Utah revises emergency plans to protect people with disabilities

(Rick Bowmer | AP file photo) In this April 14, 2020 photo, Jacob Hansen rides near his house on in Eagle Mountain. 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.

Utah has revised its emergency plans to protect people with disabilities from discrimination in case of rationing medical resources due to the coronavirus pandemic.

The changes to Utah’s Crisis Standard of Care Guidelines, dated Aug. 13, comes amid the resolution of a federal complaint against the state. The resolution was announced Thursday by the U.S. Department of Health & Human Services Office for Civil Rights.

The guidelines are meant to help doctors and nurses handle nightmare scenarios where more patients need treatment than there are resources, such as ventilators, to go around.

“Today’s resolution sends a clear message during a dire time: people with disabilities must have equal access to lifesaving treatment during the COVID-19 pandemic,” said Alison Barkoff, director of advocacy at the Center for Public Representation in a statement.

The complaint, filed by the Utah Disability Law Center in April, alleged that the state’s plan illegally excluded certain people with disabilities from accessing life-saving treatment in the event of a crisis.

The Utah Department of Health at that time approved an update that it said does not discriminate in allocating care days, but the resolution announced Thursday was based on more specific revisions in the emergency plan aimed at further protecting people with disabilities.

The complaint was filed on behalf of 20-year-old Eagle Mountain Resident Jacob Hansen, who has cystic fibrosis that affects his lungs and uses a wheelchair due to cerebral palsy. Being more susceptible to the virus, Hansen worried that if he became infected and was hospitalized, he might be considered a lower priority patient because of his disabilities.

According to a news release, Utah addressed his concern by removing language that allowed doctors to take patient life expectancy into account during a shortage. Instead, medical personnel can now only consider “short-term mortality” when assessing patient care.

The revision requires hospitals to provide information on all available treatment alternatives, and prevents them from imposing blanket “Do Not Resuscitate” policies because of resource constraints, according to the release.

Patients can no longer be excluded from treatment based on whether they would require more time or resources to recover under the updated plan. In the event of a shortage, doctors must assess patients individually to avoid making assumptions about a patient’s ability to respond to treatment.

The updated guidelines now require hospitals to make modifications to a tool used to prioritize access to medical treatment called the Modified Sequential Organ Failure Assessment. This avoids penalizing people with underlying conditions unrelated to their ability to benefit from treatment.

There also is a new provision that prevents hospitals from taking a personal ventilator from someone who uses it in their daily life in order to give it to another patient whom health care providers deem more likely to benefit from it.

“We are very pleased that our state has worked with OCR to end this immoral and illegal practice of rationing care for people with disabilities,” said Laura Henrie, associate legal director of the Utah Disability Law Center. “Utah has seen [COVID-19] cases surge over the last several weeks, which puts pressure on our health care system. The fear of not getting lifesaving treatment was very real for people like our client, Jacob. We are thankful for OCR’s efforts in protecting the rights of people with disabilities, so that folks like Jacob have equal access to care.”

Despite a high number of new infections and hospitalizations throughout the summer, state leaders have not reported a shortage in ventilators for COVID-19 patients.

Charla Haley, Department of Health spokesperson told The Tribune in April that Utah’s Crisis Standards of Care wouldn’t be activated “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.”

Utah never reached capacity in its hospitals.

The Beehive State became the fifth state in the country to overhaul its crisis guidelines because of the COVID-19 pandemic. Alabama, Pennsylvania, Connecticut and Tennessee are the others.

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