hospital equipment

Balancing Health Care Rationing and Disability Rights in a Pandemic

By Yolanda Bustillo and Rachel Perler

Amid the present surge of the coronavirus pandemic, it is crucial that disability rights are a factor in the development of triage protocols.

During the last week of December, the CDC recorded a record of 225,269 new coronavirus cases and 118,948 total hospitalizations. Health care systems across the country have predicted that they soon may face shortages of ventilators, personal protective equipment (PPE), and other limited resources.

In Utah, for example, hospital administrators have implemented informal triage protocols that prioritize patients based on health status, clinical factors, and the time sensitivity of their needed procedures. Hospitals in California have similarly begun rationing care.

If these dire circumstances worsen, hospital systems may apply triage protocols that deviate from best practices and impermissibly discriminate against people with disabilities.

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(Institute for the feeble-minded, Lincoln, Ill. / Library of Congress)

Why Buck v. Bell Still Matters

By Jasmine E. Harris

In 1927, Buck v. Bell upheld Virginia’s Eugenical Sterilization Act, authorizing the state of Virginia to forcibly sterilize Carrie Buck, a young, poor white woman the state determined to be unfit to procreate.

In less than 1,000 words, Justice Oliver Wendell Holmes, writing for all but one of the Justices of the Court, breathed new life into an otherwise fading public eugenics movement.

More than 70,000 people (predominantly women of color) were forcibly sterilized in the twentieth century.

Buck is most often cited for its shock value and repeatedly, for what is, perhaps, its most famous six words: “Three generations of imbeciles are enough.” While this may be the most provocative language in the opinion, it is not the most noteworthy.

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Oxygen mask as part of artificial lungs ventilation machine in surgery room, closeup.

Arizona’s Crisis Standards of Care and Fair Allocation of Resources During COVID-19

By Govind Persad

As COVID-19 cases spiked in Arizona, the state activated its crisis standards of care, which provide triage guidelines if absolute scarcity arises.

Arizona has done the right thing by adopting crisis standards of care instead of leaving these decisions about ventilators to be made ad hoc by medical staff, which presents the risk both of arbitrary and biased decisions and of greater distress for clinical staff who are forced to make decisions without a guidance framework.

Arizona’s activation of its crisis standards of care stands in contrast to most other states’ response to the pandemic, including New York, which ultimately did not activate its crisis standards of care. Even though Arizona and other states have not yet reached the stage of absolute scarcity where triage policies are invoked—and hopefully will take steps to avoid reaching it—the move has prompted discussions about fair triage policies and criticisms from some community organizations.

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Stacks of books against a burgundy wall

Announcing The Journal of Philosophy of Disability 

The Journal of Philosophy of Disability (JPD) is a new journal devoted to the philosophical study of disability.

Disability is central to human life. As the slogan from disability studies goes: “disability is everywhere, once you know how to look for it.” After a steady stream of scholarship from the 1990s onward, work in the field of philosophy of disability has expanded exponentially. Despite this explosion, there has never been a peer-reviewed journal devoted to scholarship in the field of philosophy of disability. Until now.

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mask

The Disparate Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities

By James W. Lytle

Katrina Jirik’s compelling post on the dangers posed to people with disabilities if care is rationed during the COVID-19 pandemic powerfully characterizes discriminatory allocation criteria as a form of “updated eugenic thought” that cannot be reconciled with the Americans with Disabilities Act and other anti-discrimination statutes.

I worry, however, that persons with disabilities and other vulnerable populations face an even graver threat:  policymakers may unintentionally adopt policies that neglect to consider the unique needs of persons with disabilities and inadvertently place them at much greater risk.

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empty hospital bed

Disability and Rationing of Care amid COVID-19

By Katrina N. Jirik, PhD

As health care resources grow increasingly scarce amid the COVID-19 pandemic, states, hospitals, and individuals are forced to make tough decisions about the rationing of care. These decisions are often framed in terms of medical and/or legal criteria. However, many people, especially the physicians who make the difficult decisions, realize they have a huge moral component related to perceptions of the value of an individual’s life.

Various states have triage guidelines in place, which differ somewhat, but primarily reflect a utilitarian goal of saving the most people with the least expenditure of finite resources. This is where the societal issue of the value of the life of a person with a disability comes into play.

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hospital equipment

How Triage During COVID-19 Can be Fair to Patients with Disabilities

By Govind Persad

On March 28, 2020, the Department of Health and Human Services issued guidance regarding the application of antidiscrimination law to triage policies — that is, policies for fairly allocating scarce medical treatments, like ventilators, in the COVID-19 pandemic.

Many news outlets incorrectly portrayed HHS as prohibiting triage guidelines from considering disability. But the guidance is more nuanced.

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New technologies are empowering persons with disabilities. But are they Assistive?

Consumer tech has reduced daily friction for countless individuals, making it easier to control households, shop for groceries, and connect with loved ones. These technologies can be especially empowering for persons with disabilities, increasing accessibility and resolving frustrations of everyday activities. You may have seen related news in press releases and popular headlines: “Alexa is a Revelation to the Blind,” “Disabled Americans Deserve the Benefit of Self-Driving Cars,” “Amazon Alexa Can Help People With Autism Do More On Their Own.”

But are these technologies assistive? Disability nonprofit Understood.org defines assistive technology as “any device, software, or equipment that helps people work around their challenges.” Classifying a device or software as assistive technology (and/or related regulatory labels) can lead to insurance coverage and tax incentives. It can change how devices are viewed in healthcare settings and impact product research and design. In this article, we speak with bioethicist and disability scholar Dr. Joseph Stramondo about how to define assistive technologies in today’s consumer tech revolution. 

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Group of people of various ages and ethnicities sitting in a circle talking. At least one of the people is in a wheelchair.

Rethinking Inclusivity in Precision Medicine Research: The Disability Experience and Barriers to Participation

By Maya Sabatello and Paul S. Appelbaum

One of the most important aspects of precision medicine research is its focus on inclusion of diverse groups. The reality is that without cohort diversity, it will be impossible for precision medicine research to deliver on its promise to provide prevention and therapeutic options that are tailored to each individual’s genetic makeup, environment, and lifestyle choices across diverse groups. And, as the scientific community, including the national All of Us Research Program, increasingly has come to realize, for precision medicine to reduce—rather than magnify—health disparities, it is critical to ensure that historically marginalized communities are included in this research endeavor. Read More

The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Read More