In the midst of the ongoing Covid-19 pandemic, child neurologist, cancer and stroke survivor, Diana Cejas, shared to Twitter in August 2020: “I worry that my doctors won’t believe me. Every time. Every appointment. Every doctor. Even the ones with whom I have a good relationship. Why? Because once, when I was sick and needed them the most, my doctors did not believe me.” Cejas, a woman of color, found a lump on her neck that turned out to be a malignant tumor. When she asked her doctors about it, “They continually reassured me that nothing was wrong or that I was worrying about something when I shouldn’t be,” she recalled. A number of Twitter users responded to Cejas’s story with similar claims of confrontations with medical providers who were dismissive of their symptoms from what turned out to be debilitating illnesses.
The medical field has a history of discriminatory biases that view, for example, disabilities as a health issue that needs to be resolved, and assume Black people are considered more resistant to pain, which has contributed to the inequitable care and treatment that these communities receive.
The issue of medical bias, and the consequential culture of distrust towards healthcare providers, is now more urgent since it has been found that those with intellectual and developmental disabilities (IDD) are three times more likely to die if they are diagnosed with Covid-19 compared to others, according to The New York Times. Although those surveyed were enrolled in private Medicare plans, the database did not include patients on Medicaid, the government plan for low-income earning people that covers one in 35 individuals with intellectual and developmental disabilities (IDD). For a vast majority of those with IDD who receive Medicaid and live in congregate settings, the Covid-19 case-fatality rate is much higher, according to a recent California study reported in Disability Scoop.
States must turn to their state-wide Crisis Standards of Care (CSC) guidelines when determining which groups of people with critical needs will be considered high-priority in the Covid-19 vaccine allocation. Crisis standards of care, as defined by the CDC, is a report that focuses on current concepts and guidance that can assist state and local public health officials, healthcare facilities, and professionals in the development of systematic and comprehensive policies and protocols for crisis standards of care in disasters where resources are scarce. Some states’ CSC guidelines, however, have contained discriminatory language and policy against disabled people and the elderly, such as the states of Washington and Alabama. The CSC guidelines for the state of Alabama, for example, originally stated that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Another section reads: “Persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.” The policy has since been revised and resolved by the U.S. Department of Health and Human Services as of April 2020, due to such discriminatory language originally contained within.
Barkoff has worked with state leadership and the Office for Civil Rights at the U.S. Department of Health and Human Services (HHS) to remove such discriminatory language and policy from CSC guidelines since the rise of Covid-19 cases in March. “Sometimes, it’s really an intentional discrimination in terms of excluding people who have certain types of disabilities, or certain limitations, from even getting in line to get treatment, like ventilators, or other things,” Barkoff continued,“Whereas sometimes, the way that plans are set up, it in practice deprioritizes people with disabilities, and particularly disabled people of color.” According to The New York Times, the fatality statistics reported for people with IDD in congregate settings are even higher than those reported for Black Americans.
Current CSC guidelines may further deprioritize disabled people by allocating ventilators and vaccines to those whom medical providers predict will have a longer lifespan following treatment. Unfortunately, people with IDD are often wrongly assumed to have a lower quality of life due to their disability. Sam Crane, a legal director at the Autistic Self Advocacy Network, has suggested that doctors look at whether the degree to which the individual will benefit from the treatment, instead of the length of time they will live beyond treatment. She also suggested these measures be considered on an individual basis. Currently, doctors use a mortality prediction score, called a Sequential Organ Failure Assessment (SOFA), to ration medical care and resources. The Los Angeles Times recently reported that Los Angeles County’s public hospitals have prepared “triage officers,” consisting of critical care and emergency room doctors, to decide which patients can benefit from continued treatment. “One of the considerations in the SOFA score is what is called the Glasgow Coma Scale,” said Crane. “And the Glasgow Coma scale included questions like: Can this person speak? Can this person voluntarily use their limbs? That might be a relevant consideration if you’re dealing with someone who normally can speak and move their limbs, but they’re so ill that right now they can’t. But if you have someone who was paralyzed before they became ill, or someone who had developed mental disability before they became ill and couldn’t ever speak, or had difficulty speaking, then that person being unable to speak isn’t reflective of critical illness in the same way.”
Looking ahead to the vaccine rollout, many people of color with IDD, particularly Black people, are now skeptical about receiving Covid-19 vaccinations during its early rollouts due to historical medical bias and mistreatment. Kausha King, the mother of a young adult son with autism, expressed fears for his safety if he were to be given the vaccine in its early stages. “For me, we’re talking about systems that have said, ‘You’re always last,’” said King. “My child, he’s always last when it comes to something. If they say he’s up first, that concerns me. That concerns me because why is he up first all of the sudden? What’s wrong with that?”
Cejas, who has recently been vaccinated, is publicly informing her social media followers about the treatment process in an effort to provide transparent information to Covid-19’s most vulnerable communities. “I’m sure that there’s a population of people within this vaccine-hesitant community who are looking at it from the ‘anti-vaxxer’ lens,” said Cejas. “But I don’t think that’s the case most of the time. I think it’s that people are coming in and they’re remembering these stories. They’re remembering this history. They’re remembering how the medical community has treated them in the past, and they’re like, ‘What is to say that you’re going to keep me safe now?’”
In October, the Consortium for Citizens with Disabilities created a set of vaccine allocation principles for the disabled community, to advocate for non-discriminatory value assessments in vaccine allocation prioritization. This also includes simple language access to vaccine information, and the prioritization of residents and staff in all long term care settings. The committee addresses health disparities impacting disabled people across age, gender, sexual orientation, race, ethnicity, and primary language parameters. To further hold medical institutions accountable, critical health care workers and residents of long-term care facilities who have received the first phase of Covid-19 vaccines are also informing their communities about the vaccination process on Twitter with the hashtag, #IGotTheShot, thereby ensuring pertinent information and care are accessible to the most vulnerable.
About the Author: Natalie Crystal Doggett is a fellow with The Loreen Arbus Accessibility is Fundamental Program, an inaugural fellowship created to train women with disabilities as professional journalists so that they may write, research and report on the most crucial issues impacting the disabilities community.