Utah sets pandemic safeguards for people with disabilities

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FILE - In this on April 14, 2020, file photo, Jodi Hansen walks with her son Jacob Hansen near their home in Eagle Mountain, Utah. Utah overhauled crisis guidelines Thursday, Aug. 20, 2020, that could have put people with disabilities at the back of the line if hospitals become overwhelmed during the coronavirus pandemic, adopting a new plan that federal officials said should serve as a national model for removing bias from life-or-death decisions. In Utah, the complaint was filed on behalf of Hansen, who has cystic fibrosis that affects his lungs and uses a wheelchair due to cerebral palsy. (AP Photo/Rick Bowmer, File)

SALT LAKE CITY – Utah became the fifth state Thursday to overhaul crisis guidelines that could have deprived people with disabilities of doctors' care if hospitals become overwhelmed during the coronavirus pandemic.

The changes approved by federal officials settle a complaint from disability advocates and set a new standard for other states, said Roger Severino, director of the Office for Civil Rights at the U.S. Department of Health and Human Services.

The decision should ease fears that disabled people could have been denied care during the pandemic.

“When the going gets tough you don’t throw the most vulnerable overboard,” Severino said.

Known as care-rationing or triage guidelines, the plans created by states are meant to help doctors and nurses handle nightmare scenarios of so many patients seeking care that health care professionals cannot treat them all.

The goal in those triage type situations is to save the largest number of lives, and create a system to make data-based decisions.

Most of the plans have been in place for years, but came under renewed scrutiny as the COVID-19 pandemic hit the United States in March and hospitals filled up.

Each state’s guidelines vary, but many allow patients to be downgraded on priority list for having different physical or mental disabilities or simply for things like needing help with daily activities, or based on a perceived quality of life.

Advocates said the guidelines wrongly put people with disabilities at a disadvantage. The groups filed complaints against 12 states including Kansas, Washington state and Oklahoma, said Shira Wakschlag, legal director at The Arc, the largest national organization that advocates for people with intellectual disabilities.

So far, Utah, Alabama, Pennsylvania, Connecticut and Tennessee have revised guidelines.

Each new plan created by states removes bias by specifically telling doctors they cannot use peoples’ disabilities to determine what sort of care they will get. The plans serve as models for other states, Wakschlag said.

“All of these serve as really a model nationally because they are coming out of a federal agency,” Wakschlag said. “We hope that the word gets out so other states see that they can use their medical judgment but also do it in a way that is not discriminatory against people with disabilities, even in a pandemic.”

The concerns raised early in the pandemic also triggered a warning in late March from the Office for Civil Rights to all hospitals that people with disabilities shouldn't be denied care based on a judgment about their "relative worth” compared to others.

In Utah, the complaint was filed on behalf of 20-year-old Jacob Hansen, who has cystic fibrosis that affects his lungs and uses a wheelchair due to cerebral palsy.

He’s one of millions of people with disabilities around the world disproportionately affected by the pandemic. Hanson is more susceptible to the virus but worried that if he caught it and was hospitalized, he might be considered a lower priority patient because of his disabilities.

The new guidelines change that possibility by removing language that allowed doctors to take into patient life expectancy, which is sometimes shorter for people with disabilities, Severino said.

“We want to avoid a situation where subjective assessments of a person’s worth or long-term outcomes are driving the process,” he said.

Instead of “downgrading” patients because they need help with daily activities, are perceived to have a lower quality of life or suffer from age-related diseases, the new guidelines advise doctors to prioritize patients who would benefit most from given treatments, he said.

The revised state guidelines also clearly says that if there a ventilator shortage emerged, the machines would not be taken away from disabled people using them already.

"I don’t anticipate having to use these standards, but it’s important to be prepared, especially so we can care for those who are most vulnerable when resources are limited,” said Republican Utah Gov. Gary Herbert.