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Early on in the pandemic, a woman in Oregon ended up in the hospital with COVID-19. She has an intellectual disability. And the hospital refused to put her on a ventilator, which she needed. A small group of disability rights advocates intervened to ask why. And they discovered something disturbing. Some doctors seem to be rationing health care for people with disabilities. Here's NPR investigative correspondent Joseph Shapiro.
JOSEPH SHAPIRO, BYLINE: After Sarah McSweeney entered the hospital in a suburb of Portland, a doctor said she needed a ventilator. She didn't get one.
HEIDI BARNETT: And even though she had these medical issues, she was vivacious. She just lived her life.
SHAPIRO: That's Heidi Barnett talking about the woman she helped. McSweeney couldn't walk or speak words, but she was fun. She had a big personality.
BARNETT: And she was a beautiful person.
SHAPIRO: Right.
BARNETT: And it just - sorry. I just think she could have gone out better. They owed her more respect than she got.
SHAPIRO: We've told McSweeney's story on NPR. She wasn't the only person in Oregon with multiple and complex disabilities to find health care denied.
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JAKE CORNETT: Members of the committee, thank you for the opportunity to testify.
SHAPIRO: In June, a month after McSweeney died, a hearing in the state Senate raised the question - are people with disabilities being denied health care? Jake Cornett runs Disability Rights Oregon. That's a federally funded legal group that protects the rights of people with disabilities. Cornett told the lawmakers, and then us, about another case.
CORNETT: In March, Disability Rights Oregon received another complaint. And we investigated it and substantiated it.
SHAPIRO: A case in another hospital in another part of the state - another doctor pressuring someone to sign an order to forgo lifesaving care.
CORNETT: And the physician in that case talked about the, quote, "low quality of life" of the person with a disability.
SHAPIRO: That woman with an intellectual disability needed to be on a ventilator and fast. But the hospital in Pendleton, Ore., refused. Cornett's lawyers got the disabled woman transferred to another hospital. She got on a ventilator. And after being very, very sick, she lived.
CORNETT: It'd be one thing if this were just one isolated incident.
SHAPIRO: Cornett said he and his lawyers looked into many complaints.
CORNETT: But for a single state to have multiple cases like this coming up over and over, it should raise the alarm bell. It should convince people that this is a real problem that we need to quickly address at the state and federal level.
SHAPIRO: NPR investigated a dozen cases in Oregon. We talked to lawyers, lawmakers, state officials, doctors, service providers and people with disabilities. We requested public documents.
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SARA GELSER: I think people tend to think that these are just dystopian stories that would never happen. But they do. And they have. And they will.
SHAPIRO: That's Oregon State Senator Sara Gelser at the hearing she called in June. She was looking at these cases, too.
GELSER: I also started getting phone calls from across the state. I mean, we had hospitals that were trying to immediately discharge people, saying that they needed to go home for palliative or comfort care instead of actual treatment.
SHAPIRO: Reports of disabled people and elderly people being denied care. In Corvallis in April, staff at a group home took a 64-year-old man to the hospital with symptoms of COVID-19, a man with an intellectual disability. He's a quadriplegic. He can't speak. He's fed through a tube. Sarah Frazzini (ph), who runs the group home agency, testified to lawmakers and told NPR the hospital refused to test him. A medical staffer said out loud, right in front of this man...
SARAH FRAZZINI: Giving the COVID test would be a waste of valuable PPE.
SHAPIRO: They didn't want to use their personal protective equipment for such a disabled man. It turned out the man had pneumonia, not COVID-19. And when he left the hospital after six days, a doctor made a recommendation that the group home should put him in hospice care and end his feedings because, the doctor said, the man didn't have, quote, "quality of life" even though the man wasn't dying and had lived this way for years.
FRAZZINI: And we were shocked. We were blown away.
SHAPIRO: He's back home now. He likes to rock in his favorite recliner and watch his favorite superhero movies. NPR asked the three hospitals in the story for comment. All said they can't talk about care for specific patients. All said they do not discriminate on the basis of disability. There was one thing in my reporting that I wasn't sure what to make of. All this was happening when Oregon did not have a shortage of care. In fact, in April, Oregon was lending ventilator's.
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JILLIAN SMUKLER: Governor Brown said, quote, we'll be sending 140 ventilators to help New York because Oregon is in a better position right now.
SHAPIRO: So why didn't Sarah McSweeny or the woman in Pendleton get a ventilator? The state senator, Sara Gelser, who has an adult son with an intellectual disability, thinks she has an answer.
GELSER: COVID has put a giant magnifying glass on inequities in health care delivery for people with disabilities. For the first time, we see, in a more pressing and public way, how deadly that can be.
SHAPIRO: Gelser says there's always been a bias against people with disabilities in the health care system. It was largely hidden. The coronavirus made it visible, and then made it worse because doctors worried about potential shortages for some made decisions to deny care to others.
GELSER: So before we even needed to triage, medical systems were deciding on reserving resources for nondisabled people that the system valued more in case they ran out of resources later.
SHAPIRO: Gelser introduced legislation.
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UNIDENTIFIED PERSON #2: So Sara Gelser, can we get Section 2 done? And then...
SHAPIRO: It said health care providers cannot discriminate against people on the basis of disability. Hospital systems and other lawmakers objected. They worried the language would complicate decision-making.
GELSER: And my pushback was, you know, civil rights don't end in a pandemic or at the hospital door. That is where they're most important.
SHAPIRO: The anti-discrimination language was stripped from Gelser's bill. Two key parts did become law, a ban on doctors pressuring patients to sign do-not-resuscitate orders, and a requirement that someone with a disability who has trouble communicating can have a family member or advocate by the bedside. That started change in Oregon. This month, the state released new guidelines to hospitals with the anti-discrimination language.
Joseph Shapiro, NPR News.
(SOUNDBITE OF AARKTICA'S "BIG YEAR") Transcript provided by NPR, Copyright NPR.
