ADAPT’s Bob Kafka is a long time activist with Not Dead Yet, and is the person who actually suggested our name, based on a running gag in Monty Python and the Holy Grail. The interview excerpted below was broadcast on April 4, 2020 and the audio is archived here. Below is a long excerpt of our discussion of COVID-19, which followed a bit on other topics. (The full transcript is here.)
Diane Coleman:
. . . [T]he reality is that … people with disabilities’ lives are being judged as to be of low quality, not worth living, better dead than disabled. Those attitudes permeate the healthcare system and society overall and we see them carried out in various forms of healthcare discrimination. So, yeah, it’s a big issue. It’s a continuing issue.
Bob Kafka:
Well that leads me to what’s going on today. The healthcare debate, whether we’d like to use the word or not, it’s always about rationing. But the COVID-19 pandemic has really brought to the surface, even much more real, of rationing of health care. What are the issues around the COVID-19 rationing of health care with people with disabilities of all ages?
Diane Coleman:
Well, I might have mentioned that from time to time when people are talking about futility policies, because this is where doctors can overrule a patient who wants to live. Sometimes you hear that idea that, “Well, we don’t have enough ICU beds, and they need ICU care.” Now that kind of thing doesn’t hit the radar, the public radar. But what’s happening now with COVID-19 is that, it is in a big way hitting the public radar screen because people with all kinds of chronic conditions, advanced illnesses, they may not think of themselves as disabled, but suddenly these rationing issues, triage in the case of COVID-19, are putting us all at risk. And it is very much a concern that you can see now on TV every day. And basically we’re at risk of being thrown out of the lifeboat for all kinds of reasons.
A blanket diagnosis category that gets everybody with that gets thrown out or, if you have more needs for personal care services, if you’re in the hospital. I will say this, the CARES Act, the third bill, did include a provision that says people who receive home- and community-based services can have their direct support professionals or their personal care attendants provide services to them in the hospital. And so, some of the talk has been around, “well, if you require more personal care than your average patient, then that’s going to be a drain on the already overworked staff.” But the CARES Act does say that you could bring your PCAs into the hospital. So, we’ll need hospitals to comply with that. That it might help a little bit on that particular pressure point. But the threat of triage against us is still very real.
Bob Kafka:
Yeah. The other side of that, and I totally understand why they don’t want family and friends going into hospitals and nursing homes and other congregate settings. I mean, the fear of spreading the virus is overpowering the need for family and friends to monitor what’s going on to their loved one’s health because one of the protections that over the years we’ve seen here in Texas and I’ve heard some other places, is the fact that if you have a close family or friend while you’re in the hospital or a congregate institution, you have less chance for the medical person to just railroad you into something. So, that issue, I think, though that it’s good about the personal care, still, for good public health reasons, excludes family and friends. Any thoughts on that?
Diane Coleman:
Well, it depends I think on the state whether a family or a friend can be a PCA, personal care attendant, in that state. But I did see a policy from a Texas hospital actually that said, If you’re a disabled person, you could get one worker in there for you, that would be your PCA or someone who can care for you. So, they are starting to speak about this as a real issue and hopefully the CARES Act will open the door to hospitals setting better policies that take into account this issue.
Bob Kafka:
Okay. This is a good point to take a quick break. This is Barrier Free Futures, KSFR, 101.1, Santa Fe. We’ll be right back. Welcome back. My guest is the president and CEO of Not Dead Yet, Diane Coleman. We’re talking about COVID-19, and Diane, when we left we talked about the involvement of family, friends, and personal care attendant. I see that recently there was an OCR directive, basically, that not to discriminate against people with disabilities. What is Not Dead Yet’s view on that OCR statement that just came out?
Diane Coleman:
Well, I think it’s very important. It sends a strong message that civil rights are not suspended during this crisis. It covers all the protected groups. For example, the system can’t discriminate based on age. The statement requires an individual assessment of the person’s situation and health status. So, there shouldn’t be any blanket rationing against people based on being in a protected group, whether it’s disability, age or other factors. So, the OCR statement as worded is especially meaningful for people whose risk factors related to COVID-19 are comparable to non-disabled peers and whose needs for care resources is not greater than their non-disabled peers.
And I know that this OCR statement had to be issued, it was last Saturday morning, it was very quickly, make sure that at least that much guidance was out there. But what we really hope is that there’ll be further guidance that would be issued to clarify that non-discrimination applies to all of us when it comes to rationing and triage, that no matter what type of health issues or needs we may have. So, I want to point out really that the Disability Rights, Education & Defense Fund issued a very powerful document on rationing, which Not Dead Yet highlighted in our blog last week. So, you can find it from our blog, or you could find it from the DREDF site itself. But I would really recommend people who want to look more deeply at this rationing and triage, is look at that.
Bob Kafka:
Then, and this is a good point. Could you give where people can get that information and also any other information about Not Dead Yet and if you have the DREDF one also, but if not they can get it on your site. But this is important, if you could give that information.
Diane Coleman:
Sure. Well, our website is notdeadyet.org. Just three words all together, no spaces, notdeadyet.org, and then DREDF is Disability Rights Education and Defense Fund, the acronym D-R-E-D-F.org and actually, if you just go there at this point, the first thing there is the COVID, the link to their COVID resources and so, that’s the easiest way to find that.
Bob Kafka:
And hasn’t there been, I know – I think, four states where vent users have had their own personal ventilators confiscated when they went into the hospital? Do you have info on those lawsuits?
Diane Coleman:
I don’t. What I do know is that there were four states where there were OCR complaints filed. And I think in anticipation, and that is in fact what led to the OCR statement being issued, is that they were getting complaints that maybe local policies were becoming evident that would show what type of triage would take place. And I know that the New York policy, which is where I live, says that, people who are less likely to survive will be less likely to get ventilator support in the hospital. And there’s also concern that people who already use some type of advanced breathing support, if they take it to the hospital, in the New York policy, it indicates that, If you present at the hospital, whatever you bring will become subject to the hospital’s protocol. And so, it’s important for each person to look at what are the policies where they are.
Because, and by the way, DREDF has tried to gather policies to the extent that they’re public, from states around the country. But a lot of the policies say “these are the guidelines that you should use,” Dear Hospital. And the hospitals might individually come up with their own policy using the guidelines or not or whatever. Going further, not going as far. It’s very hard to say. Nothing is a mandate. So, I would turn everybody’s attention back to the DREDF legal analysis which is a clear-cut statement of no discrimination, through rationing or triage.
Bob Kafka:
It brings to mind, and in this environment it’s difficult to go back, of why the disability community is always been wary of what we’ve always called the medical model, where the old joke, what’s the difference between God and a doctor, is God doesn’t think he or she is a doctor. [Diane chuckles.] So, obviously in this where we really need and both of us owe our lives to doctors, but people generally forget that the power relationship between people when they’re not well and the doctor is so unequal that, I know Not Dead Yet has wanted protections in so many different venues. Diane, we have a few minutes left. What do you see as for the future of Not Dead Yet, and all the issues that you are working on, obviously the COVID is now dominating the public’s attention, but assisted suicide, other rationing, what does Not Dead Yet see as the future? What’s your crystal ball say?
Diane Coleman:
Well, yeah, obviously as you say, right now we’re very concerned about the rationing and triage issue, and that’s truly a focus. I’m not sure how many legislatures this year are going to be pursuing assisted suicide. My sense is that people are not – they’re more worried about triage. People who have chronic conditions, that even cancer, are more worried about being locked out of lifesaving care than they’re going urgently seeking to die early. But I can say that we always as Not Dead Yet trying to be responsive to what is happening. And so, that’s what we’ll try to keep doing. I do think that what is happening with COVID-19 shows the relevance of what we’re doing to a much broader group of people.
People who not typically thought of themselves as disabled people, people who’ve not typically thought that anything we do is relevant to them. That pressure is on them now from the system for anybody who’s presenting themselves into the system and there’s I think a lot of justified concern out there and we hope that’ll lead more people to become involved. Time will tell, but we have always done it. We’ll still be a disability-led group. We’ll be encouraging others to see the relevance and work with us going forward and frankly we’ll keep on keeping on.
Bob Kafka:
Yeah, I know these discussions about end-of-life and even at a young age, with a significant disability, all those issues are so so easy to defer until it becomes a crisis. And I really respect all the work that Not Dead Yet has done to keep those issues in the public eye because they are such crucial issues and like you said, people just really don’t talk about it and I think Not Dead Yet. So, one more time before – we just have about a minute or so left. One more time, could you just give how people can get in touch with both Not Dead Yet and how they might also get in touch with DREDF, the Disability Rights Education Defense Fund?
Diane Coleman:
Well, I want to say first we have our contact info, as well as the contact form, on the Not Dead Yet website, which is notdeadyet.org, and our close colleagues at the Disability Rights, Education & Defense Fund, are D-R-E-D-F.org and their homepage currently leads to all of their COVID-19 information, which is excellent.