NCD comments to National Academies on preliminary COVID-19 vaccine allocation framework

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BY ELECTRONIC TRANSMISSION

September 9, 2020

Re: Comments on the Discussion Draft of the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine

These comments are submitted by the National Council on Disability (NCD), an independent, nonpartisan federal agency charged with advising the Administration, Congress, and federal agencies on disability policy.

A.       The framework should include a clear statement that people with disabilities have a federally protected right to equally access healthcare.

While the framework references equity, and ethical principles of fair distribution of healthcare in times of scarcity, and includes mentions of some protected classes and mitigation of inequities, it does not specifically include people with disabilities as a federally protected class, nor recognize the significant health disparities experienced by this population that are, in large part, due to longstanding physical and attitudinal barriers to healthcare (healthcare inequity). It is imperative that the framework include these facts and make a clear statement that the Federal Government, States and the medical establishment may not discriminate against people with disabilities in policies or provision of the vaccine. This is a necessary part of the framework to help prevent further discrimination in COVID-19 care – since March 2020, people with disabilities have been targeted for discriminatory treatment through state and hospital policies that seek to deny or limit lifesaving care. Such utilitarian policies have resulted in an outcry from the disability community as violative of their rights to healthcare under federal law, lawsuits, and complaints filed with Health and Human Services (HHS’) Office for Civil Rights (OCR).

The pandemic struck the U.S. just months after NCD published a report series on bioethics and disability which described the longstanding healthcare discrimination experienced by people with disabilities. This treatment is influenced by the prevalent belief by policymakers and the medical profession that a disability makes a life less valuable. The more significant the disability, the more this value judgment comes into play, and the more it has endangered the lives of people with disabilities. This devaluation is responsible for a long history of medical discrimination, as non-medical considerations seep into medical decisions and healthcare policies that result in denying necessary care.

The report findings were quickly validated in the early days of the pandemic. Physicians and ethicists warned unapologetically that the U.S. healthcare system lacked the capacity to provide care to every COVID-19 patient and people with disabilities and the elderly would likely be deprioritized for life saving care or denied care completely. At the same time, States began developing and revising their Crisis Standards of Care - plans describing which patients should receive care if rationing became necessary. Some explicitly provided that physicians should not provide care to people with certain disabilities while others put them at the back of the line for care. Some state plans allowed ventilators to be taken from a person with a disability for use by a non-disabled person. These plans were shocking given that people with a variety of disabilities were most likely to experience the most severe symptoms and death from the virus.

In March, NCD communicated its concerns to OCR, requesting the quick issuance of guidance to make clear that, under federal law, people with disabilities had the right to receive nondiscriminatory care. OCR issued a bulletin on March 28 on the civil rights responsibilities of healthcare providers during the COVID-19 pandemic that detailed responsibilities for non-discrimination under the Americans with Disabilities Act (the ADA) and other federal laws. OCR made clear that treatment decisions must be made consistent with federal law - based on an individualized assessment of the patient based on objective medical evidence – not influenced by stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities. This guidance served an important purpose, but even its issuance has not completely stopped the development of discriminatory COVID-19 policies across the nation, and OCR continues to receive complaints alleging that states and hospitals across the nation are discriminating in access to COVID-19 care under the ADA, Section 504 of the Rehabilitation Act (Section 504), and the Affordable Care Act (the ACA). Several federal lawsuits have also been filed alleging discrimination in access to COVID-19 care for people with disabilities.

States and the medical establishment need to hear a consistent, clear message from HHS on their responsibilities to provide nondiscriminatory access to healthcare. The framework should make clear that under federal law, policies and frameworks for providing the vaccine must not discriminate against people with disabilities.

B.       People with disabilities living in group homes for people with physical or mental disabilities should be added to Phase 1 based on COVID-19’s severe impacts on this population.

Several advocacy organizations contacted NCD with concerns about placement of this population in Phase 2. We agree with their concerns. Although most of the media focus has been on the impacts of the virus on older nursing home residents, residents of group homes, like residents of nursing facilities, have contracted the virus and died in high numbers, and placing them in Phase 2 leaves them in a dangerous situation for an indefinite period of time. Data collections are incomplete for group homes, so it is impossible to know the number of deaths, but a recent study found that people with intellectual and developmental disabilities living in group homes are four times as likely as others to contract COVID-19 and twice as likely to die from it. In part, this is due to higher rates of respiratory diseases and other comorbidities among people with intellectual and developmental disabilities that make them more vulnerable to the virus.

New York Protection and Advocacy shared a clear description of the issues facing this population in New York and the impacts thus far:

According to New York’s Office for People with Developmental Disabilities (OPWDD), as of July 29, 2021, two thousand six hundred and thirty (2,630) individuals with I/DD living in congregate care settings have contracted COVID-19 and 444 of them have died.  There was a 223% increase in deaths of I/DD group home residents in the first three months of the pandemic (March-May) compared to the same time period in 2019.  Researchers evaluating New York’s I/DD group homes found that this population was at a greater risk from COVID-19 for every aspect of the pandemic - more likely to contract COVID-19, more likely to be hospitalized, and more likely to die than members of the population as a whole. 

By their nature, group homes for individuals with disabilities differ from other congregate care settings, and present unique risks to residents in the current pandemic. Most group homes operate with shared bedrooms and bathrooms. Residents are in close proximity to one another during every portion of their daily lives. Individuals often require intimate personal care from staff, may be unable to understand social distancing and handwashing recommendations, and may be unable to tolerate wearing Personal Protective Equipment (PPE). These homes also differ from more institutionalized settings such as nursing facilities and prisons/jails, in that residents have the right and the ability to access their local communities, to work outside the residence, and to have visitors from outside the home, which increases the risk of exposure to all. In many areas, day habilitation programs are opening up again, meaning that these individuals will be interacting with more staff and residents of other homes. In the group home, residents eat communally and gather in common areas. Even if those who are older or have more underlying conditions are restricted to their homes, if unvaccinated, they risk being exposed by housemates to whom those restrictions would not apply.

Additionally, efforts to transition residents to settings where they will be safer are largely non-existent.

Lastly, in regard to healthcare equity, because everyone residing in an institutionalized or congregate setting is at an extremely high risk of contracting COVID-19, people in prisons, jails, detention centers and the staff that work there should also be placed in Phase 1. It is important to note that much of the population of incarcerated people are in high risk groups for severe impacts and death from the virus: people of color, people with disabilities, and people who are older/elderly, further supporting the need for their inclusion in Phase 1.

C.       The category in Phase 1b – “Older adults living in congregate or overcrowded settings” should be revised to clarify that persons of any age that live in such settings, can receive the vaccination, not just older adults.

Not all residents of congregate settings, particularly nursing homes and skilled nursing facilities are older/elderly, and the current wording would result in denial of vaccinations for those residents. For example, many non-elderly people with physical disabilities reside in such facilities due to a lack of community-based living options, or because they were displaced from their homes due to natural disasters.  As a result, they are unable to return to accessible housing in their community. Revising the wording will ensure that people of any age living in such settings can receive a vaccination in Phase 1.

Thank you for the opportunity to provide comments on this important preliminary framework. We believe that these recommendations will help make the final framework one that recognizes the healthcare inequities experienced by people with disabilities and ensures that the most vulnerable are included in Phase 1 of the COVID-19 vaccinations. Should you wish to discuss these comments, please contacts Joan Durocher, General Counsel and Director of Policy, at jdurocher@ncd.gov.