Utah updates its emergency care protocol, as advocates worry about discrimination against disabled COVID-19 patients

(Photo courtesy of Jodi Hansen) Jacob Hansen, 20, and his family worry that if there was a shortage of equipment in Utah during the coronavirus pandemic that people with disabilities would not be prioritized for life-saving care. Hansen has cystic fibrosis and cerebral palsy.

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If Utah has to ration medical supplies during the coronavirus pandemic, advocates worry that people with disabilities would not be prioritized for life-saving care, based on state emergency plans that had been prepared.

The Disability Law Center of Utah raised the issue in a federal filing this week, and on Wednesday, the Utah Department of Health approved an update that it said does not discriminate in allocating care.

State leaders said Friday that they have more than enough ventilators needed to treat the projected number of COVID-19 patients. Hopefully, things stay that way, said Nate Crippes, an attorney with the Disability Law Center.

But if Utah has a shortage in the future, Crippes said, the law center wants to make sure that people like Eagle Mountain resident Jacob Hansen, who has cerebral palsy and cystic fibrosis, are as likely to be treated as anyone else.

“It feels unfair that anyone would assume others should be a higher priority,” said Hansen, 20.

The Disability Law Center filed a complaint Monday with the Department of Health and Human Services Office for Civil Rights, arguing that Utah’s Crisis Standards of Care, a 2018 document that serves as the state’s guide for “the allocation of patient care resources during an overwhelming public health emergency,” is potentially discriminatory toward people with disabilities.

The guide instructs medical providers to use a point system, if there are limited resources, to decide who should receive care first, looking at a patient’s age, their health and “estimated survival." A person who has a “severe systemic disease with functional impairment” is given points that indicate they are less likely to receive care if there are inadequate resources.

The guide also says that “a patient may be considered for exclusion from admission or transfer to critical care, depending on available resources," if they have “known severe dementia” or an “advanced untreatable neuromuscular disease” that requires "assistance with activities of daily living.”

That patient prioritization tool "is not perfect,” the document states, but “it is hoped that it fosters both dialogue and further research leading to a validated, objective, and fair resource allocation tool in the future.”

Typically, when a complaint is filed with the Office for Civil Rights, the federal agency investigates and determines whether a law was violated, which could take months, Crippes said. But the Disability Law Center’s hope with filing this complaint is that it puts Utah and federal authorities “on notice” that there could be a problem here if the state has to take drastic steps.

“No one wants to reach that point,” Crippes said, but “unfortunately, that’s a possibility.”

On Wednesday, the state health department approved an update to emergency plans about how ventilators will be allocated during the COVID-19 pandemic. “This protocol does not discriminate based on race, color, national origin, disability, sex or exercise of conscience and religion,” the document states.

A team began working on this update in late February and continued working through March, according to Charla Haley, Department of Health spokesperson. It goes into effect immediately and is being distributed to Utah’s hospitals and providers, she said. It will also be available on the department’s website.

Haley added that Utah’s Crisis Standards of Care had not been activated as of Wednesday afternoon and won’t be “until every hospital has reached maximum surge capacity, every effort has been exhausted to provide care to every patient, and every avenue for accessing resources and supplies has been followed.”

Jacob Hansen was named in the law center’s complaint as an individual who could be impacted. His mother, Jodi Hansen, said the possibility of health care rationing is “always in the back of my mind” when she thinks about her son.

“It really is terrifying to think they would consider him to not be as valuable in the community, that his life is worth any less than anyone else’s life,” she said.

Jacob Hansen lives a “pretty active lifestyle,” his mother said. He graduated from high school, volunteers and has gone as an advocate to the state Legislature to help get services for people with disabilities. He was about to start working at a grocery story “when all of this hit,” she said.

Every winter, the Hansen family does their own self-quarantine to help prevent Jacob Hansen from getting the flu. During the spread of COVID-19, they don’t let anyone in the house except for immediate family and only leave for work or to go to the grocery store.

Jodi Hansen said she hopes that if her son did need care, he’d receive the same treatment to help him “bounce back” like everyone else.

Twenty-five states, including Utah, have policies that advocates “fear will send people with disabilities to the back of the line for life-saving treatment,” according to an analysis by the nonprofit newsroom Center for Public Integrity, based on the state’s earllier version of the protocol. Similar complaints have been filed in other states with the federal government about these policies.

The U.S. Department of Health and Human Services issued a bulletin on March 28 “directing covered entities not to discriminate against individuals with disabilities when developing protocols for the COVID-19 pandemic.”

“In this time of emergency, the laudable goal of providing care quickly and efficiently must be guided by the fundamental principles of fairness, equality, and compassion that animate our civil rights laws,” the bulletin states. “This is particularly true with respect to the treatment of persons with disabilities during medical emergencies as they possess the same dignity and worth as everyone else.”

According to the department, “...persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age.” Instead, treatment “should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

"Rationing human life is not only illegal and immoral, it is simply unacceptable. While we recognize that the health care system will be under unprecedented pressure during the next few weeks, no one should face discrimination in accessing life-saving treatment and care,” said Adina Zahradnikova, executive director of the Disability Law Center of Utah, in a statement.