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

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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

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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.

DREDF Brief: The Illegality of Medical Rationing on the Basis of Disability

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Huge admiration and gratitude to our colleagues at DREDF for issuing a document entitled Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability. It’s directed to “lawmakers and providers of health care, education, transportation, housing, and other critical services.”

The 2nd opening paragraph explains:

In the face of a public health crisis, where projections show that the need for intensive medical care for individuals made ill by COVID-19 may far exceed the resources of the U.S. healthcare system, the inclination of healthcare providers may be to take “rationing” measures or rather, make decisions about who should or should not receive care and, if they do, what level of care. While COVID-19 poses a serious challenge to the capacity and resources of our healthcare system, DREDF reminds healthcare providers that longstanding federal and state nondiscrimination laws, such as the Americans with Disabilities Act (“ADA”), Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act (“ACA”), the California Unruh Civil Rights Act, and California Government Code Section 11135, prohibit such rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it.

The first major section of the brief provides important legal analysis and precedent. The second major section includes four important subparts:

  • A.  Providers Cannot Deny or Limit Care to Disabled People Because of Their Disability
  • B.  Providers Cannot Deny or Limit Care Based on the Fact That A Disabled Person May Have A Lower Likelihood of Survival or Require More Intensive Care
  • C.  Providers Must Not Rely on Quality of Life Judgments When Deciding Whether to Deny or Limit COVID-19 Treatment
  • D.  Providers Cannot Deny or Limit Treatment to A Person with a Disability Because They May Require Reasonable Accommodations

For those of us who may have a lower likelihood of survival or require greater resources to survive, Section [II] B. is most directly relevant:

In enacting the ADA and subsequent civil rights legislation specific to the health care setting, Congress affirmed that principles of equality are more important than the efficiency of systems. Despite the COVID-19 crisis, this principle remains appropriate and the law of the land.

While a healthcare provider does not have a duty to provide treatment when there is objectively no chance of it succeeding (i.e., it is “absolutely futile”[42]), they cannot exclude from treatment people whose underlying disabilities mean that they have a lower probability of survival or those who, because of their disabilities, may require a higher level of care.

Prioritizing people without pre-existing conditions, who may have a higher probability of survival, would be inappropriate and constitute illegal disability discrimination. While providers are not obligated to deliver objectively futile care, they cannot discriminate against disabled people who could benefit from treatment.

Furthermore, while healthcare providers may prioritize people with a greater urgency of need, they cannot give lower relative priority to individuals whose anticipated intensity of care or resources exceeds that of other current or anticipated patients. When dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of “first come, first serve,” rather than prioritizing people who would require the fewest resources.

To read the DREDF brief in full, go here. Thank you to all at DREDF for issuing such a rapid response to this crisis!

 

COVID-19 Reveals A Deadly Failure of Priorities

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With the looming and imminent threat of insufficient hospital and ICU beds, medical equipment and healthcare staff, I found myself recalling an old favorite TV show from my college years. MASH (mobile army surgical hospital) created both comedy and drama around the reality of having three operating room beds in an army tent on the war front in South Korea. Triage was part of the routine, determining who gets on the operating table first, and who gets the best surgeon (Hawkeye) of the four in the unit. Now and then, when the frontlines had faced a heavy attack and massive casualties poured in, the plot explicitly focused on triage situations. Hawkeye always struggled to do the right thing.

COVID-19 is leading to more and more news reports on the fast approaching reality that the demand for hospital beds and ventilators will exceed supply. New York’s Governor Cuomo was carried on MSNBC yesterday and today, discussing this crisis.

A few years ago, NDY’s research analyst, Stephen Drake (aka my husband, now retired), reviewed New York’s Ventilator Allocation Guidelines, released in 2015. The pandemic guidelines operate on the principles of triage.

The primary goal of the Guidelines is to save the most lives in an influenza pandemic where there are a limited number of available ventilators. To accomplish this goal, patients for whom ventilator therapy would most likely be lifesaving are prioritized. The Guidelines define survival by examining a patient’s short-term likelihood of surviving the acute medical episode and not by focusing on whether the patient may survive a given illness or disease in the longterm (e.g., years after the pandemic). Patients with the highest probability of mortality without medical intervention, along with patients with the smallest probability of mortality with medical intervention, have the lowest level of access to ventilator therapy. Thus, patients who are most likely to survive without the ventilator, together with patients who will most likely survive with ventilator therapy, increase the overall number of survivors.

Within the hospital environment, ventilators would be allocated and, if necessary, re-allocated as the pandemic proceeds. Importantly, the guidelines state:

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.

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

It would be helpful if disability advocates determine whether similar guidelines exist in their state and, specifically, what they say, in order to inform their communities and ensure that individuals who use breathing support can make the best decisions for themselves if they get sick. (In my opinion, I should not go to an acute care facility if I get sick.)

It’s hard to disagree with the principle of maximizing the number of pandemic survivors but, nonetheless, a few things need to be said.

First, COVID-19 is not the only cause of the shortages we face. I’m on a New York Medicaid advocacy listserv in which one member quoted Judy Wessler, former head of the NY Commission on the Public’s Health System:

Let’s Remember That Since At Least 2006 There Has Been A Tremendous Push In New York State To Close Hospital Beds And Consolidate Hospitals. We Used To Have 4 Beds Per 1,000 And Now We Have Something Like 2.8 Beds Per 1,000. So Now We Have To Play Catch-Up.

Wessler was also quoted in a NY Post article entitled New York has thrown away 20,000 hospital beds, complicating coronavirus fight.

How many states have taken similar steps as they offload their healthcare responsibilities, letting managed care take over and allowing that industry to suck up around 20% of our healthcare dollars and put profits over people? So our shortage of beds and ventilators is not just caused by COVID-19 but also by unacceptable political and fiscal decisions made largely under the public radar.

Second, how will the idealized triage principles be implemented in practice? The NY guidelines call for a triage committee. It will not be the attending doctor. I don’t think we can count on the committee being composed only of doctors like the caring Hawkeye Pierce. And there will be a time crunch. The situation invites biases like ableism and racism to creep in.

Third, we already know that healthcare resources are denied based on disability bias under futility policies, denial of transplants and other practices reported in the National Council on Disability’s bioethics series. In this crisis, further devaluation of our lives is a real threat.

Not Dead Yet was among many organizations that signed onto a National Disability Rights Call To Action on March 3rd. We are all are trying to impress upon policymakers that our lives are valuable. We are not worth-less and we are not expendable!

This pandemic resource shortage will touch people who previously felt safe from healthcare rationing. How we treat people in need is a reflection of the priorities of the policymakers we elect. All too often, the voices of people with disabilities and other justice communities have been drowned out. Perhaps the unnecessary loss of life from this pandemic due to healthcare capacity limits will cause others to join with us in re-evaluating the priorities that got us here.

 

 

 

Disability Activists Are Strongly Opposing Maryland Assisted Suicide Bill

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Disability rights activists are working to oppose Maryland’s assisted suicide bill, SB 701, on several fronts.

They are active participants in the broad spectrum coalition called Maryland Against Physician Assisted Suicide. The coalition has been preparing for the first hearing on the bill, scheduled for Friday, February 28 beginning at 12:00 noon.

On February 17, an article by Katie Collins-Ihrke, Executive Director of Accessible Resources for Independence, was published in the Frederick News-Post entitled Marylanders need health care, not assisted suicide:

“End-of-life option” bills are consistently marketed to the public as applying only to people who are expected to die within six months, not to people with chronic illnesses or disabilities. But buyer, beware! Apart from the fact there is no way to prevent mistakes in diagnosis, even when more than one doctor is involved, the term “terminal illness” can be surprisingly elastic. An Oregon health official has written that conditions can be deemed terminal even if there is lifesaving treatment, but the person is uninsured or cannot afford it. This includes diabetes and other serious conditions which can be medically managed.

A press conference that will precede the Senate committee hearing will feature three speakers with disabilities:

  • Sheryl Grossman, Community Living Advocate at National Council on Independent Living
  • Sherman Gillums Jr., Chief Strategy & Advocacy Officer at American Veterans
  • Edward Willard, former Director of Advocacy Supports at the Developmental Disabilities Administration

NDY’s Anita Cameron has traveled to Annapolis to testify alongside these and other strong representatives of the disability community. Her powerful testimony is below.

Not Dead Yet, the Resistance

Anita Cameron’s Testimony
Opposing Maryland SB 701
Friday, February 28, 2020

Committee Chair, and Members. Good afternoon. Thank you very much for allowing me to offer my thoughts to you today.

My name is Anita Cameron. I am a 54-year-old with multiple disabilities, two of which are degenerative, and one which will take my life. I am testifying in opposition to Senate Bill 701, the End of Life Option Act.

This bill is a physician assisted suicide bill. It is important to be up front and honest about what this is. Couching it in pretty language is disingenuous at best, and dangerous, at worst.

I am Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to physician assisted suicide and euthanasia as deadly forms of discrimination against people with disabilities. I live in Rochester, New York, but work with people of color and marginalized communities around the nation.

My primary reason for opposition to this bill and others like it is that disabled BIPOC (Black, Indigenous and People Of Color) are at particular risk of being harmed by it.

Our health care system is inherently racist. Studies show that Blacks and people of color receive inferior medical treatment compared to Whites. We are less likely to receive adequate treatment for heart conditions, diabetes, cancer and chronic pain. Oregon has made it clear that a person whose condition becomes terminal because they don’t receive healthcare they need would be eligible for assisted suicide.

The lives of people with disabilities are largely devalued by doctors and society, in general, particularly if we are living in poverty. The lives of BIPOC with disabilities are even more devalued due to racism and stereotypes about our communities.

Although assisted suicide requests in Oregon (which this bill and others are modeled on) are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare faces cuts and assisted suicide becomes more acceptable due to well-funded efforts of groups like Compassion and Choices. In fact, though the numbers are small and increases are incremental, there has already been a rise in the number of assisted suicide requests from people of color in California and Colorado since their laws went into effect.

Another reason for my opposition is that doctors would be the gatekeepers of people’s lives under this bill, and can decide for you about your quality of life. Anyone can request assisted suicide, but a doctor decides who gets suicide prevention and who gets suicide assistance. And since the top five reasons people request assisted suicide in Oregon are related to disability, like feelings of being a burden on others, it’s clear that doctors see disability concerns as good reasons to prescribe lethal drugs.

Further, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. A funny thing happened, though. Once she got there, her health began to improve! Over ten years later, she is still alive, lives in her own home in the community and is reasonably active.

Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place in Maryland’s healthcare system.

Please vote NO on SB 701.