KANSAS CITY, Mo. — Disability rights advocates are worried about the way ventilators will be distributed if there is a shortage during the COVID-19 crisis.
Tessa Goupil, 49, has muscular dystrophy and depends on a ventilator.
"I can’t breathe on my own at all," Goupil told 41 Action News on Monday. "It wasn’t a choice to me. It was just, I needed to live, I’ve got stuff to do. I have to use a vent."
The mother from Topeka joined several Kansas disability rights groups in filing a complaint with the U.S. Department of Health and Human Services' office for civil rights over concerns regarding state guidelines on ventilators.
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"That if there were some sort of rationing decision that was made, that that ventilator could be taken from them and given to somebody else, based on the guidance that was provided," said Ami Hyten, executive director of the Topeka Independent Living Resource Center.
Days following the complaint, the office of civil rights issued a bulletin reminding state leaders that people "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.’”
"The people that they are treating should be able to make decisions based on what is in the clinical best interest of that person,” Hyten said, “and not from a perspective of resource scarcity, scarcity or pervasion.”
Disability rights advocates said Kansas removed the specific portion pertaining to ventilator rationing. They are working together to address it moving forward.
"[So] that anybody who shows up at the hospital has equal access without respect to arbitrary decisions about the quality and the value of the people," Hyten said.
