Disability Groups File Federal Complaint About COVID-19 Care Rationing Plans

People with disabilities are asking the federal government to stop what they say are care-rationing plans from states and hospitals, which could possibly deny them treatment for COVID-19.

AILSA CHANG, HOST:

People with disabilities are asking the federal government to stop what they say are policies by states and hospitals that will ration care and deny them treatment for the coronavirus. NPR investigative correspondent Joseph Shapiro reports.

JOSEPH SHAPIRO, BYLINE: Washington state is one of the hardest hit by the pandemic. The State Department of Health issued guidelines to help doctors and hospitals decide something they fear - deciding who gets scarce, lifesaving care - if there are, say, more people who need ventilators than the number of ventilators available. Today several disability groups filed a complaint with the federal Department of Health and Human Services, asking the federal government to investigate Washington state's guidelines. The complaint says they tell doctors to give those ventilators and other care to younger and healthier people.

IVANOVA SMITH: I'm really scared for if I've got the virus. Like, that's really terrifying because I was born with weak lungs.

J SHAPIRO: Ivanova Smith, a woman with an intellectual disability, is one of the complainants who filed today. She spent the first five and a half years of her life in an orphanage in Latvia. She didn't speak. Then she was adopted by an American family. Her American mother taught her to speak, read and write.

SMITH: There's been a long history of people with intellectual developmental disabilities having their medical care that died because we're not seen as valuable. We're not seen as productive or needed when that's not true - that we have people that love us, that care for us.

J SHAPIRO: Now Smith is married. She has a job speaking to doctors and other medical providers about the health care needs of people with disabilities.

SMITH: Many people with disabilities work, and they do amazing things in their communities. But they need that lifesaving care.

J SHAPIRO: The Washington State Department of Health did not respond when asked to comment. A spokesperson for the University of Washington Medical Center also named in the complaint said it had not been notified until the call from NPR.

ARI NE'EMAN: People with disabilities are terrified.

J SHAPIRO: Ari Ne'eman is a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University.

NE'EMAN: They are terrified that when it comes to scarce resources like ventilators, they will be sent to the back of the line. And they're right to be terrified because many states are saying this quite explicitly in their allocation criteria.

J SHAPIRO: Ne'eman looked at state policies for crisis care and found several - including in New York, Alabama, Tennessee, Utah - that ration care at the expense of people with disabilities. He says this violates civil rights laws like the Americans With Disabilities Act.

NE'EMAN: Our civil rights laws don't go away in the midst of a pandemic.

J SHAPIRO: He's worried of a repeat in this country of what's happening in Italy, where ventilators go to young people over older ones. He thinks are fairer ways. Let the ventilator will go to the first person who needs it. Others have suggested a lottery system. Meanwhile, disability groups in other states are preparing similar complaints. Another letter came from Neil Romano, who was named by President Donald Trump as chair of another federal agency, the National Council on Disability. He, too, asked the Department of Health and Human Services to take action to stop rationing. Now he's talking to the department's Office for Civil Rights.

NEIL ROMANO: We're working very, very closely and very hard to make sure that we get some form of guidance out to the medical community as soon as possible.

J SHAPIRO: It's still unclear if the federal government will respond and, if so, how forcefully.

Joseph Shapiro, NPR News.

(SOUNDBITE OF TYCHO'S "SOURCE")

Copyright © 2020 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.