imposing a condition or making a decision for a subordinate figure in the subordinate’s perceived best interest) concerns. A patient with IDD’s voice is taken away when a medical professional makes a false assumption, therefore preventing them from having a say in their medical treatment.
Ableist Perceptions of Patients with IDD
A medical professional may also have an askew judgment of a patient with IDD’s social utility, another factor that can impact their treatment. Social utility is defined as the perceived interpersonal benefits of a product or service. Similar to the misconception about a disabled person’s quality of life, it is also possible that the perceived social utility of a disabled person has limited them from achieving the treatment needed. If a medical professional makes an assumption about a person with IDD’s social utility, it can negatively affect how they are treated and what treatment they may receive. Because this is a factor that is considered when determining QALYs, a measure in triage, a lower perceived social utility may decrease the chances of a patient getting the treatment they need solely because of this damaging misconception. Once again, this threatens patient autonomy and places a direct danger to patent health. A patient with IDD’s autonomy over their medical care may be diminished if decisions are made for them or assumptions are made about them, therefore impacting their medical treatment. Patient-doctor communication is necessary in situations where it may be more challenging to have a direct conversation with a patient to limit the threat of paternalism, and additional efforts must be made to fully understand a patient with IDD’s quality of life and health.
Overall communication concerns have direct and severe implications on the treatment of these patients. Combinations of lack of acknowledgment of people with IDD (as emphasized in the COVID-19 pandemic) and lack of knowledge of the lives of those with IDD have proven detrimental to the care and treatment IDD patients receive. Lack of data on the impacts that certain illnesses, such as COVID-19, can have on disabled communities also creates areas of uncertainty and confusion, neither of which benefit those with IDD in any way. Although one out of four Americans has a diagnosed disability, disabled communities have not been researched nor acknowledged enough to provide information on some healthcare disparities (Okoro). This lack of information leads to unjustifiable diagnoses of those with IDD. In addition, when disabled communities are entirely left out of policies or procedures (such as vaccine allocation), greater confusion and miscommunication leads to further suffering of those with IDD and presents them with unclear information about what their health may come to in the future.
Resource Allocation and IDD
In addition to misconceptions about the quality of life of disabled patients, other issues arise within the allocation of resources to disabled communities. Multiple methods are used to allocate a scarce resource when there is high demand. Methods of distribution can be impacted by age, medical conditions, or usage of the SOFA score. The SOFA score, or Sequential Organ Failure Assessment, evaluates the respiratory, cardiovascular, hepatic, coagulation, renal, and neurological systems on a scale of 0 to 4 to assess the mortality risk with regard to these systems. A higher score indicates decreasing organ function. While this may not be applicable when discussing COVID-19 vaccine distribution, it is still an important and relevant way that distribution of items such as ventilators is determined, and an area that patients with IDD have been disproportionately affected.
A patient with IDD’s SOFA score may be impacted by what is considered the “baseline” for their evaluation. Due to pre-existing conditions resulting from IDD, these patients may not have the same degree of communication or motion that a patient without IDD does. For example, points may be added to a SOFA score if the patient is unable to talk, but this may be a result of IDD, not the condition being evaluated. Nonetheless, it negatively affects the SOFA score of a patient with IDD, therefore automatically placing them at a disadvantage. In order to compensate for such situations, modifications must be made to SOFA score calculations, as well as the calculations of other triage factors, as an effort to counteract these disadvantages. Though some groups, such as Human Rights Watch and the United Nations have provided guidance on how to avoid the discrimination against people with disabilities in the medical field, this protection cannot be ensured.
Injustices in COVID-19 Pandemic
The COVID-19 pandemic has worsened many of the disparities that people with IDD suffer from. From direct impacts to implicit discrimination, life has become increasingly difficult for those with disabilities. Access, education, and provision of information have all been impacted by decisions made and procedures drafted throughout the pandemic. Regarding the deterioration of conditions for disabled communities, Bonnielin Swenor states:
“ . . . equitable access to health care, is a long-standing barrier worsened by COVID-19. This ranges from getting a coronavirus test to being seen in an emergency room. For instance, drive-up testing may be impossible if you rely on state mobility services. There are also existing barriers in health care settings that are exacerbated as the industry aims to meet the surge of COVID-19 cases. For example, the use of personal protective equipment, including masks, can make communication more difficult for patients with hearing loss.”Bonnielin Swenor, Director of the Johns Hopkins University Disability Health Research Center
One of the most noticeable disparities among communities in the COVID-19 pandemic is the cases, hospitalizations, and death rates of groups. Compared to the general public, patients with IDD are 2.5x more likely to contract the virus in the first place. This number only increases regarding hospitalization rates, as those with IDD are 2.7x more likely to be admitted to the hospital due to complications from the illness. Lastly, people with IDD are 5.9x more likely to die from COVID-19 when compared with the general population (Henderson).
From the start of the pandemic in March of 2020, access to specific resources has consistently been an issue. From a shortage of masks in the early months to scarcity of ventilators in hospitals to a lack of medical workers themselves, there has always been a resource deficiency. While the lack of these specific resources has impacted many, the loss of access to more general resources has had a detrimental effect on those with IDD. Many fear that healthcare providers and facilities have disproportionately not provided adequate treatment for patients without disabilities. For example, when hospitals have less room available, the most vulnerable groups (IDD) would fall most at risk for death due to not being prioritized for the hospitalization of patients with COVID-19 (Center, Swenor). Getting to a healthcare facility also requires transportation, a resource that a person with IDD may not be able to provide for themselves or afford. Lack of such transportation can even have far-reaching effects outside of healthcare, such as impacts on their access to work.
Lack of educational and technological resources can also create destructive effects for those with IDD. For example, before anyone can receive a COVID-19 vaccine, they must register (usually online). Because those with disabilities could have a more difficult time using this technology, this automatically places them at a disadvantage for receiving the vaccine. They may require a caretaker who would need to assist them, meaning the responsibility for their safety is placed in another’s hands. In a world where the autonomy of members of the IDD community may already be diminished, it is crucial that patient autonomy is valued and that necessary medical resources are accessible and ensured.
Safety measures themselves may not be accessible for all, including those with IDD. If a member of the IDD community lives in a group care facility or living with a caretaker, recommended safety measures, such as social distancing, may not be possible. If social distancing is not possible, how can both the patient and the caretaker be protected? A member of the IDD community in this situation might also not have access to safe, social-distanced transportation, something that could prevent them from getting the medical care they need.
A clear example of an area of the COVID-19 pandemic where disabled communities are disproportionately affected is within the allocation of resources. At healthcare facilities, resources such as ventilators may not be provided to those with IDD based on either ableist mentalities or the assumptions discussed earlier. If disabled communities are assumed to have a lower quality of life, they may not be given the medical attention or resources needed. Due to the misconception that members of the disabled community are assumed to have a lower quality of life, there may be instances where measures, such as a QALY, are impacted by this assumption. Suppose QALY scores are estimated to be lower due to lack of communication between patient and doctor and the assumption of a medical worker that a disabled patient has a lower quality of life. In that case, they might not gain the medical attention/resources they require.
Perhaps the most vital resource in the COVID-19 pandemic is the COVID-19 vaccine. In order to provide access to all in an organized manner, priority lists were created dictating who will receive it first. Though the CDC has a recommended course of action for states to follow when determining vaccine priority, states are not required to use the recommended procedures. The Advisory Committee of Immunization Practices (ACIP) advises that front line healthcare workers and those working in long-term care facilities should be provided with the first vaccinations (phase 1a), with essential frontline workers (not healthcare) and people over the age of 75 following in the next group (phase 1b). The next group (phase 1c) would include “persons aged 65–74 years, persons aged 16–64 years with medical conditions that increase the risk for severe COVID-19, and essential workers not previously included in Phase 1a or 1b”. Phase 2 would include all others over the age of 16 (CDC). An area of confusion that has arisen out of the language used by the CDC in COVID-19 vaccine allocation recommendations is whether or not people with IDD are included in those with “medical conditions that increase the risk for severe COVID-19”. This term is very general, as such medical conditions can range from asthma to Down Syndrome. Though it may apply to some people with IDD, this vague and indirect language implicitly affects those with IDD as it does not provide clarity to this community. In addition, it could even exclude some people with IDD. For example, if a person with IDD is at a higher risk for COVID-19, not because of a medical concern but due to their place of living (homeless, prison), they will not receive the vaccine at this stage of allocation.
As for priority variation among states, California serves as an example of a state that strayed from recommended CDC protocols. Because states have the liberty to determine their vaccine allocation procedures, vaccine distribution priority lists vary from state to state. California has recently decided to base its vaccine priority list on age as the sole factor (after distributing to frontline healthcare workers). This liberty allows states to choose where they will rank the priority of certain groups, including disabled communities. On February 3, a group of influential California health experts announced they have decided to continue using age as the primary criteria for determining who receives priority for the COVID-19 vaccine. This means that Californians with disabilities or chronic conditions would receive the vaccine after those over the age of 65 have been vaccinated. This decision came after California, in an effort to speed up the vaccine rollout, decided in mid-January to prioritize those aged 65+. This decision was made due to overcrowded hospitals and ICUs, but healthcare workers and those living in long-term care facilities still remained the top priority for receiving the vaccine. This decision upset many people because they felt that those with disabilities and chronic conditions should be vaccinated alongside those aged 65 and older, not behind them.
Disabled communities have been listed as a lower priority than abled, non-essential workers of the same age, if listed explicitly at all on some state’s vaccine priority lists. This means that those with disabilities would receive a COVID-19 vaccine after non-disabled, non-essential workers of the same age have been vaccinated. The location of disabled communities on priority lists raises the issue of explicit discrimination, while the total omittance of disabled communities creates implicit discrimination. This is of the most unethical injustices that we have seen the IDD community suffer through as a result of the pandemic, precisely because it deals literally with the value of life. In states such as California, we have seen the IDD community labeled explicitly as a lower priority than non-essential workers of the same age.
The lack of language in vaccine priority lists that specifically addresses people with IDD implicitly discriminates against those with IDD. In addition, explicit discrimination can be exemplified by the direct placement of people with IDD as “lower priority” than non-disabled people of the same age. Regarding implicit discrimination, without a clear outline of when they might receive a vaccine, for example, many questions arise. Some members of the IDD community may fear they will receive an inequitable share of the vaccine or not receive the vaccine at all. While it may be assumed that those with IDD may be included in groups such as “presence of comorbid conditions,” not all of those with IDD may fall under this category. For example, a patient with IDD may not have “comorbid conditions” but may be at higher risk for COVID-19 complications for different reasons (such as living with a caretaker/living without specific resources).
The issue of equitable vaccine allocation and the COVID-19 pandemic is widespread and impacts many. Most directly impacted, perhaps, are patients being treated during the COVID-19 pandemic and those awaiting a vaccine for the virus. These patients, including people with IDD, place the responsibility for their health in the medical field with every doctor’s appointment, vaccine dosage, and medical consultation. The families of patients with IDD also play a role in and are affected by decisions made regarding people with IDD. What happens to their family members also creates change in their lives, as they may be responsible for the person with IDD’s care. Of course, this also involves the stakeholder of those working in the medical field. Doctors and medical scientists have increasingly become accountable for the actions taken to protect all patients. In addition, more attention has been drawn to the medical community over the past year, scrutinizing every decision made. Working in conjunction with the medical field is the government. The government and subsequent organizations, such as the CDC, are responsible for establishing a basis for protocols, like vaccine allocation priority lists. Though it is known that states are not required to adopt CDC recommendations, for example, such federal agencies create a foundation and set an example for state governments to follow.
In consideration of determining priority for allocation of resources, many factors and perspectives must be considered. Stakeholders such as patients with IDD and their families will be directly impacted by the decisions of medical professionals and caretakers. The responsibility of doctors to protect the well-being of all patients (especially those most vulnerable) plays a significant role in decisions regarding priority and allocation of resources. In both the COVID-19 pandemic and within the issue of unjust medical treatment of those with IDD, responsibility plays a huge role in determining safety regulations, allocation procedures, and any attempt to maintain public health and safety. There is a responsibility to the IDD community, among other vulnerable groups, to provide equitable vaccine allocation, and there is a responsibility to the citizens of the U.S. to vaccinate everyone and bring the country out of the pandemic. Responsibility is not solely placed on medical professionals. When discussing who is responsible for the medical safety of the public, for example, this responsibility falls on doctors, government, and caretakers. Simultaneously, each citizen also bears social responsibility. Wearing a mask, not going out unless necessary, and social distancing are all essential in slowing the spread of COVID-19 and protecting those most vulnerable.
Intertwined with the value of responsibility is safety. The safety and health of all patients must be upheld, with particular consideration towards those with IDD and other vulnerable communities. The safety of vulnerable groups must be at the forefront of decision-making regarding allocation procedures in the COVID-19 pandemic. The placement of vulnerable groups, such as IDD, as higher urgency in allocation lists would actively work to aid these groups by ensuring they can be protected by the virus as quickly as possible. This equitable approach, as opposed to equal, would benefit such communities. Differentiating equal and equitable allocation in this scenario is extremely important, as each option would generate different outcomes. An equal approach may provide a fixed number of vaccines to be distributed to a group, and all groups receive the same amount of vaccines. While this does allow a part of a group to receive the vaccine, the most vulnerable groups would be provided for by the same ratio that non-vulnerable groups are. This approach would not effectively reduce the number of hospitalizations and deaths, as the people suffering the most from the virus are not given the resources needed. An equitable approach would account for these disparities and protect the safety and health of this vulnerable group. A significant factor in both CDC recommended guidelines and individual state vaccine allocation priority lists is the age of U.S. citizens. In nearly all vaccine priority lists, the elderly were prioritized, as they are also an extremely vulnerable group in this pandemic. Unfortunately, there are many other groups at risk of severe COVID-19, people with IDD included. Action must be taken to account for more of these vulnerable populations to protect the safety and health of as many people as possible.
Of course, all of these values interact and impact each other. For example, a more equitable approach to this issue would decrease hospitalizations and deaths by providing aid to those most vulnerable and emphasize the importance of social responsibility. Those who are not included in these vulnerable groups must take responsibility for their safety and the safety of others.
In addition to the previously mentioned values, different ethical theories can be considered to determine an ethical course of action. Some theories may uphold some stakeholders or values above others, so it is essential to recognize who is benefiting from each perspective and who is being hurt. The first theory I would like to present for consideration is deontology, or using a set of rules to determine ethicality. Under deontological decision-making, a set of rules may be drafted to produce a system of allocation that would benefit a group. Through the use of deontological rules, clarity can be provided to groups that have consistently been left out of these protocols by ensuring that action is taken to best aid and inform these vulnerable groups. An example of a set of these rules may be that groups (such as disabled communities) must be listed explicitly on vaccine priority lists. Even if placed lower on the lists than what I consider ethical, disabled communities would know when they would receive a vaccine and where on the list they are located. A deontological rule stating that a vulnerable group must be placed at high priority, alongside frontline healthcare workers, would actively work to protect these vulnerable groups. This would still rely on those who are non-vulnerable to uphold their social responsibility. With this being considered, I also acknowledge that there are issues with a completely deontological perspective. Deontological rules do not leave room for exceptions, which is essential in triage protocols, vaccine distribution, and medical rationing. This can be harmful to those that are not strictly a part of these vulnerable groups, but are in dire need of a resource, vaccine, or ventilator but are not ‘allowed’ to get one at that time according to the rules.
Another theory for consideration is consequentialism, which states that the outcomes/consequences of an action determine if it is ethical. Under consequentialism, it may be decided that the best option would be to vaccinate as many people as possible, as fast as possible, while preventing as many deaths as possible. This would, in turn, vaccinate large groups of people, regardless of need or vulnerability. Though it is a vital angle to view the issue from, I do not believe consequentialism would be the most influential ethical theory to justify my recommended course of action of ensuring that people with IDD are required to be listed as an equal priority to their non-disabled fellow citizens of the same age in COVID-19 vaccine allocation lists, if not as an even higher priority due to their vulnerability. Though it could produce effects such as herd immunity, many factors of consideration within determining priority lists could be left out under this theory. Although it is important, I believe that there are more specific and stronger ethical theories to observe this issue.
Jurisdiction under the theory of consequentialism can change based on what the desired outcome is. Solutions to an issue created under consequentialism can vary based on the desired consequence and may even vary when the desired consequence does not change. An alternate perspective of consequentialism using the same consequence of saving the most lives is vaccinating those most at risk first. This would, in turn, drastically reduce the number of deaths, as those who were at the highest risk of death from COVID-19 have been protected. Consequentialism may be applicable in many circumstances and is flexible to justify multiple courses of action, which is why it is both an argument in favor of and a counter-argument for the course of action previously discussed.
A final theory that this issue can be studied under is utilitarianism. Utilitarianism states that an action is ethical if it benefits the greatest number of people or a majority. I believe that utilitarianism provides a counter-argument for providing vulnerable groups, specifically those with IDD, with a vaccine in the earliest allocation stages. This alternate perspective of this argument is that providing the larger, non-disabled community with the vaccine inadvertently benefits disabled communities. Disabled communities are a minority in the USA, so providing the vaccine to those who do not have IDD first could technically benefit the larger population. It would also allow caregivers to be vaccinated, thus allowing them to best protect the patient receiving care. Once again, this could create herd immunity, therefore protecting all because the spread of the virus is slowed. The total number of cases would also begin to decrease. Fewer people would contract the virus, meaning fewer people are able to spread it. While this is a valid perspective that would benefit a majority, it does not solve the ethical injustice at hand. In our society, ableist behavior, assumptions, and stereotypes are prominent, from a lack of physically accessible architecture to unjust treatment in the medical system to overwhelming lights and colors in public spaces. Because of this, action must be taken to actively fight back against these ingrained ableist ideas. Responsibility must be placed on the general population in order to protect their more vulnerable fellow citizens. For example, I believe that we can rely on non-vulnerable groups to uphold their social responsibility long enough for the most vulnerable groups to be vaccinated first. If this responsibility is not upheld, it would further prove how necessary it is to value those who cannot protect themselves from this virus. Vulnerable groups must be prioritized in crisis standards of care, and we as a nation must aid in any way possible.
The final ethical considerations regarding this issue are principles that govern this decision. Equity and equality become more significant factors, as do justice and beneficence. Justice is defined as the moral obligation to act on the basis of fair adjudication between competing claims. This works with fairness and equity/equality, but it is necessary to differentiate the two when discussing justice. As I previously stated, in thinking about the allocation of the vaccine, an equitable approach would be more beneficial and ethical than an equal approach. For example, equitable distribution of the vaccine to groups disproportionately affected by the virus (disabled communities, elderly) would lower the number of deaths due to COVID-19 by vaccinating the most vulnerable. Those living in group-care facilities or with a caretaker may not have the ability to social distance, for example. In contrast, those living alone or with families do, so providing the vaccine to these groups would help save many lives.
Beneficence, or acting in pursuit of what is best for a group, may be up for more interpretation. Depending on which stakeholders are valued most, beneficence aids many different perspectives of this issue. Considerations under beneficence include thinking about who benefits most from the current course of action and who would benefit from a newer recommended course of action—thinking about who benefits at all and who does not benefit aid in determining what groups should be valued, and how they can be valued in the future. In this scenario, groups that are more vulnerable to the risk of death or hospitalization (such as those with IDD) must be valued, as they are dying at a much higher rate than the population. Beneficence allows us to pursue the best course of this action, but a decision cannot be made on beneficence alone. Values, such as safety and responsibility, must also be taken into account when making these decisions.
Courses of Action
Vaccine allocation procedures that discriminate against those with IDD promote ableism within the COVID-19 pandemic and are not the most ethical practice for this situation. A more ethical course of action would be including those with IDD or physical disability with the non-disabled fellow citizens of their age group and providing explicit, specific acknowledgment of disabled communities in official/government releases, thus eliminating miscommunication and providing a more equitable system of vaccine allocation. In providing such explicit information, people with IDD will know exactly where they are placed in vaccine allocation lists, and there will no longer be a fear of not receiving the vaccine at all. Just as elderly citizens have been prioritized when creating vaccine priority lists because they are disproportionately affected, I believe that disabled communities should, at a minimum, be listed as the same level of priority as their non-disabled, non-essential working fellow citizens of the same age. This approach would help decrease the number of deaths and infections within disabled communities due to COVID-19.
Regarding the issue of people with disabilities possibly having a difficult time using technology to schedule vaccine appointments, I believe that state governments should make further efforts to increase accessibility to vaccine appointments. Alternative modes of scheduling may be implemented, such as a vaccine request form that can be written on paper and mailed to the appropriate state government to confirm a patient’s vaccine appointment. Representatives or aids may also be provided for a person with IDD to aid them should they need to use technology to schedule a vaccine appointment. A final alternative to make vaccine scheduling more accessible for people with IDD is to allow the doctor of a patient with IDD to schedule their appointment, with the patient’s consent and considerations taken into account.
As with any ethical question, there are downsides to all solutions. A question that has remained throughout the research conducted is if any factors within determining vaccine priority lists should be considered above all else. Thinking about age, health status, and other factors that impact wellness are all necessary when coming to a decision such as those that need to be made in a pandemic. Rather than value one consideration above all others, as seen with the decision of California to use age as the sole basis when determining COVID-19 vaccine allocation, I believe that all conditions are subjective and should be viewed at a more individual level.
People with disabilities have long been omitted and disregarded from government procedures, protocols, and releases (Buchanan). The destructive impacts that these actions have on those with IDD have been highlighted throughout the course of the COVID-19 pandemic, as well as new issues that have been brought to light. People with IDD have been hospitalized and have died at much higher rates than the general population due to these exclusive decisions, but a change can be made to save more patients with IDD in the future. The COVID-19 pandemic in the United States has lasted for over one year and is hopefully going through its final months as the vaccine has been distributed nationwide. Though it may be late in the pandemic to alter vaccine allocation lists, it is never too late to change how we as a country value vulnerable groups, especially people with IDD. We can also learn from this pandemic and how groups have suffered and apply this knowledge to future crises to save as many people as possible. The placement of disabled communities as lower on priority lists only promotes the existing ableism in our society and increases the negative effect that the COVID-19 pandemic has on disabled communities.
Though the ethical placement of disabled communities on vaccine priority lists cannot solve all instances of ableism against them, I believe it is a step in the correct direction. It will alter our perception of how people with IDD live and allow us to use this insight to provide aid through changes in general allocation procedures. Compensating for pre-existing conditions as a result of IDD when determining measures such as a QALY or SOFA score, for example, can work to create more equitable access for patients who have IDD. Protecting the most vulnerable groups in any time of national crisis is extremely important, as it not only reflects the values of the country but the people whose lives are valued more as a result of ability or disability.