WVU‑CED Ability Grand Rounds Webinar
Tuesday, November 9, 2021
2:00 p.m. EST ‑ 3:00 p.m. EST  
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 Today is Tuesday, November 9, 2021.  This is a test of the captions.  Testing .
	>> COURTNEY LANHAM:  All right.  If you're ready, I'm going to go ahead and let everyone in.  
	>> COURTNEY LANHAM:  All right.  If you're ready, I'm going to go ahead and let everyone in. 
	>> Recording in progress. 
	>> COURTNEY LANHAM:  Hello, welcome to the West Virginia University Center for Excellence in Disabilities, I would like to welcome Scott Landes.  As well as, tissue a research affiliate for the center of aging and policy studies and the research affiliate for the public health and promotion.
	I'm going to go ahead and hand it off to you.  Thank you so much for joining us. 
	>> SCOTT LANDES:  Thank you Courtney and thank you all for coming today.  Is anyone from fair month?  Anybody at all?  My grandparents and parents are from fair month so I'm partial to your area of the country.
	Anybody ever opinion to the wade tech pool in fair month?  My grandparents house was right behind it.  Wade tech pool is about the only good thing to go to in fair month.
	I remember my grandmother calling me up, and she was like, oh, Scott David, we got a Dominos pizza here.  Then a week or two later, she was Dominos is gone, fell into the ground.  I guess one of those mines.
	I wish I could be with you all, but I'm excited to get to talk to you today.
	I do not see well.  So don't chat questions.  If you have questions, just interrupt me.  I'm a teacher, I'm used to being interrupted so I don't have a problem with that.  As we go through if there's anything you want to ask about, just go ahead and do so.
	I want to cover a broad overview of the research that I do on folks with intellectual and developmental disability related to mortality outcomes.
	My background is I spent the first ten years of my career in the Atlanta area doing direct services, primarily with young black men with intellectual disability and HIV so I cut my teeth in that world and a lot of the time was spent advocating for health services because it was a time period in the 80s and 90s when medical doctors were not willing to provide care for people with intellectual disability who had HIV.  They were trying to make the argument that they couldn't understand the medical regimen so it wasn't worth their while, so a lot of our time was spent trying to address that.
	Whether I got into the academic world, I continued this concern with health disparities and specifically mortality disparities.  I'll give an overview and if you have questions, feel free to ask as we go through.
	All right.  If somebody can give me a thumbs up if you've got my screen, good.  Okay.  Great.
	All right.  So we know that there's been a lot of improvement over the past 50 years for people with intellectual and developmental disability regarding longevity.  So back in the 30s, documentation tells us the average lifespan was 15 to 22 years for someone with an intellectual disability.  By the time we reached the 80s and 90s, this increased to 50 or 60 years.
	And improvements are typically attributed to a few things.  Improvements in healthcare access that led to better health among this population.  So less spread of contagious diseases, until the pandemic, and also, there has been less chronic comorbidities in this population, not necessarily because of better health behaviors and health outcomes because folks did not live long enough.  And so we kind of ‑‑ the age of death is kind of a midpoint where you look past 60 and you're going to develop the cancer and vascular issues, so we don't see as much of that, but the main thing was the institutionalization.
	For a while, a few scholars were trying to argue that deinstitutionalization led to poorer health outcomes and I think in the early days, I was part of a process in Georgia when we were shutting down some institutions, and that was an issue because there were so few medical providers willing or cared to help folks with intellectual disability, but over time, health outcomes are much better in community care than in institutional settings, just because of increased freedom and better quality of life.
	The questions that I've always had and that I look in the studies I'm going to show you is a few things, one, whether this improvement in age of death has continued over time, or is 60 the top end?  Is that as far as people are going to be able to live within this population?  
	And the second thing that wasn't looked at prior in research is whether this applies to all disabilities.  Lot of times they group together people with intellectual disability and Down Syndrome or cerebral palsy and so we tried to pull those apart to see if there's differences across disability types.
	So I'm going to show you a few graphs that document the age of debt among different disability statuses.  So the first one is, this is a group with no intellectual or developmental disabilities.  So this is average between males and female.  Females go to go females right now are 82 to 83, for males it's between 268 and 70.
	So from what we have seen over time is a slight improvement in the average age of death among folks without an intellectual or developmental disability.
	Obviously we're going to see something different here in 2020 when we get the new data from COVID, this was the preCOVID trend where we were seeing improvement in the aim of death.
	And we are seeing the same thing in people with developmental disability.  In 05, we saw an increase in 17, so a gain of about three years, which is remarkable, when you look at this general population gain, you're talking about less than a year so to gain three years is really something.
	What I've got documented here at the top is this is the disparity.  So in 2005, there was an 11 year gap between adults with and without intellectual disability and that has reduced to nine years, which is really, again, marked improvement so something is going well as far as the healthcare services, access and treatment for folks with intellectual disability that's continuing to improve lifespan.
	Still improvement for people with Down Syndrome, but what you notice most explicitly is the real severe drop in longevity.  That we've gone from 72 years to 63 years and now for adults with Down Syndrome, average age of death in '05 was 40 years, in 20 17 was 56.8 years.  So again we're seeing improvement of about two and a half years over the course of the study, but the disparity that I've got documented up here is much greater.
	It has gone from 17 in six years to 15.seven years.and the last group we will see drop again is adults with cerebral palsy and so about three years lower than adults with Down Syndrome.  So we go from 50 years in 05 to 53.8 years in 2017.  Again, across all three disability statuses we're seeing a two and a half to three year improvement in age of death over this time period, which is much greater than we're seeing in the general population, so that is the real positive news here, is that prior to the pandemic something was going really well as far as the services that folks were receiving were really improving the long Jeff fee among these populations.
	However, there still was this large gap.  And so that's the question that I have when I'm looking at this is, is this the top end?  Is this as far as people with intellectual and developmental disability can go regarding longevity, or, is this disparity I have documented up here, are something that we can continue to reduce.
	Can we get it so that people with intellectual disability are living longer.  Before we get to that, I made a couple more slides.  This is not in my papers, but I thought you would want to see this.
	This is the disparity, the difference in age of death between the general population and those with disability, across all US states and as you see, the average disparity is right under 15 years.  West Virginia is doing quite well.  Average disparity is around 12 years.
	The best state is Vermont as far as longevity fore folks with intellectual disability.  You see a first bump up from Montana, New Hampshire around Maine and then West Virginia is around the second bump with Tennessee and Massachusetts.  If you have an intellectual disability, California is one of the worst states to live as far as this disparity, you're going to see that consistently across these graphs.
	Here is the data for Down Syndrome.  Again West Virginia doing quite well.  Here is the average, right around 19 years.  The disparity for West Virginia is about 17 years, about two years less.
	Now, part of this is because adults with intellectual disabilities are living a bit longer in West Virginia than they are across the US, but the other piece of this that's reducing this disparity is adults without intellectual disability in West Virginia are living less years than adults in the general population across the entire US, so the disparity shrinks because you have movement on both ends and then if you see cerebral palsy, again, West Virginia is on the lower end, meaning that across your state, adults with intellectual disability, Down Syndrome and cerebral palsy are doing better, as far as age of death difference than the overall US average.  Like I say, California and Nevada, on the top end of this consist continually and on the bottom end we see Maine, Vermont and some of the northeastern states.
	So like I said, my most pressing question is to try to dig down and see if we can understand whether this disparity is changeable.  Can we continue to reduce it further or is this ‑‑ is there a chance that this is about as far as people can get?
And so the first place that we have looked in order to try to understand this is causes of death.  If someone dies ‑‑ I've got audio.  Somebody's cooking, it sounds like, if you don't mind muting your audio.
	When someone dies in the US, the certifier shows up.  The death certificate records the primary causes of death, in addition to all the other health conditions that were present at the time of death.
	And these are done sequentially so that we can have an understanding of the disease or illness that started the train of events that led to the person's death and then sequentially, all the subsequent health conditions that unfolded that led to the immediate cause of death.
	So, for instance, if someone died of a heart attack, that's not going to be their underlying cause of death.  That's going to be their immediate cause of death.  But their heart attack was caused by, they had some type of ischemic heart disease for a long period, maybe preceding that, they had hypertension or diabetes.  So you had this sequential accounting or the underlying cause of death is supposed to be the disease or illness that got the process started.
	It might have started to two days ago with an infection like sepsis, it might have started a month ago or year ago to two years ago.  So that helps us know what the is precipitating event that causes the person to die.
	So when in the public health realm, at death mortal outcomes are typically focusing on the underlying cause of death.  That's what's rated by the CDC every year when you see news reports on causes of death in the US, they are a talking about the underlying cause of death, it's the best way to get an idea of premature mortality trends and also to look at prevention so that we can increase age of death.
	So my big question is whether these trends are similar or different for people with ‑‑ without intellectual and developmental disability.
	One caveat before I jump into this data to show you is that there is a really bad habit among people who certify death certificates in this country.  So you've got someone who has been in the hospital and they've died and the physician or the nurse practitioner, whoever it is that's certifying the death certificate, meaning the person recording the cause of death, what they're supposed to do is identify the disease or illness that caused the death of the person.
	What happens a lot in this country and it's not just here, we see it in England and Scotland and Germany, as well, is that these certifiers will put the disability as the cause of death, so maybe you had a person with Down Syndrome who had aphagia and because of that they developed pneumonitis and they died from that whole process of having trouble swallowing that led to the infections and pneumonia.
	But what the certifier often would do is, instead of identifying these respiratory related diseases as the cause of death, they'll then go and put, well he really died because he had Down Syndrome or they really died because they had cerebral palsy.  The.
	Well what we know is these are disability statuses, these are not diseases or illnesses.  They're conditions, lifelong conditions and yes, people with intellectual and developmental disability have higher prevalence of certain diseases.
	This is especially the case, kid a Down Syndrome is much more likely to have Alzheimer's disease, but it's not the cause of death.
	As soon as a certifier puts the disability as the cause of death, you more or less have taken that case out of the whole system because we don't know just on basic public health information why the person died.  Down Syndrome is not the killer.  They died from something else, pneumonia, heart disease, diabetes, something like that.
	The second reason that it's really just not a good idea is because it's highly disrespectful.  I know there were many times, like I said, I was working with folks with HIV who, I'd be with the family at the time of death in the hospital and afterwards, visiting their home to help them with the insurance policies on their loved one that had just died who had intellectual disability, in order, you have to get death certificate from the funeral home in order to file claims and they get this death certificate and it would say cause of death, intellectual disability and it was like a slap in the face to these families.
	They'd say, you know, we spent our whole life trying to get the world to understand that the disability doesn't define my son or daughter, and here the last word from the state is the disability defines, you know, their entire life and especially their cause of death.
	So it's problematic from a public health perspective, I think it's problematic from a moral perspective and it's disrespectful to these families and individuals.
	It also obscures causes of death for this population.  So this occurs on 26 percent of death certificates for adults with intellectual disability and 69 and 50 percent for adults with Down Syndrome and cerebral palsy respectively.  So this is highly problematic, it's obscuring causes of death for these populations.
	Specifically, what it is hiding are preventable causes of death like pneumonia and the one that is disturbing to me is accidental choking.  Quite a few of these death certificates that are inaccurately reporting the disability as a cause of death, if you go into the death certificate and revise it to identify the cause of death, it's accidental choking and that is the type of thing that is highly preventable and it should not be obscured by saying oh, they choked, because they put something in their mouth because they had a disability.  So it's something we've tried to bring attention to in order to see if we can get not only certifiers to change this process, but the CDC to change their coding scheme.
	In addition to it just being uninformative, there's also some concerns that we've uncovered, we know that it happens, this inaccurate reporting, in times of uncertainty, when a physician or a nurse practitioner, whoever is certifying the death certificate maybe doesn't know as much about the disability, or they just don't know a lot about the decedent in front of them.  They couldn't have a good medical history on the person.
	Also, due to what I'm talking about, where people are equating disability as disease, which is it is not, the other concerning thing is that we're seeing racial ethic disparities in this occurrence.  So folks who are black and who are Hispanic are more likely to have their Down Syndrome or cerebral palsy reported as their cause of death on the death certificate than folks who are white and so we've got a real racial ethnic disparity going on.
	So I won't chase that rabbit any more.  Just to let you know when you're dealing with death certificates on this population, you have to do corrections.  You've got to identify those death certificates that have inaccurately reported the disability as the cause of death, and then go through a process and I work with a physician team to do so, of revising the death certificate to identify the actual cause of death outside of the disability.  So the data that I am going to show you is actually after this reinvitation, so that we've been ‑‑ we can capture the entire population and don't miss those cases that were reported incorrectly.
	All right.  Let's look at causes of death.  And so this is in the US overall.  This light gray light blue bar is adults with no intellectual or developmental disability.  In this figure, the orange bar is adults with intellectual disability.  So if we just focus on the orange bars first, you'll see that the most prevalent cause of death is heart disease, for both groups.  But for folks with intellectual disability, it's heart disease, then pneumonitis, pneumonitis many of you know is long term ‑‑ infection of the lungs due to a long term problems with pneumonia, flu like symptoms and respiratory related.
	After that influenza, then pneumonia, cancer, Alzheimer's, then accidental choking, and respiratory failure.
	In the general population, it's heart disease, cancer and AD is third.  What's missing for the general population in between here are some other diseases that are not as prominent for adults with intellectual disability, so the thing that I want you to notice is the disparity.
	So although heart disease is the main cause of death, it's about 10 percent less prevalence rate is about 10 percent less in those with intellectual disability.  Cancer, enough lower rate of cancer related deaths among adults with intellectual disability.
	I think it's important to note that most cancers are diagnosed post age 65 and as we saw earlier, most adults with intellectual disability are dying around 61 or 62.  So the question remains, is cancer less previous vent within adults with intellectual disability because of something related to physiology gee or is it because this population is not living long enough to actually develop cancer.
	What you do see most prominent is the pneumonitis and the pneumonia.  Mutual higher rates among adults with intellectual disability and these are adjusted for about 24 to 25 times higher.  Which is outrageous.  Accidental choking about 25 times higher.
	The main thing we're looking for in this study is these respiratory related diseases, specifically around swallowing disorders and aphagia, that's what we're seeing across these cases.
	So let me show you West Virginia for the line up, and I'll go back and forth a couple times.  You can see, there's not a whole lot of change.  Heart disease and cancer are a little bit lower for the general population in West Virginia.
	You see accidental choking bump up a little bit for adults with intellectual disability but the pneumonitis is going down by about half.  Cancer is going up a little bit.  Influenza and pneumonia staying about the same, so overall, as far as rank order, there's not substantial differences.
	And again, as with the general population, the big disparities are around the respiratory related disorders, pneumonitis, pneumonia and choking related deaths.
	It's a very different story for adults with Down Syndrome.  The primary cause of death is Alzheimer disease.  We know that adults with Down Syndrome are more likely to develop EPP and the tangles in their brain as early as age 30 and the research tells us by age 50, 99 percent of the population has the brain physiology gee of Alzheimer's, and they are developing it.
	So you might be surprised to see this go 20 percent, but remember, this is not whether Alzheimer disease was present at the time of death, but whether the certifying physician identified it as the underlying cause of death, the thing that led to the final death of the person.
	So Alzheimer's ‑‑ Alzheimer disease.
	So the rate here is five and six times higher if you look at age adjustment in the general population.
	Again I'll show you compared to West Virginia.  Here's US and West Virginia.  You see heart disease go up a bit.  Alzheimer's disease comes down some for both groups but more so for adults with Down Syndrome.
	Influenza and pneumonia stays about the same and the pneumonitis, again is reducing by about half, which I don't have a reason for this.  I've not been able to look into this, but we see this now for both ‑‑ this should be ‑‑ you know what?  I was on the wrong slide, wasn't I?
	Here we go.  I was going intellectual disability, my bad.  Down Syndrome.  AD comes down, let's look at the pneumonitis.  Yeah, it goes down by about half again.  Again, I don't know why.  The.
	And then cerebral palsy.  The so we've got much lower prevalence rates, again as we did with intellectual disability for Alzheimer's dementia.  Heart disease is high, but you see influenza, pneumonia and pneumonitis as leading causes, well second, much higher rates than we saw among the previous two disabilities stages and we know, cerebral palsy patients are much more likely to have swallowing disorders and are more susceptible to getting pneumonia.  Accidental choking is about the same level.
	And again compared to West Virginia, this is a little bit different than the prior two.  We see heart disease among adults with cerebral palsy increasing, about 4 percent.  Influenza, pneumonia going up a little bit, but the main difference is really in this heart disease that goes up here, whereas an intellectual disability and Down Syndrome it reduced a little bit over time.
	So just to give a broad summary, we've seen improvements in age of death, but there still are pretty standing disparities.  Nine years for adults with intellectual disability, 15 years Down Syndrome, 17 years adults with cerebral palsy and as far as dying younger than the general population.
	So going through these causes of death, the most prominent factor that is preventable is pneumonia and pneumonitis.  These respiratory related diseases.  And then also the accidental choking.
	There's been a push lately within some of the academic literature and I don't know that it made it to services, I hope it has, to give increased emphasis to swallowing hygiene.  To the composition of foods that are being served for meals, for folks that are receiving services, making sure that food is cut into small enough portions, and also to try to help folks with intellectual and developmental disability as much as possible learn to pace eating to chew, mast indicate before they swallow, with the theory being that many of these cases of accidental choking for long term pneumonitis could be prevented if we can prevent the frequent occurrence of choking during mealtime.
	So hopefully, that's made it to service related level, I don't know if all have seen that across the state or not, but that is the biggest take away, I think from the studies that we are ‑‑ have put out here, is that we need to be putting more effort into reducing these respiratory related disorders, especially preventable ones.
	The other thing, and this is what I think is most disconcerting is that many primary care physicians that are providing care for adults with intellectual disability, as you know, as well, have not been properly trained.
	Not only as far as communication in order to make sure they're providing the best care for adults with intellectual and developmental disability, but also regarding these comorbidity because any physician providing care for an adult with one of these disability statuses should be giving primary attention to respiratory related disorders, to lung capacity and infections, but also to swallowing, making sure the individual and caregivers are having appropriate training and reminders about this.
	There been so recent publications at Harvard about physicians simply assuming that because the person has a disability they're going to have worse health.  There's just no way around it.
	So what we're really trying to do is push back and say, no, that doesn't have to be the case.  A disability is not equate today poor health.  It only leads to poor health if the medical care and the care is not appropriate in order to account for those disease patterns that are more prominent or those preventable diseases that actually can be addressed through better care or better attention to specific concerns.
	The big question that's hanging out there is COVID and we're all waiting for the CDC to finally release the 2020 data.  The CDC typically would have released it by now, but they seem to be hanging on to it longer because they want to play with it themselves before they release it.  So once they release data we'll be able to see what's going on, but I want to briefly go through some of our early analysis on COVID and I'm sure you're seeing similar things.
	I don't have data from West Virginia, but we've been able to look across the US at some different data sources.  We were concerned going into the pandemic because we're talking about a vulnerable health population.  We know a percentage are going to live in ‑‑ [muffled audio] ‑‑ 16 to 20 percent, which if you think about adults with ‑‑ that are 65 and older, only 6 percent of that population live in nursing homes, primary care and 16 to 20 percent, much more disproportionate when we compare to the general population.
	And especially these respiratory related disease deaths are much higher in this population.  Their expectation going into the pandemic was that we would see the same thing with COVID‑19.
	Early evidence from our studies are ‑‑ there was a higher case fatality rate, especially at younger ages for adults with intellectual disability, case fatality being the rate of death among those people diagnosed with COVID‑19.
	We confirmed data from New York State is that this is especially the case for adults living in group homes, which, in my mind makes total sense because I don't know what it's like in West Virginia, but in New York State you can have up to 15 people in a home, so if you count 15 residents plus a staff rotation of 20 to 25 people, you're talking about 40 people in a shared setting during the course of a week.  Many times with the group home staff working second and third jobs, and so especially at the beginning of the pandemic, where there was just extreme spread of COVID‑19 across the group homes in our state.
	So we see a higher case rate, but we saw case fatality rates that were outrageously and two and three times the general population, especially from the period around March to November of 2020.  Then we started to see a drop, that was about the time in our state where the state clamped down on visitation and stuff like that.
	What we were able to confirm in California data is that there is a real difference between folks living in group homes and those living in their family or own home.  What we saw in California is for adults with intellectual and developmental disability living with their parents or with a roommate or partner or spouse, actually doing just as well as the general population.  We were seeing it was only those living in these group homes and especially if you were receiving nursing care, so in an ICF or some type of facility that provided either 12 hour or 24 hours nursing care, which would indicate higher comorbidities.
	And then we find the last report on the case fatality rate so we were able to look at 12 states, well, 11 states plus DC and a similar pattern across all 12.
	Folks living in group homes really went not faring well during the pandemic.  People in their own home or a family home were doing much better.  The so it really speaks to the evidence, that if we can, as much as possible, it's going to be necessary to shift over time as much as we can away from these group settings and more towards independent care settings or support.
	The big questions that we had lingering arched we addressed in our last study is whether the predictors of COVID cases and COVID deaths are similar, different for adults with intellectual disability and developmental disability in the general population.
	The CDC tells us, cancer, chronic kidney disease, obesity, smoking, diabetes, are predictors in addition to age.
	We were wondering about the type of residence, number of residents and disabilities status.
	For this study we used data from AHRC in New York City.  It's a large provider that serves 25,000 people, total, across the city.  During the course of the pandemic they had 543 people in residential settings.  Spanning from ICFs to supported living, where it's just you in your apartment and staff is dropping in.
	So we looked at their data from March through October of 2020 to look at COVID positive status and death.  And as you would expect, increased age was associated with higher likelihood of actually being diagnosed with COVID,  as well as number of residents.  The residentship was not severe here, but it was significant where if you lived in a setting with more residents, more likely to contract COVID which again makes sense on both cases.
	And then here's some other characteristics.  Sex didn't really predict.  I think minority status did predict, but in the opposite direction of what we expected, where in the sample that we have, the racial ethnic my nor tease were less likely to develop COVID.
	Type of residence mattered.  Folks in ICF were much more likely to be COVID positive.  It was not the case in supervisor supported where it actually went the other direction.
	The big predictor was Down Syndrome where adults request Down Syndrome were about two and a half times more likely to be COVID positive and then for the comorbidities of cancer, chronic kidney disease and COPD.
	That's by variable.  When we looked at multi variable status to look for off sets for age, the only predictors, like the general population, older ‑‑ and this looks small, but this is for each year increase in age, so this grows quite a bit when you get to older adults.
	Age was a big predictor of COVID status, also number of residents, again, this is by individual count, so it grows when you get up to 15 residence.  These were two predictors.
	Those and the supervised settings were less likely to get COVID than those in ICF.
	And then the Down Syndrome was three and a half times more likely, folks with Down Syndrome to developed COVID and then folks with chronic kidney disease.
	We then turned our attention to mortality and really the story line here is heart disease that once someone developed COVID, if you didn't adjust for age, it looked like cancer, COPD and heart disease all predicted whether you were going to die from COVID or not.  But once we adjusted for age, it really was all about half disease, close to half of those who died in this setting in New York City that we were looking at had heart disease prior to the pandemic.  And that's actually the primary predictor.  Age was close, but even once you accounted for heart disease, age was not a predictor.
	And so looking at COVID status, we found similar predictors, heart disease, cancer, COPD, but the really unique ones are he number of residence and Down Syndrome.
	What I often say to people is there's only one of these that you can change.  Once you have heart disease, cancers, chronic kidney disease, COPD and Down Syndrome, these are lifetime diseases and a lifetime disability so it's note likely we're going to be able to change any of these.  You could maybe improve health treatment and outcomes for people who have these specific diseases, we can change this and so to me this is one of the biggest take aways from these studies we've been doing.
	If we want to improve outcomes for people with intellectual disability and developmental disability, during a pandemic, yes, but also during flu season, during any type of time period where we're seeing a spread of respiratory related diseases we're going to have to start addressing number of residents.
	Like I said in this state, it's 15.  The State's cutting the budget across the boards.  The scuttlebutt is that they're going to jack up residence and take it up to 20 to allow 20 per home and what we're trying to argue for is that it's going to mean death.  I mean more people are going to die with intellectual and developmental disability, not just during the pandemic but during any subsequent outbreaks of some type of contagious viruses or even during flu season if we continue to jack up these number of residence.
	What the data is showing us that people with intellectual disability and developmental disability are more likely to die of respiratory related diseases, in settings where there's more residence, higher interaction and if we want to improve, we're going to have to bring this number down.
	Won't talk about that as much about vaccine hesitance.  One of the biggest problems and I was hoping to see if you had insight on this is is that states are not sharing data.
	We know that, we know that 48 out of the 50 states including West Virginia have been collecting data on COVID for people getting Medicaid waivers.  And today only 12 states have been willing to share the data and what we've been arguing is that this is unacceptable.  That if we really want to improve outcomes, the data is going to have to be trans parents so experts can look at it, say here's what's going on and here's what we can do in order to address its concerns that we're seeing duration and post pandemic.
	In addition, HHS, to date, has not been willing to require states to report data.  There's been some movement in Congress to get HHS to do so but to date it's not happened, but my hope is they'll actually turn the corner on that.
	The big question, like I said, is not going to be answered until we get the CDC data, because across the board, disability or not, we're going to see probably an extreme dip in age of death and all populations because of COVID and a real shift in primary causes of death with COVID going up towards the top is what we're assuming based on the early data that we've seen.
	The question is going to be a couple things,  number one, do we see the same patterns among adults with and without intellectual disability and developmental disability across the US, sore is there a chance the higher rates of death in these group homes is going to make it so the effect of the pandemic on aged death is much more severe for folks with a disability.  That's what our preliminary evidence is saying, we're going to have so confirm that when we get the CDC data.
	The second thing is going to be nonCOVID related deaths, whether we're seeing excess deaths that aren't COVID related, simply because people had less interaction with their physicians and less access to healthcare during the past 18 months.
	My wife works on the spinal cord injury unit at the VA medical center here in town and I know in their case, they saw very few deaths during COVID from COVID.
	But since things have opened back up, they have had 8 to ten deaths every week for the past 8 to ten weeks.  The reason being that many of these veterans did not come in for their annual evaluation during the COVID time period because they were concerned and because they didn't come in, there were some wounds that were missed, some respiratory infections that were missed, so people were dying from preventable causes of death within the population she serves, not from COVID, but because, secondary to COVID because they didn't receive the care they needed during the pandemic.
	So the question is going to be when we finally get this data, do we see many excess deaths from heart disease, pneumonia, during this past year and a half, due to less access to medical care and possibly less monitoring, not only by agencies, but by states.
	All right.  I'm going to stop here.  See if there's any questions. 
	>> I have a question.  Why are doctors not recognizing that the Down Syndrome and all that, they're actually dying from a disease, is a a symptom itself, why are they not recording that?
	>> SCOTT LANDES:  That's a good question.  You know, from the interviewing we've done, a lot of these physicians received no training on intellectual disability & developmental disability in their training and very little once they started practice.
	And within the medical community, there still is that older ‑‑ old school idea that disabilities are health problems and that's not just developmental disabilities, that's spinal cord injuries and other types of physical disabilities, everything is viewed through that medical perspective.
	And so there just has not been the same differentiation between health and disability among medical practitioners that we've seen within the disability community among advocates and care providers.
	In states and also in medical facilities where you have increased training, physicians are much less likely to do this.  And so our contention is really as simply about education and training.  They're just ‑‑ there are that many medical providers who have not had the exposure they need in order to make the simple conclusion that we all know is true, the disability and health are distinct.  Might be interrelated, may influence each other, but are distinct, disability is not a disease.
	I think there's movement towards understanding, but there's just a long way to go.  The last survey shows that there are only 6 medical schools across the US that provide any training in disability, that's unacceptable. But that's what I think leads to this..
	>> That's pathetic.
	>> It really is.
	>> A question was asked if a copy of this PowerPoint could be made available to us.
	>> SCOTT LANDES:  Why yes, I added some and they can distribute it.
	>> Great.  Thank you. 
	>> Are there any other questions regarding the material or any follow‑up questions regarding the response to the question that was just asked?
	>> I have a question related to the ‑‑ the slide where you show the ratio, I just wanted to make sure I understood you correctly.  The add ratio where it indicated that supervised settings, uh, yeah.  Okay.  So supervised settings that you say in there that the incidence of positive COVID was low.  I just want to verify that, as well as in the ICF.  What tissue what the ‑‑ what was the comment about the ICF setting?
	>> SCOTT LANDES:  Yeah, so in this graphic, good question, ICF is our reference category so I'm comparing supervise the to ICF and those in the supervised group homes had lower COVID case ‑‑ I mean supervised, not the group homes.  I'm sorry.
	Make sure I've got the wrong ‑‑ yes.  The supervise ‑‑ I always mix this up.  Supervised with the group home was the apartment.  So the supervised group homes had lower spreads of COVID than the ICF setting, but for this provider in New York City.  The spread was worse in ICFs, which in my mind totally made sense because a lot of people they had in their ICF settings had preexisting respiratory conditions and need for very intimate face to face care, that in the early part of the pandemic when PPE was not available and they had to beg to get bandanas to tie around their faces, the spread was high.
	It was still higher than the general population, but less than the ICF.
	>> I guess I found that telling to a point.  I'll be honest and say that I'm nurse and I've done a lot of work through my years in developmental disability.
	And I appreciate the comments about the group home settings, because it's inherent in some sense that when you're around a lot of people, with whom it can be challenging to explain physical things, to explain coughing and sneezing and washing your hands, it can be challenging at times to explain those things.
	But I also recognize that in the grand scheme of things we're dealing with population that at the outset of COVID, there was very little regard for their needs of this population.  So we were extremely low, extremely low on the totem pole when it came to any kind of education, any kind of support any kind of access to PPE.  Recognition by public health departments that we were out here.  And so I think you know, there is a lot of dynamics that play into the picture that you know, I ‑‑ I think ‑‑ I'm a little hesitant to just kind of all ‑‑ to just throw it all in the idea that it's the ‑‑ [muffled audio] ‑‑ setting that did it.  I can it's the whole picture about developmental disability and how folks are treated and I think it's a larger issue and there are many smaller issues, but it's a larger issue there that still needs to happen in terms of changing the paradigm of thinking in the society about the value of people with developmental disability and what they can contribute within their communities and so on.
	So it is a huge bucket, really, but I appreciate the breakdown that you were able to achieve there.  The because I do think that if we do have group settings, that there's something to be said for supervised group settings, based on ‑‑ [muffled audio] ‑‑ understood from your data there?  That we don't necessarily have good supervision of PSP and direct caregivers in these settings and they come from a variety of perspectives and there's been challenges with regard to just trying to have them appreciate vaccination and that's been kind of a tough issue.
	So I just kind of think about all these little factors that play into that whole big COVID picture, but I do think that ‑‑ and I don't want ‑‑ I guess I don't want to sound too biased here, but I do think there's something that nursing can bring to these settings that is not always appreciated because there's still this historical stigma about the larger institutions and nurses kind of get equated with that.
	When, in fact, we, as nurses can bring a perspective of health and health promotion into the picture, but again, there's so many dynamics, there's the politics of it, the capacity to pay nurses, all these kind of things that play into whether it happens or not.  But I just kind of throw that all out there because it's such a complex issue.
	>> SCOTT LANDES:  Yes.
	>> And not maybe as black and white as we might think ‑‑ to be.
	>> And I ‑‑
	>> Well thank you.  I just wanted to say, I thank you for your presentation, I appreciate your break down of the data here, trying to be as accurate as you can, because I've seen death certificates, too, where they think it's the disability that caused them to die, when in fact it was really other factors.  Is to thank you for your work.
	>> SCOTT LANDES:  And I don't disagree with you.  I actually spent three years working for an agency that we had 20 group homes across the state of Georgia.  I think group homes can be done very well and there are some, I mean, I am in close contact with quite a few across the country that had very low outbreaks for COVID‑19 because for whatever reason they were able to get PPE earlier and prioritization.
	I think in a stated like New York it becomes problematic when we're reaching 15 to 20 residents in a home and you're doing eight hour staff shifts and you're got 25 and 30 staff coming.  It's like a nursing home, there's going to be no way that you can truly prevent spread.
	And I think the other factor, and you were talking about it being complex and it is, the low wage for DSPs is forcing them to go for second and third jobs.  So then you can't control ‑‑ I know in the New York City area, the CEO was saying to me, my biggest problem that three‑quarters of my DSPs do second shift night shifts at LaGuardia, so as COVID was coming to the country, they were bringing it straight into my home.
	I think the other concern we've really had here, it made the news for nursing homes, not group homes, is policy wide our former governor chose at that make some decisions that covered up the amount of cases and deaths we were seeing in nursing homes, but it was also the case with the group homes, where the state refused to share the data and the state also made a decision that when someone was COVID positive in a hospital setting, being discharged back to a home, that they were ‑‑ they required the group home to take the person back in, but refused to provide them extra money to provide quarantine wards so you're just bringing somebody into the room with three or four roommates and boon everybody had COVID so I agree with you, the disrespect of people with intellectual disability have received is just as at fault during the pandemic as anything else we see going on.  I think you're right..
	>> Thank you again for your work.  Appreciate it.
	>> SCOTT LANDES:  Yeah.  Thank you.  Other questions?
My big question is whether the WVU are staying in the big 12 or not.  I'm from the south.  We'd love to have them in the SEC, wow do you want to keep traveling to Texas every year?  No one is a WVU than.  That's not good.
	>> I'm all for moving, to you new conference but I'm an attorney with disability rights of West Virginia and as an advocate and somebody outside of being directly inside the medical, you know, system, how do we make this happen, how do we get doctors who are ‑‑ tend to be very sure about what they know to be true, how do we get them trained on this, what can people as advocates do to support and encourage that training.  I mean what can we do about this, basically is my bottom line question.
	>> SCOTT LANDES:  You know, the movement that we're seeing is that finally, folks with disability are getting into med school, self advocates.  That's been ‑‑ these programs that have training, if you dig into them, it's a lot of times because they ended up having students three or four years ago with some type of physical disability who was willing to speak up and raise awareness and say ‑‑ well, the difficulty then peculiars about physical disability first and they don't get to develop mental disability until later, but that's the two strategies that we have found most helpful.
	One is if you can get a med student that speaks out, but even better is if you can get an ally on the staff.  And so like at our medicine school here in southbound, a SUNY school, one of my primary collaborators, has been doing research object this for years and she doesn't let a staff meeting pass where she's asking the question, well what about developmental disability, what does it mean for our folks that have developmental disability.
	And unless ‑‑ I mean unless you have an administrator that's going to signed on bored, it takes that vocal staff who is willing to be a pain in the rear to say we've got to start including this.
	I think that's the front  end.  The thing I cannot get a handle on of how we can address this for people who are done with med school, because all the attention goes to the training, but once I finish practice,s what do you do.  The because AMA is paying no attention to this.  They act like they don't care.
	And the doctors that are attentive, they treat it like their developmental disability specialist so we don't have anything to do with you, you treat yours, we'll treat ours.
	I don't know the answer to that and I don't know what is going to shift it, but to me, the AMA is the big dog that's going to have to be addressed.  We were pleased that we were finally able to get one of these COVID articles in, because they don't publish on developmental disability, so I don't know. 
	>> I would just like to add that I think it's not just a doctors, you know, as a social worker, there's not good education around disabilities in that area.  I think it's something that's just barely glossed over across the board in most fields and that's an issue, I think.
	>> SCOTT LANDES:  I think you're right.  I think across the board. 
	>> I'd like to ‑‑ oh, excuse me.
	>> Oh, no.  Go ahead.
	>> I'd like to share that there is a professional organization called the American Academy of Developmental Medicine and Dentistry and they have been really trying to push the medical health education for several years now.
	They are working on a curriculum, one of the challenges in the medical schools is just trying to get it in the curriculum only because the curriculum already is so packed.
	So thinking of different ways to integrate it, and in a sense of inclusion, in the sense that instead of having this is the course I developed and ‑‑ it's more like patients that you encounter and giving the student the opportunity to be exposed to people with disabilities in the course of say a med surgical patient or a psychiatric patient or something of that nature so it's not like ‑‑ it's a ‑‑ it's a ‑‑ again we don't necessarily want to encourage separation.  We want to encourage inclusion, so the idea is, here's the span of patients that you might see, and think about how do we encourage, or incorporate people with disabilities into that education.  There is such a thing as a standardized patient approach, where people with disabilities have been willing to volunteer and medical school actually had this said up, where you can be a patient, and ideally, if you don't necessarily want a nondisabled person, or you want a typical person to portray a person with a disability, ideally it's somebody with a disability that is that patient and then the student gets this real interaction with a person with a disability within the context of their learning experience that's already on the curriculum.  You don't have to create anything new.  It's already embedded in the curriculum.  So that's different things we're trying to do in the healthcare education realm and trying to do that in nursing, as well, and get it integrated, as much as possible, but admittedly, it's been many, many years.  It continues to be a challenge, but I think in many ways COVID has opened the door to having these kind of discussion because we're recognizing these disparities that we maybe didn't pay much attention to before and ‑‑ and we're just having to ‑‑ to ‑‑ to take advantage of this opportunity to have these kind of discussions. 
	>> SCOTT LANDES:  There's a Lisa meeks at Michigan and Johns Hopkins, part of a organization called dots for disability, because they both have disability, are M.D.s and saying you have to have this training.  I think the real chang is going to be, the focus is on physical disability and so it just ‑‑ the main movements are really not even ‑‑ they're just addressing physical disability, not developmental, that's going to be the concern because you're not going to have medicine students with a intellectually disabled person speak for themselves, whereas nurses can, so how do we get that advocacy through the door.  This is the real challenge.
	>> Okay.  Well I know that we are right ‑‑ a few minutes after.  So thank you so much for your time with us.  If anybody has any additional questions, feel free to send them to us and we can send them over.  He can answer them.  I put a link in the chat if you take it home.  Just make sure you fill that out.  It's an evaluation on your experience today, so thank you again very much for your expertise and your time.
	>> SCOTT LANDES:  Thank you all for attending.  Buy buy.