Thank you to APM&R for the opportunity to have this important conversation. And we want to keep in mind today that what we're trying to do is to have a conversation. So we thank everyone for coming and for bearing with us. You know, sometimes Zoom is a little difficult, but we're going to do our best to have a really engaging conversation today. So to that end, I just want to introduce some ground rules to kind of guide our conversation. So in the interest of time, we're planning to have our introductions on the slide. So we won't be reading aloud everyone's sort of names and titles and affiliations, but you'll be able to see that information on the slide. We also have chat off during the conversation so that we can have sort of active listening to our invited guest speakers. We will be able to continue the conversation afterwards, which we'll tell you a little bit more about. We also wanted to start with sort of explaining our lens and sort of why our team decided to have this conversation with you guys. We felt like it was important to have a discussion that is coming from a place of being community engaged. We recognize that our team happens to be pretty heavy on the siblings of somebody with a disability side. So myself, Dr. Schrader, and Proka are siblings, and they are going to be telling you a little bit about their experience. And so we also wanted to make it clear that while our experience is more with intellectual and developmental disability, we are certainly open and support cross-disability efforts. And so we thank everyone that's gathered today to have a conversation that is truly cross-disability. And we also wanted to emphasize that this conversation is meant to be grounded in equity. So we really encourage everyone to be thinking through this, who is trying to get into the room but can't? One of the groups that we realized that has been pretty absent from a lot of conversations about medical education is learners themselves. And so today, we're really focusing on intentionally centering our learners. And so we plan to have additional conversations in the future to center other key groups. We recognize that there are many. And we also were thinking about this audience as being primarily a physician audience. Thank you to those of you who are here that come from a research background, a community background, different backgrounds. But we sort of tried to structure things aiming at our physician colleagues. And the reason is there's a lot of work to be done. Many hands make light work. And we felt like a good first place for us to start as physicians is with our colleagues. So we hope that this is a first conversation, a beginning, and that we are going to hear as many perspectives as we can in these next 60 minutes. So with that, we'll get started. Just to remember, we will have a web page of resources at the very, very end, which will come up sort of as we keep going. So first, I want to introduce the talk with the first big area we felt like was important to think about, which is how do physicians think about disability? And how might that be helpful? Or how might that be a hindrance? And really, this came up for our team in conversation about the recent Isonia et al. article that I know has been a topic of a lot of discussion. And we took a minute to highlight that this article is discussing health care disparities, which are differences between groups of people in health insurance, access and use of care, and quality of care. There's also health disparities. So just to be familiar with, there's two different terms. They're not exactly synonymous, slight nuance there. But the important part is that both of these are a measure of progress towards achieving health equity. I have the findings here, but the key thing we want people to take away is that potentially biased views among physicians could contribute to persistent health care disparities. And so for that reason, we wanted to emphasize that it's important for all of us to critically think about how we think about disability. Conceptual models of disability are one way to do that. We have those sort of listed here. It's not meant to be an in-depth primer on them, but just to say that we really have to think about sort of how do we understand disability? How do we understand ideology meaning and think about bodily difference? And so I want to go ahead and kick this over to our first group of invited guest speakers. We're really excited to have them here with us today. So I'm going to first open this up to Dr. Turk. So Dr. Turk, if I could ask you, what are your thoughts as far as why does how we think about disability matter? Well, Priya, you and I had this conversation earlier. And for us who have been working with disability, it seems like a no-brainer that it really helps you frame how you want to approach your patient. But as you showed in the models, there are multiple models and everybody has one model or another that's favorite. And then there's argument. So actually, the models can be both a help and a hindrance. And that's a serious issue that we need to think about. The one good thing that it does is that it helps move away from defining disability by diagnosis. There are some important things about diagnosis, but there are some broad issues that need to be addressed. So yes, there are medical issues, but geez, there are social issues. I mean, it's a biopsychosocial. And luckily, the people in the EU where this tension really has been are beginning to recognize this and falling more into line. And we haven't even talked about the International Classification of Functioning, Disability, and Health. Another model, which is good for probably for, at least in my mind, research purposes. But it does help us understand what we're trying to help our patients understand, what their goals are, and then how we can modify what we want for them to do, just like we would any other patient. They need to be engaged in health promotion. They have to exercise. They do need screening for cancers. Might be a little different. In fact, we know it is going to be different. So you don't avoid those things. You have to find a way to be able to modify your environment. So the models sort of help us look at that entire way of trying to support people with disability in their health and in their health care. Absolutely. And could you tell us a little bit? I know we have a lot of learners in the audience today. So if you could talk to us a little bit about how was disability taught to you when you were a medical student? Well, that goes back really a long time. And the dinosaurs just went off the face of the earth when that happened. Although I saw Mike Alexander on there. He's way older. The dinosaurs were there when he was going to school. But I went to Ohio State. It was actually a very exciting place when I was there. It was one of the few places, of course, I had no idea, one of the few places that really did a lot of bringing people with disability into a more typical kind of environment. But only if you were able to get those experiences. So was it taught? No. People really didn't talk about it. If disability came up, it was sort of an oddity. But I was lucky enough that I had some previous experience. I do have third cousin twice removed kind of a thing. But I did a lot of volunteer work, turned out to be with children and adults with disability. I used those opportunities when I was in medical school. So I had a very different view. And it's sort of that self other overlap that really is important. When you've had some experiences in a more typical way, more of the way that we would hope that a younger generation of physicians might experience because of mainstreaming. And that there should have been other children with disability. I don't remember much in my childhood. I was just lucky enough to have some experiences with a next door neighbor, for instance. But it's that self other overlap. And so any opportunity to try to engage in those kinds of things is really very important. So a lot of what people learned about disability when I went to school was kind of what you did on your own and by happenstance. There really was no acknowledgement that people with disability actually survived and led normal lives. Yeah, thank you for your comments. And I certainly agree and hope that, you know, hopefully things are changing just by consequence of inclusion more broadly in society over time. And I next want to ask Dr. Tyler. So Dr. Tyler, your background is family medicine. And I know you were thinking about talking to your residents a little bit about some of their thoughts and some of their background with regards to disability. Do you want to tell us a little bit about that? Sure. I did a little straw poll with my residents in family medicine at the Cleveland Clinic just regarding their experience with physical medicine and rehabilitation as a specialty. Education by physical medicine and rehab specialists. And what I found was they all knew about the specialty. About 20% said that they had received a lecture by a physical medicine and rehabilitation specialist. Nearly all of them had been involved to date in clinical care of a patient who was also receiving care through physical medicine and rehabilitation specialist. About 20% had actually done a rotation with a physiatrist. And about half stated that they had received formal education on conceptual models about disability. So that kind of gives you a sense of what the average family medicine resident experience has been regarding the interface with your field. Thank you for that. That's really helpful. We often as a field wonder, you know, sometimes it feels like no one really knows what we do or what value we bring. And so it's helpful to know whether progress is being made in that area or if it's something we need to work on. One other question I want to ask to you is, I know you've talked to me a little bit about your background and the different sort of types of training that you had. And in that time, how that prepared you or didn't prepare you for the patient population you were then asked to take care of. If you could talk a little bit about that, as well as what were the feelings within your field regarding your choice to sort of dedicate your career to care of that population? You know, so my focus is primary care for individuals with intellectual and other developmental disabilities. And I started out in private, small group, semi-rural practice and began my postgraduate training first in psychiatry at the University of California, Irvine for a year, and then family medicine at Case Western Reserve University. And it was a time when many people with developmental disabilities were being deinstitutionalized from state developmental centers and they happened to settle some of them in my small community and they needed a primary care physician. And sad to say, when I was approached about this, I had to say, despite four years of postgraduate training, I really knew next to nothing about taking care of those with intellectual and developmental disabilities. So for the next several years, I just tried to learn from anyone I could, from direct support professionals, from disabilities professionals, nurses in the disabilities field, psychologists, and was frustrated by the lack of literature, primary care literature about how to take care of people with developmental disabilities. When I finally decided, one way to address it is to actually contribute to that literature. I ended up going to Case Western Reserve and doing two fellowships there to prepare me. But sadly, some academic mentors in family medicine actually actively dissuaded me from considering disabilities as a focus area for an academic career in family medicine. Now, thankfully, I ignored those persuasions to do something else. And I had great support at Case Western Reserve. And then I've had wonderful support at the Cleveland Clinic for my work, but it was a rough start and I had to be determined. Absolutely. Well, we're certainly glad you decided to ignore some advice along the way, as well as appreciate your comments about learning from colleagues, those that are on that interdisciplinary team with you. I'm gonna continue on to sort of the next topic here, but thank you both for your conversation and perspectives on these topics. So moving along, tying things back to health equity. So in that I'm zoning at all article, it's pointed out that these findings about physicians perceptions of patients with disabilities raises questions about ensuring equitable care. So I wanted to just think about that for a moment, highlight again, physician bias as a determinant of healthcare disparities and really thinking about with health equity, it's where everyone has the opportunity to attain their highest level of health. But what if your only choice is to go to see a biased physician? And I think ultimately, that's how all of this ties to equity. There's other implications as well in terms of how we think about disability with regards to research. It affects the questions that we might ask. It affects how we might measure health outcomes. It also affects research methodologies that we use and that we prioritize. What we consider sort of valid ways of knowing. And to that end, what is the importance of lived experience? And so we're going to be exploring some of this in an upcoming health equity supplement in the PM&R Journal. So I just wanted to give a shout out to my colleague, Dr. Molly Fuentes, for more on that to come. Next, I want to talk about teaching. So obviously, the way we think about disability affects how we communicate. It affects the language that we use. So we need to think about how do we communicate to patients with disabilities, about patients with disabilities, as well as to colleagues and to learners. And so speaking of learners, I want to introduce my next colleague, Dr. Shannon Strader. Hi, everybody. My name is Shannon Strader, and I'm a PGY-1 going into PM&R at the University of Louisville next year. And I'm deeply passionate about inclusion and equity, particularly for those with intellectual and developmental disabilities, a.k.a. IDD. I wanted to talk a little bit about my favorite person, my twin sister. My twin sister, Lauren, contracted meningitis from the hospital at 20 days old. She was later diagnosed with cerebral palsy. She could not walk, talk or eat on her own. However, she did not have an intellectual disability. She communicated through her body language and her communication cards. Life with Lauren was the happiest time in my family's life. Lauren was never a burden to us. She was our family's light. She was adventurous, always looking to make someone laugh, and extremely empathetic. One of my favorite memories is when we walked into a grocery store and an older woman looked at her in disgust. Lauren made complete eye contact with her and gave her the biggest smile. She knew exactly what she was doing. Lauren knew perfectly when to fight and when to sit back and just laugh, because sometimes some people will just never get it. Lauren passed away from organ failure in our home when we were eight years old. Whether it was another procedure or after another seizure, watching my twin be in pain hurt me. However, after her death, it has been just as painful to grow up without validation from society that my twin's death was a true loss in my life, my family's life, and humanity in general. Now with the movement for deinstitutization, the lives and deaths that were once hidden now have social significance. There has been increasing awareness that deaths of people with IDD present unique challenges that should be addressed. In 1967, Sudan, Blades, and Kaplan described institutization as a form of death or social death. Hidden and removed from society, their social death preceded their biological one, sometimes by many decades. Now, I understand that is a very black and white picture, and discussion about the positives and negatives of institutions are very complex. However, the concept could be applied to how ableism and medicine has viewed patients with IDD in the past. This brings up an important point on what counts as a significant death. For example, when a child passes from cancer, society and media portrays the child as a warrior, versus when a child passes from a developmental or an intellectual disability, words like warrior, angel, or even simply the recognition of the death are seldomly seen in media. Both passing and lives of the children in this example are equally significant and important. But the words we use to acknowledge the death has a powerful impact on how society views not only the significance of their death, but also their lives. Other challenges that are important to consider are discussing end-of-life care to patients with IDD, and the unique process of bereavement of caregivers. To close, I think one of the most important steps in inclusion and equity for individuals with IDD is acknowledging the importance and relevance of death, which will eventually acknowledge the importance of their life. As a current learner in residency, I'm acutely aware of how more curriculum is needed regarding how physicians speak about their patients, both regarding their lives and death. Language reflects underlying biases. Education on this topic is pertinent to improving health care equity. My lived experience with Lauren, my twin, showed that no matter how much she was in pain, she was always looking after others, which seemed to come to her naturally and effortlessly. Dr. Stephens, what has your lived experience with your family taught you, and how do you apply it to patient care and to teaching learners? Shannon, you're a tough act to follow here. Thank you for sharing your story, the joy and some of the sorrow, and how it's helped you make a difference. I'll be excited for you to be a PGY2 and doing what you love. My daughter, Callie, is now 10, and she is in an inclusive fourth-grade virtual classroom. Callie had a very unexpected diagnosis of Down syndrome in the delivery room after 29 hours of labor. Quickly, the question of whether or not she had Down syndrome was raised to us, and both my husband and I, who are both docs, couldn't see it, couldn't believe it, didn't really want to believe it. All we could remember was risk of congenital heart disease and leukemia. There were some tears, and then there were tears because there were tears. We were so lucky to have one of the geneticists we worked with at the hospital come back and see us at the end of a snowy day and say, Yeah, I think Callie may have Down syndrome, but you know what? She's doing great, and what I really want you to focus on is joys and expectations. Children are all different, and we really should think about them in terms of joy and great expectations. That really became our mantra. Callie's karyotype came back a week later and confirmed it, and we got rolled into early intervention. Having been a family doctor for a number of years at that point and having written prescriptions for PT, OT, and speech that consisted of evaluate and treat, I suddenly found myself crawling around my living room and working with Callie and spending hours with therapists. Callie did really great until six months of age when she got croup, and suddenly she was transformed into a little baby that smiled beautifully and looked happy as could be, but sounded like Darth Vader and had a respiratory rate of 60 to 80, wasn't gaining weight, back and forth into the hospital. We actually ended up firing a couple docs, which is really fun when you're a two-physician family in somewhat of a small suburban area. Really, we found some people just couldn't see Callie for Callie, and one doc went as far as saying, well, you know she has Down syndrome, and all I could think of was like, yeah, yeah, I got that with the karyotype, but where does that fit into the differential diagnosis of a kid with progressive respiratory distress? Our life with Callie, she obviously turned the corner, and she got the right diagnosis and had the right team, and they worked together, and it's really influenced my teaching, partly to Dr. Turk's point, it changed my community, and I learned in many ways beyond the typical hospital setting. I got to know other families with Down syndrome. Callie and my older son Keegan were involved in Special Olympics, and suddenly I had friends and family members or people that felt like family with intellectual and developmental disabilities, and you know what? It was just fun, and we had a good time. I've now focused my career on caring for individuals with IDD, and there's a couple things I share with my learners and students. You know, one is that patient-centered approach to care, and think of the patient as an individual first. Don't let diagnostic overshadowing skew your differential diagnosis. I take time that first visit with patients to understand their journey to my office and why they're there and what their goals are and what they usually do and what they want to do. It is important to know things about the patient's diagnosis, and a lot of them for my patients I have to look up, just like I had to read about Down syndrome after Callie was born. We talk about person-first speech when we talk, and we really talk about making sure that our focus in the room is on the individual, although certainly their caregiver experience is important as well, and that it doesn't matter if somebody talks or not. They can still communicate, and it makes a difference in your relationship. I'm so fortunate at Jefferson to work closely with my colleagues from PM&R, and they do everything from help me problem-solve to demystify the ever-scary baclofen pump. I talked to Dr. Heckert on the ride home today about a patient who I saw on the call. Just finally, wrapping up, I think also to Dr. Turk's point, you guys, the students and the residents on this, are really able to approach this at a level of sophistication beyond that of some of your faculty members. You've grown up in an inclusive setting. You're keenly aware of health disparities and social determinants of health, and you get technology, and you're fun and engaging, and you're a huge part of the team. I do sometimes say that sometimes with some of my senior colleagues, when, say, I talk about Down syndrome, I have to talk about Down syndrome 101, and with my learners, we can really get into the grid of Down syndrome 202 pretty quickly. So I hope that covered what you wanted me to cover. That was great. Thank you so much, Dr. Schrader and Dr. Stephens. We're going to move on to the second big topic, which is related to physicians' role in defining quality of life, disability, and function. So to kind of start this section, we first need to think about forms of discrimination that are experienced by disabled people. And so starting with ableism. And so ableism, just to be clear, because sometimes we use that word and we need to really understand what it means, it's based on the belief that typical abilities are superior, and it's rooted in the assumption that disabled people require fixing and that they are defined by their disability. It can look a lot of different ways. There's some examples labeled here, but I'm going to turn it over to my colleague, Dr. Prokop, to talk us through the main topic of physicians' role in defining quality of life, disability, and function, and how that in and of itself can be a situation where ableism can certainly play out. Hello, everyone. My name is Dr. Prokop, and I'm a second-year resident in physical medicine and rehabilitation at the University of Pittsburgh Medical Center. And like Dr. Chandon said, I'll be talking to you today about health-related quality of life and the disability paradox. Next slide. Quality of life can be calculated in several ways, but the most commonly used is quality of life adjusted life years, which is abbreviated QALY, and that's what I'll focus on today. Health-related quality of life estimations are also used in a variety of ways in health care, such as determinations of insurance coverage, cost-effectiveness analyses of procedures and pharmaceuticals, research studies, as well as health economics. You can see in the below equation that QALY is equal to one year of life times one utility, where a year of life lived with what is considered less than perfect health is worth less than one. There's no single way to calculate utility, but one that's seen frequently in the literature is the EQ5D5L form, which I used here as an example. On this slide, you can also see a vibrant and spunky young man with Down syndrome and autism who happens to be my older brother, John. He will be helping me illustrate this concept. I filled out this form to the left for John, who, as you can see, has a variety of care needs to complete his activities of daily living. There are five main categories, including mobility, self-care, usual activities, pain or discomfort, and anxiety and depression. Most of John's needs place him in the slight to moderate range, which corresponds to values of two to three for each category. In this way, John, a horseback rider, gardener, yogi, book lover, Food Network aficionado, and who can belt out all the songs on the Phantom of the Opera soundtrack, is reduced to the set of numbers you see here. This score is combined with a time tradeoff to obtain a utility value between zero and one, where zero is essentially death and one is full health. The concept of time trade-off is an interesting and controversial one. It relies on surveys of the general public without disabilities and asks the following question, how many years of life with a disability would you trade for years in perfect health? For example, someone may trade 70 years of blindness for 50 years of quote-unquote perfect health. In this case, 50 years divided by 70 years leads to a utility value of 0.7. These calculations can be done for a wide variety of disabilities and the results vary depending on the population of individuals without disabilities that you're sampling. For this reason, there are no standardized utility values. Obviously, the glaring issue here is that the general public consistently underestimates quality of life with a disability, which is referred to as the disability paradox. This phenomenon is well-documented in the literature if you're interested in learning more on this topic. Next slide. There are more consequences than we have time to discuss today, but if you're interested in the effect on people with disabilities during the COVID-19 pandemic, an AAPM and our white paper, including this topic, will be available this coming summer. So definitely be on the lookout for that. And with that, I will turn it over to Dr. Priyachandran to continue this discussion. Thank you, Dr. Proko. So moving on to thinking about what other forms of discrimination are experienced by people with disabilities. And we've all been sort of hearing and talking about the fact that one in four adults in the United States have a disability. And if this isn't in fact true, then potentially people with disabilities experience all forms of discrimination. It's a very diverse population made up of people of very differing identities, and it's important to remember that. Research, as well as in clinical care, sometimes we silo things, either by clinical condition or patient population or by particular identity or groups. But the reality is that when people are out living their lives, these silos don't exist. And so understanding the intersection of identities requires active listening, which is critical for understanding those barriers and facilitators to equity. The picture you see here is my daughter, who in her life, at the same time, she is both Indian and Jewish. So just an example of intersectionality and how it is something that is at the forefront of my mind a lot. And so really defining intersectionality is the interconnected nature of social categorizations, such as race, class, and gender, as they apply to a given individual or group. But the important part that often gets left out in the definition of intersectionality relates to the acknowledgment and attempt to understand overlapping and interdependent systems of discrimination or disadvantage. Bring us back to the definition we looked at regarding ableism, and you'll see here that the tie is made that like racism and sexism, ableism classifies entire groups of people as less than. And so what we have to remember is that marginalization that occurs because of disability, which is the impact of ableism, is compounded by other forms of discrimination, so the impact of racism and sexism. And so what's important to think about is minorities with disabilities often experience what's referred to as sort of a double burden or even a triple burden, depending upon the other identities that they possess. And so one of the things to be aware of is that we have the opportunity with thinking about disability in medical education to be intersectional in our teaching. And so one way to do this is when we're talking about language preferences, on the disability side, we'll often discuss person-first language, which you heard from Dr. Stevens. We also discuss identity-first language. It's an opportunity for us to also talk about pronouns. And so the idea here is that if we are addressing one form of discrimination in our teaching, in ableism, then we should address others as well. In research, I'll just bring a couple of examples here, but you might be thinking, well, why does this matter? It matters because it prevents invisibility within both communities. So if you are somebody that has multiple different identities, and don't we all, you might feel that certain spaces created for just one group of people doesn't really fit your needs, that you don't feel included there. And so it's really important to explore that and to listen to people who have intersecting identities in order to understand how to make spaces more welcoming and inclusive. The other way to think about this is when you see things that break things down, say, by race, you have to go beyond just the prevalence. So you see this here, looking at intersectionality with disability and race. But we have to go beyond prevalence to think about what are those root causes. So we have to use systems-based thinking to think about social determinants of health, as well as often overlapping forms of discrimination. And so I bring up an example, which one of our invited guest speakers is going to speak more about, and I wanted to just bring it up so you've got the background information here. So an illustrative example is delayed diagnosis of autism spectrum disorder in African-Americans. And you see here that the average age of diagnosis is 64.9 months, which is more than three years after families report their initial concerns. And so what are the root causes there? And I bring up some quotes here, just, you know, we'll put this paper, this collection of papers for you to review, but there's an incredible collection of pediatrics, which I'm thankful to my colleague for pointing out to me, that really does a great job of tying some of these root causes to the healthcare disparities that we see, and then tying it even more upstream to those antecedents, as well as those forms of discrimination that can really truly impact health outcomes. And so I want to turn it over now to Dr. Walton to discuss in regards to intersectionality, what do we need in terms of research? And also, what do we need in terms of action? Good evening, everyone. I hope you all are able to hear me. And I hope you could see me too. Sort of can't see myself, but it's all good. So, no, I thank you for that introduction, and you hit on some of the great points that we did discuss. I think I'll specifically highlight and go a little further in terms of the intersection of racism, or I would say race, ethnicity, and disability. And so I'm hoping other people on this call, I know we all come from various institutions. A lot of us come from institutions that may have a LEND program, as you see here, or a University Center of Excellence in Developmental Disabilities. And so I'm going to speak to that because there is an action plan. There's actually a network action plan where they try to discuss from various levels, from curriculum development to how you basically, you know, operate your UCEDD or your LEND program, looking at equity, diversity, and inclusion. And this actually came out of 2019. I actually was part of the, not the contributing author, but I was part of an action team that reviewed it. And so one of the questions, and as they laid out the plan, they sort of gave history. And they gave a lot of history in terms of the disparities that we know. For example, we all know it's pretty clear that there are disparities that are quite, you know, extensive that address a variety of aspects of health based on race, ethnicity, linguistic differences, and other abilities. There's also pretty clear evidence noting that there are clear disparities in health as it relates to our individuals with developmental and intellectual disabilities. What is not clear, but I'm going to reframe, what's growing? Because I think we are starting to have more literature, but we just don't have the abundance of literature to show that what data is there to show that there's disparities at the intersection of race, ethnicity, and disability. And so there's four domains that they hit on. And so one domain is health, right? And so I'm just going to go through them briefly in my mind and in my head and hope you guys can still, you're still with me. Okay. So there's data from 2016 looking at two main surveys, the National Health Interview Survey, the Medical Expenditure Panel Survey. And they show that Latinx and Black adults with IDD actually have worse health outcomes than white adults without IDD. And they control for income, they control for other socioeconomic status and factors. They did know that there was a need for further research related to mental health specifically, but they already know that in the past decade at that time, individuals from racial ethnic minority status with DD were at increased risk for certain mental health problems, suicide attempts, antenatal depression, comorbid depression specifically with physical disability. So that's just an example. Then you go into education. And I would actually hold on that and actually do early identification and intervention. So autism was mentioned. And so I'll go overall in terms of at age 24 months back in 2009, it was already well-known, Black children with developmental delays were five times less likely to receive services compared to white children. Fast forward that to early 2020, that data and that specific point, the differences are actually narrowing, but they still persist. So Black children are less likely still to be diagnosed with autism by age eight years compared to white children, but they're starting to know that there is, we are aware that we know we need to make, continue to make greater strides and they're trying to narrow that difference, but there's still a lot of work to be done. But I say this is important because when it comes to our children, overall individuals, but we start young as soon as they come out the womb, we know we have to be intense about the interventions we need to support our children because if we don't address it now, then when they get above the age of three into school age, that's where we'll notice more disparities in overall education. Because why is there over-representation of minority students in special education classes? We know this exists. And then the other question is, are they even have the right diagnosis that way they can get the right services or do they have the right diagnosis still not receiving those services? I also state that because we know our children should have an individualized education plan or an IEP. When you know children have an IEP and they should also have specific behavior plans, when a child is noted to have behavior difficulties, how are you modifying or addressing that behavior plan? Or are you just straight suspending them? Because now there's data to support that black students with IDD have higher suspension rates. American Indian students receiving special education services also have similar higher suspension rates. This is important. And if we don't address that, then our children grow up, try to achieve and graduate and maybe look into post-secondary options like employment, where then there's disparities in employment. Black youth with IDD that are transitioning to adulthood have actually shown to report less financial independence and employment. And then if they are employed, based on race, the type of job can differ. So one study already showed from 2017, white individuals likely were to have more employment, compared to other races. And so I state all that because if we don't start and address these concerns really early from the beginning, you see the ripple effect. And you see the ripple effect that affects so many institutions over centuries that affects all of us, right? So whether it comes to the hospital, the school system, anytime, any type of business, if we don't address the institutional racism and structural racism that has already existed from the past that leads to the three levels of racism we have, that's where that ripple effect's gonna continue. And so I'll sort of end there for now and open to discussion, but the intersection is important. And I think we all know now we need to really address the policies and the rules and the structure that affect what we do day-to-day and affect our own bias, right? Because I know it's said earlier, a lot of our patients might have a biased position. What are we gonna do? No, we're gonna address our bias. We're gonna check our bias and make sure we're aware of it and then make sure we do something at the patient level. But then as advocates, what are we gonna do at a policy level? But I'll stop there for now. Thank you so much for your comments. And I really appreciate the way you illustrate that ripple effect kind of through the lifespan. I think it's also the perfect segue to thinking through our next section, which is about, okay, so there is ableism and multiple levels of influence. What do we do about it? What are our action steps? And so we're gonna go through this just at thinking of different levels of influence. We've kind of talked mostly about the individual level here like Dr. Walton highlighted that we have to think about how we think about disability. It can be so simple as a vignette like this where you present a patient, you ask if they're disabled and then you add in a diagnosis and then you ask again. And so having self-reflection and discussion is important as well as education. So doing the work regarding implicit bias as well as understanding that there's limitations to this. So doing simply the IAT in isolation isn't going to change anything. That isn't going to move the needle because solutions at other levels of influence are critical to addressing all of the forms of discrimination like Dr. Walton put are by nature structural. And so to that end, we wanna think through other levels of influence as well. So at that interpersonal level, that's really for us as physicians, it's a patient-physician encounter, but it's also our colleagues. So let's not forget that one. But it's the opportunity for us to apply what we learn from self-reflection and self-education. And our patients and our colleagues depend on us to continuously do that work. And I say continuously because it sort of brings in my mind as physicians our thoughts on quality improvement. Potentially this could be the ultimate in the PDSA cycles if this is one that we all sort of took under that quality improvement framework and did. I think it would really change things a lot. I now wanna pass it over to my colleague to speak about institutional level potential layers of influence there. Thank you. Dr. Matt Adamkin, Dr. Chandon's partner at the University of Louisville. As we prepared for this discussion, the first thing that came up coming back to my mind was the very well-known quote from the disability rights movement, nothing about us without us. Ultimately what we find in medical education teaching learners is they are better off receiving feedback from a person with a disability about a clinical encounter with a person with a disability than they are receiving feedback from a preceptor about that same encounter. Ultimately, positioning a person with a disability as the expert, giving them the opportunity to speak directly to learners as opposed to speaking about them to learners can really make a difference in a learner's experience and what they're able to gain from their educational opportunity. I'll speak very briefly about my experience at University of Louisville and then I'll bring in a couple of our guest speakers. We at University of Louisville are big on utilization, not utilization, but inclusion of self-advocates. Specifically, we will invite people with intellectual disabilities to come lead small group discussions of medical students to function as standardized patients and mock clinical encounters with medical students. And I think that ultimately makes a bigger impression on our learners by allowing self-advocates to really direct the teaching. They learn much more from the self-advocates than they would ever learn from me. That said, an individual can only take things so far. It really requires an institutional approach and institutional support to make that learning foundational and to make it sustainable. Sustainability is everything with this movement and that's how you reach the most learners. So with that in mind, I'd like to invite Dr. Bill Bachnick to the discussion and think about this at an institutional level. Dr. Bachnick, you're very, very uniquely positioned as a father, as a chair of a physical medicine and rehab department, and now in the beginning creation process of a new medical school in Charlotte and what that curriculum is gonna look like. So I wonder if you could just speak about community partnerships and how you create sustainable learning in medical education for both residents and also for medical students. Okay, well, Matt, thank you. I think there's just a couple of things I need to say before I give you my few words is that Matt, who's asking these questions, was a resident of my program from 2013 to 2016. And he is largely responsible for the work that we're currently doing at Carolinas Rehabilitation. Now I've been involved in Special Olympics for over 10 years. And so my daughter has been an athlete and when she became an athlete, I became the person that was with her when she was an athlete. And I've gotten more involved, including to the point now where I'm a head basketball coach of the team and I've been doing that for about 40 years. So that's my involvement. And I didn't actually bring that to work up until Matt came to work as a resident with us. He had experience with developing and working with MedFest up in Virginia and came to North Carolina where we didn't have MedFest and said, we ought to do MedFest here. And he did all the work or most of the work to get things started and basically set us up for much success that has continued after his departure in 2016. What we do is basically the first one was October of 2015. And what this involves is all of our residents, we have 15 residents, they all come to MedFest. Any medical students that are working with us come to MedFest. We have visitors sometimes from other departments, family medicine, pediatrics have made visits to the MedFest and supported the process. Our administrators participate, our therapists, our nurses, and we're taking care of about 100 athletes at each MedFest and after the first MedFest, North Carolina asked us to start having two a year, one in the county that's just west of Mecklenburg County, where Charlotte is located. So now we're doing MedFest in two different locations each year. It's been extremely successful. It's given the residents, the medical students, just the ability to see these folks with intellectual disabilities outside of the hospital, which is where they typically see them, and interact with them in the community. And I think it's been a wonderful experience. And I have to just thank Matt for that work. And he actually just recently received an award that we received back in 2018, the Golisano Health Leadership Award, which is given by different states that have Special Olympic Programs. And it's an award basically for folks that are inclusive, including people with intellectual disabilities in aspects of their health care. And we received it in 2018. And I believe Dr. Adamkin just recently received the same award in Kentucky. So congratulations, Matt. Regarding the medical school, we are actually in the process of just building the medical school. In fact, we don't break ground until next year, but we're started working on the curriculum already. And the Associate Dean on our campus and I have already had discussions regarding what we can do with respect to disability. And I didn't approach it with the idea of intellectual disabilities because I knew we weren't going to have much time. And it turned out that they were planning to do a month-long rotation, probably a third year or fourth year, second or third year actually, on diversity and inclusion. And I came to her and said, well, how about disability? That's a big issue with respect to diversity and inclusion. And she said, yeah, that's a great idea. We'll give you a week. So now my challenge is going to be figuring out how do I take physical medicine and rehabilitation, distill it into a week, and include intellectual disability. So Priya has challenged me with that. And I am looking forward to figuring out how to make that work within the week. So I appreciate both of the work that they've done to help make Carolinas Rehab and Atrium Health a much better place to work at and a much better place to train residents on managing and helping to care for folks with intellectual disabilities. So thank you, both of you. Thank you for that. He gives me far, far, far too much credit. But I do appreciate the kind words. I'll now invite Dr. Wallace to join us. Dr. Wallace comes from an internal medicine background, so a little bit different lens. Dr. Wallace, I wonder if you could speak a bit about, I mentioned self-advocates, if you could speak a little bit about self-advocates and also some of the important partnerships that can help bridge that gap between an academic institution and then the disability community. Sure, absolutely. So thank you. So, yeah, as an internist, it was about 10 years ago where I was in clinic and I got a referral of a pediatric patient from the Pediatric Developmental Disabilities Clinic. And at the time, you could have given me the sickest ICU patient and I would have been perfectly fine taking care of that patient. But I was clueless taking care of the patient that was referred to me that had an intellectual disability. And that was just not part of my training, whether it was medical school or residency. And honestly, I was embarrassed that I was ill-equipped to care for someone who needed my help. And so when I had the opportunity to come to Colorado Springs and set up a new regional medical campus for the University of Colorado, I wanted to incorporate something in medical education at the medical school level before people went off into residencies. And as we were thinking about designing this, we recognized that our experts were out in the community. Our organizations came to us and said, we want to help with this because all of our clients have had terrible experiences in our healthcare systems. And we want to make sure that we do something to change that. So those community partners were awesome. They were very supportive. In fact, one of our community organizations, in partnership with a family, set up an endowed scholarship to help support our students who are interested in caring for people with disabilities. And we use that as a recruiting tool and we give them additional experiences, both in longitudinal clinics, caring for people with disabilities, but then also their community-based projects are with organizations that serve the disability community. So they get a more in-depth experience. And then our students, all of our students actually get partnered with a family longitudinally to be with them in clinical settings and home-based settings and an activity based setting so that they can see not only the challenges of living with a disability and caring for someone in your family with a disability, but also the joy that goes along with it. How smart they are and what they can accomplish out in the community. Just really focusing on the social model of education rather than solely the medical model. But those community partners helped us identify all those families in the community that are the true experts in educating our future doctors. And so we reached out to the organizations, the community organizations reached out to the clients in the community, and then they helped us develop those partnerships. And we've got some really dedicated people. So I know we're running short on time, so I'll just kind of leave it at that. Thank you. I agree with you entirely. I know that my experience with community partners and with self-advocates is some of the best education that I personally have had all in an effort to help educate others. So I think it's so important. I appreciate all the work that you're doing. I'm going to pass it back to Dr. Chandon to get us started. I realize that we are sort of approaching nine o'clock Eastern, so if people do need to hop off, we certainly understand. We realized that we sort of intentionally packed this with lots of invited guest speakers, but we really wanted to try to emphasize as many perspectives as possible. So if you need to leave, no problem there. And you'll be receiving sort of the link for the recording for the remainder. But I want to thank all of you for joining us today. Do keep going, because we do have more time and more guests to speak with. So thinking through next that community level, I'll just briefly say that community-engaged scholarship is a research method that can help us sort of bridge the gap between institutions and communities. You heard a little bit about that, and it's important to think about. It's one of the ways that we can address the three responsibilities of clinicians to disability communities. This is an article that will be shared in your resources. So I'm really excited that we get to sort of our next speakers as well, so I'm going to keep going. Just to emphasize here that community-engaged scholarship, sometimes it is seen as sort of service work or not quite as rigorous, whereas if you really compare the two, it takes more time, and you're doing everything in traditional scholarship, plus particularly when it comes to dissemination, really interfacing with the community. So I encourage everyone to just think about that and think about that as a potential solution or tool. I want to make sure to turn it over to my colleague now, Dr. Villegas, for us to talk about the most macro level of influence. All right. Hi, everyone. Thanks, Dr. Chandon. I wanted to start by talking a little bit about my background. So I, somewhat unusually, came into medical school thinking I maybe wanted to go into Peds rehab. So you may ask, well, how is that possible? Because it's a little bit of a small field. And I worked at a summer camp for kids and adults with intellectual and developmental disabilities when I was in undergrad, and then also worked as a personal care assistant at a couple of group homes when I was in undergrad as well. And so I happened to have those experiences and was talking to a physician who recommended that I work in the psychiatry. Of course, my initial reaction was, well, psychiatry is interesting, but I didn't really think that was what I wanted to do. Turns out, of course, I was completely incorrect in my understanding of what psychiatry was. So I got to explore the field more. We actually had a required third-year rotation that included physical medicine rehabilitation for several days, and ultimately decided to go into Peds rehab as kind of had been my initial plan going to medical school. But again, that's not the typical experience that most people have. Many students go through all of medical school never having heard of PNR. And so I think the reason I'm telling you all of this is that I really want to kind of emphasize, as I think many of our faculty and invited guests have emphasized, that experience matters not only for students who are interested in going into PNR, but also for our colleagues to understand what we do, and I think more broadly to understand the populations that we work with and really build on that. We in medicine learn from experience, and as Dr. Wallace just demonstrated with the program that they have in Colorado, that really getting experience with populations that maybe aren't otherwise emphasized is very important and can really build beliefs and also help build understanding, and that's a lot of what kind of can build culture and cultural change. So I'm going to go ahead and open up to our guest speakers, and my question, or I'm going to direct this first to Dr. Ancum, is what culture shifts are needed as we're thinking about furthering efforts regarding including disability in medical education? Thank you. I'm so excited to be part of this. When I think about culture and the and some of the things that need to change, I also think about even beyond like some of the wonderful efforts that are coming, that are being talked about here today, is thinking about the language that we use in terms of clinical cases and the way we teach our students about things like normal versus abnormal or who determines what is unremarkable, right, and some of those kinds of language shifts because language does reflect the underlying culture, and I think with that, because we do not know our own blind spots, we need to collaborate with scholars in disability studies and medical anthropology to sort of work on this and figure out how that language ties back to our hidden curriculum that people are imbued with every day that then perpetuates some of these concepts of ableism that we've talked about. The other piece that I think about is that often is that medicine, we have a culture that we need to fix things and that we are failing if we don't fix things, so we need to change our culture to be more person-centered and put that person in the center and make it not about us but take our ego out of it, and I find that health professional students involved in interprofessional education are all thinking about this as they come in, and in that idea of person-centered care, it's fostering a culture of humility and listening to address all the different intersectional identities that were talked about today to move towards equity, and then allowing us to, especially in this space of disability and medical education, it's not a space that a certain person or group should own. There are so many experiences that you've heard today and so many collaborators that can work together to advance this collectively, and so how can we practice academic humility to advance the culture? And mutual support, how do we support each other through this endeavor? And I think lastly, we need to center physicians with disability in this discussion because they have seen how our culture has affected our biases more than any of us can, and so we need to take advantage of their lived experience and really listen, but also know that because of the nature of the disability, a lot of people with disability may not become physicians, and so we need to have those self-advocates to be centered and their voices centered as well. Thank you. Thank you so much. I'm going to direct actually the same question to Dr. Hauchow next. Well, thank you for that question, and I really appreciate the tee-up because what I got there was making sure that we're having physicians with disabilities engaged and centered in this dialogue, and as a physician with disabilities, I'm very happy to be able to be in this space with everyone, and it's really great for me to think about how much we've moved in terms of shifting the culture, and I want to just highlight a couple of things. We heard today about the issue around quality of life as being a measure of someone's value, and you know, the reminder here is that quality of life is a subjective experience, and it can be assigned by that person or that person's surrogate and not the clinician, and when we measure quality of life using metrics that really are measures of function, we miss the opportunity to understand how people experience their own lives, and as physicians who focus on function and quality of life, we need to center ourselves around our own potential biases that exist, and I think that theme we've heard kind of throughout this talk today. The real culture shift that I want to bring forward to us is that when we create courses or experiences for learners, we often ask that to be for learners who have a particular interest in, so somebody who might be interested in being a clinician who takes care of people with disabilities, but one in four adults in the United States have disabilities, and the idea is that you could opt out or just not provide adequate care to people with disabilities, and that being okay is an incredibly ableist concept, so no matter who you are in medicine, maybe not a pathologist, but you're going to have people who are in your practices who have disabilities, and the way you engage and interact with them is going to lead to differences in their health outcomes, and so the major culture shift that I see us embarking on and where I see rehab physicians being champions is that disability is an experience that many people have. In no way, shape, or form would it ever be acceptable for a medical student to say, well, you know what, I just don't want to take care of immigrants, but we do still allow this really kind of ableist thinking about, oh, I just really am not interested in taking care of people with intellectual disabilities, and we hear comments on the floors like, oh, I just would never want to live that way, kind of ableist projection onto other people's lives, so I think as rehab physicians, we can really be champions because we know that people with disabilities can have full engaged, fulfilling lives, and so I think that there's really an opportunity for us to, in collaborations, whether that be with other disciplines, we're really good at teamwork, I think we should extend that out, and with community organizations, opportunities for engaging with participatory research, as we just heard about, and self-advocates, there's obviously the LEND programs that we heard earlier today, and then in academia, we really need to elevate the engagement that we are doing as physiatrists with the rest of the healthcare community and see the value in having those partnerships and being leaders to help break down the barriers to equitable care for people with disabilities, and I also think we can also turn the mirror in upon ourselves and think about where are our opportunities, so in pediatric rehab, doctors take care of all sorts of childhood onset disabilities, some are genetic, congenital, some are occurring in childhood, but we often don't have a good transition to our adult colleagues, and that's even more true for children who have intellectual and developmental disabilities, there's not a clear conduit, and so we, I think, can look at ourselves as our own field and say where are our opportunities to do better in providing more robust care for people with disabilities across the lifespan, because we're the ones that can really make it happen, and we can be the champions that we're fully capable of being, and so I just want to say I'm really impressed with this whole session and really grateful that we have this opportunity to talk about equity and ableism and what we can do as a field to advance health for people with disabilities. Thank you so much, thank you Dr. Ingram and Dr. Hofstra, I feel like you really tied everything that we've been talking about together really well, so I'm going to turn it back over to Dr. Shannon. Thank you, Dr. Villegas, so let me just conclude with some closing thoughts, can everyone hear me okay? My audio was going a little in and out before, just give me a thumbs up if it sounds okay now. All right, so closing thoughts, again, we really want to make sure people think about who is in the room, have everyone's ideas been heard, and who is trying to get into the room but can't, and some closing actions, what's next is we hope that we keep the conversation going. We're going to be creating a resources webpage, so you'll receive that link via email as well as the session recording. Be patient with us, please, it's going to be a bit of a living document, we're going to start with resources that were mentioned in this talk, as well as those identified by our invited guest speakers. We're also going to try to emphasize not forgetting to listen, so we plan to create a list of self-advocates to follow on Twitter, so groups like Docs with Disabilities, as well as individuals, as well as self-advocate organizations. You really can break down a lot of silos by improving diversity and representation, even in just your Twitter feed, and so really thinking about that. We're also going to be doing some things with our intellectual disability member community, they're coming soon. The white paper will be coming soon as well, as well as the health equity supplement that was mentioned, so thank everybody for coming today and for listening to this conversation, and special shout out to our team, as well as our invited guest speakers. Thank everybody so much for sharing your perspectives today.

disability

medical education

cultural shift

physicians

inclusion

equity

person-centered care

community partnerships

self-advocates

community-engaged scholarship