 Hi everyone who's joining us right now we are just going to wait another 30 seconds to a minute for everybody to join and then I will start with the introduction. All right so I think we can get started now. I don't want to take a time out of our today's speakers talk so we are going to get going and people will still trickle in I'm sure. Thank you everyone for joining us for another seminar in our Health Law Institute speaker series. We have a phenomenal speaker today we are very very excited for the talk. My name is Adelina Iftene and I am the Associate Director of the Health Law Institute here at Adelhouse University. Before I get started with the introductions of Professor Stein who's our speaker today just a couple of housekeeping issues that I want to make you aware of. So you will see that today we have an ASL interpreter Roxanne she is going to be here for the duration of the event today. So if you are interested and you want to have the image in LART I recommend that you pin her screen so that you can see her better. Secondly we have a closed captioner live closed captioner here today as well. So if the subtitles did not come out automatically for you please go on the on the bar down you are going to see closed captioning and you can turn them on so you can you can use that function as well. The webinar is being recorded the audience members are not going to be captured in the in the recording it's just going to be the speaker the host and the ASL interpreter. But we will make the recording available after the event on on YouTube on the Schulich School of Laws YouTube channel. And and finally you are going to see that there is no chat function and that's because we are we have a lot of participants we have we are over 100 people in audience already so we are not using the chat function we are using the Q&A function for the for the questions Professor Stein will speak for 30 to 40 minutes after which time or as long as he would like to and subsequent to that we will open it up for a Q&A. I ask that you type your questions in the Q&A box and I will be fielding the questions after the talk and put them to Professor Stein so please feel free to start typing whatever you want I will see them all so you don't have to wait until after the talk I will see them all and and and fill them. So with that said I am going to provide a brief introduction to Professor Stein. It's not going to be very long he has a lot of accolades and a lot of accomplishments so I could take the rest of the hour reading them but I'm just going to to say a couple of words about him before before before he starts so Professor Michael Stein is the co-founder and executive director of the Harvard Law School project on disability and the visiting professor at Harvard Law School since 2005 considered one of the world's leading experts on disability law and policy Dr. Stein participated in the drafting of the UN convention on the rights of persons with disability he works with disabled people's organizations and non-governmental organizations around the world actively consults with governments on their disability laws and policies advises a number of UN bodies and national human rights institution and has brought landmark disability rights litigation globally he has received numerous awards in recognition of his transformative uh transformative work and I do encourage you to look online in our event you're going to find more information about Professor Stein if you're not familiar with his work um that said I am going to uh turn it to you now um Michael and uh I'll turn my camera off and I'll come back after uh after your talk for the Q&A thank you again for being here we are all very excited for your talk thank you ever so much for for having me I'm delighted to be here I have a long history of interacting and working with our friends to the north and a big hello to our Canadian Council of People with Disabilities and the Human Rights Commission both national and and provincial and of course my good friend Steve Estee who owes me quite a number of Alexander Keith's Pale India hails it's uh it's a privilege to be here with you we're going to talk about people with disabilities and and COVID um but let's start then with with what we don't know what we don't know at least as far as the U.S. and certainly beyond it what we don't know is actually generally what the numbers are of persons affected and felt by COVID the reason for this is that the numbers we have in the U.S. of some 240,000 deaths are those that are marked on death certificates not those that are measured as against the expected number of statistical deaths per year when we look at the latter we're somewhere closer to 310, 320,000 and so people are passing on people are suffering and passing on but not noted as as falling to COVID instead their death certificates are providing things like pulmonary disease or heart attacks or or pneumonia as far as the disability community people disabilities have not been disaggregated in the U.S. as far as COVID fatalities we are maintaining data on race and gender we are maintaining data on age and some of the age overlaps will coincide with disability but we don't have disability specific data and so we're lacking information on that respect we have some general information we do have information such as deaths in group settings for persons with disabilities are running at something like three to one that of the general population and we believe that something like 30 to 40 percent of all deaths are occurring to elders in congregate care facilities and again there's an overlap with the disability population in that respect as well so we're not getting an accurate number as far as people with with disabilities we're also not getting an accurate number or a sense of what the impact is on people with disabilities and by that I mean what is the impact on their access to public health or just to routine healthcare access we are starting to see studies that do that the monogon institute at massachusetts general hospital is gearing up a project next month that will look at marginalized populations among them persons with disabilities and figure out what the impact is as far as their health including their mental health which is a huge issue for everyone during this pandemic but we're not getting that information we have a small study that we're going to be starting at each part Harvard law school project on disability probably in conjunction with the monogon folks in which we will be interviewing persons with intellectual disabilities sorry living in congregate care or group care facilities and find out what the impact is on them from anecdotal evidence from speaking to the populations that we work with at H pond meaning the self-advocates with intellectual and other disabilities we know that there has been immense impact upon their access to regular routine healthcare and I can give you an example of that we have one self-advocate we've worked with for many many years who last February was scheduled for a basically routine but rather serious operation he was admitted into hospital in February his operation was immediately stalled because of the COVID prioritization and so he was shifted from the hospital basically to a nursing home to a long-term care facility he's a person with intellectual disability and with cerebral palsy he also happens to be a person of color and he's been stuck in that rehabilitation facility ever since his day-to-day health has decreased because of lack of access to basic services such as physical therapy lack of access to his family and his network of supporters last week he was scheduled finally for this operation and after the post-op procedures where they were assessing his health care they found out that his condition had deteriorated to the extent that they needed to reschedule his operation yet again because now he needs to have a more serious operation so this sort of anecdotal evidence is what's coming to the fore it has not been systematized we're hoping to get more of this information in an empirically valid usable manner outside the US we are starting to see we are starting to see studies of the impact upon disabled communities around the world there was a study on women with disabilities in Kenya by women enabled if funded there will be a study coming out of Bristol on people with disabilities in Kenya and in Uganda and there is of course the information that has been posted routinely on the disability rights monitor which you can access online so that's what we what we don't know we also don't know what the impact is on people with disabilities in their care during periods of COVID there's a small article that my friend Omar Sultan Hake and I wrote that's available online in the Journal of Health and Human Rights about COVID and disability bias among clinicians but this is more or less theoretical and is not based by empirical evidence we don't know what happens at the point of of treatment having said that before we pivot to what we do know I think it's important to emphasize that the frontline workers the hospital and other public care people are absolutely heroic in the reference of in fighting against COVID this has been a pandemic of epic proportions and many people have worked valiantly through the health care system often without without thanks often without adequate recognition and of course we're all very grateful to them so what do we know let's pivot to what do we know we know that in times of non-pandemic marginalized populations whether persons with disabilities indigenous groups racial groups and others women as well are often put towards the end of the hierarchy in receiving adequate public health and access to health we knew that the beginning of COVID then at least in the signal in the United States from on top was that people with disabilities and elders would be likewise shifted towards the back of the line we heard that in two respects we heard that from the beginning by the Trump administration and the president's statement early on once he would recognize that there was a COVID pandemic which took months to do that it was not a serious thing but rather it would only impact upon those who weren't so healthy or those who were older meaning people with disabilities elders and the overlap in between so it was very clear that the federal government would not be paying any special attention to vulnerable and marginalized populations in fact quite the opposite we also saw from the scientific community in pieces published in high-level medical journals such as JAMA and the New England Journal of Medicine pieces for example by Zeke Emanuel that we ought to be thinking about triage how do we allocate limited resources and in thinking about triage where doctors and others cannot treat everyone always with the same level of care the situation by the way which we have yet to see come to fruition thank goodness but in those hypothetical circumstances according to Emanuel and others people with disabilities should be deprioritized as those who have greater health needs cost more according to him they ought to come last in line so we saw that people with disabilities were not exactly front and foremost as far as thinking about who would receive healthcare then we had something called the critical standards of care cscs this is guidance that's created by state by state created by medical professionals on what to do in circumstances of resource limits and emergency situations such as this most of these were created before the pandemic many of these have been amended during the pandemic either at the early stages or more recently and I won't give you the numbers on it I purposely did not bring PowerPoint on it because there's an article coming out by myself and some friends and to be honest we really need to recheck our coding and make sure our data is absolutely tight before we do that but I'd like to describe some some trends for you because this is actually a positive trend and the trends have been pushed by the disability rights community by the people with disabilities and their representative organizations which we often call DPOs in the literature I can't describe for you some of the backdoor negotiations and political pressures because those are not public but we can describe some of the things that are in the forefront so just to give you a general sense of cscs those triage directing documents what we've seen is at the beginning before the pandemic there was a number of you know like 68 68% or so of these cscs included categorical exclusions of people with certain types of disabilities and others early on in the pandemic though there was a pushback against this mostly by complaints filed at the office of civil rights at the justice department in DC and the justice department ruled that you couldn't have categorical exclusions and also that you couldn't have discrimination against people with disabilities and we saw a decrease in in these revised cscs of categorical exclusions as far as the use of long-term survival as a means of assessing whether or not to treat people at points of emergency right when their lives are in danger who do we prioritize we see a curve of before the pandemic you know a level of here on use of long-term survival then an increase of it and then a decrease of it when some of the advocacy came to bear the focus on resource intensity how much resources do we have to use per individual with the assumption that people with disabilities will need higher amounts of resources we've seen a decrease in the cscs across the 50 states as far as whether that is a valid basis for for prioritizing healthcare we've seen a dramatic increase in the inclusion of reasonable modifications what you may call reasonable adjustments in Canada and elsewhere as far as cscs should clinicians and others be thinking about reasonable modifications to the basic care that's been provided in order to accommodate people with disabilities an increase that way and we've also seen a dramatic increase in the number of chronic ventilator protections meaning people with disabilities who have ventilators and use them before COVID because of various conditions we were hearing stories and seeing regulations that would authorize healthcare providers meaning hospitals to remove their chronic remove their ventilators and reallocate them to people without disabilities I mean think about that that's kind of like you know taking away your wheelchair or taking away your white cane when you get to to the hospital because someone else can use it clearly something that is both illegal and also unethical as well as just highly highly troubling so that's just a broad overview in terms of you know trends as far as these cscs to backtrack for a minute so in the US despite our not having national health care which is you know a tragedy and a mistake that is being really highlighted during this COVID pandemic we're the only industrialized nation not to have a functioning systemic health care and of course that has been you know that for whatever health care we do have nationally that has been pushed back several several steps by the complete ineptitude of those individuals in Washington who have denied the existence of the pandemic denied the ability of the federal government and the state governments to coordinate have just been complicit in the creation of the greatest public health failure probably since the middle ages and the bubonic plague but we don't we don't have that nevertheless under the americans with disabilities act and under the rehabilitation act providers of health care including in the COVID context are required to not discriminate against persons with disabilities in the provision of health care and that's fairly clear it's also clear under the ACA the Affordable Care Act sometimes called Obamacare so let's look at those specific criteria we just discussed in the cscs and talk about what's being used and what's not being used and what's and what's going on early in the pandemic health and human services office of civil rights issued a bulletin indicating that persons 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 upon the presence or absence of disabilities or age and that's a I direct quote but part of the problem with public health both in the US and elsewhere is that quality of life judgments remain very often posed as neutral and empirically valid and yet have within them stereotyped and weighted values about the lesser value of the disabled life and the lesser quality of life of those who live with disabilities we see this in empirically neutral things such as qualities q a l y quality adjusted life years and in dailies d a l y or disability adjusted life years these are neutral quote unquote empirically based so they say but I doubt value judgments that were created by the world bank and the world health organization in the 1990s in advance of thinking about a push on improving global public health both physical and mental the qualities in the dailies were put together without having disability experts included in their generation it was as usual typically bioethicists medical doctors and others and it's unclear how much stereotypes went into the basis and generation of these neutral criteria so under dailies for example there is no assessment of context the disabled life is worth roughly two-thirds that of the non-disabled life regardless of where you are living and what your supports are so if you take someone like myself who uses a wheelchair and lives in highly developed Cambridge my life is stated to be the same value as that of my path you know pathologically and and duplicated twin in Bolivia who doesn't have assistive technology who doesn't have access to health care and so on so there are problems with the dailies and the dailies to begin with there are other problems again with these neutral criteria of public health often used by people like professor Emanuel professor Govind and others in speaking about triage in that there is something different in disability and the way is treated in any other group across the board of marginalized populations assuming that disability related health care costs more which it likely does assuming that the disabled life is only worth two-thirds that of other lives which it isn't true but let's assume for the moment that it is why is this considered a valid means of allocating health care we know for example empirically in the U.S. that people who are white live longer have better health care and have better outcomes than people who are black and yet we would never at least above board and on their face create standards of care that say we ought to allocate health care to black folks after we allocate them to white folks because white folks due to their better socioeconomic status are more likely to go back to the hospital if symptoms arise get follow-up visits have better outcomes because of all the social determinants of health we would never ever ever ever say that and yet here with qualities and dailies and with triage it's been assumed that this is a neutral non-prejudicial and acceptable way of allocating public health care this is a problem this is one of the issues that we've seen we've seen there have been categorical exclusions in some of these CSEs fewer now than when we began the pandemic about who can receive care in the COVID emergency situation what do we do when we have to allocate limited resources the categorical exclusions are absolutely prohibited under U.S. non-discrimination law and really ought to strike us as an affront to morality and to dignity an example for just to throw one out that the office of civil rights remanded it was the state of Alabama which basically had a rule that said those with intellectual disabilities and a specifically targeted down syndrome should not be considered eligible for ventilator services clearly this seems like overt discrimination in its clearest sense categorical exclusions are based on classes of people not on clinical events or clinical times and both the ADA and the rehabilitation act makes it clear that this is prohibited and yet there are still some categorical exclusions within these CSEs long-term survival here's another one that is interesting many CSEs utilize prospects of long-term survival how long you'll survive after the initial trauma treatment related to COVID as a qualification for the receipt of lifesaving medical treatment this criteria is both ethically and legally inappropriate it's also empirically questionable you know we don't know we're not gone and we don't know how long people will survive after receiving emergency services the ethical problem with it is of course that the reason we provide lifesaving care at the point of being close to death is that we're intending to save people's lives not that we're intending to have best outcomes not that we're trying to secure the long-term survival of various individuals the other problem with it is that it's often the result of structural inequality and notably on the basis of race and class and disability that certain life limiting conditions exist such as diabetes obesity or COPD which is a you know chronic lung and pulmonary kind of disease many of these diagnosis even if they can be linked to disabilities though are often heavily influenced by societal priorities when we talk about disability and the allocation of research and treatment resources in other words there's a reason why even if their long-term prognoses are different why they are different so for example over the last 30 years people with cystic fibrosis and HIV AIDS have both realized a dramatic expansion in life expectancy as the result of public and private research investments emerging from the activism of these individuals and their families this shows that survival expectancy from a particular condition is not the result of random choice it's not the result of empirical reality it's not inherent even when you have the diagnosis but rather it's instead a collective choice about what conditions deserve investment stop for a moment and reflect upon the billions and billions of dollars that have been spent on cancer research and rightly so I mean we've seen the prospects of children with cancer surviving rise right from about 15 or 10 percent in the 1970s to something like 90 percent in 2020 and that's wonderful but many of these life expectancies right they're not inherent they're not inexorable they're based upon collective social choices other categories like Down syndrome and cystic fibrosis that are not relevant right to the essence of the program it you know why why should we think about whether someone with cystic fibrosis or Down syndrome is going to live as long as someone without cystic fibrosis or Down syndrome when the whole purpose of life-saving treatment should be to save these individual lives another allocation decision and another thing that's been driving these cscs and triage decisions has been resource intensity you know and one of the foundational principles of disability law is that we need to accept that there will often sometimes often be some degree of inefficiency or some kind of increased cost in order to modify or accommodate the needs of people with disabilities in the name of equality of opportunity we can debate how much of this is inherent in the disability and how much of this is inherent in the social and cultural conditions of how we prioritize and create our world but if at the moment there is a larger cost to it that's exactly what a reasonable modification is supposed to go to right i mean we're supposed to modify the way that we provide public services including healthcare based on disability and in canada other features based upon whether it is reasonable or not not based upon whether it exists or not the other problem with the with the resource allocation arguments has been that hospitals and clinicians cannot accurately predict what the availability is of resources weeks from now or months from now we just don't know so being able to say to clinical providers let's look at what the cost is now and let's see if there's going to be follow-up costs later it's just not empirically valid it's not sustainable so those are some of the issues that we've seen with the cscs so overall again we've seen an improvement in the in the csc guidelines we've seen the inclusion of things like reasonable modifications reasonable accommodations we've seen a decrease in categorical exclusions we've seen a decrease in the use of long-term care as a condition some of the short-term care conditions which i didn't talk about are valid you know a clinician is supposed to decide at the point of contact someone is in front of them will this person survive with the treatment and that is sometimes can't overlap with with disability and pre-existing conditions but it can also sometimes overlap with non-disabling pre-existing conditions or conditions that we don't always include or think about as falling within the disability and most of the changes that we've seen in these cscs have come about due to the advocacy of people with disabilities that shows us a couple of interesting lessons one is once again the power of the community whether it's communities of people with disabilities first peoples now people of various racial origins women lgbtqi etc but we see the lesson that those who advocate and those who connect with their policymakers can influence policy it also shows us that in promulgating these standards of care or promulgating irbs internal review boards or promulgating ethics committees and hospitals that decide about you know standards of care not only within pandemics but elsewhere we need to have people with disabilities as stakeholders involved more often than not as in the case of the development of the dalleys and the qualities people with disabilities were not consulted or included and when people are consulted and included in the development of neutral and objective in quotation marks criteria we see a greater sense of occlusion and a greater sense of equality so that is some of what we're seeing in the U.S. and abroad both what we don't know and what we do know and I'm happy now to turn back and to dialogue with you with any questions that you may have thank you so much professor stein that was I want I wanted to say initially fabulous but it's actually very depressing so thank you for that and I would like now to open the floor for any any questions that that people may have I already have a couple here so we're going to start with these ones that have come through during the talk and then hopefully there will be more coming so somebody is asking here if you have any idea of how individuals who had their ventilators removed may be able to obtain justice and if so on one hand if you know they will obtain justice and second what are their options from from that perspective well if I was in Canada I'd contact you know David Baker you're one of your better or best disability rights lawyers or one of the provincial human rights commissions and and see what kind of redress you could have hopefully you haven't seen it that much in Canada I pray that you haven't beyond that you know we are living in a digital world and you know going out there through social media and letting people know that the University of X is hospital took away my ventilator and put me in in dire condition or took away my whatever's friend you know spouses whatever's ventilator and endangered them or maybe even killed them would be a good way of trying to raise awareness about it it seems to me just you know demonic that a hospital or here or healthcare provider would do that of course the what's reported outside the U.S. and Canada you know is also way worse than what we're hearing in the U.S. and Canada but that doesn't excuse it anywhere anytime I'm gonna read the next question given the failure to collect data specific to people with disabilities both generally and in relation to experiences with an impact of COVID-19 a particularly profound health determinant at present how would you assess the utility and or efficacy of article 31 and 35.2 the reporting to the committee of the conventions for the rights of persons with disabilities well that's a that's a good question and of course it also is contingent upon your country having ratified and being willing to implement two different things the CRPD and so you know the U.S. remains one of the eleven U.N. member states that has not ratified the CRPD which is a cause of frustration and shame to many of us in the U.S. especially those of us who worked on the CRPD but assuming that your country has clearly it's a failure in data collection not only under the CRPD but also likely under the SDGs the sustainable development goals which have a you know target and indicators regarding access to public health it should be reported to the committee it should be reported to the WHO it should be reported in as many places and venues as possible. Another really interesting question how do you foresee these kinds of principles you have described applying to the distribution of a limited vaccine in the U.S. Oh that's a that's a marvellously acute and also troubling question lost in in some of the rhetoric about vaccines with over optimism about two to three drug providers going to the drug administration and requesting emergency permission to create a vaccine has been two things one which you didn't raise which is the efficacy of the vaccine vaccines only tend to work you know in 60 or 70 of the time people who you know do get the flu vaccine annually still do get the flu people who have had the pneumonia vaccine still do get pneumonia I did when I showed up in India and got a strange strain of it but secondly once these vaccines are being created and even assuming that they're safe and efficient there will be priorities right and some priorities one can understand right so health care providers and frontline workers getting access to it so they can keep us all well seems to make perfect sense but beyond that it's clearly going to reflect right some kind of hierarchy urban over rural socioeconomically privileged over those who are in poverty and have less access to information as well as healthcare it's going to be a problem and I believe and I hope that I'm sincerely hope that I'm wrong that it's going to mirror the inequalities that we see currently in access to public health speaking of which you know one of the strange things that has been said about COVID and and it's totally untrue is that COVID is the great equalizer meaning that everyone dies it's not the great equalizer those who are privileged have way better resources and access to resources if you're living in a country or a place even here in the United States that does not have access to clean water you're not this is not the great equalizer if you can't access the internet for information or if you can't possibly order shopping in you know by the internet you're not going to be doing as well but what COVID has done is it's shown you know shown a really clear light on many of the gaps and inequalities that exist within our societies and we're going to see that with the vaccine part as well. Okay so here's a long one I think there are actually a couple of questions in here does anyone actually believe that qualities and delis are conceptually or ethically neutral as opposed to being driven arguably by the neoliberal agenda to emphasize or enable the commercial turn in healthcare and to forefront health system economic efficiency in other words have there been resounding defences of them and support for them and related to this have they been subjected to detailed and sustained ethical critique and so what alternatives to these tools are being suggested for the emergency and resource allocation setting. That is a wonderful ball of questions that I need to but it's a wonderful wonderful set of of questions. Before answering it I'd like to preface it by saying that utilitarian ideas the greatest good for the greatest many is is the foundation of public health allocation and most of the time or much of the time it functions fairly well and you can kind of understand why it would be to use and why you would function you know we all have limited resources at some point and how we spend them needs to be figured out based on various criteria so I'm not against the utilitarian idea I'm not against the resource allocation idea what I am against and what dailies and qualities bring to the fore as you point out are the inclusion of unstated assumptions baselines that are not neutral that are referred to as neutral as if of course everyone knows that they are neutral much like you know until the 1980s and probably for many people still today they'll say well of course women are not as efficient as men as workers or that disabled persons cost more or that people of color are not this or not that these things which have gone by the by and many other groups remain remain within the context of disability not only in public health care through dailies and qualities but through others does anybody believe them well Zeke Manuel who's been one of the more influential public health people clearly believes them the World Bank still uses them the World Health Organization uses them they have come under criticism if you just do a Google search of dailies qualities disability you'll see a number of critiques that come up very intelligent thoughtful critiques and yet they're still used as kind of the flawed or or in some people's minds not flawed best available instrument to jump out of public health and to go to philosophy for a moment it's kind of like looking at John Rawls and the theory of allocation from behind the veil and then criticizing him by saying but you didn't include people of color or people with disabilities well you have a solution in both these cases you can either say throw out dailies and qualities throughout behind the veil or you could say amend dailies and qualities or you could say amend behind the veil to include people of color and people with disabilities I've seen different approaches in each one of these different areas to me it would be a matter of revising the dailies and qualities by having persons with disabilities their perspectives and priorities included in actually looking both empirically and philosophically at the quality of life and the context of life of people with disabilities there is another question here are there examples of the inappropriate deployment of mental health legislation to detain a person with a disability with COVID who might face barriers complying with public health restrictions I believe you can find a fair number of them anecdotally on the disability rights monitor which is global and which has something like as of today maybe 1300 or 1400 complaints and stories and and anecdotes from all over the world I think you can find that but your question also raises a related question of you know when we are trying adequately to treat persons with various disabilities as far as COVID or as far as public health are we actually thinking about diverse groups so one thing that's been clear is I believe there is a very great lack of plain language guidance for those with intellectual and cognitive disabilities there's been a lack of thinking about what happens when we isolate people with various disabilities what if you're on the spectrum and you're being put into the ICU intensive care unit without access to your friends connectors and supporters we need to rethink across the board on public health and COVID in a bizarre sort of way can enable us post COVID to think about where our failures are and where there is rooms for moving forward so it has been a bad story but there were also good parts of it we see the disability advocacy make changes and we're seeing areas that we can mark out for thinking about how to progressively change public health all right so we are we don't have any more question in the Q&A I'm wondering if there are if there are people who prefer to come out and ask their question loudly if they want to for whatever reason okay I we do have one hand up so uh let me let me look for that I was just realizing that perhaps there are people who um do not wish to type so um okay so we have somebody called Vicky here um I gave permission to uh Vicky if you want to come on thank you so much thank you so much um my question is I have no discussion I'm chair of several different disability rights organization and what we're just fighting right now which you guys in the US have kind of figured out we're trying to get institutions that are in scale congregate let me play this close I unfortunately have to live in one because the government doesn't know where else to put me um because the care I need what exactly did you guys do to make that stop because I will do anything at this point so you guys are more in the states you've already done it so any advice for someone starting out trying to get these horrible voices um shut down well you know we we still have a way to go um and I guess it's all which side of the which side of the grasses is greener I worry about about the surviving institutions and congregate care um we've had two sort of waves of of deinstitutionalization we had the 1980s one brought about of course by the advocates and their families within the ID community and then also within the psychosocial community and it was kind of a perfect storm because it occurred during the Reagan administration when Reagan was downsizing government in his words but really they weren't downsizing government what they were doing was shifting the cost of the federal government from the federal government over to the states so the same amount of money was being spent it's just it was called something else um and the administration then besides having the advocacy movement peak the administration came out with documents about how it's more efficient for people to be living within the community than to be living in large-scale congregate care um we saw a lot of good outcomes from that we saw a lot of bad outcomes from it um you know classic bad outcome was New York City in the 1980s they opened up the psychiatric hospitals which is good and let people out but they did it without support and those people wound up either in jail or dead much like South Africa about two years ago at the SCD many life you know life institution so one was that that was one wave of movement the other movement was more of a legal challenge we had the Olmstead decision come out of the US Supreme Court it's our version of round the board of ed for the disability community it stated that people with disabilities should be entitled to live in the least restrictive setting and then it remains stagnant for many years until the US Department of Justice began to bring de-institutionalization cases systemically beginning with the US south which had the best the the worst practices and began pushing for people to live within the community so there's the availability one of of movement by people like yourself Vicki and and your supporters you know protesting speaking about needing to live in the community raising hell because you should maybe you know raising hell at the CRPD committee Canada doesn't like being embarrassed much like other states don't like being embarrassed in front of the UN and then there's the matter of legal challenges you have one of the marvelous marvelous you know supreme courts and you know a challenge to not living within the community I think would likely if it framed well be considered appealing you know by that court not only under CRPD but also under the you know the Canadian charter right I mean fundamental rights you have a right to live in the community and you ought to be pushing for it so I'm very connected to to your last to your last remark somebody says in Ontario this summer a court rejected the challenge to visit the restrictions which prevented the supported decision-maker to enter and support the patient with disabilities while hospitalized what is your view of the appropriateness of courts as a redress they were asking for these particular situations but I think we could go further and say generally the appropriateness of courts as redress for much of the issues that we talked about today well you know it's it's a it's a funny irony because I'm a lawyer who teaches you know law professor who teaches lawyers and who you know has has been involved in you know in bringing legal challenges you know I've got 20-something at the European Court of Human Rights in other places and there's a place for for law but one would hope actually that good common sense and more expedient ways of bringing it and going to court which are expensive timely very much favor those and better socioeconomic circumstances who can get a lawyer that there should be better ways of doing it if I you know not knowing what happened in Ontario and I'm sorry for for these people's pains one would imagine that going to the hospital's ethics board or raising it on social media might be a more expedient and less expensive way of challenging exclusionary practices but first of course you know it all comes down to people to people and I have no idea what happened in that case but very often you know people can be made to realize that it's in their cell in their own best self-interest so for example explaining to the hospital that's not just my right to come in as a supportive decision maker or the patient's right all which is true but gosh it would make it so much easier for you to understand the patient and to understand their wishes if we were to facilitate their communication can be framed as a sort of win-win rather than an oppositional but again I have no idea what happened last summer um somebody says we are currently awaiting amendments to our medical assistance in dying legislation many people are concerned about people with disabilities not being protected and being pressured to choose made or having other others make the decisions for them do you have any comments on that well I remember the discussion and and I was asked by some folks in Canada to chime in on the discussion um it's a very difficult area because one can imagine various circumstances where an individual would want facilitation and end of life decision making and yet at the same time we always worry about social stigma and pressure just in the ambient culture about being a person with a disability about being a burden about being less worthwhile than others um I happen to be one of those liberal types who has gone so far left that I have a small libertarian streak and and generally in favor of assisted suicide and other kinds of palliative care if there are sufficient safeguards it always comes down to whether there if there are sufficient safeguards and many people within the disability community will feel like there aren't or that there can't be but that's why I think about it um thank you I I have one or two questions of my own before we don't have any more questions from the participants but I do we have another 10 minutes so if people want to ask questions please either raise your hand or or fill it in the q&a box um otherwise I'm curious regarding I want to go back a bit to the issue of triage protocols because um that has has not been an issue in Canada but the reason why it hasn't been an issue in Canada and I don't even think it has been discussed to the extent to which it was in us is because uh we didn't have the um we didn't have the very significant issues that um and outbreaks that that us had right so we didn't we didn't reach the point where um that was that bigger for concern so I'm not sure how that would have gone if we did have them right um so um what what does the what do various international bodies say on that precisely regarding us responses to that like what what did the for instance the world health organization were there any comments coming out of them any guidelines how about you when like was there was there any significant and meaningful engagement in terms of the highly problematic protocols that were created in the u.s and probably in other countries as well um and uh and uh or or did they just come out with their own guidelines in that what was what was the feel on that well I'll be honest with you I'm unaware of of international critiques specifically of of these and remember they're not national guidelines they're state-based guidelines province-based guidelines um and so we have you know 50 something of them um we do know that you know the secretary general at the un was very good in in you know making a statement about valuing everyone and treating everyone you know under covid and etc um who is is very ecumenical and in that way as well um it's uh it's a very troubling thing it's also troubling because if you actually read some of the triage guidelines you know these sort of death scenarios should we allow three people to die to allow one person to live you know it's it's framed as if as you know by these people as if the medical profession is doing something noble however difficult and yet you know even here with the current surges that we have because of all the foolishness and the ineptitude you know plus covid plus you know magnified by foolishness and ineptitude and by our federal government um and the orange psychopath um even so hospitals have not reached capacity you know these these triage emergency guidelines have not been put into effect um it's good I guess that you plan ahead for all contingencies um but the way it's been put forward it's it's been framed as if it's more of a reality than it has been and while we need to be concerned about the cscs that are made with invalid criteria I think as a nation we need to be more concerned about why are we the only industrialized nation not to have a valid national healthcare system um so just to to push a little more on that what in terms of the triage protocols how how should they look like like how how do you envision them is there because I mean I would imagine there is a role for them right it could be that there is in the current situation where you know the healthcare system is now what it should be so then how do you how do you envision them in a manner that's actually compliant with both international and national human rights of people with disability knowing uh very well that most of the triage protocols unfortunately are significant include significant discriminatory clauses against against the various groups including the reasonable modification idea you know that the the basic course of treatment needs to be done um with reasonable modifications understanding that disability law requires an individual assessment so that we're not treating groups of people at a time we're treating a patient after a patient after a patient um and to be fair to the clinicians although I you know I do write on clinical bias and do other things to be fair to the clinicians I happen to be one of those optimistic people who believes that most healthcare practitioners at the point of service are acting in good faith and trying their best to deliver adequate and effective healthcare interventions um you know the problem with many of these broad vague guidance whether it's you know triage under COVID or whether it's legal capacity and involuntary incident you know involuntary treatment is that at the end of the day it comes down to the clinician and all the social biases or lack of biases that the clinician is caring and the individual patient right all right um thank you so much I don't uh see oh there is one question actually um could you comment on ableism and its role in responses to the COVID pandemic oh okay great well you know we would we would construe ableism not just as as prejudice against people with disabilities but we would think about it more broadly as the idea that those who are biologically atypical within society being those who are not white European male heterosexual able-bodied and Christian and so forth um are those who are have lesser value and ought to have lesser access to resources within society be valued less than those of others I think we saw it front and center with Trump's pronouncement on don't worry about COVID even if it exists it's only the less healthy and the elders who will die from it I mean those were his statements gruesome as they are I think we we see it in the activities of various groups who fit within the ableist category who are running around without regard for others no masks no protections it's my choice well yeah but we do live in a society together I think it's been very clear all the cracks in society that are coming to the front could in some way be tied back to ableism and we could make disability justice arguments about why they're wrong and why they ought to be thought of differently okay I don't see any more questions and we are almost at time so we are going to conclude here professor Stein thank you so very much for for giving this very enlightening talk today I think that me that it was it was really very helpful to hear you talk and to clarify a lot of the questions that we had thank you so very much for that and thank you to the members of the audience who have attended today you will be able to find the the talk on the Shirley School of Law's YouTube channel should you want to rewatch it or share it and we're going to have the next speaker series seminar on November 20 so hopefully you're going to be joining us then thank you so much again thank you for having me