With coronavirus cases continuing to climb and hospitals facing the prospect of having to decide how to allocate limited staff and resources, the Department of Health and Human Services is reminding states and health care providers that civil rights laws still apply in a pandemic.
States are preparing for a situation when there's not enough care to go around by issuing "crisis of care" standards.
But disability groups are worried that those standards will allow rationing decisions that exclude the elderly or people with disabilities.
On Saturday, the HHS Office for Civil Rights put out guidance saying states, hospitals and doctors cannot put people with disabilities or older people at the back of the line for care.
"We're concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability," said Roger Severino, the director of the Office for Civil Rights. "We're concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care."
Severino said his office has opened or is about to open investigations of complaints in multiple states. He did not say which states could be the focus of investigation, but in the last several days, disability groups in four states — Alabama, Kansas, Tennessee and Washington — have filed complaints.
In Kansas and Tennessee, disability groups and people with disabilities say state guidelines would allow doctors to deny care to some people with traumatic brain injuries or people who use home ventilators to help them breathe.
The ventilator issue is coming up in New York, which may soon be the first place where there are not enough ventilators to meet the demand of patients. Gov. Andrew Cuomo said the state will need double its current amount in about three weeks.
Disability Rights New York, a federally funded disability civil rights legal office, raised alarms in a letter to Cuomo this week. The group said people who use personal ventilators for help breathing fear that under the state's current guidelines, their ventilators could be confiscated if they seek medical care and "re-allocated to other patients who are deemed a higher priority."
Severino said Saturday that his office was concerned about complaints of possible ventilator reallocation, an issue that had been raised in New York and Kansas.
Disability advocates and lawyers expressed concerns over a line in the guidance from the Office for Civil Rights that said the Public Readiness and Emergency Preparedness Act, or PREP Act, may provide immunity from civil rights laws in some cases.
The PREP Act provides immunity to tort liability claims for manufacturers or drug companies that are asked to scale up quick responses to a disaster such as a nuclear attack or a pandemic.
The law could protect, for example, a company that hurried production of new ventilators, recognizing there might not be the usual long-term testing of the device.
Some disability advocates have worried whether that exception could be used to trump civil rights laws that protect people with disabilities from treatment decisions. Severino said his office would investigate civil rights violations and it would be up to another office at HHS, the general counsel's office, to make waivers under the PREP Act.
Overall, the guidelines from HHS serve as a warning to states. The department's Office for Civil Rights can investigate health care providers who are accused of violating civil rights law and tell them to correct something. If the issue is not corrected, the office can ask the Department of Justice to prosecute.
MICHEL MARTIN, HOST:
Around the country, doctors are facing a difficult question. If resources are limited, will they be asked to decide whose life will be saved? A federal civil rights office issued some guidance today, and NPR's Joseph Shapiro is here to tell us about it.
JOSEPH SHAPIRO, BYLINE: Hi, Michel.
MARTIN: So what did you learn? And why did the Department of Health and Human Services think there was a need to issue the guidelines today?
SHAPIRO: Because states right now - they're preparing for a situation where there's not enough care to go around, like a shortage of ventilators. So they're writing crisis of care standards. But disability groups are worried that those standards will allow rationing decisions that are going to exclude people with disabilities and the elderly. And we've seen this happen, right, in Italy, where the - age is already a factor for who gets scarce care like ventilators.
So today, the Office for Civil Rights at the Department of Health and Human Services issued guidance. And those rules emphasize - they say civil rights laws - they still apply in a pandemic. And we have some tape. This is Roger Severino, who heads the HHS Office for Civil Rights.
(SOUNDBITE OF ARCHIVED RECORDING)
ROGER SEVERINO: Particularly, we're concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another based on the presence or absence of disability. We're concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.
MARTIN: Joe, were there any specific situations in specific states, for example, that he talked about?
SHAPIRO: Well, he did say his office is open, or it's about to open, investigations of complaints in multiple states. He didn't say which states. But in the last several days, disability groups in four states - Tennessee, Kansas, Washington and Alabama - have filed complaints. In Kansas and Tennessee, groups say state guidelines would allow doctors to deny care to some people with traumatic brain injuries or ones who use home ventilators to help them breathe.
And a group of New Yorkers have - who already use ventilators - they wrote a letter expressing their fears to Governor Andrew Cuomo. These are people that they work and they're active, but they need home or portable ventilators to help them breathe. And they're worried about existing state guidelines that apply if they go to the hospital and they think would allow a hospital to take their personal ventilators and give them to someone else.
MARTIN: So are these guidelines from the federal government the final word on this?
SHAPIRO: They're clear guidelines. They're a warning to states. But there's something else that was buried in the guidelines today that caused some confusion. And then there's a line about something called the Public Readiness and Emergency Preparedness Act, which may protect some health care providers from liability for treatment decisions, that seemed to contradict the message of Roger Severino, the head of the Office for Civil Rights, that civil rights laws still apply.
And he was asked, and he said, it's a matter to be decided by another office, the general counsel at the Department of Health and Human Services. But the overall message today was to tell states, when you come up with rules for allocating scarce resources, do not put people with disabilities, do not put the elderly at the back of the line.
MARTIN: That's NPR's Joe Shapiro. Joe, thank you so much.
SHAPIRO: Thank you. Transcript provided by NPR, Copyright NPR.