Lizzie O'Leary:

It's The Takeaway. I'm Lizzie O'Leary. As the number of people being hospitalized for COVID-19 continues to rise, there are concerns that some vulnerable people may not be able to get the care they need. A new investigation from the Center for Public Integrity shows that people with disabilities may not be able to access ventilators amid the pandemic.

Lizzie O'Leary:

The investigation analyzed policies and guidelines from 30 states to see how people with disabilities would be treated if ventilators had to be rationed. And in all but five states, they found provisions that may give people with disabilities a lower priority than other patients. The remaining states either had no policies or didn't release them.

Lizzie O'Leary:

In a few minutes we'll hear from a disability advocate who've been fighting these policies in her own state. But first I spoke with Liz Essley Whyte about her investigation. She's an investigative reporter at the Center for Public Integrity, and I first asked her what these policies actually do in the 30 states she's looked at.

Liz Essley Whyte:

In about 14 states, the policies singled out specific diagnoses and said, "If you have one of these, you're less likely to receive a ventilator if we run out." So that's things like cystic fibrosis or dementia, or even baseline functional status, which is a very broad consideration. And then 13 states say, "If you need assistance with activities of daily living or more resources, we would also deprioritize you."

Liz Essley Whyte:

And then there's six states that, if you have a ventilator and you use it in your daily life, which many people with disabilities do. And if you come to the hospital as an acute care patient, then the state ethically can take away your ventilator if they need it. And then there are also 16 states where they took into account not just immediate survival of whether the patient can get better from coronavirus or whatever disease they're getting treated for it, but longterm, how long are they expected to live?

Lizzie O'Leary:

Some states had particularly discriminatory policies, Washington for example. Can you walk through that example and show us what it means on a practical basis?

Liz Essley Whyte:

So it took into account baseline functional status, which includes something called cognition, very broad and could mean all kinds of things. Basically, if you have an intellectual disability, there is a fear that you are therefore put down in the list of the people that Washington would be willing to save if they run out of ventilators. And the policy explicitly said to look at loss of reserves and energy, physical ability, cognition and general health.

Liz Essley Whyte:

And you're just looking at things that may be really irrelevant to whether someone can recover from coronavirus. If someone is paralyzed, does that count as physical ability that they don't have that they would therefore be at the back of the line for a ventilator? I mean, it raises a lot of questions.

Lizzie O'Leary:

How are states legally able to have these kinds of provisions? I mean, the ADA has been in place for 30 years. I'm a little bit surprised by this frankly.

Liz Essley Whyte:

There's always a judgment that doctors are making when they're making medical futility decisions, about whether a treatment will actually help someone get better or whether it is not going to do anything for them. But in a pandemic or in a crisis, standards of care situation, you're weighing someone's likelihood of survival against someone else's likelihood of survival.

Liz Essley Whyte:

But I would be surprised if we don't see some litigation or decisions by the courts on these types of policies, and how they relate to the Americans with Disabilities Act.

Lizzie O'Leary:

One thing I think it would be helpful to have you explained is why disability advocates find it so problematic to look at lifespans? And what factors people should be looking at instead.

Liz Essley Whyte:

There's general agreement that if you look at just long term life expectancy, that can be really discriminatory. Not only to people with disabilities, but even African American men, who on average are not expected to live as long as other people. Some of the policies just blanket say, look at life expectancy, but others are more careful in how they do that. So they might look at, is this person going to live five more years? Is this person going to live one more year? Is this person going to live six more months?

Liz Essley Whyte:

But some of those are really worrisome to advocates of People with Disabilities, because so many people with disabilities have been told, "We only expect you to live six more months," or, "We only expect you to live two more years." And here they are, 20 years later. And then there's also misperceptions about quality of life that come into those predictions.

Liz Essley Whyte:

The National Council on Disability had a study out in the last year that showed that many healthcare providers may deem treatment futile or non-beneficial to a person with disabilities. And if you look back later on, these people are living a long and healthy and happy life.

Lizzie O'Leary:

What is the federal government's role in all of this? And has the Department of Health and Human Services responded to these various statewide rules at all?

Liz Essley Whyte:

Advocates with Disabilities have filed complaints in four states, and the Health and Human Services Office of Civil Rights came out at the end of March and said, "You cannot as a state have a policy on ventilator rationing that discriminates against people with disability."

Liz Essley Whyte:

So they started by looking at Alabama's policy and Alabama had said, "If you are someone with severe mental retardation, you would be lower priority for a ventilator." Alabama, a week later disavowed that policy, got rid of it, scrubbed it from its websites, which had been up very recently.

Liz Essley Whyte:

So HHS closed the case. But it sounds like HHS may have a bunch of other investigations on the [inaudible 00:05:50], just based on the complaints that they have left from disability advocates. There have been calls from ... There are groups who have studied this over the years back after H1N1 happened, that the federal government should take a role in promulgating national standards. There is a little bit of that that has gone in. HHS has a repository of documents that ethicists and medical experts can look at when they're designing their own standards. But there's no federal standard, there's not even 50 state standards.

Lizzie O'Leary:

We spoke on this show to a professor of critical care medicine at the University of Pittsburgh, and he was telling us about new ethical guidelines that they've developed for hospitals to try to combat this discrimination. And I want to play you that clip.

Speaker 3:

They recommended simply excluding from access to ICU care, patients with certain characteristics. For example, those with advanced age, those with severe heart and lung problems. And we viewed those to be frankly just discriminatory features of the guidelines.

Speaker 3:

And so we set out to develop a very different approach. Rather than excluding patients from an ICU care, all patients who are normally eligible for ICU care remain eligible, and priority is given according to the likelihood that an individual will benefit, as defined by their likelihood of surviving to hospital discharge and beyond according to objective measures.

Lizzie O'Leary:

Absent federal guidance, do you think hospitals can fight these bias issues on their own?

Liz Essley Whyte:

There are some states like Massachusetts that just came out with this policy that have explicitly said up front, "We do not want to discriminate against people with disabilities. We're not doing that in this policy. We refuse to do that." But then advocates are coming back and saying, "Okay, that's great to say that in a blanket statement, but can you please put that into actual step by step instructions for doctors and the hospitals in how not to do that."

Liz Essley Whyte:

Because it's one thing for you to say we're not going to discriminate, but then you know your policy's vague or it's just not really helpful for hospitals to figure out how else do you decide to ration ventilators then. I think there will be movement on that as more and more states figure out how to actually implement that.

Lizzie O'Leary:

Liz Essley Whyte is an investigative reporter at the Center for Public Integrity. Thank you so much.

Liz Essley Whyte:

Thanks, Lizzie.

Lizzie O'Leary:

We just heard new reporting on state policies that could make it harder for people with disabilities to get ventilators during this COVID-19 crisis. Now, here's someone organizing to fight those policies.

Ivanova Smith:

We signed a complaint to the Office of Civil Rights that this has been a violation of the ADA, because you cannot discriminate based on disabilities and age. And so you are in violation of the ADA if you use these guidelines.

Lizzie O'Leary:

Ivanova Smith is disability advocate in Tacoma, Washington. She has an intellectual disability and is part of a group that filed a complaint with the state over their guidelines around rationing care during this pandemic. But Ivanova told us that discrimination against individuals with intellectual and developmental disabilities, or IDDs, isn't unique to this crisis. She says she often faces discrimination when she goes to the doctor without her husband.

Ivanova Smith:

A lot of people have had similar experiences, and I know a lot of people that have had worse experience than myself. Like they got full treatment denied or they get denied an organ transplant, or people on vague critical care and the hospital doesn't want to take them to the ICU and they just say, "Well, they're not really doing much in their life."

Ivanova Smith:

Especially people that are non verbal and people who have a lot of medical fragility, they see it as, "Oh, if they get sick then there's nothing we can do," they feel like. And you can still try to save their lives, and their lives is still worth value. Nobody's life is worthless. And when we talk about [inaudible 00:09:51] and doing that based on disability or age or anything like that, that goes into really heavy territory and I think we should stay out of that territory.

Lizzie O'Leary:

Under the current policies, Ivanova told us she's worried about losing members of her own community to COVID-19.

Ivanova Smith:

I worry that a lot of my community down [inaudible 00:10:13] will die, because several of my community members have died from getting lack of medical care, even in their other medical issues. So we've had some deaths already, and so my community and I we're really mourning the passing of these people.

Ivanova Smith:

And one thing we've been doing is really connecting online through Zoom. We started a self-advocacy speaking freely Zoom group on our Facebook, where we just talk and hang out. And there's times we've actually had to host memorials. We've actually had to host a memorial for local people, first member who passed away. She was a really good friend and she had a lot of heart and she didn't deserve to die. She was still, I think, I believe she was in her forties. And I just, I don't understand that ... I was in shock when I found out, and it just makes this action that more important that we try to stop this as much as possible because it's already happening. It's already happening to our members, and it's already happening to the self-advocates community nationally.

Lizzie O'Leary:

She also told us that the way states and hospitals are approaching patients during COVID-19, reminds many of a traumatic history.

Ivanova Smith:

There's a long history of eugenics when it comes to medical care for people with disability. So, I think people should keep that in mind in the back of their heads, that we can not let eugenics creep back into our society. We should call out eugenics when we see it. And I see this as a clear, eugenics tries to sneak his way back in and we got stomp it out immediately.

Lizzie O'Leary:

And beyond just fighting against discriminatory policies, Ivanova says there are ways to push for change.

Ivanova Smith:

But we need to prevent this from happening. We need to get trainings for the triage teams on equity for people with disabilities and the value of people with disabilities. We need to get the people who are overseeing these decisions, the leaders, the board members, that the people with IDD can be representative in these meetings.

Ivanova Smith:

I think the people that are most impacted by these type of [inaudible 00:12:38] decisions should be at the table to decide what happens. We're human beings and we contribute to our communities. We contribute to our societies and we deserve equal understanding.

Lizzie O'Leary:

Ivanova Smith is a disability advocate in Tacoma, Washington.

 

Copyright © 2020 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.

New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.