npr--2020-12-21--Oregon Hospitals Didn't Have Shortages. So Why Were Disabled People Denied Care?

Oregon Hospitals Did n't Have Shortages .
So Why Were Disabled People Denied Care ?
At the start of the coronavirus pandemic , a small group of disability rights advocates found itself in a race against time to save the life of a woman with an intellectual disability .
The woman was taken to the hospital with COVID-19 .
But the hospital , in a small Oregon town , denied the ventilator she needed .
Instead , a doctor , citing her `` low quality of life , '' wanted her to sign a legal form to allow the hospital @ @ @ @ @ @ @ that quiet fight in early spring , the advocates — staff at a disability rights legal group , a state lawmaker and a few others — discovered something disturbing : There were many cases in Oregon of health care being rationed to people with disabilities .
At the same moment , across the United States , disability groups and even a civil rights office of the U.S. government were raising a similar warning : that behind closed doors , people with disabilities , as well as elderly people , were in danger of @ @ @ @ @ @ @ looking for cases , too , and heard about the woman in Pendleton while she was in the hospital .
There 's no reason that these examples would occur more frequently in Oregon than in other states .
But the fight for that anonymous woman with an intellectual disability peeled back the curtain on health care decision-making in Oregon in a way that did not happen in other states .
That activism led to change in Oregon — including anti-discrimination legislation and new statewide policies .
It was late March when the woman @ @ @ @ @ @ @ She struggled to breathe .
In the hospital , a medical provider wrote do-not-resuscitate ( DNR ) and do-not-intubate orders for the woman .
Those are medical instructions to health care providers to withhold potentially painful interventions , like a ventilator or CPR , if a patient stops breathing or the patient 's heart stops .
The woman was alone in the hospital and did not understand what the doctor and medical staff wanted her to agree to .
In addition , the hospital staff sent word to the woman 's group home @ @ @ @ @ @ @ your other residents , in case one of them comes to the hospital .
People who worked with the woman were angry that the doctor and the hospital seemed to be discounting the lives of people with disabilities .
Someone tracked down lawyers for help .
The lawyers work for Disability Rights Oregon ( DRO ) , a federally funded legal group that protects the rights of people with disabilities .
State Sen. Sara Gelser , who chairs Oregon 's Senate Committee on Human Services , was notified too .
NPR knows some @ @ @ @ @ @ @ on interviews with state officials , lawyers and others in Oregon , as well as from documents obtained through a public records request .
Because of privacy laws , those we spoke to could talk only generally of the case and the person involved .
They could n't confirm the gender of the person .
NPR knows the person was a woman because of references in the state documents we obtained .
Officials at DRO said they can not confirm the place where the case happened .
State documents show it was in @ @ @ @ @ @ @ , 25-bed hospital .
The report from Pendleton alarmed staff at DRO .
`` We investigated and substantiated it , '' Jake Cornett , executive director of DRO , told NPR .
A person with an intellectual disability was `` being inappropriately influenced about life-sustaining treatment .
And the physician in that case talked about the quote 'low quality of life ' of a person with a disability . ''
Cornett made the same points , briefly , in testimony to the state legislature .
At the hospital , the intellectually disabled woman @ @ @ @ @ @ @ .
Emily Cooper , the legal director at DRO , threatened to sue the hospital .
The woman was moved to another hospital , where she was placed in the intensive care unit and on a ventilator .
Her condition was dire .
There was fear , according to a letter that state Senator Gelser sent to the governor 's office and state health officials , that the woman had been left `` without appropriate and necessary care for two days '' and that the time without a ventilator had put her life @ @ @ @ @ @ @ worried that she might die .
But after several days in the new hospital , the woman recovered .
She returned to her group home .
Still , even that success left Cooper worried .
`` The threat of litigation and the threat of exposing the depth and the whiff of discrimination in our state , I think , was enough to get people to do the right thing , '' says Cooper .
`` But what that meant is you needed to have a lawyer call or you needed to have someone @ @ @ @ @ @ @ that . ''
Most people with disabilities and their families do n't have lawyers working for them .
And DRO and state officials were getting more reports from around the state of health care being denied .
Gelser urged the governor and state officials to make it clear that doctors could not write blanket DNRs for patients with disabilities .
`` I remain deeply concerned about the situation in Pendleton , '' Gelser wrote on April 10 in an email to state officials .
`` We only know about it because someone knew @ @ @ @ @ @ @ call had not happened and DRO had not engaged , it is not hard to imagine the person would have died . ''
Gelser , in the email obtained by NPR in its records request , urged state officials to sanction the hospital .
`` The providers , as far as I can tell , have been given no clear signal that what they did was wrong and should not occur again , '' she wrote .
`` A strong , pointed statement about the rights of elderly and disabled people is desperately @ @ @ @ @ @ @ Oregon Health Authority `` received a complaint in April 2020 related to patients ' rights , '' a spokesperson told NPR .
But it concluded `` that we would not be able to investigate . ''
The main allegation was against the doctor , and the health authority does not have `` jurisdiction over individual health care providers . ''
It was up to the organization that accredits the hospital , the health authority concluded .
NPR checked with the Joint Commission , the accrediting body .
A spokesperson said it had not @ @ @ @ @ @ @ result of NPR 's inquiry , the spokesperson said , it had opened a review of the incident .
`` Nothing happened to that hospital .
Nothing happened to that physician , '' Gelser told NPR .
`` The health authority confirmed that , in fact , that was a coerced do-not-intubate order , that they confirmed it happened ... but there was no sanction .
So there was no remedy . ''
Adds Gelser : `` This is immoral .
We do not respond to disability discrimination in the way that we @ @ @ @ @ @ @ the one hospital in Pendleton .
In a statement to NPR , the hospital said : `` For reasons of patient confidentiality , we are not able to comment on any specific situation or patient .
We are committed to providing compassionate and high quality care to every patient , without regard to anyone 's ability or disability .
St. Anthony Hospital categorically denies any allegations to the contrary .
We are unaware of any complaint to the Oregon Health Authority such as you have described . ''
NPR reached out to the @ @ @ @ @ @ @ the woman , traumatized and confused by her time in the hospital , does not speak about it .
Federal laws , notably the Americans with Disabilities Act and the Affordable Care Act , prohibit health care discrimination — including denial of care — based solely on a person 's disability .
The Office for Civil Rights at the U.S. Department of Health and Human Services explained the law in guidance at the start of the pandemic .
When care is scarce , doctors are allowed to decide who gets it and who @ @ @ @ @ @ @ is most likely to do best with that treatment by making an `` individualized assessment of the patient '' based on objective medical evidence .
But doctors ca n't rule out people because they have a specific disability — for example , dementia or using portable ventilators every day to help themselves breathe .
`` Persons 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 ' based on the presence or absence of disabilities @ @ @ @ @ @ @ office explained .
OCR issued those guidelines on March 28 after national and state disability groups raised alarm that states had issued rationing plans that allowed discrimination against elderly and disabled people .
Oregon was one of 29 states that issued `` crisis standards of care '' guidelines to doctors and health care systems about how to allot scarce medical care in case of a crisis — like a terrorism event , a natural disaster or a pandemic .
In early May , Disability Rights Oregon led a coalition of 21 state and @ @ @ @ @ @ @ filed a complaint about Oregon 's standards with OCR .
The near death in Pendleton spurred the advocates to watch for other cases .
One state official , who handled complaints at residential facilities , wrote to Gelser in April that her office had received and investigated complaints of hospitals and physicians `` inappropriately '' asking people with disabilities to fill out a legal form to limit care , according to the documents obtained by NPR .
Gelser heard reports of disabled and elderly people who had symptoms of COVID-19 , went to @ @ @ @ @ @ @ treatment or even lifesaving care .
`` We had hospitals that were trying to immediately discharge people and saying that they needed to go home for palliative or comfort care , instead of actual treatment , '' she says .
There are additional cases in the public documents that NPR collected .
In April , a health care system in Salem , Ore. , sent an `` urgent message '' to area group homes for people with disabilities , telling them not to bring residents with symptoms of COVID-19 to the emergency room @ @ @ @ @ @ @ require hospitalization , '' according to the letter .
That was alarming , Gelser says , because it `` discouraged people from bringing in clients that needed care .
It also indicated people would be discharged prematurely — and into group homes that did n't have the capacity to provide appropriate care . ''
A spokesperson for Salem Health said it had focused in early spring on being prepared to handle a large number of coronavirus cases .
`` During the unknowns of the spring surge , this meant preserving hospital capacity for @ @ @ @ @ @ @ '' the spokesperson said , adding that the system followed state and federal guidelines for best practices and has changed its policies as those standards have changed .
The state records that NPR obtained show other people with disabilities were denied coronavirus tests or treatment when they showed up at hospitals with symptoms .
Sarah Frazzini , the executive director of Benco , a nonprofit agency that provides housing and other services to people with disabilities , points to the story of one of her residents .
On April 2 , the 64-year-old @ @ @ @ @ @ @ and staff at his group home worried that he 'd contracted COVID-19 .
They took him to the emergency room at Good Samaritan Regional Medical Center in Corvallis .
The man has a significant intellectual disability .
He does n't speak words .
He 's quadriplegic .
He ca n't swallow and is fed through a tube .
Medical staff in the emergency room refused to test him for the coronavirus .
Frazzini told the story to NPR , as well as to state lawmakers in a June hearing .
It would be @ @ @ @ @ @ @ '' or personal protective equipment , a member of the medical team said , angrily , in front of the man , according to Frazzini .
At the time , there were shortages of PPE in Oregon and nationwide .
He was eventually tested after a staff worker for the agency that ran the man 's group house insisted , Frazzini told NPR .
The man was admitted to the hospital .
It turned out he had pneumonia , not COVID-19 .
When , after six days , he was discharged , Frazzini @ @ @ @ @ @ @ , a physician in an online call made a recommendation : The group home should stop the man 's care and nutrition and begin end-of-life hospice care .
According to Frazzini , the doctor said the man , with his multiple disabilities , had a `` low quality of life . ''
The staff member who worked for him was furious .
The man was not dying .
His condition was the same as before he 'd entered the hospital .
He 'd lived this way for years .
Frazzini says her staff @ @ @ @ @ @ @ with significant disabilities and had made a judgment that his life did n't matter .
The man is in good health today .
He lives in his group home and spends days in his favorite recliner , watching his favorite superhero movies and enjoying the brightly colored tropical fish in his large aquarium .
The man `` lives a dignified and fulfilled life , '' Frazzini told lawmakers .
`` To have to fight so hard for the COVID test , to hear statements about giving the test being a 'waste of valuable @ @ @ @ @ @ @ recommend at discharge to end his life is absolutely appalling , '' she said at the hearing .
A spokesperson for Samaritan Health Services said that he could not comment on the care of a specific patient but that the hospital 's policies have evolved since the spring based on changes in state recommendations .
In the documents obtained by NPR , there are other reports of people with intellectual disabilities being told to sign a do-not-resuscitate order as a condition before being admitted .
At other hospitals , they were separated from @ @ @ @ @ @ @ document they did not understand .
Or , as in Sarah McSweeney 's case , her guardians felt pressured .
Before she went to the hospital , McSweeney loved it when staff at her group home took her to the shopping mall to get her hair done and to country music concerts .
The 45-year-old woman had multiple disabilities .
She was quadriplegic , so staff at her group home in Oregon City pushed her in her bright pink wheelchair .
She could n't swallow , so the direct service professionals — the @ @ @ @ @ @ @ her through a gastrostomy tube that sent nutrition directly to her stomach .
She could n't speak words , but the people who worked for her could understand her by her sounds and facial expressions .
`` And even though she had these medical issues , she was vivacious .
She just lived her life , '' says Heidi Barnett , who worked with her .
`` She had a pretty full life .
And you were blessed if you got to meet her . ''
Barnett works for the Arc Oregon in @ @ @ @ @ @ @ make decisions about her life and health care .
She helped McSweeney draft the legal document that went with her to the hospital : It said that she wanted full medical care .
But after McSweeney went to the hospital on April 21 with a high fever , doctors and social workers called Barnett — who wrote up detailed notes of these calls — and tried to get her to accept a do-not-resuscitate order for McSweeney .
Tests showed McSweeney did not have COVID-19 .
But in the hospital she had episodes of @ @ @ @ @ @ @ into her lungs .
In the hospital , a doctor told Kimberly Conger , the nurse manager from Community Access Services , which ran the group house where McSweeney lived , that she needed to be on a ventilator .
`` We discussed the possibility of her being intubated and letting the lung rest , giving her time to heal and letting the antibiotics do their magic , '' says Conger .
But then the doctor questioned whether it was worth doing , citing McSweeney 's `` quality of life . ''
Conger @ @ @ @ @ @ @ And he looked at me and goes : 'Oh , she can walk ?
And talk ? '
`` she says the doctor asked , moving his fingers in the air in a walking motion .
Conger replied : `` There 's a lot of people who do n't walk who have full quality of life . ''
McSweeney was not moved back to the ICU and was not put on a ventilator .
She died on May 10 of severe sepsis because of aspiration pneumonia .
`` We believe there was bias @ @ @ @ @ @ @ '' Anna Keenan-Mudrick , executive director of Community Access Services , told Gelser 's committee in June .
A spokeswoman for the hospital , Providence Willamette Falls Medical Center , says : `` While we have conversations with patients , family and/or guardians about care options , we do not pressure or force anyone to sign a DNR order , and we are unaware of any evidence to the contrary . ''
`` I just think she could have gone out better , '' says Barnett .
`` They owed her more respect @ @ @ @ @ @ @ 's death , Barnett says she dealt with a similar case with another client .
A 77-year-old man with an intellectual disability contracted COVID-19 and went to another Oregon hospital for treatment .
But she says a doctor there , acting unilaterally , reversed the man 's legal order for full treatment .
When Barnett and the man 's advocates objected , she says the doctor stood firm , saying the man — who is diabetic and intellectually disabled — was `` too difficult to treat . ''
Says Barnett : `` It @ @ @ @ @ @ @ The man survived and returned home .
One of the most common causes of poor care occurred when someone who had difficulty communicating or had dementia went to the hospital alone .
Family and advocates were barred , for the most part , from visiting — even when the person depended on them to communicate .
One Oregon doctor , who asked to remain anonymous in order to speak freely , told NPR about a teenage girl with significant disabilities who was on a ventilator with COVID-19 in the ICU at his hospital @ @ @ @ @ @ @ typically , relied on her mother to communicate for her .
The hospital arranged a videoconference with the girl and her mother to talk about ongoing care .
But when the young woman saw her mother 's face on the computer screen , she sobbed uncontrollably .
`` It was heart wrenching , '' the doctor told NPR .
Eventually , the mother was allowed to visit .
In late June , Gelser wrote and co-sponsored an anti-discrimination bill : Senate Bill 1606 .
It bars doctors from forcing a do-not-resuscitate or do-not-intubate @ @ @ @ @ @ @ either as a condition of being admitted to the hospital or as a condition for treatment .
It requires doctors to honor a person 's medical orders for care .
It allows people with certain disabilities to have a family member or other support person with them during a hospital stay to help explain their medical choices .
That legislation passed the legislature , and Oregon Gov .
Kate Brown signed it into law on July 7 .
Gelser was surprised that one section of the bill turned out to be controversial .
@ @ @ @ @ @ @ providers could not discriminate on the basis of disability was stripped from the bill .
Health officials worried that the language was too vague and would interfere with individual decision-making .
The debate over denial of care to people with disabilities was a quiet one in Oregon .
It was a conversation largely among advocates in the disability and aging communities , medical officials and state officials .
But it resulted in positive change .
• Officials in state health agencies played a role .
The Oregon Association of Hospitals and Health Systems @ @ @ @ @ @ @ the Oregon Health Authority withdrew the disputed state crisis standards of care .
Those are the rules that doctors and hospitals can apply to ration care when it gets scarce .
The drafters had failed to adequately reach out to `` communities of color , tribal communities , or people with disabilities , '' the authority said in a letter to Gelser , and as a result the guidelines `` have the potential to perpetuate discrimination on the basis of race , age or disability . ''
Leann Johnson , the health authority @ @ @ @ @ @ @ told NPR that the move reflected the agency 's plan , announced at the start of 2020 , to end health care disparities by 2030 .
• In October , Gelser objected that people with intellectual disabilities who lived in group homes and their direct service professionals had been left off the state 's priority list to get the COVID-19 vaccine .
In November , the state amended its list and they were added .
That made Oregon one of the first states — and likely the first , but there is no @ @ @ @ @ @ @ — in the country to prioritize group home residents .
Frazzini reports that the man who back in April had difficulty getting a coronavirus test ran a high fever again in October and returned to the hospital ER .
This time he got tested quickly and respectfully .
Frazzini gives the hospital credit for changing .
`` They really listened , '' she says .
Frazzini was asked to join the hospital 's ethics committee — her first meeting is scheduled for January — to give the hospital perspective about disability .
And @ @ @ @ @ @ @ `` crisis care principles '' for health care providers , who were then facing a surge of new COVID-19 patients .
Once again , there was fear of needing to ration scarce care .
This time , the guidance from the Oregon Health Authority focused on the responsibility of doctors and hospitals to provide care in ways that did not discriminate against people on the basis of disability , race and other categories protected by civil rights law .
`` Any approach to triaging care , '' the new guidance said , can @ @ @ @ @ @ @ basis of an underlying medical condition or a disability .
Dana Hargunani , the Oregon Health Authority 's chief medical officer , told NPR that the agency is asking doctors and hospitals `` to really consider the role that implicit bias has played . ''
When the Oregon Health Authority announced the new equity principles , officials highlighted the advocacy of DRO and Gelser and thanked them for helping to shape the new plan .
The changes in Oregon echoed the evolution of guidelines in other states .
State and national disability groups @ @ @ @ @ @ @ Civil Rights at the federal Department of Health and Human Services , the agency that enforces anti-discrimination laws in health care .
The Office for Civil Rights has announced its own settlements with several states to rewrite their crisis standards of care .
Tennessee and Pennsylvania agreed to quit letting doctors use `` quality of life '' scores to determine who gets scarce care .
Connecticut agreed to let family members into hospitals to help people with disabilities who have difficulty communicating .
And Utah agreed to bar doctors from issuing blanket do-not-resuscitate @ @ @ @ @ @ @ in all of these cases : Why was care rationed to people with disabilities at a time when Oregon 's hospitals were not overcrowded , when there were no shortages of treatment ?
In early April , Governor Brown announced that Oregon was sending 140 ventilators to hard-hit New York .
`` We are all in this together , '' she said .
So , if there was no shortage , why were McSweeney and the woman in Pendleton denied ventilators ?
Gelser — who has an adult son with an intellectual disability @ @ @ @ @ @ @ There has always been a bias against people with disabilities in the health care system , she says .
It was largely hidden .
The coronavirus made it visible — and then the virus made it worse .
`` COVID has put a giant magnifying glass on inequities in health care delivery '' for people with disabilities , Gelser says .
`` For the first time , we see in a more pressing and public way how deadly that can be . ''
In the pandemic , doctors — worried about potential shortages @ @ @ @ @ @ @ care to others .
`` So before we even needed to triage , '' Gelser says , `` medical systems were deciding on reserving resources for nondisabled people that the system valued more , in case they ran out of resources later . ''

Oregon Hospitals Didn't Have Shortages. So Why Were Disabled People Denied Care?
Enlarge this image toggle caption Jenny Kane/AP Jenny Kane/AP
At the start of the coronavirus pandemic, a small group of disability rights advocates found itself in a race against time to save the life of a woman with an intellectual disability.
The woman was taken to the hospital with COVID-19. But the hospital, in a small Oregon town, denied the ventilator she needed. Instead, a doctor, citing her "low quality of life," wanted her to sign a legal form to allow the hospital to deny her care.
Out of that quiet fight in early spring, the advocates — staff at a disability rights legal group, a state lawmaker and a few others — discovered something disturbing: There were many cases in Oregon of health care being rationed to people with disabilities.
At the same moment, across the United States, disability groups and even a civil rights office of the U.S. government were raising a similar warning: that behind closed doors, people with disabilities, as well as elderly people, were in danger of being denied health care.
NPR was looking for cases, too, and heard about the woman in Pendleton while she was in the hospital.
There's no reason that these examples would occur more frequently in Oregon than in other states. But the fight for that anonymous woman with an intellectual disability peeled back the curtain on health care decision-making in Oregon in a way that did not happen in other states.
That activism led to change in Oregon — including anti-discrimination legislation and new statewide policies.
It was late March when the woman with an intellectual disability contracted COVID-19. She struggled to breathe.
In the hospital, a medical provider wrote do-not-resuscitate (DNR) and do-not-intubate orders for the woman. Those are medical instructions to health care providers to withhold potentially painful interventions, like a ventilator or CPR, if a patient stops breathing or the patient's heart stops. The woman was alone in the hospital and did not understand what the doctor and medical staff wanted her to agree to.
In addition, the hospital staff sent word to the woman's group home: Fill out DNRs in advance for your other residents, in case one of them comes to the hospital.
People who worked with the woman were angry that the doctor and the hospital seemed to be discounting the lives of people with disabilities.
Someone tracked down lawyers for help.
The lawyers work for Disability Rights Oregon (DRO), a federally funded legal group that protects the rights of people with disabilities. State Sen. Sara Gelser, who chairs Oregon's Senate Committee on Human Services, was notified too.
NPR knows some details of the case in Pendleton based on interviews with state officials, lawyers and others in Oregon, as well as from documents obtained through a public records request.
Because of privacy laws, those we spoke to could talk only generally of the case and the person involved. They couldn't confirm the gender of the person. NPR knows the person was a woman because of references in the state documents we obtained. Officials at DRO said they cannot confirm the place where the case happened. State documents show it was in Pendleton, a town with one small, 25-bed hospital.
The report from Pendleton alarmed staff at DRO. "We investigated and substantiated it," Jake Cornett, executive director of DRO, told NPR. A person with an intellectual disability was "being inappropriately influenced about life-sustaining treatment. And the physician in that case talked about the quote 'low quality of life' of a person with a disability." Cornett made the same points, briefly, in testimony to the state legislature.
Enlarge this image toggle caption Ramsey Cox Ramsey Cox
At the hospital, the intellectually disabled woman needed to be on a ventilator immediately.
Emily Cooper, the legal director at DRO, threatened to sue the hospital. The woman was moved to another hospital, where she was placed in the intensive care unit and on a ventilator.
Her condition was dire. There was fear, according to a letter that state Senator Gelser sent to the governor's office and state health officials, that the woman had been left "without appropriate and necessary care for two days" and that the time without a ventilator had put her life at risk.
The woman's advocates worried that she might die. But after several days in the new hospital, the woman recovered. She returned to her group home.
Still, even that success left Cooper worried.
"The threat of litigation and the threat of exposing the depth and the whiff of discrimination in our state, I think, was enough to get people to do the right thing," says Cooper. "But what that meant is you needed to have a lawyer call or you needed to have someone that had the gravitas to push for that."
Most people with disabilities and their families don't have lawyers working for them. And DRO and state officials were getting more reports from around the state of health care being denied.
Gelser urged the governor and state officials to make it clear that doctors could not write blanket DNRs for patients with disabilities.
"I remain deeply concerned about the situation in Pendleton," Gelser wrote on April 10 in an email to state officials. "We only know about it because someone knew to call for help. If that call had not happened and DRO had not engaged, it is not hard to imagine the person would have died."
Gelser, in the email obtained by NPR in its records request, urged state officials to sanction the hospital. "The providers, as far as I can tell, have been given no clear signal that what they did was wrong and should not occur again," she wrote. "A strong, pointed statement about the rights of elderly and disabled people is desperately needed at this time."
The Oregon Health Authority "received a complaint in April 2020 related to patients' rights," a spokesperson told NPR. But it concluded "that we would not be able to investigate." The main allegation was against the doctor, and the health authority does not have "jurisdiction over individual health care providers."
Enlarge this image toggle caption Kelly Robbins Kelly Robbins
It was up to the organization that accredits the hospital, the health authority concluded.
NPR checked with the Joint Commission, the accrediting body. A spokesperson said it had not received a complaint. But as a result of NPR's inquiry, the spokesperson said, it had opened a review of the incident.
"Nothing happened to that hospital. Nothing happened to that physician," Gelser told NPR. "The health authority confirmed that, in fact, that was a coerced do-not-intubate order, that they confirmed it happened ... but there was no sanction. So there was no remedy."
Adds Gelser: "This is immoral. We do not respond to disability discrimination in the way that we should."
CHI St. Anthony is the one hospital in Pendleton. In a statement to NPR, the hospital said: "For reasons of patient confidentiality, we are not able to comment on any specific situation or patient. We are committed to providing compassionate and high quality care to every patient, without regard to anyone's ability or disability. St. Anthony Hospital categorically denies any allegations to the contrary. We are unaware of any complaint to the Oregon Health Authority such as you have described."
NPR reached out to the disabled woman who survived COVID-19. But the woman, traumatized and confused by her time in the hospital, does not speak about it.
Federal laws, notably the Americans with Disabilities Act and the Affordable Care Act, prohibit health care discrimination — including denial of care — based solely on a person's disability.
The Office for Civil Rights at the U.S. Department of Health and Human Services explained the law in guidance at the start of the pandemic. When care is scarce, doctors are allowed to decide who gets it and who doesn't. They can decide who is most likely to do best with that treatment by making an "individualized assessment of the patient" based on objective medical evidence.
But doctors can't rule out people because they have a specific disability — for example, dementia or using portable ventilators every day to help themselves breathe. "Persons 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' based on the presence or absence of disabilities or age," the civil rights office explained.
OCR issued those guidelines on March 28 after national and state disability groups raised alarm that states had issued rationing plans that allowed discrimination against elderly and disabled people. Oregon was one of 29 states that issued "crisis standards of care" guidelines to doctors and health care systems about how to allot scarce medical care in case of a crisis — like a terrorism event, a natural disaster or a pandemic. In early May, Disability Rights Oregon led a coalition of 21 state and national disability and civil rights groups and filed a complaint about Oregon's standards with OCR.
The near death in Pendleton spurred the advocates to watch for other cases. One state official, who handled complaints at residential facilities, wrote to Gelser in April that her office had received and investigated complaints of hospitals and physicians "inappropriately" asking people with disabilities to fill out a legal form to limit care, according to the documents obtained by NPR.
Gelser heard reports of disabled and elderly people who had symptoms of COVID-19, went to the hospital and were denied tests, treatment or even lifesaving care. "We had hospitals that were trying to immediately discharge people and saying that they needed to go home for palliative or comfort care, instead of actual treatment," she says.
There are additional cases in the public documents that NPR collected. In April, a health care system in Salem, Ore., sent an "urgent message" to area group homes for people with disabilities, telling them not to bring residents with symptoms of COVID-19 to the emergency room unless "they are so sick they require hospitalization," according to the letter.
That was alarming, Gelser says, because it "discouraged people from bringing in clients that needed care. It also indicated people would be discharged prematurely — and into group homes that didn't have the capacity to provide appropriate care."
A spokesperson for Salem Health said it had focused in early spring on being prepared to handle a large number of coronavirus cases. "During the unknowns of the spring surge, this meant preserving hospital capacity for those who truly required hospital-level care," the spokesperson said, adding that the system followed state and federal guidelines for best practices and has changed its policies as those standards have changed.
The state records that NPR obtained show other people with disabilities were denied coronavirus tests or treatment when they showed up at hospitals with symptoms.
Sarah Frazzini, the executive director of Benco, a nonprofit agency that provides housing and other services to people with disabilities, points to the story of one of her residents.
On April 2, the 64-year-old man was running a high fever, and staff at his group home worried that he'd contracted COVID-19. They took him to the emergency room at Good Samaritan Regional Medical Center in Corvallis.
The man has a significant intellectual disability. He doesn't speak words. He's quadriplegic. He can't swallow and is fed through a tube.
Medical staff in the emergency room refused to test him for the coronavirus. Frazzini told the story to NPR, as well as to state lawmakers in a June hearing. It would be a "waste of valuable PPE," or personal protective equipment, a member of the medical team said, angrily, in front of the man, according to Frazzini. At the time, there were shortages of PPE in Oregon and nationwide.
He was eventually tested after a staff worker for the agency that ran the man's group house insisted, Frazzini told NPR. The man was admitted to the hospital. It turned out he had pneumonia, not COVID-19.
When, after six days, he was discharged, Frazzini said in the hearing and to NPR, a physician in an online call made a recommendation: The group home should stop the man's care and nutrition and begin end-of-life hospice care. According to Frazzini, the doctor said the man, with his multiple disabilities, had a "low quality of life."
The staff member who worked for him was furious. The man was not dying. His condition was the same as before he'd entered the hospital. He'd lived this way for years. Frazzini says her staff felt the doctor had seen a man with significant disabilities and had made a judgment that his life didn't matter.
The man is in good health today. He lives in his group home and spends days in his favorite recliner, watching his favorite superhero movies and enjoying the brightly colored tropical fish in his large aquarium.
The man "lives a dignified and fulfilled life," Frazzini told lawmakers. "To have to fight so hard for the COVID test, to hear statements about giving the test being a 'waste of valuable PPE' and to have the physician recommend at discharge to end his life is absolutely appalling," she said at the hearing.
A spokesperson for Samaritan Health Services said that he could not comment on the care of a specific patient but that the hospital's policies have evolved since the spring based on changes in state recommendations.
In the documents obtained by NPR, there are other reports of people with intellectual disabilities being told to sign a do-not-resuscitate order as a condition before being admitted. At other hospitals, they were separated from their caregivers and pressured to sign a document they did not understand.
Or, as in Sarah McSweeney's case, her guardians felt pressured.
Before she went to the hospital, McSweeney loved it when staff at her group home took her to the shopping mall to get her hair done and to country music concerts. The 45-year-old woman had multiple disabilities. She was quadriplegic, so staff at her group home in Oregon City pushed her in her bright pink wheelchair. She couldn't swallow, so the direct service professionals — the caregivers at the group home — fed her through a gastrostomy tube that sent nutrition directly to her stomach. She couldn't speak words, but the people who worked for her could understand her by her sounds and facial expressions.
Enlarge this image toggle caption Joshua Peyton Joshua Peyton
"And even though she had these medical issues, she was vivacious. She just lived her life," says Heidi Barnett, who worked with her. "She had a pretty full life. And you were blessed if you got to meet her."
NPR told McSweeney's story earlier this month.
Barnett works for the Arc Oregon in its guardianship program. She helped McSweeney make decisions about her life and health care. She helped McSweeney draft the legal document that went with her to the hospital: It said that she wanted full medical care.
But after McSweeney went to the hospital on April 21 with a high fever, doctors and social workers called Barnett — who wrote up detailed notes of these calls — and tried to get her to accept a do-not-resuscitate order for McSweeney.
Tests showed McSweeney did not have COVID-19. But in the hospital she had episodes of aspiration pneumonia, when fluid backed up into her lungs.
In the hospital, a doctor told Kimberly Conger, the nurse manager from Community Access Services, which ran the group house where McSweeney lived, that she needed to be on a ventilator. "We discussed the possibility of her being intubated and letting the lung rest, giving her time to heal and letting the antibiotics do their magic," says Conger.
But then the doctor questioned whether it was worth doing, citing McSweeney's "quality of life." Conger says she objected to that. "And he looked at me and goes: 'Oh, she can walk? And talk?' " she says the doctor asked, moving his fingers in the air in a walking motion.
Conger replied: "There's a lot of people who don't walk who have full quality of life."
McSweeney was not moved back to the ICU and was not put on a ventilator. She died on May 10 of severe sepsis because of aspiration pneumonia.
"We believe there was bias and discrimination in the care provided," Anna Keenan-Mudrick, executive director of Community Access Services, told Gelser's committee in June.
A spokeswoman for the hospital, Providence Willamette Falls Medical Center, says: "While we have conversations with patients, family and/or guardians about care options, we do not pressure or force anyone to sign a DNR order, and we are unaware of any evidence to the contrary."
"I just think she could have gone out better," says Barnett. "They owed her more respect than she got."
After McSweeney's death, Barnett says she dealt with a similar case with another client. A 77-year-old man with an intellectual disability contracted COVID-19 and went to another Oregon hospital for treatment. But she says a doctor there, acting unilaterally, reversed the man's legal order for full treatment.
When Barnett and the man's advocates objected, she says the doctor stood firm, saying the man — who is diabetic and intellectually disabled — was "too difficult to treat." Says Barnett: "It was absolutely flooring to me." The man survived and returned home.
One of the most common causes of poor care occurred when someone who had difficulty communicating or had dementia went to the hospital alone. Family and advocates were barred, for the most part, from visiting — even when the person depended on them to communicate.
One Oregon doctor, who asked to remain anonymous in order to speak freely, told NPR about a teenage girl with significant disabilities who was on a ventilator with COVID-19 in the ICU at his hospital.
She had difficulty speaking and, typically, relied on her mother to communicate for her. The hospital arranged a videoconference with the girl and her mother to talk about ongoing care. But when the young woman saw her mother's face on the computer screen, she sobbed uncontrollably. "It was heart wrenching," the doctor told NPR. Eventually, the mother was allowed to visit.
Enlarge this image toggle caption Oregon state Sen. James Manning Oregon state Sen. James Manning
In late June, Gelser wrote and co-sponsored an anti-discrimination bill: Senate Bill 1606. It bars doctors from forcing a do-not-resuscitate or do-not-intubate order on disabled or elderly patients, either as a condition of being admitted to the hospital or as a condition for treatment. It requires doctors to honor a person's medical orders for care.
It allows people with certain disabilities to have a family member or other support person with them during a hospital stay to help explain their medical choices.
That legislation passed the legislature, and Oregon Gov. Kate Brown signed it into law on July 7.
Gelser was surprised that one section of the bill turned out to be controversial. Language that said doctors and health care providers could not discriminate on the basis of disability was stripped from the bill. Health officials worried that the language was too vague and would interfere with individual decision-making.
The debate over denial of care to people with disabilities was a quiet one in Oregon. It was a conversation largely among advocates in the disability and aging communities, medical officials and state officials.
But it resulted in positive change.
Officials in state health agencies played a role. The Oregon Association of Hospitals and Health Systems started trainings.
In September, the Oregon Health Authority withdrew the disputed state crisis standards of care. Those are the rules that doctors and hospitals can apply to ration care when it gets scarce. The drafters had failed to adequately reach out to "communities of color, tribal communities, or people with disabilities," the authority said in a letter to Gelser, and as a result the guidelines "have the potential to perpetuate discrimination on the basis of race, age or disability."
Leann Johnson, the health authority's chief equity and inclusion officer, told NPR that the move reflected the agency's plan, announced at the start of 2020, to end health care disparities by 2030.
In October, Gelser objected that people with intellectual disabilities who lived in group homes and their direct service professionals had been left off the state's priority list to get the COVID-19 vaccine. In November, the state amended its list and they were added. That made Oregon one of the first states — and likely the first, but there is no comprehensive comparison of every state's plan — in the country to prioritize group home residents.
Frazzini reports that the man who back in April had difficulty getting a coronavirus test ran a high fever again in October and returned to the hospital ER. This time he got tested quickly and respectfully.
Frazzini gives the hospital credit for changing. "They really listened," she says.
Frazzini was asked to join the hospital's ethics committee — her first meeting is scheduled for January — to give the hospital perspective about disability.
And on Dec. 8, Oregon announced new "crisis care principles" for health care providers, who were then facing a surge of new COVID-19 patients. Once again, there was fear of needing to ration scarce care. This time, the guidance from the Oregon Health Authority focused on the responsibility of doctors and hospitals to provide care in ways that did not discriminate against people on the basis of disability, race and other categories protected by civil rights law.
"Any approach to triaging care," the new guidance said, cannot "exclude" someone on the basis of an underlying medical condition or a disability. Dana Hargunani, the Oregon Health Authority's chief medical officer, told NPR that the agency is asking doctors and hospitals "to really consider the role that implicit bias has played."
When the Oregon Health Authority announced the new equity principles, officials highlighted the advocacy of DRO and Gelser and thanked them for helping to shape the new plan.
The changes in Oregon echoed the evolution of guidelines in other states. State and national disability groups had brought complaints to the Office for Civil Rights at the federal Department of Health and Human Services, the agency that enforces anti-discrimination laws in health care.
The Office for Civil Rights has announced its own settlements with several states to rewrite their crisis standards of care. Tennessee and Pennsylvania agreed to quit letting doctors use "quality of life" scores to determine who gets scarce care. Connecticut agreed to let family members into hospitals to help people with disabilities who have difficulty communicating. And Utah agreed to bar doctors from issuing blanket do-not-resuscitate orders.
There was one lingering question in all of these cases: Why was care rationed to people with disabilities at a time when Oregon's hospitals were not overcrowded, when there were no shortages of treatment?
In early April, Governor Brown announced that Oregon was sending 140 ventilators to hard-hit New York. "We are all in this together," she said.
So, if there was no shortage, why were McSweeney and the woman in Pendleton denied ventilators?
Gelser — who has an adult son with an intellectual disability — thinks she has an answer.
There has always been a bias against people with disabilities in the health care system, she says. It was largely hidden.
The coronavirus made it visible — and then the virus made it worse.
"COVID has put a giant magnifying glass on inequities in health care delivery" for people with disabilities, Gelser says. "For the first time, we see in a more pressing and public way how deadly that can be."
In the pandemic, doctors — worried about potential shortages for some — made decisions to deny care to others. "So before we even needed to triage," Gelser says, "medical systems were deciding on reserving resources for nondisabled people that the system valued more, in case they ran out of resources later."


npr--2020-12-21--Epidemiologists Urge A Cautious Christmas, After Thanksgiving Surge in Some States

Epidemiologists Urge A Cautious Christmas , After Thanksgiving Surge in Some States As Thanksgiving approached , Americans were bombarded with warnings that holiday travel and gatherings would bring a `` surge on top of a surge '' — setting the country on a precarious path as it entered the next round of holidays in late December .
Three weeks later , many places are now contending with a wave of infections that local health authorities say were fueled by the Thanksgiving holiday , although some regions appear to have evaded a dramatic rise , at least so far .
`` @ @ @ @ @ @ @ cases in many locations around the United States that are associated with the Thanksgiving dinners , family get-togethers and social events , '' says Michael Osterholm , an epidemiologist and director of the Center for Infectious Disease Research and Policy at the University of Minnesota .
Much of the evidence comes from health departments that are tracing clusters of cases , but Osterholm suspects that hospitalizations and deaths — `` lagging indicators '' — will reveal the full impact in a few more weeks .
In the Texas capital of Austin , public @ @ @ @ @ @ @ surge of new infections that risks overwhelming hospitals .
Massachusetts Governor Charlie Baker has urged residents not to `` have a repeat '' of Thanksgiving in the next round of holidays .
And California — where cases have shot up a staggering 150 % over the past two weeks — appears to be in the throes of a surge that is at least partly linked to Thanksgiving .
But even though the nationwide picture is mixed , Osterholm urges caution for the Christmas and New Year 's holidays .
`` No one 's @ @ @ @ @ @ @ , '' says Osterholm , `` but we do n't want our future Christmases eliminated because somebody became infected and died .
And that is exactly the experience we 're seeing off of Thanksgiving .
So please take that as a hard lesson . ''
In Philadelphia , cases were falling before the holiday and about five days later daily case numbers jumped by about 50 percent , says Dr. Thomas Farley , health commissioner for the city of Philadelphia .
His department found many examples of families and friends getting infected after @ @ @ @ @ @ @ case of one woman who started to develop symptoms the day before having 10 people over to celebrate .
`` By the time we caught up with her early next week , seven of those 10 guests were now testing positive , '' Farley says , `` Multiply that even a few hundred times across the city , that 's enough to drive an entire epidemic . ''
With cases so widespread , the country is essentially a sea of small outbreaks , with each community on its own trajectory , says Ellie @ @ @ @ @ @ @ at the Boston University School of Public Health .
The U.S is breaking daily records and hospitals are fuller than they 've ever been in the pandemic , but it 's too early to know exactly how much of that can be linked to Thanksgiving , says Murray .
`` We 're reasonably in a position where we can say that the really massive tsunami of cases did n't happen and that suggests the precautions people took , on average , were pretty good , '' says Murray .
A month ago , @ @ @ @ @ @ @ 163,000 new cases a day .
The U.S. is now averaging more than 215,000 new cases a day .
Some states with dire outbreaks in November put mask mandates in place just before Thanksgiving and have seen the pandemic slow down since then .
Iowa , for instance , started a mask mandate on Nov. 17 .
In mid-November , Iowa reached an average peak of nearly 5,000 new daily cases but that has now dropped to just under 1,600 new cases a day .
`` It looks from the data that we @ @ @ @ @ @ @ was n't as bad as it could have been , it was n't as good as it could have been , '' Murray says .
Doctors see the frightening fallout from Thanksgiving first hand It was about ten days after Thanksgiving when Vishnu Chundi , an infectious disease physician in Chicago , started to see the aftermath of the holiday in his hospital .
In one case , a retired nurse he knew , as well as her husband and two children , all got infected after a dinner gathering .
`` She @ @ @ @ @ @ @ her and yet it did .
And that 's the take-home point for all of this , '' says Chundi , who chairs a COVID Task Force for the Chicago Medical Society .
The nurse 's husband and children survived ; his former colleague did not .
`` It just broke my heart when she died . ''
Chundi says there are `` innumerable examples '' among his clinical colleagues of families who had visitors over for Thanksgiving dinner and ended up getting sick .
`` This is unnecessary , and it 's @ @ @ @ @ @ @ a lot of quality life left being taken away by this virus , '' he says .
At his hospital in Washington state , Dr. Nathan Schlicher is also seeing patients who appear to have contracted the virus during a multigenerational Thanksgiving gathering .
`` I took care of a 3-month-old last night that had been together with grandma , and grandma had COVID , '' he says .
`` Unfortunately the 3-month-old now has COVID . ''
Schlicher shares the temptation to see his parents and sisters over the Christmas holidays , @ @ @ @ @ @ @ He actually got the first dose of the COVID-19 vaccine this week , but he has no plans to change his behavior .
`` I could still get the disease and it does n't change the fact that the rest of my family is n't vaccinated . ''
One day can 'change the entire course' While it 's hard to draw conclusions nationally , some local and state health departments report that the Thanksgiving holiday clearly ushered in a new infection within their communities .
`` There is no question in my mind @ @ @ @ @ @ @ get-togethers on a single day can change the entire course of the epidemic , '' says Farley , the Philadelphia health commissioner .
On Long Island , a surge emerged within a week of Thanksgiving — in much the same way it did after Halloween , says Dr. Gregson Pigott , Suffolk County Commissioner of Health .
`` That 's the frustrating thing , we 're trying to do our best to control the pandemic , to keep a lid on it , but despite our best efforts the numbers are going up @ @ @ @ @ @ @ jumped from around 600 to about 900 starting in early December and infections have not slowed down since , he says .
The spike came even after public advisories and media coverage called on people to limit gatherings to immediate members of a household and to avoid travel .
`` I see all these messages out there , but we ca n't control human behavior , '' Pigott says .
Not all states suffered the same fate .
Some states believe they may have dodged a post-Thanksgiving surge .
Oregon and Colorado did @ @ @ @ @ @ @ after the holiday .
It was a similar situation in the hard-hit upper Midwest , including Minnesota and Michigan .
In other places , it 's possible the holiday did not make a big difference because there are many other events driving infections .
Dr. Karen Landers , assistant state health officer for the Alabama Department of Public Health , says her state is finding some cases related to the holiday .
`` But we were already in an upward trend , so it 's just another event on top of an upward @ @ @ @ @ @ @ story is from NPR 's partnership with Kaiser Health News .

Epidemiologists Urge A Cautious Christmas, After Thanksgiving Surge in Some States
Enlarge this image toggle caption Jae C. Hong/AP Jae C. Hong/AP
As Thanksgiving approached, Americans were bombarded with warnings that holiday travel and gatherings would bring a "surge on top of a surge" — setting the country on a precarious path as it entered the next round of holidays in late December.
Three weeks later, many places are now contending with a wave of infections that local health authorities say were fueled by the Thanksgiving holiday, although some regions appear to have evaded a dramatic rise, at least so far.
"We are seeing a tremendous surge in cases in many locations around the United States that are associated with the Thanksgiving dinners, family get-togethers and social events," says Michael Osterholm, an epidemiologist and director of the Center for Infectious Disease Research and Policy at the University of Minnesota.
Much of the evidence comes from health departments that are tracing clusters of cases, but Osterholm suspects that hospitalizations and deaths — "lagging indicators" — will reveal the full impact in a few more weeks.
In the Texas capital of Austin, public health authorities said that Thanksgiving drove a surge of new infections that risks overwhelming hospitals. Massachusetts Gov. Charlie Baker has urged residents not to "have a repeat" of Thanksgiving in the next round of holidays. And California — where cases have shot up a staggering 150% over the past two weeks — appears to be in the throes of a surge that is at least partly linked to Thanksgiving.
But even though the nationwide picture is mixed, Osterholm urges caution for the Christmas and New Year's holidays.
"No one's trying to take Christmas away from anyone," says Osterholm, "but we don't want our future Christmases eliminated because somebody became infected and died. And that is exactly the experience we're seeing off of Thanksgiving. So please take that as a hard lesson."
In Philadelphia, cases were falling before the holiday and about five days later daily case numbers jumped by about 50%, says Dr. Thomas Farley, health commissioner for the city of Philadelphia.
His department found many examples of families and friends getting infected after sharing a meal together, including the case of one woman who started to develop symptoms the day before having 10 people over to celebrate.
"By the time we caught up with her early next week, seven of those 10 guests were now testing positive," Farley says. "Multiply that even a few hundred times across the city, that's enough to drive an entire epidemic."
With cases so widespread, the country is essentially a sea of small outbreaks, with each community on its own trajectory, says Ellie Murray, an assistant professor of epidemiology at the Boston University School of Public Health.
The U.S is breaking daily records and hospitals are fuller than they've ever been in the pandemic, but it's too early to know exactly how much of that can be linked to Thanksgiving, says Murray.
"We're reasonably in a position where we can say that the really massive tsunami of cases didn't happen and that suggests the precautions people took, on average, were pretty good," says Murray.
A month ago, before Thanksgiving, the U.S. averaged about 163,000 new cases a day. The U.S. is now averaging more than 215,000 new cases a day. Some states with dire outbreaks in November put mask mandates in place just before Thanksgiving and have seen the pandemic slow down since then. Iowa, for instance, started a mask mandate on Nov. 17. In mid-November, Iowa reached an average peak of nearly 5,000 new daily cases but that has now dropped to just under 1,600 new cases a day.
"It looks from the data that we're in some middle place; it wasn't as bad as it could have been, it wasn't as good as it could have been," Murray says.
Doctors see the frightening fallout from Thanksgiving firsthand
It was about 10 days after Thanksgiving when Vishnu Chundi, an infectious disease physician in Chicago, started to see the aftermath of the holiday in his hospital.
In one case, a retired nurse he knew, as well as her husband and two children, all got infected after a dinner gathering.
"She didn't think this could happen to her and yet it did. And that's the take-home point for all of this," says Chundi, who chairs a COVID Task Force for the Chicago Medical Society. The nurse's husband and children survived; his former colleague did not. "It just broke my heart when she died."
Chundi says there are "innumerable examples" among his clinical colleagues of families who had visitors over for Thanksgiving dinner and ended up getting sick.
"This is unnecessary, and it's sad to watch people who still have a lot of quality life left being taken away by this virus," he says.
At his hospital in Washington state, Dr. Nathan Schlicher is also seeing patients who appear to have contracted the virus during a multigenerational Thanksgiving gathering.
"I took care of a 3-month-old last night that had been together with grandma, and grandma had COVID," he says. "Unfortunately the 3-month-old now has COVID."
Schlicher shares the temptation to see his parents and sisters over the Christmas holidays, but he won't do it.
He actually got the first dose of the COVID-19 vaccine this week, but he has no plans to change his behavior.
"I could still get the disease and it doesn't change the fact that the rest of my family isn't vaccinated."
One day can "change the entire course"
While it's hard to draw conclusions nationally, some local and state health departments report that the Thanksgiving holiday clearly ushered in a new infection within their communities.
"There is no question in my mind that we now know from Thanksgiving that get-togethers on a single day can change the entire course of the epidemic," says Farley, the Philadelphia health commissioner.
On Long Island, a surge emerged within a week of Thanksgiving — in much the same way it did after Halloween, says Dr. Gregson Pigott, Suffolk County commissioner of health.
"That's the frustrating thing, we're trying to do our best to control the pandemic, to keep a lid on it, but despite our best efforts the numbers are going up," he says.
Daily cases jumped from around 600 to about 900 starting in early December and infections have not slowed down since, he says. The spike came even after public advisories and media coverage called on people to limit gatherings to immediate members of a household and to avoid travel.
"I see all these messages out there, but we can't control human behavior," Pigott says.
Not all states suffered the same fate. Some states believe they may have dodged a post-Thanksgiving surge.
Oregon and Colorado did not see a marked increase in cases after the holiday. It was a similar situation in the hard-hit upper Midwest, including Minnesota and Michigan.
In other places, it's possible the holiday did not make a big difference because there are many other events driving infections.
Dr. Karen Landers, assistant state health officer for the Alabama Department of Public Health, says her state is finding some cases related to the holiday.
"But we were already in an upward trend, so it's just another event on top of an upward trend," she says.
This story is from NPR's partnership with Kaiser Health News.


npr--2020-12-21--'Ugly,' 'Discordant': New Executive Order Takes Aim At Modern Architecture

Back in February , President Trump set the architectural world reeling with a call for traditional designs for new federal buildings .
He proposed an executive order , called `` Make Federal Buildings Beautiful Again , '' which took an out-with-the-new , in-with-the-old approach to architecture , calling modern federal buildings constructed over the last five decades `` undistinguished , '' `` uninspiring '' and `` just plain ugly . ''
That proposed order is now a reality .
Retitled `` Promoting Beautiful Federal Civic Architecture , '' it begins with a paean to `` beautiful public architecture , '' @ @ @ @ @ @ @ disapproval aimed at modernist federal buildings .
It 's true that modernism abounds in D.C .
Standing on a street corner near the National Mall , there 's actually a mishmash of architectural styles .
Let 's talk about three of them : In the distance , the gleaming white pillars of the U.S. Capitol dome , the kind of classical architecture the president 's order favors .
Closer in , there 's a towering , steel-mesh scrim that 's part of the Eisenhower Memorial , a contemporary design by Frank Gehry which @ @ @ @ @ @ @ scrim , there 's the beige , boxy , concrete-heavy Department of Education , a Brutalist building — the style a lot of people love to hate .
Marion Smith of the National Civic Art Society is one of them .
He looks at this entire vista with disgust .
`` From where I 'm standing , I see modernist structures , and the only hint of a classical building I can see is the top of the U.S. dome , '' he says .
`` That is not what our founders had @ @ @ @ @ @ @ reigning orthodoxy of modernist , Brutalist , postmodern design . ''
( Brutalism was a popular movement with architects beginning in the 1950s , but it 's mostly fallen out of favor . )
The Society led a six-year campaign against Gehry 's Eisenhower memorial , which forced the architect to make some changes to his orginal design .
And the organization has been the driving force behind the President 's Executive Order .
NCAS president Justin Shubow issued a statement today in praise of the final order .
`` Since the mid-19th @ @ @ @ @ @ @ have been forcing ugly designs upon us , '' he wrote .
`` President Trump stood firm for tradition and beauty in public architecture , and for the heartfelt desires of the American people . ''
Utah Senator Mike Lee is no fan of modernism either .
He wrote an article in the Federalist in February calling the proposed order `` the second best news out of Washington this week , '' and excoriating buildings like the U.S .
Courthouse in Salt Lake City .
`` It looks like a giant swamp cooler @ @ @ @ @ @ @ coated with this sort of material that you would see on your braces when you were in junior high .
It just is n't pretty , '' he tells me .
He adds , `` I sometimes ask myself and ask others , is it any wonder that Americans ' confidence in government has collapsed , and the government itself has grown hopelessly dysfunctional in the decades since Washington abandoned classical design principles in favor of elite modernist fads and ugly buildings that they inevitably produce ? ''
Others feel differently .
`` @ @ @ @ @ @ @ , '' says Robert Ivy .
He 's the head of the American Institute of Architects , and he says the order does n't account for today 's office buildings , which need to be efficient and equipped for both technology and security .
`` In the 21st century , we 're very different people from the people who popularized Greek Revival architecture in the 19th century , as beautiful as it was , '' he says .
`` To try to force-fit new systems in old forms is , in of itself @ @ @ @ @ @ @ is not who we are today . ''
The executive order would only mandate classical architecture for federal buildings in Washington , DC .
It would not include the city 's Smithsonian museums , and it 's unclear whether it would affect memorials .
The order defines `` classical '' as including Neoclassical , Georgian , Greek Revival , Gothic and other traditional styles , and mostly trashes federal buildings constructed from the 1950s on — taking pains to define and decry both brutalism and deconstructivism .
It also establishes a President 's @ @ @ @ @ @ @ and tasks it with making sure proposed federal buildings are `` beautiful and reflective of the dignity , enterprise , vigor , and stability of the American system of self-government . ''
Part of the council 's duties will also include preparing a report recommending policy updates aimed at accomplishing that mission .
The order does single out one recent building for praise : The federal building and courthouse in Tuscaloosa , Alabama , designed by HBRA Architects in Chicago and completed in 2011 .
`` We 're very proud of it , @ @ @ @ @ @ @ He says the Tuscaloosa building is partly modeled after Greek temples , with columns and classical , ornamental motifs .
But his firm used that style because that 's what this particular building , location and community called for .
He says it would be `` preposterous '' for the government to dictate any style of architecture : `` The artistic potential of architecture and the artistic productivity of the American people does not necessarily emerge through fiat . ''
The newly created federal council will serve until Sept. 30 , 2021 , @ @ @ @ @ @ @ by then , but it 's unclear how — or whether — the incoming administration will act on those recommendations .
Ted Robbins edited this story for radio , and Petra Mayer adapted it for the Web .

'Ugly,' 'Discordant': New Executive Order Takes Aim At Modern Architecture
Enlarge this image toggle caption ERIC BARADAT/AFP via Getty Images ERIC BARADAT/AFP via Getty Images
Updated at 12:30pm ET
Back in February, President Trump set the architectural world reeling with a call for traditional designs for new federal buildings. He proposed an executive order, called "Make Federal Buildings Beautiful Again," which took an out-with-the-new, in-with-the-old approach to architecture, calling modern federal buildings constructed over the last five decades "undistinguished," "uninspiring" and "just plain ugly."
That proposed order is now a reality. Retitled "Promoting Beautiful Federal Civic Architecture," it begins with a paean to "beautiful public architecture," before moving on to a litany of disapproval aimed at modernist federal buildings.
It's true that modernism abounds in D.C. Standing on a street corner near the National Mall, there's actually a mishmash of architectural styles. Let's talk about three of them: In the distance, the gleaming white pillars of the U.S. Capitol dome, the kind of classical architecture the president's order favors. Closer in, there's a towering, steel-mesh scrim that's part of the Eisenhower Memorial, a contemporary design by Frank Gehry which is under construction. Right behind the scrim, there's the beige, boxy, concrete-heavy Department of Education, a Brutalist building — the style a lot of people love to hate.
Enlarge this image toggle caption Ricardo630/Wikimedia Commons Ricardo630/Wikimedia Commons
Marion Smith of the National Civic Art Society is one of them. He looks at this entire vista with disgust. "From where I'm standing, I see modernist structures, and the only hint of a classical building I can see is the top of the U.S. dome," he says. "That is not what our founders had in mind. This is a new reigning orthodoxy of modernist, Brutalist, postmodern design." (Brutalism was a popular movement with architects beginning in the 1950s, but it's mostly fallen out of favor.) The Society led a six-year campaign against Gehry's Eisenhower memorial, which forced the architect to make some changes to his orginal design.
And the organization has been the driving force behind the President's Executive Order. NCAS president Justin Shubow issued a statement today in praise of the final order. "Since the mid-20th century, Modernist mandarins controlling government architecture have been forcing ugly designs upon us," he wrote. "President Trump stood firm for tradition and beauty in public architecture, and for the heartfelt desires of the American people."
Utah Senator Mike Lee is no fan of modernism either. He wrote an article in the Federalist in February calling the proposed order "the second best news out of Washington this week," and excoriating buildings like the U.S. Courthouse in Salt Lake City. "It looks like a giant swamp cooler or a giant ice cube that's coated with this sort of material that you would see on your braces when you were in junior high. It just isn't pretty," he tells me.
Enlarge this image toggle caption Timothy Hursley Timothy Hursley
He adds, "I sometimes ask myself and ask others, is it any wonder that Americans' confidence in government has collapsed, and the government itself has grown hopelessly dysfunctional in the decades since Washington abandoned classical design principles in favor of elite modernist fads and ugly buildings that they inevitably produce?"
Others feel differently. "We are absolutely opposed to this order," says Robert Ivy. He's the head of the American Institute of Architects, and he says the order doesn't account for today's office buildings, which need to be efficient and equipped for both technology and security. "In the 21st century, we're very different people from the people who popularized Greek Revival architecture in the 19th century, as beautiful as it was," he says. "To try to force-fit new systems in old forms is, in of itself difficult to do, inefficient, and is not who we are today."
The executive order would only mandate classical architecture for federal buildings in Washington, DC. It would not include the city's Smithsonian museums, and it's unclear whether it would affect memorials. The order defines "classical" as including Neoclassical, Georgian, Greek Revival, Gothic and other traditional styles, and mostly trashes federal buildings constructed from the 1950s on — taking pains to define and decry both brutalism and deconstructivism. It also establishes a President's Council on Improving Federal Civic Architecture, and tasks it with making sure proposed federal buildings are "beautiful and reflective of the dignity, enterprise, vigor, and stability of the American system of self-government." Part of the council's duties will also include preparing a report recommending policy updates aimed at accomplishing that mission.
The order does single out one recent building for praise: The federal building and courthouse in Tuscaloosa, Alabama, designed by HBRA Architects in Chicago and completed in 2011.
"We're very proud of it," says HBRA architect Aric Lasher. He says the Tuscaloosa building is partly modeled after Greek temples, with columns and classical, ornamental motifs. But his firm used that style because that's what this particular building, location and community called for. He says it would be "preposterous" for the government to dictate any style of architecture: "The artistic potential of architecture and the artistic productivity of the American people does not necessarily emerge through fiat."
The newly created federal council will serve until Sept. 30, 2021, and is expected to submit its report by then, but it's unclear how — or whether — the incoming administration will act on those recommendations.
Ted Robbins edited this story for radio, and Petra Mayer adapted it for the Web.


npr--2020-12-21--India's Female Superhero And Her Flying Tiger Are Out To Fight The Pandemic

India 's Female Superhero And Her Flying Tiger Are Out To Fight The Pandemic Indian superhero Priya has battled rape , acid attacks and trafficking .
And now she 's fighting the new coronavirus .
Priya 's Mask is the latest installation in Priya , the hit comic book series targeted to Indian children .
This time , Priya and her flying tiger Sahas befriend a little girl named Meena to show the sacrifices made by frontline health-care workers — and why it 's important to be courageous and compassionate during the pandemic .
The 15-page comic book , available @ @ @ @ @ @ @ with a two-minute animated film , featuring the voices of Bollywood stars such as Vidya Balan and Mrunal Thakur .
Both premiered in London at the Global Health Film Festival in December .
`` When we start being anxious and thinking about ourselves , we need someone to tell us to think about the sacrifices people are making to make sure we are safe , '' says Shubhra Prakash , who wrote the script for Priya 's Mask .
In essence , she says , everyone needs a Priya to make sense of @ @ @ @ @ @ @ character of Priya , clad in a traditional outfit worn by Indian women , the salwar kameez , was created by Ram Devineni , who is Indian American , in 2014 .
The idea was to use comic books to help children in India understand difficult topics — especially those that are heavily stigmatized .
The first comic , Priya 's Shakti , was developed in response to a brutal gang rape of a young woman in a New Delhi bus in 2012 who died as a result of her injuries .
It @ @ @ @ @ @ @ stigma and sexual violence .
There 's also Priya 's Mirror , about acid attacks , and Priya and the Lost Girls , about freeing young women entrapped in the sex industry .
The comic series has earned critical acclaim , including the honor of `` gender equality champion , '' by U.N. Women and attention from the international press .
And it has garnered millions of book downloads , finding an audience in India and beyond .
Devineni and his team started envisioning Priya 's Mask in May after the U.S. Embassy @ @ @ @ @ @ @ a grant . ''
One of the motivations to bring back Priya during the pandemic was to tackle false information , says Devineni .
`` There was so much disinformation being spread on social media about the virus , blaming people of different nationalities , religions , even poor people . ''
In the new comic , Priya invites Meena to join her and Sahas — Hindi for `` courage '' — on a magical ride through the city .
Along the way to the hospital , where Meena 's mother is a @ @ @ @ @ @ @ friend who misses her grandmother 's hugs and Meena 's favorite ice-cream parlor , now empty because of the lockdown .
Meena also gets a bird 's eye ( or tiger 's eye ) view of her city and hears all the pandemic disinformation bubbling around : Someone says there is no virus , and another person says only the poor get it .
Then Priya hops across the border to Pakistan where she teams up with another iconic South Asian female superhero : Jiya from Pakistan 's comic series Burka Avenger .
@ @ @ @ @ @ @ and unmasked ) Baba Kaboom , who wants to spread the virus all over the town of Chutneyville .
Devineni had long wanted to connect Jiya and Priya , and the virus gave him that opportunity .
`` The virus does n't respect borders , '' says Devineni .
`` I thought we could come together to fight the epidemic . ''
For the team behind Priya 's Mask , scattered over different cities and continents , the comic became a `` safe space , our bubble , '' says Indrani Ray , @ @ @ @ @ @ @ 's parents are both doctors .
His father , who has been a pediatrician since 1975 in New Jersey , shut down his practice because of the pandemic .
He 's attended the funerals of two of his friends via Zoom .
Co-producer Tanvi Gandhi says her family lost someone very close to them to COVID-19 .
`` Not being able to say goodbye , it was an experience none of us will ever forget , '' she says .
Pop culture such as comics can make it easier to help important messages @ @ @ @ @ @ @ an Indian American social justice advocate and the founder of Breakthrough , a global organization that tackles hot-button social issues in creative ways , such as a video game about U.S. immigration detention and an album of ballads to talk about domestic violence .
`` Popular culture is a powerful way to influence social change , '' says Dutt , who says she loved the images in Priya 's Mask .
`` It gets people to listen and react in a way that does n't feel didactic and lecturing . ''
Devineni says @ @ @ @ @ @ @ six months ago , they had no idea if it would still be relevant by the time the film and comic got done .
But one thing he knew for sure .
`` Priya is a survivor of gender-based violence .
She 's a survivor , not a victim , '' he says .
A U.S. version of the animated film , featuring Hollywood actress Rosanna Arquette as the voice of Sahas , will soon be released .
And when it 's safer , the U.S. Embassy in New Delhi plans to distribute @ @ @ @ @ @ @ schoolchildren .
The team is already planning a future installment that will send a positive message about vaccines .
Based in Kolkata , Sandip Roy is the author of the novel Do n't Let Him Know .
He tweets @ sandipr .

India's Female Superhero And Her Flying Tiger Are Out To Fight The Pandemic
YouTube
Indian superhero Priya has battled rape, acid attacks and trafficking. And now she's fighting the new coronavirus.
Priya's Mask is the latest installation in Priya, the hit comic book series targeted to Indian children. This time, Priya and her flying tiger Sahas befriend a little girl named Meena to show the sacrifices made by frontline health-care workers — and why it's important to be courageous and compassionate during the pandemic.
The 15-page comic book, available to download for free online, comes with a two-minute animated film, featuring the voices of Bollywood stars such as Vidya Balan and Mrunal Thakur. Both premiered in London at the Global Health Film Festival in December.
"When we start being anxious and thinking about ourselves, we need someone to tell us to think about the sacrifices people are making to make sure we are safe," says Shubhra Prakash, who wrote the script for Priya's Mask. In essence, she says, everyone needs a Priya to make sense of a world turned upside down.
About Goats and Soda Goats and Soda is NPR's global health and development blog. We tell stories of life in our changing world, focusing on low- and middle-income countries. And we keep in mind that we're all neighbors in this global village. Sign up for our weekly newsletter. Learn more about our team and coverage.
The character of Priya, clad in a traditional outfit worn by Indian women, the salwar kameez, was created by Ram Devineni, who is Indian American, in 2014. The idea was to use comic books to help children in India understand difficult topics — especially those that are heavily stigmatized.
The first comic, Priya's Shakti, was developed in response to a brutal gang rape of a young woman in a New Delhi bus in 2012 who died as a result of her injuries. It portrays Priya as a rape survivor fighting stigma and sexual violence. There's also Priya's Mirror, about acid attacks, and Priya and the Lost Girls, about freeing young women entrapped in the sex industry.
The comic series has earned critical acclaim, including the honor of "gender equality champion," by U.N. Women and attention from the international press. And it has garnered millions of book downloads, finding an audience in India and beyond.
Devineni and his team started envisioning Priya's Mask in May after the U.S. Embassy in Delhi invited them to apply for a grant."
One of the motivations to bring back Priya during the pandemic was to tackle false information, says Devineni. "There was so much disinformation being spread on social media about the virus, blaming people of different nationalities, religions, even poor people."
In the new comic, Priya invites Meena to join her and Sahas — Hindi for "courage" — on a magical ride through the city. Along the way to the hospital, where Meena's mother is a frontline health worker, they see her friend who misses her grandmother's hugs and Meena's favorite ice-cream parlor, now empty because of the lockdown.
Meena also gets a bird's eye (or tiger's eye) view of her city and hears all the pandemic disinformation bubbling around: Someone says there is no virus, and another person says only the poor get it.
Then Priya hops across the border to Pakistan where she teams up with another iconic South Asian female superhero: Jiya from Pakistan's comic series Burka Avenger. Together, they tackle the mustachioed (and unmasked) Baba Kaboom, who wants to spread the virus all over the town of Chutneyville.
Devineni had long wanted to connect Jiya and Priya, and the virus gave him that opportunity. "The virus doesn't respect borders," says Devineni. "I thought we could come together to fight the epidemic."
For the team behind Priya's Mask, scattered over different cities and continents, the comic became a "safe space, our bubble," says Indrani Ray, co-producer of the animated film.
Devineni's parents are both doctors. His father, who has been a pediatrician since 1975 in New Jersey, shut down his practice because of the pandemic. He's attended the funerals of two of his friends via Zoom. Co-producer Tanvi Gandhi says her family lost someone very close to them to COVID-19. "Not being able to say goodbye, it was an experience none of us will ever forget," she says.
Pop culture such as comics can make it easier to help important messages get through, says Mallika Dutt, an Indian American social justice advocate and the founder of Breakthrough, a global organization that tackles hot-button social issues in creative ways, such as a video game about U.S. immigration detention and an album of ballads to talk about domestic violence. "Popular culture is a powerful way to influence social change," says Dutt, who says she loved the images in Priya's Mask. "It gets people to listen and react in a way that doesn't feel didactic and lecturing."
Devineni says when the team envisioned Priya's Mask six months ago, they had no idea if it would still be relevant by the time the film and comic got done. But one thing he knew for sure. "Priya is a survivor of gender-based violence. She's a survivor, not a victim," he says.
A U.S. version of the animated film, featuring Hollywood actress Rosanna Arquette as the voice of Sahas, will soon be released. And when it's safer, the U.S. Embassy in New Delhi plans to distribute free copies of the book to Indian schoolchildren.
The team is already planning a future installment that will send a positive message about vaccines.
Based in Kolkata, Sandip Roy is the author of the novel Don't Let Him Know. He tweets @sandipr.


npr--2020-12-21--Barr Says No Need For Special Counsel For Hunter Biden Probe, Election Fraud Claims

Barr Says No Need For Special Counsel For Hunter Biden Probe , Election Fraud Claims Attorney General William Barr said Monday he sees no reason to appoint a special counsel to lead the ongoing federal investigation into Hunter Biden or to probe further President Trump 's claims of widespread fraud in the 2020 election .
The comments from Barr , delivered at what was likely his final news conference as attorney general , put a damper on two ideas that the president has reportedly raised in recent days .
But Barr 's ability to influence events all but disappears Wednesday @ @ @ @ @ @ @ general .
President-elect Joe Biden 's son Hunter announced this month that he 's under federal investigation over potential tax issues .
Trump has fumed since news of the probe came to light , arguing that Barr should have made the investigation public before the election — in contravention of Justice Department policy .
Some Republicans are pushing for the Justice Department to name a special counsel to handle the probe , which would add an extra layer of protection from potential political influence in a sensitive case involving the president-elect 's son @ @ @ @ @ @ @ idea , Barr said no .
`` I think it 's being handled responsibly and professionally currently within the department , and to this point I have seen no reason to appoint a special counsel , and I have no plan to do so before I leave , '' he told reporters .
The U.S. attorney 's office in Delaware is leading the investigation .
Barr was also asked whether he saw the need to appoint a special counsel to investigate the president 's baseless allegations of widespread voter fraud .
Barr has @ @ @ @ @ @ @ and found no evidence of systemic fraud that would change the election 's outcome .
On Monday , Barr said he stood by those remarks .
`` If I thought a special counsel at this stage was the right tool and was appropriate , I would name one , but I have n't and I 'm not going to , '' he said .
According to media reports , the president has discussed with advisers possibly appointing a special counsel for alleged election fraud .
Trump reportedly raised the idea of naming Sidney @ @ @ @ @ @ @ 's former national security adviser , Michael Flynn , for the role .
Powell has also taken a very public role pushing the president 's baseless claims of fraud .
Barr also contradicted the president on a third topic : the recent hack of U.S. government agencies .
Cybersecurity experts and sources have told NPR that Russia 's foreign intelligence service , the SVR , appears to be responsible .
The Trump administration has not formally attributed the breach , although Secretary of State Mike Pompeo said on Friday that it was `` @ @ @ @ @ @ @ From the information I have , I agree with Secretary Pompeo 's assessment , '' Barr said .
`` It certainly appears to be the Russians , but I 'm not going to discuss it beyond that . ''
President Trump , however , has disputed such assessments .
On Twitter , he 's accused the media of overplaying the severity of the breach , and he suggested it could have been perpetrated by China , not Russia .

Barr Says No Need For Special Counsel For Hunter Biden Probe, Election Fraud Claims
Enlarge this image toggle caption Michael Reynolds/Pool/AFP via Getty Images Michael Reynolds/Pool/AFP via Getty Images
Updated at 5:12 p.m. ET
Attorney General William Barr said Monday he sees no reason to appoint a special counsel to lead the ongoing federal investigation into Hunter Biden or to probe further President Trump's claims of widespread fraud in the 2020 election.
The comments from Barr, delivered at what was likely his final news conference as attorney general, put a damper on two ideas that the president has reportedly raised in recent days. But Barr's ability to influence events all but disappears Wednesday when he will step down as attorney general.
President-elect Joe Biden's son Hunter announced this month that he's under federal investigation over potential tax issues. Trump has fumed since news of the probe came to light, arguing that Barr should have made the investigation public before the election — in contravention of Justice Department policy.
Some Republicans are pushing for the Justice Department to name a special counsel to handle the probe, which would add an extra layer of protection from potential political influence in a sensitive case involving the president-elect's son. Asked whether he agreed with the idea, Barr said no.
"I think it's being handled responsibly and professionally currently within the department, and to this point I have seen no reason to appoint a special counsel, and I have no plan to do so before I leave," he told reporters.
The U.S. attorney's office in Delaware is leading the investigation.
Barr was also asked whether he saw the need to appoint a special counsel to investigate the president's baseless allegations of widespread voter fraud.
Barr has previously said the department looked into allegations and found no evidence of systemic fraud that would change the election's outcome. On Monday, Barr said he stood by those remarks.
"If I thought a special counsel at this stage was the right tool and was appropriate, I would name one, but I haven't and I'm not going to," he said.
According to media reports, the president has discussed with advisers possibly appointing a special counsel for alleged election fraud. Trump reportedly raised the idea of naming Sidney Powell, an attorney who represented Trump's former national security adviser, Michael Flynn, for the role. Powell has also taken a very public role pushing the president's baseless claims of fraud.
Barr also contradicted the president on a third topic: the recent hack of U.S. government agencies. Cybersecurity experts and sources have told NPR that Russia's foreign intelligence service, the SVR, appears to be responsible.
The Trump administration has not formally attributed the breach, although Secretary of State Mike Pompeo said on Friday that it was "pretty clearly" the Russians.
"From the information I have, I agree with Secretary Pompeo's assessment," Barr said. "It certainly appears to be the Russians, but I'm not going to discuss it beyond that."
President Trump, however, has disputed such assessments. On Twitter, he's accused the media of overplaying the severity of the breach, and he suggested it could have been perpetrated by China, not Russia.