NDY’s 24th Anniversary: Never Has the Fight For Our Lives Been More Urgent

better dead than disabled, bioethics, Bob Kafka, COVID-19, healthcare rationing, john callahan, lifeboat ethics, medical discrimination, Our News & Commentary Blog, ,

On this day, April 27, 24 years ago, I was at a national disability rights conference in Dallas. ADAPT organizer Bob Kafka called out to me and said, “I’ve got a name for your group,” a group that increasingly seemed to be needed to combat the growing public sentiment that disabled people are better off dead (and society is better off without us). The name Bob suggested was “Not Dead Yet”, based on a running gag in the movie Monty Python and the Holy Grail. On that day, over 40 disability leaders (Justin Dart, Judy Heumann, Marca Bristo and more) signed on to testimony I would give at a Congressional subcommittee hearing two days later. Not Dead Yet had begun.

Today, in the midst of the COVID-19 pandemic, the plague scene from Monty Python and the Holy Grail hits painfully close to home, as an older man is thrown on a dead body cart, protesting he’s “not dead” – yet. Today, we’re seeing countless medical triage policies that would literally throw older and disabled people away. Never has the need to fight for our lives been more urgent.

Our name has a bit of humor as well as a bite to it. Sometimes disability humor can be dark. So, on NDY’s 24th Anniversary, we share the plague scene from Monty Python and the Holy Grail and quote disability humorist John Callahan (1951 – 2010) who said, “Comedy is the main weapon we have against ‘The Horror.’ With it we can strike a blow against death itself.”

[IMAGE DESCRIPTION: Scene from Monty Python and the Holy Grail, a medieval village during the Black Death, men in rags pushing a wooden cart through mud, as one man bangs a pot and calls “Bring out your dead!” Then a young man brings an older man, we assume his father, thrown over his shoulder, but the old man says “I’m not dead” – yet. After a back and forth, the pot banger clubs the old man in the head, and the young man throws him on the cart, and thanks the pot banger for his help.]

Anita Cameron: Racial Disparities in the Age of COVID-19

access to health care, Anita Cameron, discrimination, health disparities, healthcare rationing, medical bigotry, medical discrimination, Our News & Commentary Blog, racism, , ,
Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

Racial disparities in healthcare have always existed but it’s only been recently that it has been openly discussed as a serious issue in this country. Blacks and communities of color have always known about it because we experience it ourselves, first-hand. Studies show that we receive inferior healthcare compared to Whites. Little by little, the mainstream public is starting to learn. Racial disparities in healthcare are one manifestation of systemic, institutional racism.

Now, enter COVID-19, also known as coronavirus. What started as an outbreak has turned into a worldwide pandemic, with the United States now the epicenter.

As expected, the virus is severely impacting seniors, people with disabilities, poor people and communities of color. From Indigenous nations in New Mexico and Arizona, to Latinx and immigrant communities across the nation, COVID-19 is spreading like wildfire.

The Black community, especially, is being ravaged by COVID-19. We are 12 percent of the U.S. population, yet represent 59% of coronavirus deaths to date.

The numbers are even more stark when one looks at cities or states. Blacks make up 15 percent of the population of my home state of Illinois, yet are 40% of deaths. Blacks are 30 percent of Chicago’s population, but 70% of COVID-19 deaths.

Those scary figures are repeated elsewhere. 70% of COVID-19 deaths in Louisiana are among Blacks, who make up 30 percent of the state’s population. 100 percent of COVID-19 deaths in St. Loius, MO are of Black people.

Ibrahim X. Kendi’s article, Why We Don’t Know Who the Coronavirus Victims Are, calls for racial data.

Kendi’s article, What the Racial Data Show, shows that communities of color are being disproportionately affected by COVID-19.

Kendi’s article, Stop Blaming Black People for Dying of the Coronavirus shows how the reasons Black folks are dying of COVID-19 are due to systemic racism.

Why is COVID-19 hitting the Black community so hard?

It is a result, again, of systemic racism. We are more likely to be poor — Black households have a fraction of the income and wealth of White households, even when the education level is the same. We are far less likely to be in positions of management, meaning that we and immigrants are the ones doing the jobs nobody wants, like picking up trash, cleaning public toilets or cleaning up hospital emergency rooms.

We Black folks are more likely to be essential workers – nurses, attendants, hospital technicians, public transit operators, sanitation workers and first responders. That brings us in contact with others who have been exposed to, or who actually have COVID-19. Most do not have access to personal protective equipment like masks, gloves and gowns, necessary to slow the spread of the disease.

Blacks are also more likely to live in poverty and not have health insurance, so when we get sick, we can’t go to the doctor. Since we receive inferior healthcare compared to Whites, especially in the treatment of diabetes, heart conditions and cancer – three conditions that make COVID-19 more likely to be fatal, we are dying at a much higher rate.

Black people are less likely to have access to information and resources. At first, we didn’t believe that COVID-19 was affecting our community. Then we begin to see that our folks were getting sick, but also saw that we weren’t as likely to be tested, even when we were clearly ill. We realized that we were less likely to have access to gloves, masks, food, sanitizer, cars, etc., so we couldn’t go shopping. We often don’t have computers, smartphones or TVs, meaning we were cut off from information on how to protect ourselves and where to go to get food or what agencies were out there to help. We don’t have jobs we could telework from, so we lost them. We don’t have access to the technology for telemedicine, so we’re not getting healthcare unless we go to the emergency room.

Now, due to hospitals being overwhelmed with COVID-19 admissions, medical rationing is being considered in the treatment of COVID-19. This is especially frightening for disabled and seniors – and Blacks and communities of color. Several states have enacted policies where treatment for COVID-19 patients would be reserved for those with the greatest chance of survival, meaning younger, healthier (read nondisabled) patients. Disabled people who use ventilators at home are terrified that if they are hospitalized, their ventilator will be reallocated, taken and given to someone the hospital feels has a better chance of survival.

Though the Department of Health and Human Services’ Office of Civil Rights has issued guidance against discrimination and bias based on stereotypes of race, age and disability, among others, some of that guidance is not clear, and won’t stop medical personnel steeped in their own biases from doing as they wish.

If anything is a wake-up call for people to see what the results of racial bias, discrimination and disparities in healthcare look like, this COVID-19 pandemic is it. Now, add disability.

Black disabled are scared to death, and rightly so. We see panels and talks on what to do, and how to know your rights in medicine during this pandemic. We see White folks (mostly) and some folks of color on panels when Black activists brought it up, but, as yet, virtually nothing is including, or designed by and for Black folks.

Of the major organizations working on the issue of medical rationing and discrimination, few, if any, have Black staff or Black management, so we’re not thought of. As yet, none have reached out to Black activists and organizations in a meaningful way.

COVID-19 is rampaging through nursing homes, psychiatric hospitals, group homes, institutions, jails, prisons, detention centers, all kinds of congregate settings. We know who are likely to be in such places — Black and Brown folks. We know who are likely to work there — Black and Brown people. Who is collecting data? Who is developing plans to get these folks who’ve tested positive for COVID-19 some kind of medical assistance? What groups are making plans to help these people get safe now?

There are some Black folks doing mutual aid to make sure folks in our community eat, have groceries, get information and get emotional support, but we still don’t have the resources that primarily White disabled folks and organizations have access to.

Still, we can’t wait around for mainstream organizations to include us. We must work ourselves to get the word out even more about how COVID-19 is ravaging the Black community. We must insist that the government keep racial data on who gets it, who dies, at what rate and percentage of the city, county, state and country. We must make sure that disabled aren’t falling victim to medical rationing or mistreatment based on race, age and type of disability. We must insist that our first responders and front line workers are safe.

Black disability organizations, Black community organizations, Black LGBTQIA2S+ organizations, Black medical organizations, Black media, senior groups, justice reform groups, immigrant rights groups, organizers, activists, youth, artists, griots, storytellers — let’s all get together and help each other during this age of COVID-19. Form our own medical rationing panels and do the work. Do our own research on racial disparities in healthcare during COVID-19 and not only get the word out, but work against it. Work to get funding and resources, particularly for disabled folks now. Tell our own stories. In doing this for us, we actually help not only ourselves, but our country.

Will Our “SOFA Scores” Become Self-Fulfilling Prophecies?

Andrew Pulrang, ari ne'eman, bioethics, COVID-19, Disability Rights New York, Hastings Center, healthcare rationing, life-ending decisions, lifeboat ethics, medical discrimination, Our News & Commentary Blog, Sequential Organ Failure Assessment, treatment withdrawal, ventilators, , ,
Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
Diane Coleman

I first wrote on March 17th about my fear that the non-invasive ventilator I use everyday might be taken from me if I sought hospital care during this pandemic. The New York “Ventilator Allocation Guidelines”, developed in 2015 to address shortages in a pandemic, specifically state at page 42:

In its consideration to protect vulnerable populations, i.e., ventilator-dependent chronic care patients, the Task Force determined that these individuals are subject to the clinical ventilator allocation protocol only if they arrive at an acute care facility for treatment.

Although a new plan specific to COVID-19 was reportedly being discussed by NY state officials and healthcare providers, I didn’t hear anything more specific, nor anything reassuring related to the concerns of New Yorkers living in the community with ventilators.

About a week after my blog, I was contacted by Disability Rights New York, the NY protection and advocacy organization, asking if I would be one of the complainants in a letter directed to Governor Cuomo about discrimination in the Guidelines. I’m deeply grateful that DRNY undertook this effort and, of course, I agreed to be a complainant. The DRNY letter to Governor Cuomo summarizes the concerns about the 2015 Guidelines as follows:

The specific discriminatory impact of the Guideline is two-fold: eligibility assessments for treatment may inadvertently screen out a disproportionate number of individuals with disabilities, and chronic ventilator users may not seek necessary acute care for fear that they will be assessed ineligible for continued ventilator use and have their personal ventilators re- allocated to “healthier” individuals. [To read the full letter, go here.]

Having received no response to this letter, on April 7, DRNY filed a formal federal complaint described in a press release:

Albany, NY April 7, 2020:  Disability Rights New York (DRNY) has filed a complaint with the United States Department of Health and Human Services (HHS) against the New York State Department of Health (DOH), because there are no policies from DOH to prevent the discriminatory rationing of health care to people with disabilities.

DRNY is requesting that HHS require DOH to immediately take the necessary steps to ensure that New Yorkers with disabilities have equal access to life saving health care.

The 2015 Ventilator Allocation Guidelines can be used to prevent people with disabilities from obtaining ventilators simply because they have underlying conditions that may intensify symptoms and slow recovery. Hospitals and other medical facilities need clear guidance that such actions would be discriminatory, illegal and actionable.

The DRNY OCR complaint directly challenges the alleged objectivity of measures being promoted as a nondiscriminatory approach to allocating scarce resources. Here are some key excerpts from the complaint:

  • [The NY] Task Force states that the Sequential Organ Failure Assessment (“SOFA”) system should be used. A SOFA score, which is used to track a person’s status during an intensive care stay adds points based on clinical measures of function in six key organs and systems: lungs, liver, brain, kidneys, blood clotting, and blood pressure. . . .
  • [I]ndividuals with preexisting conditions are by default going to receive higher (worse) SOFA scores than individuals without disabilities, meaning these individuals with disabilities will be less likely to receive life-saving care. . . .
  • Individuals with disabilities may live day-to-day without any complications, but with a condition that presents abnormalities in one or more of the six key organs and systems measured using SOFA. . . .
  • These individuals would be disadvantaged in a triage situation prior to considering any symptoms that result directly from COVID-19. . . .
  • In its effort to treat everyone equally, the Task Force seemingly accepts the inevitable deaths of chronic ventilator users…
  • NY DOH is discriminatorily preventing chronic ventilator users from seeking acute healthcare services in violation of federal law. . . .

To read the full complaint, which is not limited to discrimination based on chronic use of a ventilator, go here.

Despite the serious discrimination in the NY 2015 Guidelines, it’s important to recognize that many states have guidelines or “crisis standards of care” that include even more discriminatory provisions that have been and are being challenged. As we pointed out in NDY’s April 6 blog, many states have adopted so-called “model” guidelines from the University of Pittsburgh which call for prioritizing individuals based on a combination of two primary factors.

First, as in the NY Guidelines, the person’s Sequential Organ Failure Assessment (SOFA) score is used to determine prognoses for hospital survival.

The second “model” factor used in many states (though not NY) is to characterize a person’s longer-term prognosis: “the presence of conditions in such an advanced state that life expectancy is very limited” (less than 1 year or less than 5 years). Needless to say, the disability community has long-standing critiques of medical predictions of our mortality. (My husband and I have, between the two of us, survived more than 100 years beyond the expiration dates doctors gave our parents when we were children.)

In addition to challenges like DRNY’s OCR complaint, individual disability rights advocates have also raised important questions about the “SOFA score” and other criteria that don’t specifically mention “disability” but clearly discriminate against us in life threatening ways. Two examples that are well worth reading are Ari Ne’eman’s Hastings Center article, When It Comes To Rationing, Disability Rights Law Prohibits More Than Prejudice, and Andrew Pulrang’s Forbes article, The Disability Community Fights Deadly Discrimination Amid The COVID-19 Pandemic.

Obviously, the so-called “objective” SOFA score and life-years approaches are dangerous to many people with disabilities of all ages. COVID-19 has revealed society’s blatant willingness to throw away the lives of older, ill and disabled people.

The “crisis standards of care” that are confronting us are not only relevant to pandemics but to all kinds of disasters and deserve our continued advocacy going forward. By using them to decide who gets life-sustaining treatment, healthcare providers risk turning a tool for predicting mortality into nothing more than a self-fulfilling prophecy.

ADAPT’s Bob Kafka Interviews Diane Coleman About NDY & COVID-19 On Barrier Free Futures

ADAPT, bioethics, Bob Kafka, COVID-19, dredf, futility, healthcare rationing, media coverage, Our News & Commentary Blog, , , ,

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.

As the Threat of Triage Grows, Disability Rights Advocacy Is Needed More Than Ever

bioethics, COVID-19, death panels, healthcare rationing, HHS, medical discrimination, Our News & Commentary Blog, ,

On Friday, April 3rd, six leading disability rights attorneys and their respective organizations issued a statement entitled Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing. The statement, which helps to interpret the federal bulletin issued a week earlier, was joined by over 90 organizations, including NDY.

One of the most critical parts of the statement focuses on the following language in the federal bulletin:

“[P]ersons 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. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

The disability advocates’ statement explained this, in part, as follows:

  • All persons should be eligible for, and qualified to receive, lifesaving care regardless of the presence of an underlying disability or co-morbid conditions, unless it is clear that the person will not survive in the immediate term or the treatment is contra-indicated.
  • Treatment allocation decisions may not be made based on misguided assumptions that people with disabilities experience a lower quality of life . . . .
  • Every patient must be treated as an individual, not a diagnosis. This means that the mere fact that a patient may have a diagnosis of, for example, intellectual disability, autism, cystic fibrosis, diabetes, spina bifida, spinal muscular atrophy, or schizophrenia cannot be a basis (in part or whole) for denying care or making that person a lower priority to receive treatment.
  • Generalized assumptions must be avoided and doctors must instead focus on the most current and best available objective medical evidence available to determine an individual patient’s ability to respond to treatment. . . .
  • . . . [V]alue judgments about the fact that a patient may require extensive support in activities of daily living, uses augmentative or alternative communication, uses a wheelchair, or experiences a psychiatric disability are irrelevant to decisions about whether such individuals should receive life-sustaining treatment.
  • Protocols which equate survival with “health” or the absence of chronically debilitating symptoms, risk importing quality life criteria on the triage process.

Clearly, a carefully conducted individual assessment will protect many people with disabilities from being assigned a lower priority to receive treatment. Of course, as disability advocates know from decades of experience, individualized assessment, planning and services are easy words to say but much harder to get in practice. Our community must continue to press for this. It will save lives.

Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
Diane Coleman

An equal or greater concern is that people whose “individual assessment” suggests they may have a lower likelihood of survival from COVID-19, or (under some triage approaches) a shorter predicted life expectancy for other reasons, would be given lower priority for treatment that could benefit them in terms of potential for survival.

One such “model” policy that is receiving a lot of attention is from the University of Pittsburg. It calls for prioritizing individuals based on a combination of two primary factors. First, the “Sequential Organ Failure Assessment (SOFA) score (or an alternate, validated, objective measure of probability of survival to hospital discharge) is used to determine patients’ prognoses for hospital survival.” The second factor is “the presence of conditions in such an advanced state that life expectancy is very limited” {less than 1 year or less than 5 years), which is used to characterize patients’ longer-term prognosis. This does not inspire confidence in the policy’s objectivity. It provides for the kind of blatant discrimination that worries many of us (see, e.g., Alice Wong’s moving article in Vox.com).

As the potential for implementing triage policies increases, advocacy will be needed more than ever. For more information, one excellent resource is the DREDF COVID-19 page.