DISABILITY, PANDEMIC, AND DISCRIMINATION: PEOPLE WITH DISABILITIES SHAFTED AGAIN

This essay identifies a number of ways in which measures to address the COVID-19 pandemic have shafted persons with disabilities, and analyzes how and why people with disabilities were shortchanged. As all Americans and all agencies of government and the private sector do their parts to end the pandemic and get the country back on its feet, they must do so in a way that ensures equal justice and avoids discrimination against people with disabilities. Doing so involves two interrelated components: (1) Recognizing and putting into action certain fundamental principles about fair and humane treatment of people with disabilities; and (2) Operationalizing policies and measures addressing the COVID-19 crisis to reflect the needs and respect the human and legal rights of people with disabilities.

By Robert L. Burgdorf Jr.

March 19, 2021

With special thanks to my daughter Molly Burgdorf, a disability advocate, lawyer, and a woman with a disability, whose generous input and ideas were integral to the conceptualization and substance of this essay.

On March, 18, 2020, less than a week after the World Health Organization (WHO) declared the COVID-19 outbreak a pandemic, the National Council on Disability (NCD) issued this warning:

[P]eople with chronic illnesses and other disabilities have been left behind, denied resources to survive, and as a result, have suffered great losses of life because of lack of emergency preparation that respects every life, and by outright discrimination by medical practitioners who, through ignorance of the law or due to the belief that people with disabilities are less valuable, and therefore less deserving of medical care, than those who are not. Such prejudice has fed into the belief that people with disabilities, especially the most weak and vulnerable, should be put out of their misery. NCD opposes these views and any medical actions that implicitly and explicitly disregard the dignity of the lives of people with disabilities. These beliefs have always been dangerous – but COVID-19 raises NCD’s concerns to an unprecedented level.[1]

Mistreatment, marginalization, and even annihilation of people with disabilities are nothing new.

The history of society’s formal methods for dealing with [people with disabilities] can be summed up in two words: segregation and inequality. Individuals with [disabilities] have faced an almost universal conspiracy to shunt them aside from the mainstream of society and to deny them an equal share of benefits and opportunities available to others.[2]

Since the enactment of the Americans with Disabilities Act (ADA) in 1990, public awareness and recognition of the legal and human rights of people with disabilities have been growing. The ADA was widely heralded as ending “second-class citizenship” of people with disabilities. With the onset of the COVID-19 pandemic, such high hopes and positive trends have been undercut by disregard for and maltreatment of people with disabilities in many of the programs, practices, rules, and policies government and private agencies have developed in response to COVID-19.

The COVID-19 pandemic has injured and killed all kinds of people. As of this writing, some 119,000,000 cases and over 2,600,000 deaths have occurred worldwide, with more than 29,000,000 cases and nearly 530,000 deaths in the United States; and untold numbers of people are suffering ongoing, harmful after-effects of the virus. Unquestionably, some parts of society – including Black people, Latinx people, indigenous people, older adults, poor people, health-care workers, L.G.B.T.Q.I.A.+ people, and prisoners and detainees – have been hit particularly hard.

The virus has also slammed people with disabilities. In February 2021, American broadcast journalist Amy Goodman hosted an episode of her Democracy Now! television and radio program that featured a panel of disability activists describing the brutal consequences of discrimination on the basis of disability in the face of the pandemic. Goodman began the segment by recognizing the “devastating impact” that the COVID-19 pandemic has had on people with disabilities, noting that they “are two to three times more likely to die from COVID.”[3]

Yet, too often people with disabilities are inappropriately excluded, ignored, or treated badly in procedures and policies deployed to address the virus. The purpose of this essay is to shed light on and analyze why and how COVID measures have severely shortchanged persons with disabilities.

The following outline summarizes major topics:

I. COVID-19 Is Ultra Harmful to People with Disabilities

Because of Increased Medical Vulnerability
Because of Discrimination and Bias by Medical Personnel
Based on Other Systemic Inequities that Predated the Pandemic

II. COVID-19 Measures and Policies Discriminate Against People with Disabilities

Discrimination in the Allocation of Treatment and Services
Delay and Failures in Addressing Congregate Settings Issues
Woefully Inadequate Data Collection
Absence of Needed Personal Protective Equipment (PPE)
Inadequacies in COVID Testing Programs
Inequities, Confusion, and Frustration in Vaccine Allocation for People with Disabilities
Devalued Vaccination Status of Children and Adolescents

III. Recent Developments and Current Status

Progress in Dealing with the COVID-19 Pandemic
Ongoing Flaws and Problems for People with Disabilities in COVID-19 Pandemic Efforts
Much More Needs to Be Done to Achieve Equal Access to Medical Equipment, Services, Facilities, Treatment, and Vaccinations

IV. Going Forward from Here

Fundamental Guiding Principles
Rectifying COVID-19 Policy and Practice Shortcomings
Conclusion

I. COVID-19 Is Ultra Harmful to People with Disabilities

A. Because of Increased Medical Vulnerability

Heightened Susceptibility to COVID-19 of People with Disabilities

People with disabilities are at greater risk of severe illness or death from COVID-19. CDC (the Centers for Disease Control and Prevention) has published lists of some medical conditions that cause increased risk for being infected and for severe illness or death from the virus.[4] As one disability activist aptly observed: “Studies show that people with disabilities who contract the virus are much more likely to die from it. … The science says people with disabilities are disproportionately dying of COVID.”[5] Moreover, aside from medical conditions, a significant proportion of the population with disabilities are themselves Black, Latinx, indigenous, older, unemployed, poor, homeless, L.G.B.T.Q.I.A.+, of higher weight, essential workers, or members of other groups that are at high risk from COVID infection. Having more than one risk factor for contracting the coronavirus and suffering serious consequences from it exponentially multiplies the perils for people with disabilities. It also makes such people prone to what has been termed “intersectional discrimination,” a double-dose of discriminatory treatment based on their overlapping identities or circumstances.[6]

B. Because of Discrimination and Bias by Medical Personnel

Bias Against People with Disabilities

We people with disabilities are well aware that we often get short shrift in society. In a 1997 report, the National Council on Disability (NCD) observed that “[o]ne of the hallmarks of societal attitudes toward disabilities has been a tendency of people without disabilities to overestimate the negative aspects and underestimate the positive features of the lives of those who have disabilities.”[7] NCD added that the U.S. Commission on Civil Rights described the negative connotations of disability as “extremely extensive”: “To the fact that a [person with a disability] differs from the norm physically or mentally, people often add a value judgment that such a difference is a big and very negative one.”[8] It is not surprising that some such misguided attitudes and biased thinking regularly infect the health care industry. In the 1997 report, NCD gave a big tip of the hat to medical professionals:

Many people with disabilities have been great beneficiaries of the miracles of modern medicine. Some owe their very lives and others much of their ability to function to the medical profession. Lifesaving treatments, rehabilitative surgical techniques, new medications, and numerous other medical advances have greatly improved chances for survival, the amelioration of limitations, and options for accommodating disabilities.

But NCD proceeded to make critical judgments of medical treatment of patients with disabilities, noting that people with disabilities frequently see firsthand evidence that doctors are negatively disposed toward them:

Individuals with disabilities and parents of children with disabilities have encountered numerous kinds of fervently pronounced, but inaccurate predictions by members of the medical profession. Some have been told that they or their children would not survive, or would not regain consciousness, or would not walk, or would not read, or would not be toilet-trained, or could not live independently, or could not perform particular activities, and yet ultimately found these predictions to be wildly inaccurate.

An April 15, 2020, story by NPR journalist Joseph Shapiro, “People with Disabilities Fear Pandemic Will Worsen Medical Biases,” presented numerous examples of outrageous denials of medical treatment to people with disabilities because of doctors’ prejudice against them.[9] “Almost every person with a disability, or their family, can tell a story of a time when they were treated dismissively or even denied the care they needed,” Shapiro observed. He also described complaints filed by disability groups in several states to challenge crisis of care standards and their application to cut care to individuals with disabilities, prompting the Office for Civil Rights at the U.S. Department of Health and Human Services to strike down an Alabama policy that would have allowed doctors to deny ventilators to some adults and children with intellectual disabilities or people with “moderate to severe dementia.” The Office for Civil Rights declared that “any guidelines for triage of care could not put disabled people and the elderly ‘at the end of the line’ for care.”

Small wonder that in a report issued in February 2021 a coalition of disability rights and civil rights organizations, and academic authorities, supported by scientific citations and poignant examples, declared starkly, though far from surprisingly to the disability community, that “[d]iscrimination based on disability is pervasive in the medical profession.”[10]

In addition to a large body of other supportive authority, this conclusion is firmly corroborated by the results of a groundbreaking survey of practicing physicians’ perceptions of people with disabilities and their health care, the first of its kind, also published in February of this year.[11] Authors of the survey made a number of important and sobering observations: for centuries, societies have stigmatized people with disabilities; physicians often share these societal prejudices toward those having disabilities; more than 30 years after the enactment of the ADA, the population with disabilities “continues to experience inequitable health care on many levels”; large proportions of practicing U.S. physicians appear to hold biased or stigmatized perceptions of people with disabilities; the authors were “unaware of prior studies in which physicians expressed this level of bias toward other populations that also experience disparities in care (for example, racial or ethnic minorities or people who identify as lesbian, gay, bisexual, or transgender)”; and found it only reasonable that such explicit bias has deleterious effects on care equity for people with disabilities. Nearly one-fifth of survey respondents “strongly” agreed that patients with disabilities are “often treated unfairly in the health care system.” Reacting to the doctors’ attitudes, Dr. Iezzoni, one of the lead authors of the study said, “I was horrified.” The authors also acknowledged the unfortunate fact that medical schools generally do not include disability topics in their curricula.

The existence of pervasive, detrimental discrimination on the basis of disability in medical care has been and is an indisputable reality that makes people with disabilities more at risk from COVID infection, by keeping them from having a fair and equal chance of obtaining protective measures and equipment, medical treatments, timely COVID-19 vaccination, and other benefits and services for avoiding infection; treating the disease effectively; and lessening its short and long-term health consequences.

C. Based on Other Systemic Inequities that Predated the Pandemic

Where People Live and Receive Services

Living in congregate settings increases the risk of infection and death from COVID-19. A high percentage of people in residential treatment and care facilities are elderly people with disabilities. Placement and confinement of people with disabilities in nursing homes, group homes, and other types of congregate living facilities, including psychiatric hospitals and board and care homes, usually means warehousing people with disabilities in settings that have experienced extremely elevated rates of COVID-19 infections, serious complications, and deaths. Too often, these are situations where social distancing is difficult or practically impossible because of shared rooms, shared facilities, and shared staff.

Being forced to live or remain in these types of places to get the services you need has too often become a veritable death sentence due to high infection and death rates. More than 100,000 deaths of residents and staff in long-term care facilities had been reported as of the last week in November 2020 – a number that is certainly an undercount [consider the example of the Attorney General of the state of New York recently reporting that the State Health Department and Governor Cuomo had underreported deaths from COVID-19 in nursing homes by as much as 50 percent[12]], and does not include all the types of congregate settings where people with disabilities live and receive services.

Increased Exposure to COVID Virus

Due to factors such as dependence on close interaction with personal care assistance, nursing care, and household help providers; more reliance on public or shared transportation; lower socio-economic status; and higher rates of homelessness and unemployment; people with disabilities tend to have more frequent contact with people at high risk of having been infected with COVID-19, often in the absence of adequate protective measures and equipment, and other safeguards.

Prior Health and Medical Care Disparities

People with disabilities have long faced barriers to accessing health care due to structural, systemic, architectural, and communication obstacles. People with disabilities also have higher rates of the types of health conditions (e.g., obesity, smoking, heart disease, and diabetes) that are risk factors for severe illness and higher rates of death from COVID-19.

Other Exacerbating Factors

Some other problems for people with disabilities, such as the lack of affordable, accessible housing and nutritious food, that predated the pandemic and can impair a person’s health, have been significantly intensified by COVID-19.

Availability of Health Care and Need for Mental Health Services

A fundamental and growing problem is insufficient timely access to adequate health care for people infected with COVID, many of whom are experiencing long-term or permanent effects. In an environment where the protections of the Affordable Care Act have been continually under threat, exclusion of people with pre-existing conditions or ceilings on coverage created serious difficulties for a growing segment of the population. Broadly inclusive health care is crucial for all people at risk for contracting COVID-19, and particularly for those persons with disabilities who are in higher peril from the virus. Another critical need is for more mental health services to address mental health consequences of the pandemic, both for those who had a history of mental conditions before the pandemic and those newly affected by a surge in conditions generated in the COVID-19 era.

II. COVID-19 Measures and Policies Discriminate Against People with Disabilities

A. Discrimination in the Allocation of Treatment and Services

Crisis Standards of Care

To guide the administration of health care services and systems during epidemics and pandemics, when medical resources are typically stretched, most states and health care systems have for many years adopted “Crisis Standards of Care.” These standards address a wide range of administrative policies, practices, and decisions, including (1) broad matters such as staffing, supplies, and facility space options; and (2) more specific practices and issues, such as treatment alternatives and criteria, use of PPE, and vaccine allocation. Too often, COVID-19 crisis standards of care have incorporated or engendered discriminatory courses of action toward individuals with disabilities, prompting the filing of discrimination complaints in a number of states. The COVID-19 crisis standards plans or their implementation have in many instances resulted in medical restrictions that devalue the lives of people with disabilities. Examples include inappropriate rationing and reallocation (overtly or covertly) of medical treatment, ventilators and other medical devices; and the deprivation of other necessary and often life-saving medical care.

Crisis standards of care have often reflected a bias against disabled people and older adults. They typically prioritize care towards patients who are younger and do not have disabilities, excluding or de-prioritizing those who have certain health conditions, those who are presumed unlikely to survive in the intermediate or long term, and those presumed to require greater resources to survive the acute episode of illness. Crisis standards of care, therefore, may direct medical resources away from those with certain disabilities due to medical bias, which can be conscious or unconscious.[13]

In “Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care,” published in The Hastings Center Report on June 29, 2020, 14 scholars sounded an alert about the problem of disability bias in the framing of COVID-19 crisis standards of care, and advocated for a shift toward what they called “disability justice” as an alternative.[14] The essay began:

The COVID‐19 pandemic has highlighted systemic disadvantages that people with disabilities face in the health care system. While catastrophic health emergencies demand an immediate response that often precludes addressing underlying systemic discrimination, 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.

The authors argued “for the full recognition of the moral equality of [people with disabilities] in formulating crisis standards of care and in modifying social and institutional practices in light of the inequities that the crisis highlights and exacerbates, [so that] the demand ‘Nothing about us without us’ is truly met.” They characterized their essay as offering “concrete recommendations for reforms before, during, and after a public health emergency,” and were hopeful that the “work of disability rights groups during this crisis [will] help advance the field of bioethics so it continues to develop as a disability-conscious field of inquiry and practice.”

In the “Physicians’ Perceptions” study discussed previously, the authors declared that “qualitative research studies involving interviews with people with disability suggest that physicians often make erroneous assumptions about patients’ values and preferences, limiting their health care options and compromising quality of care,” and provided several examples with citations.[15] They added:

Some physicians believe that they have superior technical knowledge about disabling conditions, but they can be wrong, taking actions that harm patients. An example is physicians incorrectly believing that all patients with spinal cord injury cannot feel pain below the level of their injury and therefore refusing to provide pain relief for procedures below that level, thus causing these patients sometimes excruciating pain.

The authors of the survey pointed out that the ADA prohibits eligibility criteria that screen out people with disabilities or people with particular disabilities from receiving lifesaving treatment, or crisis standards of care that exclude or give lower priority of care for persons with particular medical conditions, giving examples of such denials that would not pass muster under the ADA. Ultimately, the authorities and scholars who worked on the report provided a clear overview of their insights into the application of crisis standards of care:

[T]he COVID-19 pandemic has exposed long-standing aspects of US health care that severely disadvantage people with disabilities. As states promulgated crisis standards of care to guide decisions allocating scarce resources, such as tests, intensive care unit beds, and mechanical ventilators, some of these standards explicitly excluded people with disabilities. Concerns that crisis standards of care would discriminate against people with disabilities prompted the HHS Office for Civil Rights to warn on March 28, 2020, that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.” Our study underscores that many physicians perceive worse quality of life for people with disabilities. The high prevalence of negative perceptions of living with disabilities raises questions about constituting the triage teams that make critical resource decisions when crisis standards of care are invoked. Proactively assessing implicit and explicit biases toward disability among physicians involved in decision making concerning crisis standards of care is critically important. [Emphasis added]

It is essential that decisions about treatment allocation must be made fairly, based on individualized determinations using current objective medical evidence, and not based on generalized inaccurate assumptions about a person’s disability, or metrics that are unfairly weighted against people with disabilities.

Visitation Policies Affecting Family Members and Support Personnel

Consistent with CDC guidance, most states and health care facilities issued policies restricting visitors as a containment effort in response to COVID-19. To benefit fully from health care and treatment programs and services, some people with disabilities need to have personal contact with support personnel, not only as provided by the facility, but often by family members or other support persons, to assist them. Such supporters may need to be present in person to: facilitate effective communication with health care providers and other staff; coordinate and provide essential services or participate in treatment; give informed consent; and otherwise facilitate equal access to care and treatment. Contact with family members, and outside medical professionals, including specialists and therapists may be key ingredients to physical and emotional well-being of some individuals with disabilities. Individualized modifications to visitation policies, along with precautions to contain the spread of infection, are needed, but too many states and health care systems have placed unnecessary obstacles between people with disabilities and the crucial assistance of their necessary supporters. Health care providers are required to make accommodations for visitation where needed for essential services or effective communication when the absence of such accommodation would impede equal access to care and services.

B. Delay and Failures in Addressing Existing Congregate Settings Issues

Fundamental Need to Eliminate Unnecessary Residential Confinement

Eliminating unnecessary confinement in restrictive residential facilities is a critical, baseline issue for people with disabilities – both before and even more since the beginning of the COVID-19 crisis. The ADA and court decisions interpreting the law sought to end this type of segregation and recognized a right to receive services in the most integrated setting appropriate to the person’s needs. Despite the fact that this is what many people with disabilities want, and that it’s often less expensive, people continue to be stuck in congregate settings rather than in the community.

Necessity of Enhanced Use of Medicaid Funding for Home and Community-Based Services

Addressing unwarranted confinement of people with disabilities in restrictive residential facilities must include substantially more investment in home and community-based services (HCBS) to provide opportunities for Medicaid beneficiaries to receive services in their own homes or community rather than in institutions or other isolated settings. For many, Medicaid is the only source of funding for the services to support their activities of daily living (bathing, dressing eating, toileting, etc.) This country provides an entitlement to receive these services in a nursing home setting (places where rates of COVID and related mortality have soared), but the same entitlement does not automatically apply to community settings. States can choose, but are not required, to cover the costs for people to receive services and supports in their homes or community, rather than in an institutional setting, but they should opt to facilitate such funding for people with disabilities.

Heading in the Wrong Direction Regarding Institutional Confinement

Instead of accelerating moving people out and finding ways to help diminish confinement in congregate facilities by promoting the development of community-based alternatives, the pandemic has resulted in suspending plans for individuals’ return to the community, preventing transitioning out of institutions. At the same time, in the name of allocating beds to the most critically ill patients, hospitals have discharged many patients to nursing homes.

C. Woefully Inadequate Data Collection

Deficient Data on the Impact of COVID-19 on People with Disabilities

There is a paucity of data regarding how the pandemic has affected those with disabilities and their supporters (paid staff, volunteers, and familial supports). Little data are generally available regarding the numbers of cases, hospitalizations, and deaths in those groups; and data that have been collected are frequently inaccurate. In one widely publicized incident, the Attorney General of the state of New York recently issued a report stating that the State Health Department and Governor Cuomo had underreported deaths from COVID-19 in nursing home populations by as much as 50 percent.[16] And such understating of incidence of dire results for those with disabilities is hardly rare. In addition to concerns about undercounting of cases and deaths of people with disabilities, some studies have suggested that all too frequently deaths of people with disabilities are inaccurately attributed to underlying disabilities rather than COVID infection. The overall lack of accurate, comprehensive data on impacts on people with disabilities clearly has had detrimental implications for vaccine allocation and other COVID response efforts and funding.

D. Absence of Needed Personal Protective Equipment (PPE)

PPE Not Provided

Too often people with disabilities and their service providers have not received PPE in circumstances where it is needed to protect such individuals’ safety. There has been a severely inadequate focus on the provision of necessary PPE, both for persons with disabilities and for direct support professionals who provide home and community-based services. This has been fueled by a lack of proper oversight, ignorance of the needs of people with disabilities, and administrative complications and foul-ups.

E. Inadequacies in COVID Testing Programs

Lack of Priority for COVID Testing of People with Disabilities

In general, COVID-19 testing for people with disabilities and those who provide services to them has not been a priority. As a result, those groups have been under-tested, with the result that contact tracing regarding them has been impaired and often impossible, preventing them from knowing whether they have been exposed to COVID-19 and whether they risk severe illness, and/or infecting their families, friends, and care providers.

Obstacles to Testing

Barriers have hampered or prevented COVID testing for people with disabilities. These have included architectural, communication, and transportation barriers at testing sites or difficulties in getting to such sites; inaccessible websites, information and scheduling services; documentation requirements (many people with disabilities, including people experiencing homelessness or who have lived in institutions may lack the necessary documents, such as a government-issued photo ID, which can be costly and time-consuming to obtain); and drive-in only testing sites, which can be a barrier or prohibitively expensive for those people with disabilities who do not drive.

F. Inequities, Confusion, and Frustration in Vaccine Allocation for People with Disabilities

Unclear and Fluctuating Priority for Vaccination of People with Disabilities

As COVID-19 began its rampage around the globe, medical personnel, public health officials, and governmental entities faced an unknown and complex virus. Methods for dealing with it have evolved and changed rapidly as more information, data, and technology have become available. In the United States, the initial lack of centralized governmental policies and standards for treatment, vaccine distribution, and other elements of addressing the pandemic; coupled with the multiplicity of agencies responsible for overseeing, regulating, and implementing preventive and remedial measures; led to a hodgepodge of varying and vacillating policies and standards. Uncertainty and confusion have been widespread in regard to establishing priorities for COVID vaccinations, and particularly as to the prioritization accorded people with disabilities.

Starting Point – Recommendations of the Centers for Disease Control (CDC)

The CDC has assumed responsibility for making recommendations on the priority in which various groups of people should receive the COVID-19 vaccine. On December 3, 2020, CDC announced that initial supplies of the vaccine should be offered to healthcare personnel and long-term care facility residents; it designated this as Phase 1a of the vaccine rollout. On December 22, 2020, CDC issued recommendations covering Phases 1b and 1c, as follows: Phase 1b included frontline essential workers and people aged 75 and older, while Phase 1c included people aged 65 to 74 years, people aged 16 to 74 with underlying medical conditions, and essential workers other than healthcare personnel (already included in 1b).[17] CDC proposed and promoted the tiered concept of vaccine prioritization, but its views were merely “recommendations.” It fell to the states and other officials to issue more specific and more-or-less binding orders, policies, and regulations governing the actual implementation of COVID-19 prevention, treatment, and vaccine roll-out programs.

Underlying Medical Conditions vs. Disabilities

To elaborate on what it meant by “underlying medical conditions” that it sometimes seemed to equate with “disabilities,” CDC referred to a list of “People with Certain Medical Conditions,” that it cautioned is “a living document” that is “not exhaustive and only includes conditions with sufficient evidence to draw conclusions,” and “may be updated at any time.” It was intended to cover adults who “are at risk for severe illness from the virus that causes COVID-19.”[18] CDC’s commentary on Certain Medical Conditions lists specific conditions in two categories; the first, of persons “at increased risk of severe illness” from the virus associated with cancer, chronic kidney disease, COPD (chronic obstructive pulmonary disease), Down Syndrome, heart conditions, immunocompromised state from organ transplant, severe obesity, sickle cell disease, and Type 2 diabetes; the second, of people who “might be at an increased risk for severe illness,” includes asthma (moderate-to-severe), cerebrovascular disease, cystic fibrosis, hypertension or high blood pressure, immunocompromised state from causes other than organ transplants, neurologic conditions such as dementia, liver disease, pulmonary fibrosis, thalassemia (a blood disorder), and Type 1 diabetes.[19] Many of the conditions found on CDC’s two lists would qualify as “disabilities” in many contexts, but the lists are neither precise nor exhaustive, leaving a lot of open questions to be filled in by states and health officials charged with directing and implementing COVID-19 treatment and vaccine administration.

Disabilities and Eligibility for Vaccine Priority

As state and local governments and medical providers began to roll out their distribution of the COVID-19 vaccine, they identified categories of targeted recipients and began to specify the priority in which people in each category should receive shots. In doing so, they generally tried, at least initially, to follow the CDC recommendations regarding to the degree of priority for persons with disabilities. This was not easy or fool-proof, as the CDC Certain Medical Conditions lists were in large part prepared with a focus on treatment and illness prevention, and informing individuals with information about the risks they might face from COVID-19; did not seek to include rare conditions; and were, as CDC expressly stated, not attempting to be exhaustive. The lists were a relatively small sampling drawn from among a multitude of disabling conditions. For examples of some disabilities not included in CDC’s examples, see the text associated with endnote 23. To some extent, the CDC lists gave an impression of clarity that they did not fully deliver. And while CDC, most medical authorities, and state officials often gave lip-service to the notion that people with disabilities should be prioritized for COVID vaccination, as they are at high risk of severe illness and death from COVID-19, significant questions remained about what level of priority they should be given and to which people with disabilities priority should be extended. Because such lists are used to include some people and exclude others. it is critical that they be developed with substantial involvement, consultation, input, and oversight of the disability community.

Misguided Quality of Life Judgments

Much of the disability bias and discrimination discussed previously is centered on faulty – usually negative – predictive assessments of the quality of life of individuals (patients) with disabilities. As NCD wrote in 1997:

In reality, such attitudes and negative predictions of life quality have little to do with the actual life experiences of people with disabilities. People with disabilities commonly report more satisfaction with their lives than others might have expected. Though they commonly encounter obstacles, prejudice, and discrimination, most people with disabilities manage to derive satisfaction and pleasure from their lives.

After conducting a nationwide poll of people with disabilities, Louis Harris and Associates reported that “[d]espite their disadvantaged status and frequent exclusion from activities enjoyed by most Americans, a large majority of disabled Americans are satisfied with their lives”; the Harris organization described this as “a remarkable finding in light of the portrait of hardships revealed in these survey findings.” Even individuals who identified themselves as having very severe disabilities tended to report that they were very or somewhat satisfied with their lives.[20]

The report of the coalition of disability rights and civil rights organizations, and academic authorities, on crisis standards of care and intersectional medical discrimination observed that “[n]on-disabled medical professionals frequently presume that disabled people have a lower quality of life, reflecting a lack of understanding about how people with significant disabilities can live fully, enjoy their lives as much as anyone else, achieve as much or more than others, and where necessary develop alternative strategies to accomplish goals that others assume are off-limits to them.”[21]

And yet, a striking finding of the study on physicians’ perceptions of people with disabilities was that over 82 percent of participants reported that people with significant disabilities have worse quality of life than people without disabilities. The authors noted that, not surprisingly, some patients with disabilities “express frustration about physicians’ lack of insight into the quality of their daily lives.” Elaborating on this situation, the authors commented:

More than twenty years ago, researchers investigated how perceptions of the quality of life of people with disabilities can diverge from societal assumptions. These inquiries identified a so-called disability paradox: that many people with significant disability equilibrate to living with functional limitations and enjoy good quality of life. Under the disability paradox, “the general public, physicians and other health care workers perceive that persons with disabilities have an unsatisfying quality of life despite the fact that over 50% of these people report an excellent or good quality of life.”

In the COVID-19 pandemic, however, states are too often making decisions about the level of priority to be assigned to people with disabilities for receiving vaccinations (and treatment) based on uninformed underestimations of quality of life expectations for such individuals.

Major Vaccine Prioritization Policies and Practices Reflect Discrimination

A number of disagreements and disputes have arisen in regard to prioritization of persons with disabilities for COVID inoculation. Three significant area of concern have been: states that have not made disability a priority category; the failure of eligibility lists to include all those conditions putting people at high risk of infection by the virus; and inoculation information and appointments websites and vaccination sites that are not accessible and disability user-friendly.[22] Disability advocates pushed for expansion of the conditions on the priority lists (to add a variety of other conditions, including muscular dystrophy, progressive lung disease and respiratory failure, multiple sclerosis, quadriplegia, and cerebral palsy, to name but a few), as well as for higher priority of people with disabilities in general.[23] Controversy arose about the fact that people who were not residing in long-term care facilities were not prioritized for vaccination even if they have very severe conditions, while people with identical or less severe conditions were near the front of the line for their shots if they lived in a long-term care facility. Residents of nursing homes and assisted living facilities and older adults were prioritized, as is appropriate. But others living in the community were not similarly afforded priority for vaccination even though they are often at higher risk for contracting the virus and have conditions that increase their likelihood of severe disease or death, in part because many receive daily, in-person services and supports that cannot be provided from a distance (coupled with the lack of adequate PPE). Despite objections from the National Council on Disability, nine states have expressly excluded those living at home or in congregate settings other than nursing homes and assisted living facilities (e.g., group homes and psychiatric facilities) from prioritization for the vaccine.[24] Further, sometimes people with disabilities have a condition that makes them eligible for priority vaccination, but no priority was given to direct support professionals who provide home and community-based services for them. Conversely, in other circumstances, some people with disabilities have not been able to obtain inoculation even though their personal and medical care support personnel have been able to.

Intellectual and Developmental Disabilities (IDD (or I/DD))

Although CDC has posted some information about developmental disabilities, including intellectual disability, to date it has not included these conditions on its list of People with Certain Medical Conditions that are to be entitled to Phase 1c vaccine priority. This has led to consternation and inconsistency as states have developed their vaccine allocation plans and schedules, complicated by the breadth and inclusivity of the terms “developmental disabilities” and “intellectual disability,” each of which occurs across a spectrum. Studies showing that people with IDD who contract coronavirus die at sharply higher rates than others have led to calls for those conditions to be designated for early inoculation.[25]

On December 15, 2020, the National Council on Disability (NCD) called for “vaccine allocation equity for individuals with intellectual and developmental disabilities (IDD),” and recommended: “IDD should be included in the list of high-risk diagnoses used to determine vaccine priority…. [I]ndividuals with IDD face alarmingly higher complication and mortality rates from COVID-19, with mortality rates up to 15 percent…. [P]rioritizing individuals with IDD should be made explicit throughout all relevant guidance and state executive orders.” NCD added that “those who live with or provide care to people with IDD should be included in the same phase of vaccine allocation.”[26] As of this writing, NCD’s protests have yet to persuade many states to address this problem.[27]

Demotion by Age-Based Approach and Recent Advances

CDC’s placement of adults with underlying medical conditions in the first phase of its recommended vaccine priority recommendations was a positive recognition of the fact that people with disabilities are at greatly increased risk of contracting the COVID-19 virus and of being severely harmed or killed by it. Most states initially followed CDC’s lead on this matter. In more recent times, however, some states decided that, in the name of getting the vaccines out to more people more quickly, they would reorder the priority list to begin immunizing people based on age – effectively de-prioritizing people with disabilities. Previously, people aged 65 or over already took priority under CDC’s recommendations and were included in Phases 1b (75 plus) or 1c (65 to 74). But under some revised state protocols, people less than 65 years of age who met the state’s lower age-floor, whether they have disabilities or not, can “jump the queue” and get inoculated. On February 9, 2021, the National Council on Disability reported:

29 states – Alabama, Alaska, California, Connecticut, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Kansas, Kentucky, Maine, Massachusetts, Michigan, Minnesota, Nevada, New Mexico, North Dakota, Oklahoma, Rhode Island, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, Washington, West Virginia – and Washington, DC, have all de-prioritized persons with disabilities that fall into that category [having underlying conditions and comorbidities that put them at increased risk from COVID].[28]

A well-publicized example occurred on January 25, 2021, when Governor Newsom of California announced that the state was switching to an “age-based approach,” meaning that after vaccinating those 65 and over and some essential workers, the state would distribute vaccines based on age rather than high-risk health status, or other criteria such as overcrowded living conditions.[29] This meant that, after completing Phase 1b, California would move to immunize people in the order of their ages, and not on the other factors previously considered, including disability. This approach would basically jettison any priority because of a person’s disability no matter how severe or debilitating.

After considerable outcry from people with disabilities, California officials announced that adults with “certain medical conditions” (disabilities?) that put them at increased risk would be eligible for inoculation, along with people aged 65 or over. Recently, on March 15, 2021, California expanded COVID-19 vaccine eligibility to persons aged 16 to 64 having any of ten conditions from the CDC list of medical conditions that put people at “increased risk of severe illness from the virus that causes COVID-19”; people can also get vaccinated in California in the following circumstances:

- COVID-19 infection is likely to result in severe, life-threatening illness or death;
- Getting COVID-19 will limit the person’s ability to receive ongoing care or services vital to well-being and survival; or
- Providing adequate and timely COVID-19 care will be particularly challenging as a result of the disability.

People are permitted to self-attest that they have a listed disability or other serious condition, and do not have to provide documentation.[30] These changes were estimated to expand eligibility to some 4.4 million additional people, though early reports were that implementation was spotty.[31]

Pushback from people with disabilities and their supporters has helped to ameliorate and fine-tune age-based policies in some other states to some degree. While it is in everyone’s best interest to vaccinate as many Americans as soon as possible, it should not be done through measures that disadvantage and risk the health and lives of people with disabilities by moving them lower on the vaccine eligibility list.

Current Place of People with Disabilities in the COVID Waiting Line

Important information about the status of people with disabilities in the quest for COVID-19 inoculation emerged in the first week of March 2021. On March 1, the Kaiser Family Foundation (KFF), which provides information on health policy matters, issued a substantial and informative “issue brief” report on “COVID-19 Vaccine Access for People with Disabilities.”[32] After noting that people in nursing homes accounted for a disproportionate share of deaths attributed to COVID-19, the authors contrasted that with the scant data available regarding people with disabilities in other settings:

[L]ess attention has been paid to nonelderly people with disabilities who use long-term services and supports (LTSS) but live outside of nursing homes. This population includes people with a range of disabilities, such as people with autism or Down’s syndrome who live in group homes, people with physical disabilities who receive personal care services at home, and people who are receiving behavioral health treatment in residential facilities. Some nonelderly people with disabilities receive LTSS in a variety of community-based settings such as group homes, adult day health programs, and/or their own homes. Other nonelderly people with disabilities receive LTSS in institutional settings such as intermediate care facilities for people with intellectual or developmental disabilities (ICF/IDD) or behavioral health treatment centers for people with mental illness or substance use disorder. Many nonelderly people with disabilities, both in the community and in institutions, rely on Medicaid as the primary payer for the LTSS on which they depend for meeting daily self-care needs.

The document continued:

Nonelderly people with disabilities and the direct care workers who provide their LTSS have similar risk factors for serious illness or death from COVID-19 compared to their counterparts in nursing homes, due to the close contact required to provide assistance with daily personal care tasks, such as eating, dressing, and bathing; the congregate nature of many of these settings; and the highly transmissible nature of the coronavirus. Seniors in nursing homes are explicitly included in the top priority group in all states’ COVID-19 vaccine distribution plans, but nonelderly people with disabilities who use LTSS may be not prioritized.

A significant finding in the issue brief addressed the absence of adequate data regarding the impact of COVID-19 on persons with disabilities: “The wide variety in state reporting makes it difficult to compare between states or have a complete understanding of how people with disabilities have been impacted by the pandemic.” The data available from the limited number of states reporting them indicated that people who receive long-term services and supports in settings other than nursing homes and assisted living facilities have an elevated risk of COVID-19 infection ranging from 19% to 50% – on a par with rates of infection for residents of nursing homes, and well above the 8% overall rate of COVID infection among the U.S. population as a whole. Though less than comprehensive, the available data support research suggesting that congregate settings, particularly larger facilities, are at high risk for COVID outbreaks.

Noting that “people with disabilities rely on the close physical proximity of caregivers for communication and daily needs, which limits their ability to adopt preventive measures such as social distancing,” the Kaiser issue brief cited several studies documenting that people with various types of disabilities had highly elevated rates of COVID infection and fatalities from it. Moreover, the authors found that direct care workers who provide long-term services and supports outside of nursing homes face increased risks from COVID-19, similar to their nursing home counterparts. And yet, “[f]ew state vaccination plans explicitly mention direct care workers who provide LTSS in settings other than nursing homes.”

As to COVID-19 vaccination for persons with disabilities themselves, the Kaiser document presented a disturbing recognition that “[f]ew state vaccination plans explicitly mention people with disabilities.” It elaborated that “[a] few states do specifically prioritize people with disabilities in their vaccinations plans,” and mentioned eight states that provide some form of priority from among a hodgepodge of disability priority categories.

At the end of the Kaiser Family Foundation policy brief, the authors identified three “other policy issues [that] will affect access to vaccines for people with disabilities”:

1. 1. People with disabilities who receive services in the community or in non-nursing facility institutions may face accessibility barriers at vaccine distribution sites.
  2. People with disabilities and their direct care providers may benefit from focused messaging as part of general vaccine outreach and public education efforts.
  3. [P]olicymakers may want to consider people with disabilities in data collection efforts to help inform and refine current vaccine distribution and access efforts and identify disparities such as those based on race or ethnicity.

G. Devalued Vaccination Status of Children and Adolescents

Children and Adolescents Generally

CDC recommendations and most states’ COVID vaccination schedules put a very low priority on the vaccination of young people. CDC recommendations basically gave no priority at all except to those at least 18 years old (or in a few circumstances, 16), even those with underlying medical conditions, though some states have applied their own variations. The primary rationales for this limitation are: (1) that children have not been included in studies of effectiveness and safety of COVID vaccination, so they must wait until such testing has been done; and (2) that, in any case, children and adolescents are unlikely to contract COVID-19, and, if they do, are very unlikely to have severe or fatal cases. The idea that children are at little risk from COVID-19 is actually the basis for both rationales, since the decision not to include children in vaccination testing was a policy decision largely fueled by an a priori assumption that there was no urgency in determining the safety and effectiveness of inoculating children, thus inevitably delaying the possibility of earlier administration of vaccines to them. Moreover, the assumption that risk to children is small or negligible was left untested and unverified because relatively little attention was devoted to testing and compiling data regarding the impact of the pandemic on children.

Actually, considerable scientific evidence indicates that these rationales for low priority of children and adolescents for COVID vaccination are not as straightforward and sound as they are popularly considered to be. Information about COVID infections of children provided by CDC at the end of 2020, and in an article by a panel of medical experts published in JAMA Pediatrics provide pertinent insights. In regard to children aged 1 month to 18 years, CDC presented the following information:

While “fewer cases of COVID-19 have been reported in children (age 0-17) compared with adults,” … “some cases of COVID-19 in the United States reported to CDC were among children. The number and rate of cases in children in the United States have been steadily increasing. The true incidence of [COVID-19] infection in children is not known due to lack of widespread testing and the prioritization of testing for adults andthose with severe illness.”

As to infections and transmission among children, “Recent evidence suggests that compared to adults, children likely have similar viral loads in their nasopharynx [upper part of the throat behind the nose, part of the respiratory system], similar secondary infections rates, and can spread the virus to others.”

In regard to Severity of Illness in Children, “While children infected with [the virus] are less likely to develop severe illness compared with adults, children are still at risk of developing severe illness and complications from COVID-19. Weekly COVID-19 hospitalization surveillance data show that the rate of hospitalization among children is low compared with that of adults, but hospitalization rates among children are increasing. About 1 in 3 children hospitalized with COVID-19 in the United States were admitted to the intensive care unit, similar to the rate among adults.” “A recent systematic review estimated that only 16% of children with [COVID-19] are asymptomatic …”[33]

As to the consequences of COVID-19 infection when contracted by children, CDC declared: “Similar to adults, children with severe COVID-19 may develop respiratory failure, myocarditis, shock, acute renal failure, coagulopathy, and multi-organ system failure. Some children with COVID-19 have developed other serious problems like intussusception or diabetic ketoacidosis. Children infected with [COVID-19] are also at risk for developing Multisystem Inflammatory Syndrome in Children (MIS-C).” MIS-C is a serious syndrome characterized by high fever, rash, hypotension, gastrointestinal symptoms, and organ dysfunction. Many of its symptoms strongly resemble a very serious condition known as “Kawasaki disease.” According to a study published in Lancet in December 2020, of eight children between the age of 4 and 14 years diagnosed with COVID-19-related MISC-C, three needed mechanical ventilation, and one died.[34]

The September 25, 2020, JAMA Pediatrics article reported the results of a “systematic review and meta-analysis” of studies bearing on the issue of susceptibility of children and adolescents to COVID-19 compared to adults.[35] The authors found that “[p]reliminary evidence suggests that children have a lower susceptibility to [COVID-19] infection compared with adults,” but with some significant provisos: “The degree to which children and adolescents are infected by and transmit [the COVID-19 virus] remains unclear,” “the role that children and adolescents play in transmission of this virus remains unclear,” and “[d]ata were insufficient to conclude whether transmission of [COVID-19] is lower than by adults.” One disquieting finding from the data review and analysis was that “children and adolescents younger than 20 years had 44% lower odds of secondary infection with [COVID-19] compared with adults 20 years and older.” Thus, children and adolescents have a 44% risk – not far from half – of the risk faced by those 20 years old and above.

Another article in JAMA Pediatrics, this one published on January 11, 2021, focused on state-reported rates of hospitalizations of children for COVID-19 over a six-month period. During the study period, the rate of pediatric hospitalizations for coronavirus grew dramatically, from 2 per 100,000 of all COVID hospitalizations to 17.2 by the end of the study.[36] The authors of the study concluded: “Our results present concerning trends in pediatric hospitalizations. Adult, and especially geriatric, incidence of COVID-19 continues to dominate the national picture, but pediatric populations may require resources that are not readily available across the country.” One of the study authors observed that before the study “[u]nfortunately, the message of ‘lower risk’ in children was interpreted as ‘no risk’ by many … [and] testing among children has not been wide-scale and consistent to get a good understanding of prevalence of cases and infection rates among children … Our study shows that children can get sick and hospitalized.”[37]

Illuminating data regarding the impact of COVID on children have been collected by the American Academy of Pediatrics (AAP) and the Children’s Hospital Association from data available from the individual states through their websites and other publicly available reports. In its Summary of Findings updated as of March 5, 2021, AAP found that nearly 3.17 million (3,168,274) children have tested positive for COVID-19 since the onset of the pandemic, representing 13.1% of all cases in the U.S.[38] Children were found to comprise 1.3% to 3% of reported COVID hospitalizations. And the numbers are increasing: during the two weeks between February 11 to February 25, 2021, there was a 4% increase in the cumulated number of child COVID-19 cases. In the 11 states that reported on their COVID-19 testing, children tested positive 5% to 30% of the time.

Based upon the data, AAP advocated vigorously for prioritizing the vaccination of children. On February 25, 2021, it sent a formal letter to key COVID-19 officials in the federal government urging the Biden Administration to “use every measure available to achieve authorization of COVID-19 vaccines in children as soon as can be done safely.”[39] Stressing the over 3.1 million cases of children infected with the virus during the pandemic, AAP added that the numbers were rising, with an increase of over two percentage points since November,” and stressed that “[a]mong children who have acquired COVID-19, 247 have died from the virus ….” In light of such statistics, AAP declared:

There is an urgent need for manufacturers to include children in COVID-19 vaccine trials so that our nation’s youngest citizens can benefit from the vaccine as adults have. The same focus and effort from the administration and manufacturers that was expended to enroll adults in COVID-19 vaccine trials must be replicated to enroll adolescents and younger children as soon as possible. Recent predictions from the administration that data for children under age 12 may not be available until early 2022 highlights the need to redouble our efforts to enroll younger children in COVID-19 clinical trials.

AAP issued a news release announcing its letter to Administration officials, with the subheading “AAP writes to White House leaders: Take urgent action so children are not left out of COVID-19 vaccination.” In the release, AAP President, Dr. Lee Savio Beers, commented that “we are not moving fast enough to ensure our children can benefit from these life-saving vaccines,” adding, “This is hard to fathom given how children have suffered throughout the pandemic in ways both seen and unseen. We cannot allow children to be an afterthought when they have shared so much burden throughout this pandemic.” AAP concluded: “We need to apply the same urgency to vaccinate children as we have for adults.”

The current state of CDC recommendations regarding COVID-19 vaccination of people under 20 years of age, as of this writing, is as follows:

CDC has approved the use of the Pfizer vaccine for adolescents 16 years or older, approved the Moderna vaccine for use in persons 18 years or older, and approved the Janssen/Johnson & Johnson vaccine for use for persons more than 18 years of age.[40]

The results of a recent CDC study of COVID-19 infection rates among children clarify that children are being infected at rates much higher than was previously believed, underscoring the need to make vaccines available to children below the current limits of 16 or 18 years, and that COVID cases involving children are being substantially underreported.[41] The researchers examined blood samples of children in Mississippi between the ages of two months and less than 18 years to identify the presence of COVID antibodies, and compared that with the numbers of reported cases of coronavirus among children younger than 18. They found that, while population-weighted extrapolation of the antibody specimens produced an estimate that over 113,000 children were infected, only about 9,000 COVID-19 cases had been reported during the period covered by the study – a huge disparity! The lead author of the CDC-supported report said that “[w]hile we see that younger children more commonly have milder disease with COVID-19, it turns out that there are lot more kids infected with [the virus] than case numbers indicate. … This study clearly shows that kids can be infected with the virus.”[42]

In fact, it appears, based upon the data from the study, that infection rates of “persons aged less than 18 were similar to those among persons aged 18-49 years, the age group with the highest seroprevalence during the period.”

Children and Adolescents with Disabilities

If children in general have been largely an “afterthought,” in prioritizing COVID-19 vaccination, children and adolescents with disabilities have often been a tiny footnote or disregarded entirely. Basically, until very recently, CDC has not called for prioritization of people with underlying medical conditions unless they are at least 16 years old, and many states have followed CDC’s lead. The result is that in most jurisdictions, children with disabilities have not been on the early list for vaccination no matter how severe their conditions are and how vulnerable they are to severe and even fatal COVID infection. Thus, while there has been some recognition that children with disabilities have been and are at increased risk of contracting COVID-19 and being seriously or even fatally affected by it, that fact has not translated to any precedence in obtaining COVID research or vaccine shots. Quite a few disabilities are more prevalent and more injurious in children and adolescents than in adults, and there is no reason to think, or scientific evidence to support, the idea that underlying medical conditions are always less compromising to children and adolescents than to adults. In short, a blanket adults-only standard for COVID vaccination is unwarranted and highly unfair to children and adolescents with disabilities.

III. Recent Developments and Current Status

A. Progress in Dealing with the COVID-19 Pandemic

As of the one-year anniversary, on March 11, 2021, of the official declaration that COVID-19 was a pandemic, there were signs that we may be beginning to see some rays of light at the end of the tunnel. At the moment, cases and death rates from the virus in the U.S. have begun, at least temporarily, to level out and even decrease some. Vaccinations are increasing rapidly, especially in this country, where, as of this writing, people are being vaccinated at the rate of 2.4 million per day. 41 million people (12.3%) in the U.S. are fully vaccinated, and 116 million vaccination doses have been administered. Dr. Fauci, among other medical authorities, has said that it’s now safe for vaccinated grandparents to visit their grandchildren, and to hug them, indoors without masks and social distancing.

Largely due to pressure from disability advocates and disability organizations, shortcomings of COVID-19 policies and actions regarding people with disabilities are belatedly garnering a modicum of attention and concern. CDC and some states have finally begun to recognize that people with disabilities should be given higher priority for COVID inoculation. On March 3, 2021, the Washington Post reported that CDC was now recommending that states should consider prioritizing people with disabilities.[43] The article said that in allotting vaccine appointments, ‘[t]he latest CDC guidance urges states to consider the ‘unique needs’ of people with disabilities or cognitive decline and their caretakers ….” Advocates for people with disabilities said the updated guidance is “a step in the right direction but does not go far enough.” “It doesn’t resolve the overall uncertainty and lack of clarity for people with disabilities and their families,” said Peter V. Berns, chief executive officer for the Arc of the United States, which advocates for people with intellectual and developmental disabilities.

In the same March 3, 2021, issue of the Washington Post containing the story about CDC guidance advising prioritization of people with disabilities, there was an article describing the Biden Administration’s pursuance of a “stepped-up” vaccination process in the hope of getting “every adult in America” vaccinated by the end of May (a goal the Administration subsequently moved ahead to May 1).

Change in the COVID-pandemic landscape is in the air, and things are happening rapidly. On March 11, President Biden signed the American Rescue Plan Act of 2021 into law. To speed up the country’s recovery from the economic and health effects of the COVID-19 pandemic and the ongoing recession, the new law, also referred to as the COVID-19 Stimulus Package, dedicates $1.9 trillion to support individuals, businesses, and states affected by COVID-19. Among a long list of funding programs in the Act, it provides billions of dollars for helping elementary and secondary school students return to the classroom; funding for COVID-19 vaccine distribution and administration, COVID-19 testing, contact tracing, and genome sequencing; one-year funding for Medicaid home and community-based services (HCBS);[44] and temporary increases of subsidies for people purchasing health insurance through the Affordable Care Act’s marketplace.

On the same day that he signed the American Rescue Plan Act, President Biden made a prime- time speech to the American people, in which he said he would direct states to make all Americans 18 and over eligible to get vaccinated by May 1, predicted a possible return to some semblance of normalcy for vaccinated people by the Fourth of July, and announced several measures aimed at speeding up vaccinations across the country.

B. Ongoing Flaws and Problems for People with Disabilities in COVID-19 Pandemic Efforts

Despite important progress and significant advances as the battle against the coronavirus continues, the situation is hardly a rosy one for people with disabilities. Most of the serious problems discussed previously in this essay are continuing; many of them have not even been acknowledged, much less remedied. Disability advocates are continuing to battle for safe and equitable treatment in numerous contexts.

One disquieting note for people with disabilities and many other Americans was chronicled in another article in the Washington Post on March 3, 2021, which reported that some states, led by Texas and Mississippi, shortly thereafter followed by Arkansas, Massachusetts, North Carolina, and Virginia and several others, were abandoning some or all of their coronavirus restrictions.[45] These changes, which permit those states’ residents to stop wearing masks; dine at restaurants without capacity limits; and go to bars, and sports and entertainment venues, and other gatherings that had previously been closed or restricted, raise serious concerns. The Post reported that “[t]he rush to reopen has alarmed federal health officials who believe it could threaten important progress in fighting the virus at a fragile time and open the door to another surge this spring.” There is some evidence that such surges in COVID-19 infection have already begun in some states that relaxed their restrictions.

Also problematic and disappointing is President Biden’s focus on “every adult in America” for vaccination – what about the children and particularly children with disabilities? And children in other categories that render them at greater risk from coronavirus?

The tenor of the current good news/bad news phase of the COVID-19 era is perhaps captured by several recent news events in the state of Maryland. On March 2, 2021, Governor Larry Hogan announced that, in the interest of speeding up COVID-19 inoculations, Maryland was opening up three new mass vaccination sites, and that he was threatening to take unused vaccine doses away from local health departments that did not administer all their coronavirus doses within one week and give them to other vaccine administerers.[46] These actions were in keeping with the strong push for maximizing vaccinations as soon as possible led by the Biden Administration and gaining traction in many parts of the country. A week later, on March 9, 2021, Governor Hogan announced that he was easing many coronavirus restrictions in the state, including lifting capacity limits at restaurants and opening large indoor and outdoor venues to 50% capacity – declaring prior rules null and void – while keeping in effect the state’s mask mandate. The announcement reportedly caught local officials and public health authorities unawares, leaving many Maryland jurisdictions scrambling to consult with their attorneys to assess the impact of the Governor’s edict on their local public health rules. One public health professor’s initial reaction to the unexpected announcement was, “Wow!”; she added that “[t]here is going to be risk in reopening so quickly, especially when the vast majority of Marylanders [90%] are still unvaccinated.”[47]

On the same day as Governor Hogan’s announcement of Maryland’s COVID reopening, The Arc of the United States issued a news release declaring that on the day before (March 8), The Arc of Maryland filed a lawsuit in the U.S. District Court for the District of Maryland, alleging that Baltimore City and five Maryland counties were discriminating against people with intellectual and developmental disabilities (IDD) by denying them opportunities to access COVID-19 vaccinations, in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.[48] In the case, styled The Arc Maryland v. Mayor and City Council of Baltimore Maryland, The Arc Maryland, represented by The Arc of the United States, Disability Rights Maryland, and a private law firm, alleged that “[p]eople with I/DD face heightened risk of serious illness and death from COVID-19,” and that mortality rates among people with I/DD are much higher than people without I/DD. The complaint further alleged that the defendant jurisdictions had omitted people with I/DD from their vaccine eligibility lists and from the jurisdictions’ website services associated with getting vaccinated – preregistration, registration, and telephone contact information. As a result, according to the complaint: “People with I/DD are not aware that they are eligible for the vaccine; are unable to schedule appointments, register, pre-register, or complete interest forms for Defendants’ vaccines; and are delayed or denied access to critical health care services.”[49]

The president of the board of The Arc Maryland declared that “[i]t is frustrating to have our state recognize people with IDD to be in the 1B priority group for the vaccine, only for people with IDD to be denied equitable access to the vaccine from the counties in which they live. We hope this action will result in immediate change for the benefit of all.”[50] The litigation director of Disability Rights Maryland added:

We need these localities to take immediate corrective action to fix their information; to fix forms that exclude individuals with disabilities from claiming eligibility and seeking vaccine appointments; to tell health department staff and others that people with disabilities are eligible and to assist them with obtaining the vaccine. The Americans with Disabilities Act was passed over thirty years ago with a purpose of ending historic inequities in health care. We need immediate action to protect lives.[51]

C. Much More Needs to Be Done to Achieve Equal Access to Medical Equipment, Services, Facilities, Treatment, and Vaccinations

While some things in the battle against COVID-19 would seem to be looking up, we still have a long way to go. In most states, COVID-19 vaccinations have not been, and are not being, provided to anyone under age 18, and it was only on March 16 that the Moderna drug company announced it was going to begin testing the use of its vaccine in children under 18, including infants under six months; another study of children ages 12 to 17 is already underway, with results that might be available beginning this summer (after which, if successful, the vaccine would still have to await official authorization before it could be administered) to those less than 18 years old.[52] Alarmingly, the Moderna announcement specified that the testing would only be done on “healthy children,” presumably meaning that it would not be able to provide data about the safety of vaccinating children with disabilities.

And even the notion that it’s okay for vaccinated grandparents to cuddle unvaccinated grandchildren is far from as clear as it seems. A March 18, 2021, article in the Washington Post, “A Visit to Grandma’s? Not Quite Yet: With Variants Circulating and Guidance Limited, Fear Persists after Shots,”[53] sounded a cautionary note: “It is still unclear whether vaccinated people can transmit the coronavirus, and new guidelines released … from the Centers for Disease Control and Prevention did not clearly delineate what is and is not safe for them to do.” As one 80-year-old grandmother observed, the new guidelines “make me more confused than not. It seemed to say one thing in one place, and then you read down further, it negated what you had read.” The article added:

After the pandemic began, many Americans, especially the oldest and most vulnerable, clung to the belief that a vaccine would return them to pre-coronavirus life. But after a year of surges, variants and conflicting or revised opinions from medical authorities, many are questioning – and arguing with their loved ones about – whether the vaccine will be their golden ticket back to the wider world.

Many people who had the requisite vaccine shots are still very leery of unmasked, indoor visits with unvaccinated people. The article elaborated: “[T]he promise of the current vaccines has been clouded by the rise of new variants that may elude them. And with four-fifths of Americans yet to get a first shot, vaccinated people have a hard time knowing how to protect themselves and their family members.”

The CDC guidance restricted permission to meet with (and hug) only those unvaccinated people who are at low risk of severe COVID. The implications of this limitation for meeting with people, especially children with disabilities, given that the CDC has been very hazy as to which disabilities entail high risk of severe COVID infection and that the states have been all over the board about the link between severe COVID susceptibility and disabilities, leaves people in the dark about what is safe. Is it or is it not acceptable to get together indoors without masks and hug, and perhaps smooch, your grandchildren who have asthma, quadriplegia, muscular dystrophy, cerebral palsy, multiple sclerosis, or some other disabling condition? Should grandparents and other relatives not living in the same household feel entitled to close visits with their relations, including young children who have disabilities that might render them highly susceptible to harsh consequences of COVID? Given that very, very few children have been vaccinated for COVID-19 (nor has testing been done to determine the safety of the vaccines for them), and that we do not yet know for sure if vaccinated people can pass the virus to others, isn’t there good reason to be wary of encouraging close contact without the safeguards and masks we have otherwise been requiring? Is the go-ahead-and-hug-now approach justified by scientific data or merely by nostalgic, wishful-thinking that children aren’t really at risk from the virus, and vaccinated people aren’t really very likely to spread the disease – neither of which is validated by presently available scientific evidence? Why endanger our loved ones with disabilities at this point before we have given them priority for vaccine protection? If such questions are answerable at the present time, they have not yet been answered with clarity and consistency by medical authorities or anyone else.

And who gets left holding the bag in the meantime? People with disabilities and their families.

Disability and legal rights advocates have made some important progress since the beginning of the pandemic, but the fact that these fights have been necessary on issue after issue, and in state after state, and that many of them still need to be fought, demonstrates that we’re still far from “elimination of discrimination against individuals with disabilities,” the stated purpose of the ADA. More data, research, and progress is needed in almost every aspect and phase of defeating the COVID-19 virus in a manner that achieves safety, fairness, and equity toward people with disabilities.

IV. Going Forward from Here

This essay has identified a number of ways in which measures to address the COVID-19 pandemic have shafted persons with disabilities, and analyzed how and why people with disabilities were shortchanged. As all Americans and all agencies of government and the private sector do their parts to end the pandemic and get the country back on its feet, they need to do so in a way that ensures equal justice and avoids discrimination against people with disabilities. Doing so will involve two interrelated components: (1) Recognizing and putting into action certain fundamental principles about fair and humane treatment of people with disabilities; and (2) Operationalizing policies and measures addressing the COVID-19 crisis to reflect the needs and respect the human and legal rights of people with disabilities.

A. Fundamental Guiding Principles

People with disabilities’ lives are of equal value as other peoples’ lives, and they should be treated as full and equal members of society, with equally valuable rights, dreams, and freedoms.
It is essential that people with disabilities be part of the planning, development, and implementation of policies, programs, and rules affecting them. As people with disabilities often insist, “Nothing about us without us.”
People should never be warehoused on the basis of disability. Now more than ever, we can see that it is not only discriminatory and unfair, it’s dangerous. As the Supreme Court has declared, People with Disabilities Receiving Services in Residential Facilities Must Be Served in the Most Integrated Setting Appropriate to the Needs of the Individual.
To the maximum extent possible, individuals with disabilities shall be allowed to live independently: to exercise freedom of choice; to live where and how they choose; to live within the community in the neighborhood they choose; and to decide their own pattern of life.
Health care should be available to all. It is essential for people with disabilities.
Policies, programs, and rules affecting people with disabilities must be based on evidence and verifiable data, not on misperceptions, biases, or uninformed assumptions about disability.
Prohibitions of discrimination against people with disabilities in the Americans with Disabilities Act and Section 504 of the Rehabilitation Act are fully applicable to public accommodations and state and local government entities, which include, along with a wide range of other businesses and services, medical care providers, public health agencies, and pharmacies and other prescription drug vendors. And these prohibitions are legally enforceable.

B. Rectifying COVID-19 Policy and Practice Shortcomings

People with disabilities, both adults and children, are at increased risk from COVID-19 infection. Because of their higher medical vulnerability, they need to be accorded more attention, and priority in all facets of addressing the COVID pandemic.
The existence of pervasive, detrimental bias and discrimination on the basis of disability in medical care has been and is an indisputable reality that makes people with disabilities more at risk from COVID infection. Preventing people with disabilities from having a fair and equal chance of obtaining protective measures and equipment, medical treatments, timely COVID-19 vaccination, and other benefits and services for avoiding infection; and not treating the disease effectively, thereby lessening its short and long-term health consequences, put people with disabilities at unnecessary risk.
It is essential that decisions about treatment and vaccine allocation must be made fairly, based on individualized determinations using current objective medical evidence, and not based on generalized inaccurate assumptions about a person’s disability, or metrics that are unfairly weighted against people with disabilities.
To improve medical misperceptions of people with disabilities and their lives, physicians and other medical personnel need more training and information about disability and first-hand experience with people with disabilities; medical and nursing schools, and related educational institutions and programs should include disability topics and familiarization as substantial parts of their curricula. Moreover, they should make earnest and sustained efforts to recruit students with disabilities and to hire people with disabilities in medical care positions. The article “Physicians’ Perceptions of People with Disability and their Health Care” included a finding that “[a]ll levels of medical education should include more training about disability, including disability cultural competence and etiquette. Training that provides greater empathy about patients’ daily lives, such as house calls or standardized patients who have disability, might offer important insights.”[54]
The lists of “People with Certain Medical Conditions,” that were developed by CDC and applied by the states, and ultimately became a category of people given some priority for COVID-19, were incomplete, confusing, and unfair to people with various disabling conditions. Health authorities should refine and expand the lists of medical conditions that make people more susceptible to, and more at risk of severe harm or death from, the coronavirus, making them more inclusive, clear, and disability-informed.
Determining eligibility and priority of people with disabilities for vaccination, treatment, and testing should not be made in a restrictive, technical manner. Some states are now taking people’s assertions of disability at face value, without demanding burdensome, or any, documentation. Giving people claiming to have disabilities the benefit of the doubt in lieu of unwieldy scrutiny would not seriously interfere with our nation’s goal of getting everybody inoculated as soon as possible.
More awareness of and sensitivity to disability. and a bit of creativity, could have enabled health authorities to devise more manageable ways to identify and confirm individuals’ disabilities. The issue of establishing disability involves some complexity, including sensitivity about self-identification and “invisible disabilities,” but it might have been addressed more effectively with some relatively simple ideas, along with soliciting and following the advice and input of people with disabilities and disability organizations. Perhaps, for example, people could be allowed to establish their disabilities by producing a Social Security Disability Insurance (SSDI) number, an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA), an Individualized Rehabilitation Plan under the federal Rehabilitation Act, documentation that they have Disabled Veterans status, or perhaps even a disability parking sticker. And the documents listed here are certainly not all-inclusive. Such approaches based on long-standing government-based designations should be considered as soon as possible.
Very little testing and study of people with disabilities have been done to determine the prevalence, riskiness, and progression of COVID-19. Particularly lacking is solid scientific information regarding children with disabilities. Data from such research and tracking is sorely needed to ensure optimal protection for persons with disabilities, and should be made an urgent priority.
Although standards are beginning to evolve rapidly, current COVID-19 vaccination eligibility in most jurisdictions, and under CDC recommendations, is limited to people aged 18 or over, or 16 in a few circumstances. Studies of the safety and effectiveness of inoculating younger children is only in the beginning stage. Lack of urgency for vaccinating adolescents, children, toddlers, and infants has been explained on facile assumptions of a lack of risk of infection and serious harm for younger people, not fully justified by available data. The blanket adults-only policies are unfair and perilous for the nation’s children, and particularly risky for children with disabilities. Vaccination of everyone under 18 needs to become a most urgent priority as soon as possible.
Often unnoticed by many people without disabilities are barriers to equal participation by people with disabilities in accessing to COVID-19 medical treatment, vaccinations, and research, posed by inaccessible websites and facilities. People seeking to use online resources to obtain information, identify treatment and vaccination options, schedule appointments, etc., are stymied when COVID-19-related websites are not in compliance with accessibility standards, are not user-friendly, or are otherwise inaccessible to users with various disabilities. Likewise, people with disabilities trying to obtain treatment, vaccination shots, testing, or other services at a hospital, doctor’s office, clinic, other medical service facility, pharmacy, and the like, find that they cannot get into the facility or get served there because of architectural or communications barriers. Full and equal access must be a baseline prerequisite for all COVID-19 services and programs.
The necessity for some people to have direct support assistance has not been adequately recognized and accommodated in relation to COVID-19 treatment and vaccination requirements. Some people with disabilities have a condition that makes them eligible for priority vaccination, but no priority was given to direct support personnel who provide home and community-based services for them. Conversely, in other circumstances, some people with disabilities have not been able to obtain inoculation even though their personal and medical care support personnel have been able to. Whether they reside in nursing homes, other kinds of congregate living facilities, or in the community, people should be permitted to have and be accommodated in having, their necessary personal and medical care support assistance, and their support personnel should be eligible for priority vaccination.
Overall data collection regarding people with disabilities and their susceptibility to COVID-19 infection and its severe consequences, the safety and other consequences of their being inoculated, and of the medical and personal treatment they have received, has been paltry. And research studies in regard to children with disabilities and COVID treatment and vaccination have been few. Given the complexities of and serious consequences at stake with COVID infection in people with disabilities, it is of the utmost importance to have more and better research and collection of other types of data on the interplay between the coronavirus and children and adolescents with disabilities.
Consultation and involvement of people with disabilities in the development of crisis care standards, vaccine prioritization, and other policies, programs, and guidance dealing with the COVID-19 crisis has been very much “too little, too late.” For people with disabilities, it is absolutely necessary and should be standard operating procedure and an expected facet of all policies, programs, and transactions for addressing the pandemic, that there should be “Nothing about us without us.” Accordingly, people with disabilities must be part of the planning, development, and implementation of all prevention, treatment, immunization, and support policies, protocols, and delivery systems for addressing the virus and its consequences.

C. Conclusion

As people with disabilities are very aware, they have had a hard way to go during the COVID-19 pandemic. Through no fault of their own, on average they have faced more risk than people without disabilities of contracting COVID-19, and, if they do, of having severe symptoms, of being hospitalized, of having to be put on a ventilator, and of dying from the disease. In addition to dangers from the virus itself, and the disruptions to normal life it has entailed, many people with disabilities have been subjected to egregious forms of discrimination, described in this essay, that have heightened the hardships and risks they face. Rectification of these injustices is overdue and essential. In the apt words of the Lauren Young, litigation director of Disability Rights Maryland: “The Americans with Disabilities Act was passed over thirty years ago with a purpose of ending historic inequities in health care. We need immediate action to protect lives.”[55]

Many thanks to my trusty editor and wonderful life partner, Andi Farbman.

END NOTES

[1] National Council on Disability, “COVID-19 Letter to HHS Office for Civil Rights” (March 18, 2020), found at https://ncd.gov/publications/2020/ncd-covid-19-letter-hhs-ocr

[2] The passage is derived from Robert Burgdorf, The Legal Rights of Handicapped Persons, (1980) p. 51. It has been widely quoted in whole or in part.

In first introducing the Americans with Disabilities Act in the Senate on April 28, 1988, Senator Lowell Weicker cited the quoted language on the first page of his introductory Floor Statement.

[3] DEMOCRACY NOW, February 9, 2021, Disabled Advocates Demand Better Vaccine Access as They Face Greater Risks of Dying from COVID-19, at https://www.democracynow.org/

[4] CDC, People with Certain Medical Conditions, updated Feb. 3, 2021, found at https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

[5] Tim Jin, “Op-Ed: Why is California’s age-based COVID-19 vaccine policy overlooking disabled people like me?” Los Angeles Times (Jan. 29, 2021), at https://www.latimes.com/opinion/story/2021-01-29/covid-vaccine-disabled-people-priority

[6] Bazelon Center for Mental Health Law, Lawyers Committee for Civil Rights under Law, DREDF, The Arc, Center for Public Representation, Autistic Self Advocacy Network, Justice in Aging, CUNY School of Law, National Disability Rights Network, Natalie M. Chin, & Jasmine Harris, “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients” (Feb. 2021), at http://www.bazelon.org/wp-content/uploads/2021/02/FINAL-Intersectional-Guide-Crisis-Care-PDF.pdf

[7] National Council on Disability, Assisted Suicide: A Disability Perspective (March 24, 1997), at https://ncd.gov/

[8] Id., at https://ncd.gov/publications/, quoting U.S. Comm’n on Civil Rights, Accommodating the Spectrum of Individual Abilities 26 (1983).

[9] Joseph Shapiro, “People with Disabilities Fear Pandemic Will Worsen Medical Biases” (Apr. 15, 2020) found at https://www.npr.org/

[10] Bazelon Center for Mental Health Law, Lawyers Committee for Civil Rights under Law, DREDF, The Arc, Center for Public Representation, Autistic Self Advocacy Network, Justice in Aging, CUNY School of Law, National Disability Rights Network, Natalie M. Chin, & Jasmine Harris, “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients” (Feb. 2021), p. 4, found at http://www.bazelon.org/wp-content/uploads/2021/02/FINAL-Intersectional-Guide-Crisis-Care-PDF.pdf

[11] Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell, “Physicians’ Perceptions of People with Disability and their Health Care,” Health Affairs, vol. 40, no. 2 (Feb. 1, 2021), found at https://www.healthaffairs.org/

[12] Corky Siemaszco, “New York Gov. Cuomo Facing Calls to Apologize for Undercounting COVID-19 Nursing Home Deaths,” NBC News (Feb. 16, 2021), found at https://www.nbcnews.com/news/us-news/new-york-gov-cuomo-facing-calls-apologize-undercounting-covid-19-n1258053

[13] Bazelon Center for Mental Health Law, Lawyers Committee for Civil Rights under Law, DREDF, The Arc, Center for Public Representation, Autistic Self Advocacy Network, Justice in Aging, CUNY School of Law, National Disability Rights Network, Natalie M. Chin, & Jasmine Harris, “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients” (Feb. 2021), at p. 6, found at http://www.bazelon.org/wp-content/uploads/2021/02/FINAL-Intersectional-Guide-Crisis-Care-PDF.pdf

[14] Laura Guidry‐Grimes, Katie Savin, Joseph A. Stramondo, et al., “Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care,” The Hastings Center Report (June 29, 2020), found at https://onlinelibrary.wiley.com/

[15] Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell, “Physicians’ Perceptions of People with Disability and their Health Care,” Health Affairs, vol. 40, no. 2 (Feb. 1, 2021), found at https://www.healthaffairs.org/

[16] Corky Siemaszco, “New York Gov. Cuomo Facing Calls to Apologize for Undercounting COVID-19 Nursing Home Deaths,” NBC News (Feb. 16, 2021), found at https://www.nbcnews.com/news/us-news/new-york-gov-cuomo-facing-calls-apologize-undercounting-covid-19-n1258053

[17] CDC, CDC’s COVID-19 Vaccine Rollout Recommendations, updated Feb. 19, 2021, found at https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations.html (emphasis added).

[18] CDC, People with Certain Medical Conditions, updated Feb. 3, 2021, found at https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

[19] Id. The lists also include the activity of smoking and the condition of pregnancy that would not usually be considered to be disabilities in and of themselves.

[20] National Council on Disability, Assisted Suicide: A Disability Perspective (March 24, 1997), at https://ncd.gov/publications/1997/03241997#4b4

[21] Bazelon Center for Mental Health Law, Lawyers Committee for Civil Rights under Law, DREDF, The Arc, Center for Public Representation, Autistic Self Advocacy Network, Justice in Aging, CUNY School of Law, National Disability Rights Network, Natalie M. Chin, & Jasmine Harris, “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients” (Feb. 2021), at pp. 4-5, found at http://www.bazelon.org/wp-content/uploads/2021/02/FINAL-Intersectional-Guide-Crisis-Care-PDF.pdf

[22] Cecilia Nowell, “This Women-Made Tool Could Help to Get More Disabled People Vaccinated: States Aren’t Prioritizing the Disabled Community, Advocates Say,” The Lily (Feb. 25, 2021), found at https://www.thelily.com/this-women-made-tool-could-help-get-more-disabled-people-vaccinated/

[23] Liz Bowen, Whose Underlying Conditions Count for Priority in Getting Vaccine? Scientific American (February 6, 2021), at https://www.scientificamerican.com/ ; DEMOCRACY NOW, February 9, 2021, Disabled Advocates Demand Better Vaccine Access as They Face Greater Risks of Dying from COVID-19, at https://www.democracynow.org/

[24] National Council on Disability, NCD Letter to NGA re: Vaccine Allocation (Feb. 9, 2021) at https://ncd.gov/newsroom/2021/ncd-makes-recommendations-national-governors-association-covid-19-vaccination-equity

[25] Michael Diament, People with Developmental Disabilities at Highest Risk of Death from COVID-19, Study Indicates, Disability Scoop (November 16, 2020); Michael Diament, COVID-19 Vaccine Should Go to Those with Developmental Disabilities First, Advocates Say, Disability Scoop (December 7, 2020), at https://www.disabilityscoop.com/ ; Roni Caryn Rabin, Developmental Disabilities Heighten Risk of COVID Death. by Roni Caryn Rabin., The New York Times, November 11, 2020, at https://www.nytimes.com/ ; Scott Landes, Margaret Turk, Margaret Formica, Katherine McDonald, & J. Dalton Stevens, COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State, Elsevier Public Health Emergency Collection (October 13, 2020), at https://www.ncbi.nlm.nih.gov/ ; Stetson Miller, Experts: Those with Intellectual, Developmental Disabilities 3 Times more Likely to Die from COVID-19, Baltimore (WJZ), January 12, 2021, at https://baltimore.cbslocal.com/

[26] National Council on Disability, NCD Recommends COVID-19 Vaccine Allocation Equity for Individuals with I/DD (Dec. 15, 2020), found at https://ncd.gov/newsroom/2020/ncd-recommends-covid-19-vaccine-allocation-equity-individuals-idd

[27] American Network of Community Options and Resources (ANCOR), The Implications of State COVID-19 Vaccine Distribution Plans for People with Intellectual & Developmental Disabilities (December 2020), at https://www.ancor.org/

[28] National Council on Disability, NCD Letter to NGA re: Vaccine Allocation (Feb. 9, 2021) at https://ncd.gov/newsroom/2021/ncd-makes-recommendations-national-governors-association-covid-19-vaccination-equity (emphasis added).

[29] Sonia Sharp, Californians with Disabilities Are Outraged over Vaccine De-Prioritization, Los Angeles Times (February 2, 2021), at https://www.latimes.com/california/story/2021-02-02/disabled-californians-outraged-vaccine-de-prioritization ; Elliot Kukla, Where’s the Vaccine for Ableism?, New York Times, Feb. 4, 2021, at https://www.nytimes.com/2021/02/04/opinion/covid-vaccine-ableism.html ; Sammy Caiola, “As California Makes Age a Bigger Factor in When You Get Vaccinated, People with Disabilities Are Concerned,” CAPRADIO, (Jan. 28. 2021) at https://www.capradio.org/articles/2021/01/28/as-california-makes-age-a-bigger-factor-in-when-you-get-vaccinated-people-with-disabilities-are-concerned/

[30] Nouran Salahieh, Lauren Lyster, & Megan Telles, “Californians with Certain Health Conditions, Disabilities Can Now Sign Up for COVID-19 Vaccine, KTLA (Mar. 15, 2021), found at https://ktla.com/news/california/californians-with-certain-health-conditions-disabilities-can-now-sign-up-for-covid-19-vaccine/+

[31] Catherine Ho & Matthias Gafni, “Bay Area Counties Open Vaccines to All Adults with Disabilities and Health Conditions, But Access Is Spotty,” San Francisco Chronicle (March 15, 2021), found at https://www.sfchronicle.com/local/article/Bay-Area-counties-open-vaccines-to-all-adults-16027731.php

[32] MaryBeth Musumeci and Priya Chidambaram, “COVID-19 Vaccine Access for People with Disabilities, Kaiser Family Foundation (March 1, 2021), found at https://www.kff.org/medicaid/issue-brief/covid-19-vaccine-access-for-people-with-disabilities/

[33] CDC, “Information for Pediatric Healthcare Providers” (updated Dec. 30, 2020), found at https://www.cdc.gov/

[34] Suriya Rehman, Tariq Majeed, Mohammad Azam Ansari, and Ebtesam A. Al-Suhaimi, “Syndrome Resembling Kawasaki Disease in COVID-19 Asymptomatic Children,” Journal of Infection and Public Health (Dec. 2020) Vol 13 no. 12, pp. 1830–1832, found at https://www.ncbi.nlm.nih.gov/, citing Riphagen S., Gomez X., Gonzalez-Martinez C., Wilkinson N., Theocharis P. Hyperinflammatory shock in children during COVID-19 pandemic. Lancet (London, England) 2020, vol. 395(no. 10237): pp. 1607–1608, found at https://www.ncbi.nlm.nih.gov/

[35] Russell M. Viner, Oliver T. Mytton, Chris Bonell, et al, “Susceptibility to SARS-CoV-2 Infection Among Children and Adolescents Compared with Adults: A Systematic Review and Meta-Analysis,” JAMA Pediatrics (September 25, 2020), vol. 175, no. 2, 143-156, found at https://jamanetwork.com/

[36] Zachary Levin, Kimberly Choyke, Archelle Georgiou, et al., “Trends in Pediatric Hospitalizations for Coronavirus Disease 2019,” JAMA Pediatrics (published online January 11, 2021, found at https://jamanetwork.com/

[37] Ken Downey Jr., “Rate of Pediatric COVID-19 19 Hospitalizations Has Increased,” Healio (Jan. 11, 2021), (quoting Professor Pinar Karaca-Mandic), found at https://www.healio.com/news/

[38] American Academy of Pediatrics, Children and COVID-19: State Level Data Report (updated Mar. 5, 2021) found at https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/children-and-covid-19-state-level-data-report/

[39] American Academy of Pediatrics, Letter to Jeffrey Zients, Dr. Anthony Fauci, Dr. David Kessler, and Dr. Janet Woodcock (Feb. 25, 2021), found at https://downloads.aap.org/

[40] See, AAP, COVID-19: Frequently Asked Questions About COVID-19 Vaccine (updated as of March 2, 2021), found at https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/covid-19-vaccine-frequently-asked-questions/

[41] Charlotte V. Hobbs, Jan Drobeniuc, Theresa Kittle, et al.. “Estimated SARS-CoV-2 Seroprevalence Among Persons Aged <18 Years — Mississippi, May–September 2020,” CDC, MMWR Morb Mortal Wkly Rep 2021;70:312–315 (Mar. 5, 2021), found at https://www.cdc.gov/

[42] Sam Cohen, “CDC Study: COVID-19 More Prevalent in Children Than Originally Thought,” News5 Cleveland (Mar. 4, 2021) found at https://www.news5cleveland.com/

[43] Lena H. Sun, “CDC: States Should Prioritize People with Disabilities to Receive Vaccine Access,” The Washington Post, March 3, 2021, at p. A6; online under the title “CDC: States should prioritize people with disabilities as they broaden vaccine access,” at https://www.washingtonpost.com/

[44] States can receive a 10% increase in their Federal Medical Assistance Percentage (FMAP) for federal matching funds. States will be required to implement or expand one or more activities to enhance HCBS. This should result in a total of almost $12.7 billion of dedicated funding to strengthen and expand access to Medicaid HCBS.

[45] William Wan, Brittany Shammas, Ashley Parker, and Laura Meckler, “Biden Puts Accelerated Timeline on Shot Supply,” The Washington Post, March 3, 2021, at p. A1; continued on page A6 under the subtitle “Worries of Setback Grow as States Loosen Their Restrictions.”

[46] Lola Fadulu, Erin Cox, and Rebecca Tan, “Maryland to Prioritize Vaccines for Health Departments Quickly Administering Doses,” The Washington Post (Mar. 2, 2021), found at https://www.washingtonpost.com/

[47] Alex Mann and Bryn Stole, “Maryland COVID Reopening: State to Lift Limits at Restaurants, Stores; Large Venues to Allow 50% Capacity,” the Baltimore Sun (Mar. 9, 2021) (quoting Dr. Leana Wen of George Washington University), found at https://www.baltimoresun.com/coronavirus/bs-md-hogan-coronavirus-update-20210309-eqevuamwdba7dg34pzsy5trwea-story.html

[48] The Arc of the United States, “Vaccine Discrimination: Disability Advocates File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process” (March 9, 2021), found at https://thearc.org/vaccine-discrimination-disability-advocacy-groups-file-federal-lawsuit-alleging-6-maryland-jurisdictions-discriminate-in-vaccine-process/

[49] Complaint in The Arc Maryland v. Mayor and City Council of Baltimore Maryland, case no. 1:22-cv-00593-CLR (filed Mar. 8, 2021) at pp. 3-4.

[50] The Arc of the United States, “Vaccine Discrimination: Disability Advocates File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process” (March 9, 2021) (quoting Ray Marshall) found at https://thearc.org/vaccine-discrimination-disability-advocacy-groups-file-federal-lawsuit-alleging-6-maryland-jurisdictions-discriminate-in-vaccine-process/

[51] Id., quoting Lauren Young.

[52] Denise Grady, “Moderna Begins Testing COVID Vaccine in Babies and Children,” New York Times (Mar. 16, 2021) found at https://www.nytimes.com/ 2021/03/16/health/moderna-covid-vaccine-children.html

[53] Tara Bahrampour & Samantha Schmidt, “A Visit to Grandma’s? Not Quite Yet: With Variants Circulating and Guidance Limited, Fear Persists after Shots,” Washington Post, p. B1 (Mar. 18, 2021).

[54] Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell, “Physicians’ Perceptions of People with Disability and their Health Care,” Health Affairs, vol. 40, no. 2 (Feb. 1, 2021) (footnotes omitted), found at https://www.healthaffairs.org/

[55] The Arc of the United States, “Vaccine Discrimination: Disability Advocates File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process” (March 9, 2021), (quoting Lauren Young), found at https://thearc.org/vaccine-discrimination-disability-advocacy-groups-file-federal-lawsuit-alleging-6-maryland-jurisdictions-discriminate-in-vaccine-process/