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ICU Beds At Capacity Cannot Equal More Discrimination Against People With Disabilities — Plus Advocacy Resources to Help
By Anna Landre and Germán Parodi
Hospitals are already hitting capacity for treating patients with COVID-19 in areas throughout the country, limiting their ability to treat those in need. In South Carolina, some hospitals are out of ICU beds, as the state faces its worst COVID-19 surge yet. Others aren’t far behind. In California, maxed-out ICUs are about to trigger region-wide shutdowns and stay-at-home orders. Throughout December and January, similar situations are expected to occur in other states.
Throughout the pandemic, disabled people have been discriminated against and denied care for COVID-19 even when hospitals faced no shortage of staff and resources. Now that cases are rising and hospitals across the country are expected to be overwhelmed by patients in need of treatment, this practice is likely to become more widespread, and increasingly deadly. In order to survive, disabled people and their allies must remain aware of their rights to equal treatment and access to care under the law.
Although disability discrimination has occurred since the onset of the pandemic, it gained national attention in July, when Michael Hickson, a Black wheelchair user, was denied potentially life-saving treatment in Texas because doctors believed that he had a “low quality of life” due to his disability. Michael Hickson is emblematic of a medical system that believes that disabled lives are less valuable than non-disabled ones. Even though the hospital was not overwhelmed with patients and faced no shortage of staff and resources, Hickson’s doctors defied the wishes of his family and stopped treating him. Several days later, he died.
In Oregon, similar events occurred in March when a woman with an intellectual disability was denied the ventilator she needed, despite that there was no shortage in the hospital. Instead, a doctor tried to persuade her to sign a form allowing the hospital to deny her care, citing her supposed “low quality of life.” When disability rights advocates learned of this situation, they discovered that this was only one of many instances in Oregon where medical care was being unnecessarily denied to disabled patients.
One disabled man, upon arriving at the emergency room from a group home, was told that treating him would be a "waste of valuable PPE." After doctors were convinced by a staff member to provide treatment. Once he began to recover, the man was discharged back to his group home with instructions from doctors to discontinue his routine disability services and nutrition — not because of COVID-19, but because he had a “low quality of life.”
Oregon hospitals even instructed group homes for people with disabilities to write do-not-resuscitate (DNR) orders, should they contracted COVID-19 and try to seek hospital care. Although disability rights groups were able to quickly intervene and save the woman’s life, the doctors and hospitals faced no sanctions, and similar practices of discrimination have continued. Other occurrences have been documented in many states. While there is a recognized need for triage, it cannot be determined or rationed based on disability.
And when hospitals are overrun with patients and facing resource shortages, the situation can be even more dire. In November, nurses in El Paso described what they called “The Pit” — part of the hospital where the most critical COVID-19 patients were sent. “I saw a lot of people die that I felt like shouldn’t have died,” said Lawanna Rivers, a nurse working with these patients. She reported that doctors sometimes refused to treat certain patients, and that some patients — classified as “VIP” by doctors — received better treatment than others.
This deadly pattern will only grow more pronounced as hospitals reach capacity and begin medical rationing practices. Since the start of the pandemic, civil rights organizations including The Partnership for Inclusive Disaster Strategies have issued calls for more intervention on pandemic-related disability rights issues, including adopting Crisis Standards of Care that explicitly disavow discrimination against marginalized groups, including people with disabilities. The Partnership and other disability rights organized warned of the dangers of failing to implement early mitigation strategies — and now, the consequences of inaction are clear.
Today, even the most prominent medical organizations across the country are calling for immediate action to implement clear Crisis Standards of Care that explicitly prohibit categorical exclusion criteria on the basis of disability, age, long-term life expectancy, and relative worth of life (including through quality of life judgements), and do not deprioritize patients on the basis of disability or age because they might require more treatment resources or require additional support. These improved Crisis Standards of Care would help to ensure that marginalized people, including people who are Black, Indigenous, People of Color (BIPOC), low-income, or disabled, are better protected from discrimination.
So far, the state of Montana has shown leadership in developing crisis care guidance. A working group made up of medical providers, medical ethicists, disability representatives, emergency preparedness planners, and hospital administrators developed standards that were endorsed by Governor Steve Bullock on December 22nd. This group will continue to meet and update the plan as conditions develop, showing that disability-inclusive disaster management has real and immediate positive impacts.
People with disabilities and their allies need to know that they are entitled to equal access to medical treatment including for COVID-19. Anything less is a violation of their civil rights. The following resources outline some protections and strategies that may be helpful in combating discriminatory medical rationing practices:
Long-term care facilities:
HHS Office for Civil Rights Resolutions with States: