OAKLAND, Calif. - Disability rights advocates and lawyers are preparing to combat and mediate discrimination in hospitals during the coronavirus pandemic that puts disabled people at the back of the line to receive care, or threatens their existing, life-saving care.
Medical rationing, and policies which sanction it, based on disability, is already present across the country. California disability advocates, attorneys and organizers are taking action against the illegal practice before hospitals become completely overwhelmed with COVID-19 patients.
There is a nationwide shortage of ventilators, which are necessary to treat patients with severe respiratory symptoms of COVID-19, and which some disabled people rely on to breathe. Although California’s early response to the disease has thus far been successful in “flattening the curve” of its spread, there remains an imminent and concrete risk of medical supply scarcity and inadequate space for people in hospitals.
If and when hospitals become overwhelmed with COVID-19 patients in California, disabled people, advocates and attorneys are worried, with well-documented and historically-supported reason, that medical rationing will hurt disabled people.
“We know that's already happening in some places, but it appears that it will be happening in many places soon,” said Jennifer Mathis, the Director of Policy and Legal Advocacy at the Bazelon Center for Mental Health Law in DC. “We have been concerned because we know that in many states, there are guidelines that either exist now, or that are being developed, for rationing scarce medical resources in the event of a crisis, and that those guidelines in most cases, seem to embed discrimination based on disability.”
Mathis said that these guidelines “either exclude certain groups of people with disabilities from receiving treatment, or give them lower priority, or negatively weight their disabilities in the calculus of who rises to the top.”
These guidelines attempt to systematically address the question: who is going to get treatment above someone else?
Stacey Park, an organizer with the Disability Justice Culture Club in Oakland who uses a ventilator 16 hours a day to breathe, said that she has been working to make sure she and people in her community are taking care of each other right now, including through a mutual aid program. They have to do everything they can to stay healthy, she said, because if she, or another disabled person ends up in a hospital, they might not be able to use a ventilator or get the care they need.
“I, myself, use a ventilator, but am very afraid that the healthcare supplier is going to tell me that they need it and take it back,” Park said. “And I've already been coming up with plans around what I'm gonna do if that happens.”
Park said that she heard of one person who got a call from the ventilator company asking that the person return their backup ventilator.
“But even that is scary, because what happens if one night your ventilator’s not working—are you not gonna have any way to breathe?” she said.
At the Disability Rights Education and Defense Fund (DREDF) in Berkeley, which is publishing legal briefs, sending letters to Governor Gavin Newsom and advocating on behalf of affected people, senior staff attorney Silvia Yee said that they began hearing reports of the discrimination in California a few weeks ago.
Her disabled colleague, who uses a ventilator to breathe, spoke with a disabled friend in Southern California who also uses a ventilator, and had called a local hospital to learn about the procedures there under COVID-19. He learned that he was not allowed to bring his ventilator with him to the hospital, and that if he went to the hospital, they would not let him have a ventilator, either.
“For him, it becomes a stark, ‘Well, if I go to the hospital, I can't breathe with my own machine, and I can't breathe with their machine,’” she said. “So, he couldn’t go to the hospital. And that was also a problem we’re increasingly aware of with parents. We heard a lot of concern from parents of children with significant disabilities, that they didn't know if they would go to the hospital if their child acquired COVID.”
Decisions about who can access limited resources, particularly ventilators, during triage under COVID-19, involve medical professionals, often on an individual basis, weighing factors such as quality of life and expected life span, which are subjective, and which attorneys say are inherently ableist—meaning that these factors can devalue and discriminate against people with physical, intellectual, or psychiatric disabilities.
“We know, for many, many years and many, many studies that have been done, that people without disabilities have a very different and far more negative view of the quality of life for somebody with a disability, than do the people with disabilities who live those lives,” said Mathis.
Yee said that the perception of medical tools and interventions that disabled people use to stay alive, during COVID-19 or otherwise, is often colored by inappropriate and prejudiced notions about their bodies and their bodily autonomy.
“For the people I know who use ventilators, or wheelchairs, or other kinds of equipment, it's not a machine, it's actually part of them,” said Yee. “It supplements a function that their body does, but doesn't do that well, or needs assistance with…are we going to start using people for their organs, then, too?”
Yee also said that she was alarmed by reports of health officials in Washington, D.C. targeting nursing homes as potential sources of ventilators, taking them away from people who have been relying on them for years. She noted that ventilators are customized to a person's individual breathing patterns, so you can't "just grab one off the shelf."
The Disability Justice Culture Club is hosting an Emergency Legal Document Planning Workshop on Saturday over Zoom to “learn how to prepare important planning documents for yourself or supporting others” and will review how to create advance care directives, power of attorney documents and wills.
Brandie Sendziak, Supervising Attorney at the Independent Living Resource Center in San Francisco and Sondra Solovay, an author and legal expert in weight discrimination, who are both disabled, will introduce that workshop, which will be led by Ora Prochovnick. They helped found a newly-formed coalition called No Body Is Disposable, with the organization Fat Rose, the Independent Living Resource Center and the Fat Legal Advocacy Rights and Education Project, to address discrimination in COVID-19 triage.
“We were extremely concerned about triage protocols that we were hearing about outside of the US, and then we saw that developing in the United States as well,” said Sendziak.
She said that “these protocols discriminate based on disability, age. We are very concerned about weight and discrimination. We know that fat people face a lot of stigma and discrimination anytime that they're in a healthcare setting. We're extremely worried about how that would play out in this kind of life or death situation.”
She said that the fat community has a lot of overlap with the disability community, but there are a lot of fat people who don’t consider themselves disabled. Still, they can use disability law to protect themselves from discrimination.
Sendziak said that their work at No Body Is Disposable is largely to help people understand both federal and local disability laws. Navigating healthcare as a disabled person is better when you’re equipped with knowing your rights and the laws, and these can affect one’s individual approach to treatment. For example, in the Bay Area, hospitals in San Francisco and Santa Cruz have the strongest protections against weight discrimination - rendering it illegal - and are safer places to go for high-weight individuals.
Sendziak said that she is seeing a lot of discussion about “comorbidities” - the presence of two chornic conditions - to determine who gets the best chance at life-saving treatment. The fact that these “comorbidities” are not always specifically defined means there is ample room for prejudiced judgements, she said.
“Without good evidence, people can say, ‘That's the fat patient, you know, we're not going to offer them a ventilator,’” Sendziak said. “That's a huge concern—that in a situation where care professionals are overwhelmed and overworked, that's going to be an easy form of discrimination.”
Solovay noted that the mere fact that someone uses medical supports, like a ventilator or oxygen, could count against them in a triage scenario, and that in creating blanket protocols for crisis care, she fears individualized assessments will not be available.
“One of the things that we have seen a lot, is that they're just planning on making sort of judgments on what they think individual's quality of life is,” Solovay said.
Mathis said she and her organization are currently working to get statewide, discriminatory triage policies revoked and remedied, as well as to establish and make states aware of the legal framework that protects disabled people. Her organization has filed six complaints in states across the country with the Office of Civil Rights within the U.S. Department of Health and Human Services.
These complaints address the fact that treatment is not being given based on the essential condition of "whether they can survive the treatment."
In Alabama, for example, a state treatment plan singled out and excluded individuals with “severe or profound mental retardation,” moderate to severe dementia, and severe traumatic brain injuries in the event of medical rationing.
“So if you had one of those disabilities, regardless of your ability to survive the treatment, that disability would prevent you from getting life saving treatment under these protocols,” Mathis said.
Alabama has since pulled this policy and stated that it would not discriminate based on disability, and although Mathis thinks that’s a good first step, she said there is still a lack of clear guidance. She noted that the new plan Alabama published does not mention ventilator rationing at all, and that the old plan was specifically about ventilator rationing.
Yee said that her and her colleagues have been pushing the idea of taking care of people at home, so they don’t have to go to the hospital and face potentially discriminatory care. She said that the notion of people imploring others to stay home to protect the vulnerable and the elderly sometimes can feel like “lip service” without providing the resources for disabled people to stay safe. For her colleague who is disabled, she said, this help can look like personal assistants.
“She has three to five assistants that come in to help her get out of bed, eat, dress, go to the bathroom,” Yee said. “These are basic things. She can't have them stop coming. That's not an option. And yet, if they're not recognized as frontline health care workers, basically they are not provided with personal protective equipment.”
Park said that going to a hospital as a disabled person is already a point of fear and mistrust without a pandemic.
“So many disabled people have experienced violence in the hospital, or not having their autonomy respected,” Park said. “So we're preparing these legal documents because if a person is alone in the hospital, and they're having the fight to even receive life-sustaining medical care, then we want them to have these documents...as one tool that hopefully would help.”
Caroline Hart is digital writer and investigator with KTVU. She can be reached at firstname.lastname@example.org.