our next lecture at this point. We'll kind of skip through some of the front matter. Dr. Dubon, thank you so much for joining us today. Yes, absolutely. Thank you guys so much for having me. So I'm going to go ahead and share my slides here. We have quite a bit to talk about today, so I'll do my best to keep us as on time as possible. And again, if anybody has any questions, feel free to send them through. Sterling Herring should be at the top of the participants list or near the top. All right, awesome. And if there's any issues with audio or anything, feel free to just let me know. So thank you guys so much for inviting me to give this talk. This is a topic that's near and dear to my heart and kind of hopefully my life's work and passion. So I'll give you a little bit about my background. I am trained in both pediatric rehab medicine and pediatric sports medicine. So I did the PM&R residency through now Shirley Ryan Ability Lab. It was rehab in pseudo Chicago back in the day that I was there. And then I did a fellowship in pediatric rehabilitation medicine, so a two-year fellowship over through University of Washington and Seattle Children's Hospital, followed by a one-year sports medicine fellowship that was a specific pediatric sports medicine fellowship at Northwestern and Lurie Children's Hospital there. And the reason I did all that was because I found over time I really had an interest in both areas, but also found that there was kind of a bit of a gap of that overlap. Not that it didn't exist at all, but just that there wasn't a lot of focus in medicine, specifically on the youth athletes with disabilities. And so that's kind of why, again, I'm saying that that's kind of my life's passion and work. And so you'll see as we kind of go through that there's so much work still to be done in this population. So a lot of what we'll be talking today is actually going to be taken from the adult literature and what we have out there. And then I'll speak a little bit about you know implications that we can take from that, some information that we can take from pediatric sports medicine, and really start to think about how that applies to youth athletes with disabilities. So I don't have any disclosures that really should be interfering with this presentation, but I do just want to be up front with the fact that I do have a relationship with Special Olympics. So I am their med fest, which is their group pre-participation physical medical and clinical director for the state of Massachusetts. And I do have two different grants that are actually directly related to the type of work we're going to be talking about. Again, shouldn't be complex, but I did want to be honest about that. One is the National Curriculum Initiative in Developmental Medicine, teaching Harvard med students about disability. And Special Olympics is one of the funders for that grant. And then the other grant is Deborah Monroe Noonan Memorial Fund. And I'm working with Dr. Sherry Blauwet on some work looking at physical activity and sports in kids with cerebral palsy and spina bifida. I know usually this slide winds up at the end, but I wanted to make sure that this slide was at the beginning for a couple of reasons. One, especially in the time of a pandemic like this, and in speaking to residents and fellows, as I know that's primarily our audience. So I'm sure we have others there as well. It's always important to acknowledge those who've helped you get to where you are and have given you opportunities to grow. And the other reason is because a lot of the work that in the back work for these slides, and a lot of where this came from, is working on some papers with some of the other individuals on these acknowledgements. And so some things come directly from those papers, and I want to be honest about that. So Dr. Blauwet, I'm sure everyone knows, is really a leader in the field of adaptive sports medicine, and I've been lucky to work with her. Dr. Chandon is a leader in working with individuals with intellectual disability in Special Olympics. Vicky Denitali is from Special Olympics Massachusetts, has given me great opportunities here. Dr. Herring, thank you for inviting me, and thank you Dr. Elizabeth Martin for also helping coordinate getting me to this lecture. Dr. Holder is from Special Olympics International. Dr. Houtra is the reason I was asked to write those articles in the first place, so I want to give her credit for that. Peyton also from Special Olympics. Dr. Rowe and her involvement in getting me involved with adaptive sports. Dr. Ravito helped me out with one of these papers I'll be talking about, and then Keiko, one of the nurses at Seattle Children's did as well. Okay, so moving along, I just want to show you these are the articles that I'm referring to here. So we wrote a series of articles, it was published last year, because what we found was basically there was a decent amount of literature starting to grow on Paralympics and on adult athletes with disability, with physical disabilities or visual disabilities, but there wasn't a whole lot of literature out there specifically on youth, and so we tried to kind of gather the literature and put everything together in one place. So if you are interested in this topic, you know, I just wanted you to have that information, and also like I said, a lot of what I talk about today is coming directly from this article. The second article was, you know, when initially we were asked by the journal editors to write the article, we were asked about doing it for adaptive sports, and my thought with disability always is, let's include everybody, and so by no means was this including everybody, but you know, given my work with Special Olympics and my work with Dr. Chandon, I said, well, why don't we make sure we're addressing both populations, understanding that the populations are different, but talking about Special Olympics as well. So they were wonderful and allowed us to write that second article too. So this is a good reference if you're looking for just more information about Special Olympics. Okay, so when we talk about disabilities, I think in the world of PM&R, we always tend to focus so much on physical, right, but that's our bias, right, and so I think we need to take a few steps back as physiatrists, because physiatrists are like, we're holistic people, right, so we like to look at the whole person, we like to look at things from the perspective of including people, and I think there's been, over time, there's been groups for advocacy for people with physical disabilities, groups for advocacy for people with intellectual disabilities, and there hasn't always necessarily been overlap or joint effort, and that's something that I feel strongly about, is not to clump the disabilities to say they're the same, because they're not, and I think that's always the hesitation in speaking about multiple types of disabilities, is the clumping, and I've seen it happen time and time again in the literature. It's actually why it's hard to talk about this topic, because there's articles out there about youth athletes with disabilities, mostly from like participation standpoint, and what percentage of people who play sports have disabilities, like all the stuff from basically from IEP and special education data, but they clump, so that it's really hard to determine like what is due to someone having difficulty with hearing versus someone with physical disability, and it could be completely different, and we don't always know that information. So I'm a big proponent when I teach med students, when I teach residents, and just when I think about these concepts about trying to acknowledge that all these different types of disabilities exist, and being honest about which populations you're talking about when you're doing a research study, when you're talking about the topic, when you're thinking about different ideas. So just as a review, developmental disabilities really are disabilities that happen during the developmental period. So childhood onset, we think of things like autism, like cerebral palsy, and that's by no means an extensive list. Intellectual disabilities actually impact someone's IQ, and then also their adaptive behaviors, so how they adapt to those day-to-day things in their environment. So examples like Down syndrome, Fragile X, an unknown cause I put in there because such a great proportion of people with intellectual disabilities actually don't have a reason, or don't know a reason. That is something that is anticipated to get better over time as we have more and more sophisticated genetic testing, but it's actually pretty relevant, because if someone has an intellectual disability and they have an unknown cause, you're not sure what other comorbidities or things might be associated with it to protect them and to screen for it. Physical disability, again, you know, preaching to the choir here, this is something that you guys are all familiar with, so obviously affects somebody's physical functioning, like an example for someone that has spinal cord injury or stroke. Sensory disabilities, I think, again, we don't think about this as much in PM&R. We may have patients, for instance, you know, with a brain tumor who wind up with blindness secondary to it, or, you know, in pediatric rehab with, you know, a patient with a congenital condition that causes physical disabilities, and they also have deafness, but I think that's a big area that we don't always focus on, so I'm just thinking about sensory disabilities as well. So the next thing that I always talk about when I talk about sports for youth with disabilities, or anyone really with disabilities, is the fact that just because you have a disability doesn't mean that when you play a sport, you're playing an adaptive sport, right? Like, there are tons of people that have disabilities that participate in general sports, and we see this a lot. We see this a lot specifically in kids with lung deficiency or amputation, but it doesn't have to be just that diagnosis. So this is going to take just two steps here, because I know I need to re-share the screen. Sorry, it's just an ad. Don't worry, you didn't miss anything. All right. Someone can just confirm that they can see the video. We can see and hear. OK, great. So this is Gabby Shull. And she is internet famous. She had osteosarcoma. And then she had the Van Ness procedure, the rotational plasty. So if you haven't heard of that, it's when they actually rotate the leg, remove the tumor, and then the ankle acts like a knee. So you could see Gabby, who danced before all this. She's dancing in a regular dance class, right? And she's using her prosthetic. So the transformation through the years is pretty impressive. Because you can see that she's pretty good. And she's really doing such a great job using her prosthesis. And you'll start to see over time, later we're going to see that she actually, her taper prosthetic is a socket that has the ability to interchange out feet. So far, it looks like we've been seeing the same type of foot. But then later on here in this video, we'll see that she switches it out to a specialized foot. And you'll see that in a minute here. There's also tons of people that actually will perform physical activity, dance, sports, without using a prosthetic at all, too. What do you think of you when you're all alone by yourself? Do you like you? Do you like you? You don't have to try so hard. So this is, I think, a really impressive prosthesis. So she switches out her foot to actually a point shoe. And that's really where she made a lot of media, because that really hasn't been done very much before. There are actually also point shoe prosthetics that are its own limb. So rather than a switching out point, like you could see here that she switches out her foot. But the nice thing about being able to switch out the foot is that you can get your regular prosthetic approved by insurance. And then you might just be paying just for the foot. Now we're set. Now we're set. Let me cut this up. There we go. So what's nice about the components that she has there is that she's actually able to just switch out the foot. And so it makes it a little bit easier, probably from a financial standpoint and just from a logistics standpoint, versus if she were to have a different foot for every activity that she did. So should be back here. And so next we talk about, and actually back to the general sports, it's not just kids. I mean, there are elite athletes. So there's been an elite athlete in the NFL who had a congenital upper limb deficiency. There's now a Rockette that has an upper limb deficiency. So we're starting to see more and more of it. So not forgetting that in your patient population I think a lot of us are super excited about adaptive sports. And so we want to really gear towards, oh, yeah, we'll get you involved in Paralympics or adaptive sports. But not all kids will necessarily need to do that. And I think that's OK. And I think it's OK to do it either way. It's just knowing your options. So then we talk about para and adaptive sports. I think that these terms are often used interchangeably. But technically, there's a little bit of a difference there. So para sports are really sports in parallel. So it's an umbrella term that indicates that it could be a sport that's just created for people with disabilities, like goalball only exists really in that population, versus an adaptive sport. Like, for instance, wheelchair basketball is an adapted version of basketball. So that's an adaptive sport or an adapted sport. And so again, I think this is probably what our group here in PM&R is the most comfortable with. But I'll go through a video that I love and I first saw it from Dr. Sherry Blauwet. And I always wind up using this video when I, sorry, when I talk about this topic. One second, I'm working on getting it shared. That's the piece of it that just takes a minute. All right. So tell me if you're, are you guys seeing the video? Yes. Okay, perfect. All right, so here we go. Well, pretty impressive, right? And you'll see throughout this video, it's just people being people and showing their skills and not letting disability get in the way. ♪ Yes I can, suddenly, yes I can ♪ ♪ Gee, I'm afraid to go on as turned into ♪ So I think a lot of people are familiar with wheelchair racing. ♪ Look, what do you see ♪ But certainly there's also track and field events too. ♪ Confidence in me ♪ ♪ And I can do anything, yes I can ♪ ♪ Something that sings in my mind is telling me, yes I can ♪ ♪ I was judged for today, I was judged for today ♪ So wheelchair dance sport is not in the Paralympic games, but it is sponsored by IPC, International Paralympic Committee. And wheelchair dance sport, which you saw just a little bit there, is similar to like salsa or ballroom dancing, but individuals using wheelchairs, chair users. Not everything here, for instance, this, is a true Paralympic sport, but you see a little bit of swimming, a little bit more track and field. Wheelchair basketball, pretty common. Most people are familiar with that. Wheelchair fencing. Yes, I can. Yes, I can. Hey, yes, I can. No, you can't. Yes, I can. So you can see they have a variety of sports as well. This is just showing some sports from the Deaflympics Games 2013. And if you, you know, watch videos or, you know, read about athletes with deafness, again, a lot of them participate in general sports teams with other individuals without disabilities. However, games like the Deaflympics allow them to kind of have a level playing field. And so I was watching a video of somebody who stated that, you know, when he played general sports, he felt like he was at a disadvantage. And now he's playing sports through Deaflympics and he feels that he's on an even playing field with other individuals who have similar disabilities to him. So just in the interest of time, I'm just going to stop this one a little bit early and then we can get back to the slides. So that's just kind of an overview so that when we're thinking about youth athletes with disabilities, we're not just, you know, living in the world of thinking about adaptive sports or just thinking about like wheelchair related sports because there's so much more to it. Granted, again, my bias is towards, you know, para and adaptive sports and also Special Olympics. So I'm going to be really focusing on those two areas, physical disability more so than visual and then on intellectual disability and not really going to have time to focus too much on athletes with deafness or deaf athletes. So what do we know about sports participation among youth with physical disabilities? So we know it's decreased compared to age match peers. It is decreased diversity of sports participation compared to age match peers, which is a problem, right? Because we know in pediatric sports medicine and sports medicine right now what we are talking about and researching and a really hot topic is sports specialization is an issue, right? So playing one sport to the exclusion of other sports can increase your risk of overuse injuries. But now athletes with disabilities are not totally being left out of the conversation, but it's not a big focus right now. But I think that we need to move in that direction because there's several reasons that athletes with disabilities are kind of almost being forced into having a decreased diversity and a lot of it's access. Like if you only have an option to play in a wheelchair basketball league and there's no other opportunities for you that you'd be able to participate in or you'd be able to get transportation to, then that's going to be what you're doing, right? And I think it's even more important for athletes with disabilities, especially wheelchair users, because they're using their arms and their wheelchair all the time for their day-to-day mobility. And now you add on top of that, they're playing wheelchair sports, that's just adding even more concern and more ability for overuse injuries. And so the other thing that we know, it's not always activities that they prefer. I always joke that like I am terrible at basketball. I was on a basketball team for a couple years. I don't think I ever touched the basketball, but dance is my passion, right? And so if basketball was the only thing that was available to me, I don't know if I would be somebody that would be considered athletic at all because I probably wouldn't want to participate in it, right? And so we have to think about that as we advocate for our youth with disabilities to be participating in sports. So then we think about precautions. So this is all stuff that should be, you know, knowledge that you guys have been aware of, you know, when you write physical therapy prescriptions and you're putting in precautions for patients. These are the types of things to think about too, when you're recommending sport or exercise for people with disabilities, because you want to make sure that they're safe. You don't want to try to limit them to say, no, you can't participate in sports. I can't tell you how many patients with disabilities are told that, which is just heartbreaking because there's very few people that it would be true that there's no sport or physical activity that they can participate on really. So, you know, and even if someone is using a power wheelchair, there's power soccer, there's opportunities out there. But we have to just think about precautions. How do we do it in a way that makes them safe? And so it's important to know individual precautions for that patient and it's important to know in general what you should be thinking of for different conditions. So this is a good clinical report from the American Academy of Pediatrics and basically talks about all pediatric specialists. So pediatricians and pediatric rehab doctors and anyone that really interfaces with kids with disabilities should be promoting that they are participating. We know that they participate less than other children. We know that all children are not participating in general percentage-wise. We have a lot of inactivity. We're living in a world where in the pediatric world we have the spectrum of lots of people who are not as active as they should be and then other people that are probably too active and causing injuries. And so we need to make sure that we are making that part of our conversation and our counseling. There is a new version of this document that's going to be coming out in the next year or so. So then there's been some good work. I feel like a lot of the work on on youth athletes with disabilities has been more in the setting of how do we get people involved and less in the setting of how do we keep them healthy for sport and what injuries are in sport and how do we prevent those injuries and treat them. So this is from a systematic review and basically said that things that facilitate physical activity participation for youth with, again this is specifically to youth with physical disabilities, but if they are aware of the health benefits of physical activity, if they have motivation to be healthy and active, if they think that physical activity is fun, remember it's kids, but honestly adults have to think that the activity is fun to participate sometimes too. And that they actually have access to adaptive physical activity resources. Do they have something locally that they feel comfortable exercising with? Do they have a gym in the area that's even accessible for them to access? Do they have availability for an adaptive sport league that's in their neighborhood? And then barriers if they're not motivated, they don't have time, they don't have access to transportation. Now this is huge, we know that this is huge for our patients with disabilities, that transportation is a big issue. So if now it's like for a 30 mile radius, there's two programs that are available specifically for wheelchair users and on top of it they have poor access to transportation, how likely is it that they're going to actually be able to participate? Financial stress is a big issue as well. We know that many medical costs are covered through insurance, but a lot of them aren't. And so we know that a lot of our patients are in financial stress and to add to it that a program might cost money, not all of them do, but some of them do, may be an issue. Or also you know scheduling in with all the other financial stressors, scheduling in time to do this activity may be really challenging. And then if they don't have access to adaptive resources like we talked about earlier. So a lot of these barriers and facilitators are similar to what we see in the general population, but then there's some additive component of it when you're talking about all the access issues and the transportation issues. So I just want to talk briefly about power and adaptive sports. So when someone, like if you look at Paralympics, because that's you know kind of the gold standard again, that is the Olympic, like the IOC version of like the elite version of power and adaptive sport, but this exists through throughout the communities and the local power and adaptive sports clubs as well, that different sports will have minimum impairment criteria. So if you're interested in this topic, the Paralympics website has great information, they have handbooks and resources on all the different sports so that you can kind of see like what people would necessarily qualify for. So it's a good, it's a good thing to kind of peruse if you're interested in this area. And then it is unique to each sport, so if you have xyz disability you might not qualify for this sport, but you might qualify for this other sport. A lot of the local clubs will have some like leniency with that too, like you know a lot a lot of sled hockey clubs will allow people who don't have disabilities to participate in it too for numbers and then for camaraderie and you know just to to be inclusive as well, but then when you get to the elite version obviously you need to be meeting that minimum impairment criteria. So here's an example of impairment types for wheelchair basketball, so muscle power, apoptosis, hypertonia, limb deficiency, ataxia, leg length differences, and impaired passive range of motion. And then thinking about the next topic that we like to talk about with Paralympics is classification. So a lot of you are probably familiar with it, but if you're not, it's basically a way to give somebody, basically categorize their disability to make it like evening the playing fields, right? So it varies sport to sport, so we'll do kind of an example here. So classification will be a physical therapist often or a doctor who gets all this training in how to classify somebody. So they they do you know a standardized but thorough medical history, they do a standardized and thorough physical exam and functional examination. This is like measuring range of motion and strength, coordination, all those things so that they can really adequately classify the individual. And so for instance, here's an example in wheelchair basketball. So sports classification goes from 1 to 4.5 and 1, this is somebody who doesn't really have good trunk control, they have to have a higher backrest on their wheelchair because of it, and they have a secure belt to support their trunk in their wheelchair. So this is somebody who doesn't have a lot of side-to-side movement, and you can tell that that's something that would make basketball a little more challenging, right? And then if somebody does have really good trunk control, so they have forward flexion, rotation, lateral tilting, and they have a low backrest in their wheelchair, they have all this advantage from a functional standpoint in terms of being able to pass and throw the ball. So it's kind of important when you're participating in sports and when you're creating teams and competitions to make sure that you know what people's classification is because there are rules regarding it. So for wheelchair basketball, it's that there's five players on the court, right, and no more than 14 total points on the court at a time. So you know you wouldn't be able to have everybody at a 4.5, and this is how it levels the playing field so that really the competition is based on the athleticism. It's not based on the disability, right? Okay, so then pre-participation assessment. So those of you who have ever, you know, played sports growing up or have an interest in sports medicine might know that in order to participate in sports, oftentimes you need to do a pre-participation physical. And so when you think about doing a pre-participation physical for someone who has a disability, you have to think about all different types of things than you would be thinking about alone if it was somebody who didn't have a disability. So and that's not for discrimination reasons, that's really for safety reasons, right? Not to say, oh, you're eliminated from sport because you're at risk for autonomic dysreflexia. It's like, okay, no, no, we need to know you're at risk for autonomic dysreflexia so that we can, you know, be prepared for that if it happens. Or, you know, we'll talk about something called boosting. Like there's reasons for safety really that you're doing all the extra screenings that you're doing to try to make it evening the playing field so that these athletes are protected as well. Because really the purpose of pre-participation evaluations is twofold. One is to make sure it's safe, right? You know, if you do a cardiac exam on any athlete and then you find that they have a murmur and they have findings on exam that's concerning for hypertrophic cardiomyopathy, that athlete is not getting cleared. They are going to cardiology, they're getting screening, and, you know, you're getting clearance only if deemed safe or with whatever precautions are deemed from a cardiologist. So it's the same concept here. And then the second component of it is looking for injuries or injury risk factors, which again is more a little bit of a secondary component because the big component of it is to make sure people are safe. But then, you know, you find out that somebody has an allergy to peanuts and you need to have an EpiPen on the side of the field or that they have diabetes and that, you know, we need to be checking sugars and they have a certain management plan. So these are all the things that we think about with pre-participation exams. So, you know, there's lots of things to be thinking about in terms of special considerations for people with disabilities. So we talked about autonomic dysreflexia. What is the cause of their disability so that we can think about other things that we might need to be thinking about? Do they have a fracture history or are they higher risk for fracture? Do they have a hematologic condition that goes along with their disability? They have a latex allergy, super common in people with spina bifida or maybe people with spinal cord injury who cath a lot. Are there medications that could affect alertness or medications that could decrease their tolerance for heat? And then, are there specific precautions or restrictions for exercise? If someone has muscular dystrophy and there are certain things that you need to look out for and make sure that in training, you're not overdoing it to cause any muscle damage. Do they have a seizure history and you need to have a seizure plan? Do they have sensory impairments? And so you need to make sure that they have a plan for prevention of skin breakdown. So all these types of things to think about. Now, many of you might be already familiar with, but if you're not, this is a good thing to get familiar with is that there's a PPE monograph. Now, PPE monograph is essentially the gold standard for pre-participation physical exam. It's a booklet that comes out every few years. It is the, there are forms that are on the website that you can actually download, but then it also has a full book that explains why different parts of the exam are present and how to do different parts of the exam. There's a section on it for individuals with disabilities. And so there's an actual supplemental history. So there's a regular physical exam form, and then there's an athletes with disabilities form. A lot of the information I just presented about some of the things to think about and consider comes from that form. I will say it's constantly being revised and there's some components of it. Again, it's hard to clump. When you're clumping, it's easy to miss things or easy to, it's not like it's a form that's specific to specific types of disabilities. So I think, especially as physiatrists, we have to be mindful and careful to think, really think outside the box and think about all the different things that might be involved in somebody who has different disabilities to keep them safe. I was fortunate enough to be kind of an unofficial liaison between Special Olympics and American Academy of Pediatrics to join forces because on the note of what I said, the form for the athletes with disabilities, pre-participation physical clearance, didn't really have all the information that the Special Olympics felt was necessary in order to clear people for Special Olympics because there's specific things with different conditions related to intellectual disability that they felt were important that were actually missing from the athletes with disability form. So they ran into this problem a lot where people would go to their primary care doctor, their pediatrician, or their family medicine doctor, internal medicine. They would download this form. They would fill out the athletes with disability form and the regular medical eligibility form because you fill them up together and they would bring them to Special Olympics. And Special Olympics, unfortunately, we can't accept this. We need you guys to use our specific form, which does include additional information. So I helped partner with Special Olympics and with American Academy of Pediatrics so that now when people go to the website, it actually says right underneath there, please note, should not be used in place of Special Olympics form. If a child is participating with Special Olympics, please use these forms. We are hopeful that in the future, we're actually going to be able to have the Special Olympics information and form in the actual booklet. But our timing was such that the best we could do right now is for it to be on the website. So we're excited about that piece, which is something to be aware of. So medical considerations by diagnosis. Now, in the interest of time, there's not enough time to go over every diagnosis. I will say this is a big thing that we focus on, on that one article that I mentioned about youth athletes with disabilities from a physical standpoint, so para and adaptive sports. So if you're interested in a reference or if you're interested in learning more about different considerations by diagnosis, I definitely would refer you to that article. But I will give an example with spinal cord injury because I think it's an easy example to give, kind of classic things to talk about there, and one that certainly you would see. So these are things we know about, like if you're writing a detailed physical therapy prescription, you're going to be talking about your precautions, motor impairments, sensory impairments, so that people know that they're at risk for pressure sores, that they have bone fragility. So again, these are things to consider. Not every patient is going to have all these things. But if somebody has paraplegia and doesn't do standing or weight bearing, they're probably going to have at risk for fragility fractures, right? And that would be important to know for sports because you don't want not to limit them to say, oh, you can't do a contact sport. That's not it at all. But you want people to be aware, maybe try to limit something that is going to almost intentionally collide into that leg. And if they have swelling, that that should be one of the first things that's thought about. Spasticity is important to consider, especially with fitting of your equipment. And, you know, good control of that. Neurogenic bowel and bladder. I think this is important to know because things like at risk for autonomic dysreflexia, if bowel or bladder is off and that triggers autonomic dysreflexia, people should be aware of that. Thermoregulation issues. So super important, you're in a hot outdoor event, need to make sure these athletes are staying cool enough, they're misting, they're taking breaks, they're not overheating. Same thing with a cool environment that they're not getting hypothermia. And then autonomic dysreflexia, as we know, is an important topic to talk about. This is preaching to the choir. We know that the reason for autonomic dysreflexia is because of the sympathetic outflow in T6 through L2, which is why T6 and above is where it's most common. And just briefly going through it, noxious stimulus, afferent signal goes up, results in a sympathetic response causing vasoconstriction, which causes hypertension. And then the baroreceptors are like, oh no, they detect the hypertension. So they say, let's try to calm that blood pressure down. And they use the vagus nerve to try to do bradycardia and then try to come down to the rest of the body to say, calm down, it's just the bladder, but that's blocked due to spinal cord injury. So that's autonomic dysreflexia in a nutshell. And I know you guys had an excellent lecture on this recently by Dr. Solinsky, who's really a leader in the field for that. So I'm sure you learned from him, all the noxious stimulus below the level of injury are things to look for in an athlete. It could be poor fitting, like sled for sled hockey, you know, but we know bowel and bladder is the most common. From a pediatric standpoint, important to know cutoffs. So hypertension cutoffs are 15 millimeters of mercury above the patient's systolic baseline for zero to 12 years of age, and 20 above for greater than 12 years of age. And there's also separate cutoffs for when you would think about using something like nitroglycerin paste as well based on age. And so we know above the level of injury, you get flushing. Below the level of injury, I'm sorry, above the level of injury, yes, you typically get sweating, blotchiness, flushing, because the parasympathetic nervous system is kicking in to say, oh, calm down, all that sympathetic reply. And then meanwhile, sorry, the sympathetic system is doing things like goosebumps full of injuries and that chest pain and sense of doom. It can cause life-threatening events, as you guys are all aware, so it's something to take seriously, check the blood pressure, eliminate the noxious stimulus, and then consideration of antihypertensive medications may be necessary. The problem with nitroglycerin paste, now I'm not saying not to use it in kids, we certainly do, and I apologize, I can give you guys references on it, I did not put the blood pressure cutoffs for different ages, but that does exist, is that there really aren't any studies on dosing for nitroglycerin in the pediatric population, I think this is an area that definitely needs to have more literature, but the Kennedy-Krieger guidelines are half inch above the level of injury for less than 13, and then for 13 and above, one inch of nitroglycerin paste, and I provided the reference there as well. So boosting is actually intentionally triggering autonomic dysreflexia, so this can happen in sports where people clamp their foley or put a pin in their leg to give themselves that sympathetic surge so that they have better athletic performance, and that is definitely not allowed for IPC, and certainly not allowed for the general population, the local groups as well, it's dangerous and it's an unfair advantage. And then thinking about intellectual disabilities, just thinking about medical considerations, you have to kind of understand what the exact intellectual disability is, the most common one that people tend to think about when they're talking about sports participation is Down syndrome, mostly with atlanto-axial instability, so that C1 on C2 instability, that laxity there that could cause at-risk for a high cervical spinal cord injury, and then there's also cardiac comorbidities and ligamentous laxity. And so because we don't always know the underlying medical condition, we do know that in some ways that could present some danger because we might not know that there's a cardiac condition associated with a certain genetic type of intellectual disability because the individual may not know what their underlying cause is. If they know an underlying genetic condition, look it up, so you're not going to know all of these rare conditions, but look it up, and that's a principle to use throughout your career, no matter what you go into, because there might be other things to be aware of, so cardiac, pulmonary, endocrine, neurologic, other factors that should be considered. You're not expected to know everything, but if you aren't aware of something, it's good practice to get into to look it up to provide the best care for your patients. There's something called therapeutic use exemptions, so specifically like really for elite athletes, but this applies to all athletes who are participating in para and adaptive sports, which that basically means, hey, you know, maybe a benzo would be on a restricted list for patients, or maybe like Ritalin would be on a restricted list for patients, for, I'm sorry, not patients, for athletes, because is it being used for competitive advantage or steroids? Well, maybe it's being used for Duchenne muscular dystrophy, the steroids, and so you could actually apply for therapeutic use exemption to say, actually, this patient, this athlete is using this medication for a medical reason and not for an advantage. Injury rates in para sports, so it's similar to other sports, so wheelchair athletes tend to have more, it's rates, sorry, so the amount of injuries are similar to general population sports, and then wheelchair athletes, not unexpectedly, will have more upper extremity injuries, so shoulder, elbow, wrist, and so this can, you know, include lots of shoulder pain, rotator cuff issues, can include mononeuropathy, so ulnar or median, and then ambulatory athletes tend to have more lower extremity injuries, so this overuse patterns that you might see, or, you know, if someone has a prosthetic on one leg and not on the other, what are they doing to compensate on their unaffected leg that's causing more damage or more overuse? And then sprains and strains and skin injury were found to be most common, so a lot of this data comes from the Paralympic Games, and they're starting to do a really nice job of having databases and being able to report it, and so we know in winter sports, there's more acute injuries, just if you think about there's a lot of high speed injury, high speed games, like sled hockey, like skiing, so contusions, fractures, head injuries, summer sports tend to have a lot of those skin injuries, like friction injuries, like blisters, pressure sores, sunburn, super important to talk about, I always talk about that with my patients who have sensory impairments, like you might not feel it, but make sure that you're putting sunblock, especially on those areas you can't feel, but also everywhere, right? And then wheelchair track particularly has a lot of association with peripheral mononeuropathies, like median or ulnar nerve mononeuropathy. Also have to think about overheating, hyperthermia, hypothermia, just as we talked about earlier, so we know that that's the case that, you know, someone who has thermoregulation issues because of spinal cord injury might be at risk, but there's also patients who might be on certain medications that may result in heat intolerance as well. We know for injury prevention that the wheelchair propulsion pattern is shown to be important, and so Dr. Boninger has done a whole lot of research on proper techniques, so if you're not aware of those, I would definitely recommend reading some of his articles on it. And then there's been some studies on scapular exercise, so periscapular strengthening, pectoralis stretching, to try to really make sure that people are using the right muscles, but there's still not enough data to support whether or not this is effective. So I talked a lot about all that stuff for adults, but what about youth, and the fact of the matter is there's really no data. So this is the world that I plan on living in, and so hopefully we'll be able to get you guys some data soon, but we don't really know. Like, we don't know how growth affects, you know, youth athletes with disabilities. We don't know what injury patterns are. We don't know where these athletes are going to get their care for injuries. Are they going to anyone? Do they think that there's anyone they can go to? We talked about how people might be specializing in one sport because wheelchair basketball is the only thing available to them. Do we know if sport specialization in this population is an issue and is causing more more damage? I think about Little League and Little League rules for pitching. We don't have those same types of things for wheelchair athletes, and I do think that maybe we need to. So let's just talk a little bit about intellectual disabilities. So again, Special Olympics, it's the largest organization for children and adults with intellectual disabilities. It was started in the 60s by Eunice Kennedy Shriver because her sister, Rosemary Kennedy, had an intellectual disability, and I always like to point out to people there's more than meets the eye. So there's sports participation, so sports, local sports events. There's also something called unified sports, which I've been seeing more and more of recently, which is great. It's high school sport activities, so teams that high school students can participate in, and it's a team that's inclusive. So it's some people who have intellectual disabilities and some people who don't, and they play on a team together, and it's a really great opportunity, and it's through the school districts. And then there's the youth athletes program. So the traditional Special Olympics events are for individuals who are eight and above, and so kids who are two to seven, they have a developmental skills program called the young athletes program. Healthy athletes is just like that med fest I talked about, like the pre-participation group physicals, but there's also lots of programs. There's dental screenings that they do, there's vision screenings, there's mental health screenings. So Special Olympics is a lot more than just sports alone because we know that people with intellectual disability are at risk for a lot of medical comorbidities that a lot of it is due to poor access to medical care, and so that's why they provide a lot of free screening. And don't forget, like I mentioned earlier, there are elite games. So I think people often think of Special Olympics not as an elite organization, but there's all different levels. There's levels of people who just want to play for fun, and then there's definitely a track to do more elite games. Then there's the Center for Inclusive Health, which is a website that includes all different types of resources to make sure that health care is inclusive so people with disabilities get the opportunity to have the most optimal care that they can. So this is just a shout out to my colleagues here. So this is Dr. Chandon, Dr. Martin, Dr. Pham, Dr. Adamkin, and we all actually were together at the Special Olympics USA games in Seattle a few years ago, and we participated also in the inclusive health forum that they had with the Surgeon General there, and lots of people from Special Olympics International just talking about how we can make sure that health care is more inclusive for people with intellectual disabilities. So communication strategies when you're talking to somebody with an intellectual disability, and this comes directly from the paper, ask them about the best ways to communicate, talk directly to the patient, clarify information with the parent and guardian if you need to, but you know not walking in the room and just making the assumption that you're going to talk to the person's guardian first. Just like you would do with someone with a brain injury, ask questions one at a time. It should be simple language, easy to understand, giving enough time to answer questions, and realizing that some people may use alternative ways of receptive and expressive communication. Interpreters obviously should be provided, including sign language interpreters. You want a quiet clinic area, so decrease distractions. It's helpful to explain components prior to and during the execution, especially, you know, this is very common for someone who might have autism and might have a lot of stress, and if you explain step by step, they'll feel better. And then patient handouts should really use simple language, include visual components. Universal design really means that anyone should be able to access things, and maybe if one, like a handout for somebody who has blindness, it's not going to be as valuable as maybe other resources. You know, I have a good colleague of mine who does adaptive sports in the local area, and he always says if you email him something, it works really great for him because he has a program on his computer that can read the handout. So that's what he'll recommend for his physicians. And then for youth with a lot of distress during the visit, you may have to actually divide like a long extensive exam into multiple visits, and you might want to ask about what time of day would be best for them too. This is just a link to the pre-participation physical form, which is all here. This is the Special Olympics form. You could see, again, like I said, it's pretty thorough, and that's why Special Olympics does request that you use directly their form for clearance. I just wanted to put a quick shout out about alano-axial instability. There's a lot of misinformation and old information that's out there. So for someone with Down syndrome, they may have increased mobility at the alano-axial joint. It's a C1 and C2. The increased risk is present with Down syndrome, and there's a small but possible risk of cervical spinal cord injury. So how do you do the screenings according to Special Olympics? And consistent with, you know, most organizations including American Academy of Pediatrics, you're going to screen for signs or symptoms of cervical spinal cord injury or myelopathy at all, right? So you're going to do a good history and exam to make sure that the patient doesn't have any early signs like you would see with somebody with cervical stenosis, right? So like numbness, tingling, spasticity, weakness, coronation issues. And then routine x-ray in asymptomatic individuals used to be the standard of care. A lot of reasons for it not being the standard of care anymore, but it's no longer recommended as only if you have concerns. You're going to want to make sure you're thinking about hydration, nutrition, prevention of environmental heat or cold stress, because a lot of people with intellectual disabilities may need some cuing for these things and also may be on medications that will interfere with that. Sunscreen, as we talked about, and then sports specialization, I always think about that as well. And it may be the same case for individuals with intellectual disability who may have only one or two opportunities in their area. There's been very little, considering how big Special Olympics is, there's been very little actual research publications on injuries. And what's out there is that the rates are similar and the types of injuries are similar and, quote unquote, musculoskeletal and skin injuries are most common. But the research hasn't been as in-depth and hasn't given more specifics of it, so more research needs to be done on this. So again, what about youth? We really don't have much information at all. We barely have enough information on adult athletes with intellectual disability. We really don't have enough on youth athletes with intellectual disability. So this is another thing that, again, over the course of my career, I hope to work on and certainly hope to work with others on this area, because all those concepts we talked about with overuse and sports specialization are probably true here too. So here's just some virtual resources. Oh, I apologize about the misquote up there, but there's some virtual resources for our COVID world that we're in right now. And so I will definitely share the slides with you guys. But these are all websites right now that include a lot of them. I think most of them are free, Zooms and videos for people with disabilities to participate in sports or really physical activity and fitness programs at home. So the Disabled Sports USA is like, that's probably the biggest one, Adapt at Home. There's like about 10 different fitness programs every day for different times that people can participate in. Spalding has some too, Evolve 21, which is CP-related. Special Olympics has some as well. This information here is Foundation for PM&R through the athlete, sorry, through the ADA and whatnot created this website called Rx for Exercise. And it really is about how to prescribe exercise for people with disabilities. On that, I was actually asked to do a little bit of a video on how to counsel a kid about participating in an adaptive sport or activity in general. And so there's a little YouTube video there if that was helpful for anyone as well. So I know I'm a little bit over time, but I just wanted to say thank you again for listening. And here is my information. And if there's time, I'm happy to take questions. Thank you so much. This has been really great, very informative and helpful. And it's good to know that we don't have to all be boarded in pediatrics and sports medicine and whatever else to be involved. There are a lot of opportunities to be involved, even as a resident, it sounds like, or another trainee. Thank you very much for this. There are a couple of questions, but given our time limitations, I'm going to ask that those with questions reach out to you directly if that's okay. That's totally fine. Yeah, absolutely. Feel free whenever to reach out. Yeah. Thank you so much. And again, thank you for joining us today. We appreciate it. Okay. Thank you. And thank you everybody for joining us today. It was a couple of fantastic lectures today. Again, there's her contact information, mine and AAP. If you have any questions, please feel free to reach out. And that is the website there physiatry.org slash webinars for the ongoing schedule. We update it frequently. It also has a link to all of these lectures in their recorded format. So thank you. And we look forward to having you again tomorrow.

youth athletes with disabilities

inclusion in sports

pediatric rehab medicine

sports medicine

developmental disabilities

intellectual disabilities

physical disabilities

sensory disabilities

para sports

adaptive sports