Okay, well, welcome, everybody. Welcome to our session regarding advocacy for equitable access to physical activity in sport. This is co-hosted by two communities in our academy, adaptive athletes in sport and limb loss and amputation restoration and rehabilitation communities. And welcome to everybody. So this is our first joint session of these two groups, and this is our third session with AAPMNR, this is our third year, and our second one virtual. So welcome, everyone. So we have no disclosures, and we have a current panel of four speakers tonight, including myself. I just want to briefly introduce everybody. So I am the chair of the adaptive athletes, sport athletes and sport group for our academy. I am an assistant professor with physical medicine and rehabilitation at the University of Michigan. Majority of my practice is with the Ann Arbor VA. And I've had a long time interest in adaptive sports and really it grew for me out of seeing my patients who had multiple health problems and comorbidities and trying to figure out a way for my patients with spinal cord injury, head injury, and limb loss of how they can address activities that are appropriate for them and safe for them. And so that's how I became interested in the area of adaptive sports medicine and I'm able to practice that at the university and with the VA. I also helped to run our University of Michigan adaptive and inclusive sports program. We have Corey Wernimont. He is one of my colleagues at the University of Michigan as assistant professor and associate residency program director and has a specialty in spinal cord medicine. Also like to welcome Mary Matsumoto. She is the medical director of the regional amputation center at the Minneapolis VA. And Dr. Matsumoto runs one of seven regional amputation centers that are strategically placed throughout the country that have a huge impact on furthering the care and technology that we're able to provide our nation's veterans. So welcome. And we have also Nicole Verkylen. She is the founder of a nonprofit that is focused on advocacy and activism regarding access to physical activity and equipment for those with disabilities and her organization is called Forrest Stumpf. So welcome, Nicole. Thank you everyone for joining. So the purpose of our talk today is really thinking about exercise as a human right. And I've taken this directly from Nicole's campaign. I just like the phrasing of this. It's promoting equitable access to medical equipment and rehabilitations that facilitate aerobic activity for people with disabilities. And that's why we're here today. That's my buddy, one of my veterans that I got on the road. So I just love this picture. He came a long way after his amputation. So our objectives today, we're going to be covering several things. We're going to be talking about defining the roles of the physician advocate. So we, as we have physicians, what are our roles and ways we can advocate? I'll also be reviewing the adaptive sports equipment necessary for physical activity and participating in adaptive sports, including prescription and current resources. Dr. Wernimont will be reviewing the considerations for physical activity and adaptive sports in persons with spinal cord injury. Dr. Matsumoto will be reviewing prosthetic limb prescription and considerations for participation in adaptive sports and fitness. And Nicole will be reviewing current efforts in promoting equitable access to physical activity for individuals with disabilities and where she's going to discuss current barriers and recent legislative advocacy and review needed changes to insurance standards and policies for the expansion of ADL definitions. So I like this graphic because these are barriers that have been identified with persons with a disability who are thinking about, you know, starting some type of activity, starting a sport and the things that come up and you can see access to equipment is a huge one. Transportation, another biggie. But there are multiple layers here that have been identified to somebody who has a disability wanting to exercise. So the barriers are really kind of broken down from a physiologic standpoint when you think of, you know, the injury itself or comorbidities with the injuries, sequela of an injury, emotional as far as trauma, social isolation, depression, there's maybe potential lack of motivation in that category. And then the logistics, you know, transportation, equipment, programming. So those are kind of the baskets where you see, you know, all these different barriers may fall. So the answer is not an easy one. So in thinking about barriers and a little bit more specifically, you know, for those with disability, higher rates of obesity and chronic disease exist. They're less likely to receive exercise counseling from their physicians. I think that is one thing that we as physicians could improve and be more consistent with. But it also kind of goes beyond that and I'll get to that in a little bit. Also lower rates of employment and socioeconomic status. So then you think about that and how that would impact engaging in less physical activity as a whole. So I like this picture because it illustrates my job. So on the left, and for many years, I actually sat on a major medical and special equipment committee and never once in that committee that I sat, did we get to review a sports wheelchair or, you know, a hand cycle. Almost everything was a power scooter or a power wheelchair. And so I think about my buddy on the other side in the picture, and actually I was really excited because when I Googled images for this slide and just wrote or typed in veteran hand cycling, my buddy popped up. So I was pretty excited about that. And so I was thinking about, you know, how can I impact, you know, my patient's health and go from the left side to the right side. And so I feel like this kind of sums up kind of like the origin and then the destination of where we would want to go to. And so the tools, what are those tools look like as the physician advocate? You know, our job is to facilitate, you know, that is a natural part of what we do as physicians, facilitating the medical care, facilitating the rehabilitation plan, but even thinking beyond that. Also we advocate, you know, we are, you know, as we're requesting things for our patients, you know, we advocate for resources all the time and provide the medical justification for that and then educating. So really empowering our patients, making sure they have the information that they need to self-advocate as well, but also educating ourselves on what we can do and what's available. And a lot of what I've done has been just by, you know, really getting involved, learning about things and that's how I educated myself. So my role as a physician advocate, I will say that I wear a lot of hats in my experience in adaptive sports medicine. I have to say something about this picture. This was the summer at the National Veteran Literary Games. We were able to have it in a somewhat of a bubble, but a bubble in New York City of all places. So that's the top of the Rockefeller Center at Top of the Rock, and it was the first time they ever allowed any kind of sporting event up there. They closed the whole observation deck down and we could have two power lifting benches and our veterans were able to have their events up top away from the crowds, but it was pretty amazing. So exercise prescription is an obvious one, which Dr. Warnemont will be covering in greater detail. But I think that, you know, we make recommendation, go exercise, and then we will have guidelines that we want them to follow. And then activity goal setting, you know, we have rehab goals, we have activity goals. I think those are kind of natural to what we do clinically in our profession. But then thinking about program sharing program information. And I think that's where we as physicians need to educate ourselves as to what information, what programs are out there. How do we, you know, become the facilitator or doc connector. And that's where I found where I've been really able to impact things by making sure that my patients know about what is available, you know, locally, regionally, nationally. Sports participation evaluations. I think that's really important for you to offer a patient the opportunity to be assessed, to help them decide, okay, is this a safe event for me? Is this something I should be, you know, pursuing? And they should feel confident in wanting to pursue an activity or event. And so providing that service saying that, you know, you can evaluate them before they embark on an endeavor or training is very helpful. And they may not think to ask their physician to help them in this pursuit. And I think it's really important that they know that because it is one of the barriers that was highlighted, fear of injury, you know, they're not sure, they're afraid. Equipment prescription. And I'm going to get into that in a little bit. And then sports events coverage, which kind of one of my favorite thing is getting out in the field and being able to help at events locally. And I've been able to do that nationally as well. So thinking about beyond the clinic, one of the things that I provide is quality and safety oversight of our local adaptive sports program. And also looking at our medical policies and protocols. I couldn't talk about medical policies and protocols without having a picture of COVID screening. Because any sports event period, any event period, but, and then particularly adaptive sports, you think, what are, you know, is this a higher risk population? Is this going to be something that we can all do safely? I think that the physician participation in this is really important. I think it gives the patient's confidence to participate in a program. I think that it gives, it helps raise the quality of the programs that are existing. Having that level of expertise or oversight to collaborate with a physician, I think that's really needed. We see that at the highest levels when national governing body is at the Paralympic level, but even our local programs, I think benefit from that because then you can feel confident recommending to your patient that we have a, you know, well-run quality program that has your safety in mind as you're attempting a new activity or want to continue, you know, pushing your physicality. And I also help with program development and management. And part of that is trying to identify what people are interested in. You know, not everybody, you know, necessarily wants to, you know, do any one given sport, you know, you kind of have to know your audience of, you know, what's in demand as opposed to, you know, and that can be limiting. So that's where we're trying to expand what we have to offer from a program standpoint. Volunteering with programs, understanding the sport, understanding the mechanisms of injury. I think that's really important. I've learned a lot that way. And also educating non-adaptive programs about inclusivity. I think this could have a huge impact. And I think that you're going to, I think we should be seeing this more and more really. And one of the things that we did this summer locally is that our local Parks and Recreation Department for the city invited us to come and talk about adaptive kayaking so they could figure out how to expand their services. And so that was a really great way to kind of expand and, you know, have further reach. Of course, some adaptive programming for the, for patients who have a higher level of, you know, equipment need, or maybe for the novice in an activity, you know, we might be more hands-on where we have a recreation therapist and different staff available versus just, you know, coming to your local, you know, park and just signing up for an activity. But there's of course a spectrum, you know, of programming. So this is where I want to segue into equipment. So you can't talk about adaptive sports and not mention equipment. And I would say that, you know, my mentor, Ken Lee, the director of the Wheelchair Games always said that 10% of what we do is medical and 90% is equipment. And so loading and unloading equipment, fixing equipment, cleaning equipment, looking for equipment, shopping for equipment, moving equipment. And so this picture is one of our UMaze events, loading up the trailer. And that's Kate Crawley, our rec therapist on our board. And we were so proud of ourselves for managing this trailer. So I can add that to the list of my hats that I wear. But then I just, yeah, this, I want to segue into adaptive sports equipment prescription. And so, you know, this is, you know, we're so accustomed to thinking about, you know, basic, you know, mobility. So we're thinking, you know, the wheelchair, the manual wheelchair, the power wheelchair, what are you going to use every day? So really having an awareness and a sensitivity to thinking, okay, what else, if I'm going to make a recommendations or help facilitate somebody to pursue, you know, fitness and sport, what kind of equipment are they going to need? So I just wanted to go over this. And I think a lot of this is going to come second nature to what we do for a living. But, you know, sports kind of has its, you know, specific lens. So justification for prescription, you know, recreational sports equipment. This is really coming from VA guidelines. So the VA has, you know, national resources to provide veterans with adaptive sports equipment. So some of these definitions come from the policies that govern this. So recreational sports equipment may be considered for issuance for a person who exhibits the loss or loss of use of a body part or function for which the adaptive equipment is indicated. And the equipment must be for the nature that is specifically compensates for the loss of use and is designed for individuals with physical disabilities. So you think about adaptive sports equipment, what does that encompass? That's very, very broad. Oh, Kenley chimed in 9%. He was talking about equipment and he chimed in 9%. I didn't see that. That's funny. Hi, Ken. So, you know, we're talking about, you know, sports wheelchairs of all types, hand cycles of all types, adaptive kayaks, you know, that can include different accessories that come with that. Sit skis or bi skis, you know, a hockey sled, again, prosthetic limbs that are sports specific, a throwing frame for throwing activities, a power lifting bench. I mean, there's a whole variety. These are kind of like the larger items that come to mind when we're thinking about adaptive sports. And so in an individualized evaluation, you know, we want to include medical diagnosis, prognosis, function, limitation, goals, ambitions. These are things that we would normally, you know, obtain in a patient history. But specifically, you know, you're going to be documenting sport pursuit. What are your physical goals? You know, being more specific I also think helps the patient then identify what they want to do, as opposed to just be more active. I mean, we know with goal setting that, you know, being more specific is helpful. And then thinking about musculoskeletal function, neuromuscular, pulmonary, and cardiovascular health, of course, you know, pursuing any kind of physical activity, and then skin condition, especially if we're thinking about equipment that's going to come in contact with the patient. So considerations for the prescription, medical clearance to participate, experience exposure to the activity, receiving adequate instruction on its use, and then, of course, the logistics of transport. So I know I'm a little bit over time here. My apologies. So in our documentation, you want to talk about the frequency and duration of the sport. So if they have a participation log, trial of loaner equipment, is there consistent exercise by an alternate means? Are they a member of their organized activity or team? Is there consistent participation? What is their level of participation? Do they participate in sports camps or clinics? Do they have availability or consistent opportunity to access this particular pursuit? Equipment is meeting their identified goals, and the device addresses goals relative to their skin protection, support, comfort, performance, and safety. And all of these things, even though in the VA we have a mechanism to document all of this and put it up for review on a prescription, all of these elements are still very important if you are helping a patient apply for a grant. Helping somebody, if they are requesting a piece of equipment, you as the physician have supported this. This is why it's needed to help support that person's health and goals. So the clinical oversight of the physician. You think about the evaluation, final delivery, fitting, and education. And that could be ongoing, you know, as far as follow up for your patients. Sports wheelchairs, just some pictures. I'm going to just kind of breeze through these very quickly. I just wanted to highlight, we have actually a really neat program in Detroit, it's a bike share that includes some adaptive cycles. And then Dr. Matsumoto will be getting more into the details of sports specific prosthetic limb. So I definitely want to share this slide and want to put this up, probably try to send it out on our community groups. These are different groups that allow or that have grant programs where an individual can apply for equipment. And I think our justification documentation and support, you know, will help that pursuit. And these were just from the Move United is a large national nonprofit for adaptive sports programs. And this list is also available on their website. Okay, those are my references. And I'll go ahead and stop sharing. And sorry, Dr. Warnemann, if I went over your time. Hold on there. There we go. Dr. Tang, can you give me a thumbs up? You got my. You're good. Awesome, fantastic. Thanks for having me guys. So I'm Corey Warnemann. I'm one of the SEI positions here at the University of Michigan. I'm gonna touch on things from physical activity a little bit in sport from the SEI world. Just quick overview, I might just kind of talk about some of the recommendations, where we're at in regards to the SEI community, in regards to those recommendations, some of the barriers, and then maybe some suggestions or at least some thoughts on overcoming some of those barriers. So with that being said, start off with, I kind of made a couple charts looking at fitness, strength and cardiometabolic health, and just brought in the general recommendations from the various groups. As you can see, first line is just for the general population through the World Health Organization, then looking at people with physical disabilities as recommended through the FDA. And then the last three recommendations are all for spinal cord injury community specific. So American Congress of Rehab or Medicine, American College of Sports Medicine, and then ISCOS, the International Spinal Cord Injury Society. So in regards to fitness, as you can see, it's pretty universal as far as the recommendations go, moderate to vigorous activity in regards to intensity level with 150 minutes a week, if it's moderate. And moderate, you can think of on a 10 point scale being a five to six or something where if you're exercising, you're able to hold a conversation, but you might not be able to sing along. Maybe good for your partner, I don't know, but you can still talk. Whereas vigorous, now you're starting to get a little breathless, it's hard to hold that conversation. So again, more vigorous activities, you don't have to do it as much, but those are the kind of the recommendations with if you're able to kind of hit those higher levels, 300 to 150 for your moderate, 150 vigorous, noted better improvements or more benefits. So ISCOS, I think recognizing some of the challenges in regards to the SCI community, recommending at least two times a week of 20 minutes. So that's for fitness. As far as strength goes, again, at least two days, if not more, a week of moderate or high intensity, moderate being about 50% of a one rep max, 80% for vigorous. And then in the SCI population in particular, looking at hitting either major upper extremity exercises or at least the major functional muscle groups that you're hitting two times a week at least. Now, as far as cardiometabolic health goes, no one really has any recommendations outside of our leaf guidelines, except for ISCOS released on their position paper, moderate to vigorous aerobic exercise, at least three times a week. They made this a conditional recommendation, recognizing that there was some uncertainty whether or not actually hitting these levels actually provided some kind of optimal cardiometabolic health difference, or if it was just really kind of given at least a statistical significance in some of the measures like lipid profile, inflammatory markers, fat mass. But regardless, you hit some of those and you're doing some good for the patient. So it's not gonna do any harm, but this was a conditional recommendation. So those are our kind of recommendations at least in the SCI population. So kind of how are we doing? Well, the unfortunate reality. So when you look at sedentary behavior, when I say sedentary behavior, anything that's less than 1.5 METS, or in essence, just generally sitting or lying down. One group, Nightingale, back in 2017, looked at 33 men and women with spinal cord injury at least one year post-injury. These were all individuals with paraplegia. So understanding that those with tetraplegia are most likely gonna be even more sedentary than this. They basically had them wearing devices that was measuring heart rate and also had an accelerometer for seven days. And they basically found that these individuals about 87% of the day were in a sedentary state. Another group in the Netherlands looked at 47 individuals who were incomplete spinal cord injury and ambulatory. And again, had them wear accelerometers for about a week to see how much sedentary behavior and that they had both post-discharge from inpatient rehab and then about a year out. They were looking for the differences, but I think just seeing the amount at discharge and at one year out speaks volumes. So kind of with the context, knowing that sedentary behavior of 540 minutes a day increased risk for all cause mortality. So having that in the back of your mind. At discharge, again, these are ambulatory individuals with incomplete injuries. Keeping in mind that those with higher level injuries, complete injuries are more likely to have even higher levels than this. But at discharge was about 732 minutes per day. And at about one year is 665 minutes per day. They compared to this, not in their study, but to various other studies in which able-bodied individuals in the same areas were closer to that 474 to 519. So much more sedentary behavior altogether in the SCI population. When you look at overall physical activity, a different Dutch study looked at 461 patients with 18 chronic physical conditions, of which spinal cord injury was one of the chronic conditions. They had 16 folks with a spinal cord injury. The same time they also had 96 able-bodied individuals and all of the individuals were accelerometers for two days during the week. And so they were looking at kind of overall physical activity, which could include walking, wheeling or non-cyclic activities. What they found was overall the trans-tibial amputation, those not traumatic or vascular, our SCI population and those with myelomeningocele who are wheelchair dependent, all had by far and away the lowest levels of physical activity. In the spinal cord injury community, it was about 3.4%, which equates to roughly about 45 minutes a day of actually having any physical activity at all. That was about 34% of the able-bodied cohort. Interestingly, with the same study, they actually, before they ran the study, they put a survey out to rehab physicians in the area who were familiar with the various 18 chronic conditions. And they surveyed them and they wanted to know kind of what they estimated the percent of able-bodied individuals that these folks would have. So rehab physicians who knew spinal cord injury actually predicted that these individuals would be at about 63% of what an able-bodied individual was at, which just points to the fact that we're even, I think as a group, we understand that they're not getting as much exercise, but we're even overshooting what they actually truly are doing. So found that interesting. Going to leisure time, physical activity. So just anything that's kind of done in your free time, looking at the number of minutes per day, knowing that the increasing leisure physical activity. So the more you do in your free time, the less risk you have of morbidity and all-cause mortality. And it's recommended that you have about 60 minutes a day, at least, at mild intensity. So the study was done in Canada. It was a telephone survey with 695 individuals with traumatic spinal cord injuries. And what they found is that in the spinal cord injury community, there was a mean of 27.14 minutes per day of leisure time physical activity with a whopping 50% reporting zero, none, leisure time physical activity. Able-bodied individuals is closer to that 12%. So again, well, well under the kind of recommended amount. Sports participation. So one third of the people without physical disabilities do not participate in sports. Again, it's, you know, sports isn't for everyone. We think, I think it's fantastic. I think a lot of people here think it's fantastic. Well, it's not gonna be for everyone. There's other ways to get exercise, but it's certainly a great avenue for a lot of people to either develop, either have exercise, just get out, socialize or whatnot. So one third without physical disabilities, two thirds of people with physical disabilities do not participate in sports. Again, speaking to some of the limitations. So kind of transitioning and looking at some of the barriers. So certainly in SEI, there's all kinds of physical barriers or intrinsic barriers, paralysis of itself just with the physical ability to do it, decreased efficiency of O2 uptake. Certainly anyone that has a higher thoracic cervical injury, there's respiratory compromise that affects it, higher thoracic cervical again with autonomic dysfunction, temperature dysregulation. So these are all things that those individuals have to take into consideration as well as we also have to take into consideration in regards to a prescription and preparing patients for it. Certainly there's a plethora of extrinsic barriers, which I know Dr. Tenney's already kind of alluded to a little bit as well. Facilities, in particular facilities that have adaptive equipment, the setup assistance that might be required, whether that's help transferring onto a bench, having their hands kind of placed into adaptive gloves, that's gonna be able to hold onto equipment, whatever it may be, being able to have someone that's able to provide some of that physical assistance. Transportation for anyone that's requires a wheelchair for their physical mobility, certainly time. When we think about it, it's you, me, everyone on here, I'm sure it's really busy through the day. It's hard to try to squeeze in 20, 30, 60 minutes of exercise in a day. Now you take someone who is spending maybe 45 minutes, maybe an hour on their bowel program, getting ready in the morning is another additional 30 minutes, maybe 15 minutes more than what we take and you just try to cram all this in and you just, you have limitations. So the whole time barrier is tough. And then certainly the cost of sports equipment, especially in the private sector. Looking at perceptions of barriers. So actually Dr. Skelza now over at Craig Hospital, formerly at the University of Michigan, along with a couple of our other providers, did a study back in 2005, looking at perceptions of what was kind of getting in the way or perceived barriers for exercise. I highlighted a few. So things I thought were interesting of this, would you like to begin an exercise program? A whopping 73%, yes. If you actually go above that, I didn't highlight that, but do you feel an exercise program could help you? 80%. So a lot of people recognize that it's important, but it's trying to get us there. If you look about concerns about exercise, so cost is a concern, knowing where to exercise. I didn't highlight these, but I think pointing out, so the top two, lack of motivation, lack of energy. So that's somewhat on us to kind of help facilitate or find some kind of meaningful way for them to hopefully be able to engage and find something that's going to be enjoyable, or at least for us to kind of facilitate that. Of interest, this study was done in the Ann Arbor area, which a little bit more fluent, a little bit more resources. You know, if you compare this to, there was another group in Chicago back in 2000, they actually looked at barriers for African-American women in the inner city area. And you start looking at that study in a different population, and now you start looking at cost, 84% of the people felt like that was a huge barrier for them. Lack of transportation, huge barrier, fear about leaving home, big, big barrier. So depending where you're at, some of these barriers pop out even more. As far as barriers to actual sports participation. So this was a systematic review looking at 52 articles, 27 of them that focused on spinal cord injury. So they were looking at themes, themes that were barriers, and they divide them out into personal and environmental. So in regards to personal barriers, disability and health, not shocking. Lack of energy, we talked about fatigue, lack of motivation in the last slide kind of fits in. Environmental barriers, lack of facilities, lack of information about sports, lack of sports possibilities. So some of this is more just kind of education. Certainly difficulties with accessibility, personal facilitators, fun fit, not a lot different than I'm sure you and myself if it's gonna be enjoyable, we might do it. If you're really motivated, you're gonna do it. Someone who wants to improve might do it. Interestingly, this study looked at both and they actually broke it up in between kids under 20 and adults over 20. And the one thing that kind of crossed both sections in regards to all of these barriers of facilitators were environmental facilitators. So social context, being able to do this with other people, which we'll be touching on here in just a second. So our role as far as physicians, healthcare providers. So only 18 to 42% of non, so this is non-disabled patients report receiving any advice to exercise from their physicians. When a physician advises exercise or provides advice for exercise, and that's coupled with an exercise plan, patients are two times more likely to exercise. Compliance bumps up to three times if you have a plan and you actually have regular follow-up with them. Of note, that same group that was looking at that last or at the various barriers found that 47% in the SCI world reported physician had recommended an exercise program, meaning over half had not been recommended to do any form of exercise program, which is a problem. That's something that we as a group need to be able to fix. So there's lots of effective means for exercise, which is kind of beyond the scope of this talk that have shown to be very effective with providing physical activity for individuals, certainly including sports. So I'm not gonna go into that in detail right now. In preparation for a different talk I did, I actually reached out to a few of the facilities kind of nationwide, just to kind of see how they were doing things. So this is only a few. I'm sure there's lots of interesting programs that are out that would be terrific at some point to kind of collaborate and kind of see how everyone's doing it. But just to give a little breadth of it. So Kessler actually has a shared outpatient gym space that was renovated not that long ago, in which they have a cost, but people can come two, three times a week and they have a variety of machines that are adapted for individuals with spinal cord injury. Another kind of unique program, so Ohio State actually partnered with their local park and rec department to kind of come up with an adapted gym, fitness that's little cost to the patient. OSU, I don't think had to put in a lot, but they were able to kind of come up with this unique way to provide opportunities for individuals with cord injuries to continue with their physical activity. They also have their own adapted sports institute as well, that's very robust. Craig Hospital certainly has all kinds of funds that they can provide this full service wellness gym. Cost isn't too bad. They're supported by their Craig Foundation scholarship. It's also supported by PT's exercise specialists and various aides, which would be terrific if we all had those resources. But it's a terrific program, just maybe not available for a lot of other places. Certainly here at the University of Michigan, Dr. Teniori touched on our UMaze program, which she's on the board, which has been a terrific way to get our community involved. We also have an adaptive sports and fitness program that's more directed toward our collegiate athletes led by Dr. Oklami and Dr. Oh, who's been building that up. So yeah, even a little bit more competitive for that collegiate based, hopefully to then kind of continue to build our program with our community. So my last thing that I wanted to touch on here just for a minute or two is virtual streaming or virtual options for providing exercises. This was a 2021 review in which they were starting to look at what's being considered for virtual exercise program. We're just getting through the pandemic, lots of people with or without physical disabilities kind of transitioned to virtual options. We have lots of barriers that I already kind of mentioned to be able to get to different facilities. Is this a great option or not for individuals? There's multiple different ways to be able to provide virtual programming, simple unidirectional, which is just really just a webpage mobile app, something that kind of gives instructions on how to do. That advanced unidirectional, which for those Peloton folks out there, if there's any of you that do Peloton, this is that kind of on-demand, they have the class, you have an instructor, they're leading you through it, it's just not the back and forth versus the multidirectional, which is live streaming and then you're actually interacting with the instructor while you're going. So that overcomes some of our transportation infrastructure barriers. It provides potentially this facilitator with improving kind of social contact. There's five ongoing trials right now, three involving real-time participant monitoring, two looking at high intensity interval training. So looking forward to kind of seeing those kind of coming out and see how they hopefully provide maybe this alternative option. My last thing that I kind of wanted to mention, which sometimes you prepare for a talk and you learn something yourself. So literally I sent this presentation over to Dr. Tinney and Dr. Tinney said, hey, have you ever looked at this and would you mind talking about this? I had no idea what it was. And I have created my own dot phrase to start sharing with all my patients. So this moveunitedsport.org, yes, thank you, Dr. Tinney, provides a plethora of on-demand and live exercise opportunities that are all virtual programming. This is just kind of a small set of a couple of different options I just pulled off real quick. There's 48 on-demand classes that have a huge range of different exercise programming that they can do. This is just a quick sample or snippet of some of the virtual live classes that an individual in a wheelchair, not in a wheelchair, that they can participate from home. And then this is just a quick snippet of the upcoming exercises or the upcoming live programs that they got coming up here. So a wonderful option for individuals from home addressing some of those barriers, hopefully getting them more active and hopefully then that facilitates and maybe get them a little bit more involved with kind of the sports programming down the road as well. So it's our responsibility to kind of know where some of the barriers are. It's our responsibility to continue to kind of try to break some of these barriers, learn about other options that can hopefully improve their ability to participate and in the end, hopefully making them a little bit healthier. So with that said, I will transition and stop sharing on my end here. Oh, hold on here. All right, are my slides up? Great, thank you. So I am going to be talking about amputation rehabilitation and adaptive sports. Okay, so I'm going to talk briefly about my approach as a physiatrist in an amputation rehab clinic in terms of getting patients involved in adaptive sports and fitness, as well as prosthetic prescription considerations to facilitate participation. All right, so participation in sports and recreation as discussed has physical, psychological, and emotional benefits for our patients. So it's important to address this as part of their rehabilitation after limb loss. Studies have reported a wide range, 11% to 61% of participation in sports in individuals with amputations. They're more likely to participate in sports if they did so prior to amputation. With younger age and non-vascular cause of amputation. The most common sports in this population are swimming, fishing, golfing, cycling, and fitness. So in the picture there on the bottom is George Iser, who was the first Olympic athlete with limb loss back in 1904. He was a German gymnast and he won six medals. And then in the top picture is Melissa Stockwell, who is a Paralympian triathlete and veteran. So as we discuss the clinical approach, I'd like to highlight the important role of the interdisciplinary team in this process. So I work with a prosthetist and they provide key input into prosthetic prescription. And these specialized cases in terms of componentry, suspension, socket design, also the recreational therapist has the most expertise in terms of equipment options, can arrange fittings and trials with vendors and has the most knowledge of community organizations, resources, and events. Our physical therapists and occupational therapists can provide input into a patient's ability to safely and successfully use different activity-specific prostheses and may be involved in the training with these prostheses. And then my role as the physiatrist is to put the input of the whole team together to determine a plan for participation with adaptive sports, equipment, prosthetic, prescription, taking into account also the patient's medical and functional history and physical exam. And this is a picture of the great team I work with here at the Minneapolis VA. So the first step in participation in adaptive sports is to find out what the patient's goals are. Oftentimes they tell us this directly during the clinic visit. They say, I want to get back to running or I want to dance with my partner at our anniversary. Other times you elicit this information by asking about hobbies or activities or if there's anything that they've wanted to do that they haven't been able to do since their amputation. And then once you know what the goal is, it's important to flush it out. Dr. Tinney talked about the importance of having more detailed goals. And I think that really helps in terms of determining what equipment or what prosthesis is going to help them best achieve that goal. It also can help set realistic goals. For instance, oftentimes someone may say, I want to get back to running. And then I usually ask when is the last time they ran. And sometimes it was a decade before their amputation. So at that point, we usually have a discussion about whether that is a realistic goal for them now. And then for instance, in the case of running, I also always want to ask about what distances they want to run, how often they're running. Are they wanting to jog or sprint? You know, one time a patient told me that he wanted a running prosthesis. And then as we talked about it a little more, his goal was to be able to run in the yard to play with his children. So certainly that would be a different prescription than a patient that was wanting to sprint. And then in terms of like a swimming or water prosthesis, we also want to ask, are they just wanting to walk in the water, walk into a lake, or are they wanting to actually swim, just get on a boat, scuba diving or snorkeling? Because again, this influences our decision-making in terms of what they need with a prosthesis. If they say they want to go to the gym, then ask about what exercises they want to do or what equipment they want to use. For instance, if they want to do squats, then you need to think about that they'll need a lot of knee flexion in their prosthesis. Hunting is another one that comes up often here. And then again, is it, are they going to need to be walking in the woods on uneven terrain? Are they planning to hunt from like a car? I had one patient that wanted to, needed to lever himself up a tree in a tree stand in order to hunt. So with that information, you can decide with the input of the team, what is the best approach to meet the goals? It may be that the patient will be able to use their everyday prosthesis. For instance, I don't often prescribe like a golfing activity specific limb, but I may prescribe a torsion adapter to help with the rotational movement with swinging a golf club. If they want to ride a bike, I would try to avoid using a suspension sleeve that's going to limit knee flexion and hinder the ability to pedal a bike. So you consider their activity goals, you know, in the prescription for their everyday prosthesis. Another recommendation might be to not use a prosthesis for the activity. So if a patient is wanting to swim casually, I usually recommend that they don't use their prosthesis because it would hinder them, you know, more so that help them. And then for skiing, there is the option to use one ski and ski poles like you see in the picture there. But you may decide that the patient needs an activity specific prosthesis or componentry. So often this would be for running, but it may also be a swimming prosthesis if they want to use a fin for snorkeling or scuba diving. Other activity specific prostheses could be like a skiing, ice skating, which we see in the top right picture there, weightlifting. And then oftentimes for these, you'll be using activity specific componentry such as a running blade on a running limb or a foot that can plantar flex for a water prosthesis where you're going to want to add a fin. An important point is that you don't have to, you know, go immediately to an activity specific prosthesis. Oftentimes the patient might be able to start trying to do the activity with their everyday limb so they can put an ice skate or a ski on the everyday limb and to start with, and then if that doesn't work or they progress beyond that, then move to an activity specific prosthesis. I also want to mention insurance considerations. In the VA, we have the ability to prescribe activity specific prosthesis in addition to an everyday prosthesis. Medicare and other private insurance don't cover an activity specific prosthesis. Talking to a colleague who works in a non-VA amputation rehab clinic, she said that the route she takes is to have the componentry covered as if it is for their everyday limb. And then, or the best option may be for the patient to use equipment to achieve their goal, which Dr. Tinney talked about earlier, wheelchairs, hand cycles, sit skis, sled skate. And then finally, I focused mainly on the lower extremity population, but there are also a lot of options for activity specific prostheses and adaptive sports in the upper extremity population. You know, there's definitely a lot of activity specific terminal devices. We can see here that there's, you know, in one picture it's one that you can attach to a bicycle handle or to a golf club, to hold a basketball, even like tools that you can attach as terminal devices, like in the picture here, a hammer. And sometimes, you know, to achieve the goals, the patient may be using both a prosthesis and equipment, which we can see here with this patient who is a bilateral transradial, who had bilateral transradial amputations. So he is using his myoelectric prosthesis to hold the handles on a recumbent bike. And then he has foot brakes on it because it was too difficult to operate the brakes safely with his prosthesis. And then in the other picture, he is again using the prosthesis with an electric fishing reel to meet his goal for fishing. So. That wraps up my presentation. All right. I'm the last one here. I'm excited to be with all of you guys today. My name is Nicole Verkuylen. I'm the founder of Forest Stump, a nonprofit advocacy organization dedicated specifically to what we've been talking about here tonight. And that is advocacy for equitable access to physical activity and sport. And I'm going to go in and kind of talking a little bit about my story, how we founded Forest Stump, defining the problem a little bit. I think Dr. Wernimont did a great job at defining that with a number of different statistics. So hopefully I won't dive in too much there. Talk about the work that we've been doing from an advocacy perspective and how you can join us to help. So I'm an amputee myself. I lost my leg to bone cancer when I was 10 years old. And my experience getting access to prosthetic technology has been very difficult. It hasn't been necessarily the case like Dr. Matsumoto shared in terms of being able to talk about my goals and what I wanted to be able to do. It was really I came in, got a basic walking prosthesis, and that was it. You know, as a 10 year old, I wanted to be able to play in the water with my friends. I wanted to be able to run without limitation. And growing up, I was severely limited in the prostheses that I had access to. And that was because anything beyond a basic walking prosthesis is considered not medically necessary or a convenience item and was denied over and over again by my insurance. But I was an athlete prior to my amputation and wanted to still be an athlete after my amputation. And so I continued to try to be as active as possible, ended up breaking my feet constantly when I got into college. And after college, I was training for my first half marathon. I was breaking my prosthetic foot every six months running on a walking leg and ended up developing a sacral torsion pelvic asymmetry, basically just severe back pain, was running my pelvis out of alignment and eventually went to my prosthetist and started talking to them about, you know, hey, what can we do? What kind of prosthesis can we make that's going to be covered by insurance? And that will allow me to run at this level that I want to. And we ended up going through 26 appointments over the course of a year. And I ended up with the exact same prosthesis that I'd had for the past five years. And at that point, it really was the kind of the straw that broke the camel's back for me. And I started talking to Natalie Harold, who's a CPO who was doing her residency at the University of Michigan. And I was like, hey, you know, what can we do about this? This is kind of crazy. You know, I'm 25 years old. I've been an amputee now for the majority of my life, and it's not going to change. I'm going to be an amputee for the rest of my life. And I want to be active just like everyone else. And so we started to put our heads together and thinking about, you know, what we could do and kind of starting a movement for change. And that's where we decided to do a 1500 mile triathlon down the West Coast, starting in Seattle and ending in San Diego. We called that journey Forest Stump, which is the name of our nonprofit now. And we filmed a documentary of that journey, swimming, biking and running for two months. And really kind of the big question was, you know, I want to take this on. I have the drive, the passion and the will to do it. But is my prosthesis going to survive the journey? So if you guys are interested in watching that film or sharing it with your patients, you can find it at this link and I'll share it at the end as well. After that journey, I went to the Challenged Athletes Foundation, which is based out of San Diego. And to my surprise, they granted me with my first ever running prosthesis. And as you can see here, that's me kind of holding it up. And then I went on and did a 10 week health policy and advocacy fellowship in D.C., got to meet with members of Congress to try and understand what we're doing about this, how we're trying, how what's being done. Are we trying to expand access to assistive activity specific technologies? Found that that wasn't the case, that there's kind of some kind of we're 30 years behind in many of the policies that are going on right now. And then started to kind of take my own athleticism to the next level and was able to join up with a team of amputees in Ecuador. And we climbed and summited Cotopaxi together and 19,347 foot volcano, which I never thought in a million years I would do that in my lifetime. But with this new running blade and the ability to take my physical fitness to the next level, it was finally an opportunity. And then I had the opportunity to train with Team USA as part of their Paratrofon development team and won the national championships in 2019. And all of that to say that, you know, truly having access to a running prosthesis has changed my life. And to be able to explain what it feels like to run with a running prosthesis in comparison to a walking leg, it feels like I have my leg back. I mean, that's the amount of energy return that it provides in comparison to a walking leg. Basically, a walking leg feels like you have a brick attached to your foot and you're trying to run on that. So severely, significantly limiting. And now that I have a running prosthesis, I definitely will never go back. And I want to make sure that other people have access to the appropriate prosthetic technology and adaptive sports equipment that they need to achieve their own goals. And so that's really why and how we founded Forest Thump to begin with and asking ourselves this question. You know, we are in this particular world right now by chance. Why do we think that this is a good spot? Why can't we imagine that there are much better places? And I think the VA has done an amazing job at expanding their policies to provide access to a secondary prosthesis, an activity specific prosthesis. So if the VA can do it, you know, why can't we imagine a future where Medicare, Medicaid and private insurance companies can do the same thing? So that's what we're specifically advocating for within Forest Thump is kind of the equipment side of things. So kind of digging into the problem. Dr. Renamont shared this, you know, in all of his presentation. You know, the problem in one sentence is that physical activity and sport is out of reach for the disability community, plain and simple. And for those who are surveyed in terms of those with an amputation, about what are the barriers for them? I guess the statistic shares that eight in 10 of those people with amputation shared that it was a lack of prosthetic availability and inadequately designed prostheses that were the primary barriers for them being able to participate in sports and athletics. And, you know, that's a huge percentage, 80% of people with amputation saying that it's prosthetic availability, that's the problem. And that's really what Forest Thump is focused on. Our second, once this loads. The second thing that I wanted to share here is just kind of the prevalence and magnitude of what we're looking at. You know, one in two, 50% of adults with disabilities get absolutely no aerobic physical activity. I think this was another statistic that Dr. Renamont shared as well. And then if you're looking at children, population of children with disabilities, they have a 30% higher obesity rate than their peers without a disability, which is significant. And when we're looking at the population of people with disabilities, there are 21 million people with a physical disability in the United States. So all of this to say that the prevalence and challenges that people with disabilities face, you know, it's not just me, it's a significant millions of people that are going without access. And I kind of wanted to throw this in here as a little ode to University of Michigan, go blue. If you've ever been at the big house, this stadium holds 110,000 people. And to put that into perspective of the number of people with a physical disability in the United States, you'd have to fill the big house 182 times. And that's a lot of people, the magnitude of this issue. So what we're looking at here is not something that can be solved by charity or any one specific organization, but it's something that needs to be tackled from a systems level perspective and from an advocacy perspective. And Dr. Tinney shared some of the charitable organizations that are out there. Here are some ones as well that I've worked with. And although it's really important that you work with these to get your patients what they need now, they're not the solution for long term and looking at things from a systems level perspective. And for those of you who are familiar with the Americans with Disabilities Act of 1990, that was passed to end the historic dependence on charity that people with disabilities often face. And I promise to end that. So that's something that we're looking at from an advocacy perspective as it relates to this specific issue of assistive technologies and activity specific prosthetics not being available, that we shouldn't have to rely on charity to get access to those. And when we talk about the benefits of physical activity and sport, sometimes people might say that, you know, sport is a luxury or it's something that's a convenience. But these are all the things that physical activity and sport provides to someone. And so when we're talking about not having access to physical activity, we're also talking about not having access to all of these things, being able to help you sleep better, help you relax, you know, managing depression, anxiety and stress, being able to promote social skills, being able to improve cognitive function. These are all of the things that we're denying the disability community by not allowing them to have access in the same way or in equal opportunities as able-bodied individuals. So all of that to say, my story, I am not the exception. I am the rule that someone with, whether they're born with a disability or acquires a disability, that in their lifetime, they are going to struggle to have access to physical activity. And this is something that we need to change. So from an advocacy perspective for SUMP, our mission is to promote adaptive sports and fitness devices for people with limb loss and other physical disabilities as medically necessary healthcare. So we really believe that focusing on the equipment side of things can have a ripple effect across the entire system and that it is the primary barrier that we face currently. So I wanted to kind of dig into that kind of medically necessary concept and looking at why physical activity is not being considered that and that we should really challenge that. So for example, if exercise is not medically necessary, then why are common sports-related injuries routinely covered by insurance for able-bodied athletes? And I think the biggest one to point to is ACL injuries that are commonly one of the most common knee injuries, and over 150,000 of those occur in the U.S. every year. The cost of having that surgery is between $20,000 to $50,000, which is very similar to the cost of someone like myself. If I wanted a running prosthesis, that can cost anywhere between $10,000 to $20,000. If you're an above-knee amputee, that might be a little bit more, maybe $20,000 to $30,000. For individuals who need access to a kind of AFO or dynamic brace, those can be anywhere between $3,000 to $9,000. Same for kind of hand cycling or kind of wheelchair sports activities, those can range anywhere between $2,500 to $5,000, depending on the equipment. So these, for an individual who tears their ACL, for many of them, they can continue walking, but if they want to be able to get back into sport and physical activity, they have to have the surgery. And these are covered routinely at a similar cost and similar amount to what it would take for a person with disability to get back into sport. And it's a significant number, $500 million in healthcare costs being spent towards this. And we need to kind of get some economic analysis to understand, of the disability population, what percentage of them would be interested in participating in sport and need access to equipment, so that we can kind of analyze that further. But I definitely believe that it's a number that's not going to be as big as what we think it is. And it's a very doable thing that we can provide. Additionally, every major insurance company sponsors marathons, 10Ks and 5Ks, Kaiser Permanente, Cigna, Blue Cross Blue Shield, Humana. So it just begs the question, you know, if they're willing to sponsor marathons and put their name behind these running events and promoting them to their clients and population, then why aren't their policies keeping up with that as well and providing access to individuals with disabilities to be able to have access to that as well? And finally, the U.S. government, Department of Health and Human Services recommends daily physical activity for all Americans. And again, this is what Dr. Wernimont shared at the beginning. And you saw that the amount of physical activity that's recommended for able-bodied individuals is equal to what is recommended for people with disabilities. So if our own government is telling us that people need to be physically active, then we need to adjust our policies to be in line with that as well. So one of the things that we did this past year in 2020 was held a grassroots advocacy campaign called We Just Felt Like Running and brought together over 600 individuals across the U.S. to do a virtual race. And we asked everyone to help us run 2,758 miles from Seattle to Washington, D.C., to deliver a policy paper and petition to Congress. We ended up going back and forth across the U.S. over three times, kind of like in the film Forrest Gump, if any of you guys are familiar with that, which was a huge highlight and just super fun aspect for me. But as part of that campaign as well, we also asked a number of people with various disabilities to share their stories, what it has been like for them throughout their lives, what it took to get access to the equipment they needed, what it took to get access to sport. And across the board, all of our stories were very similar, having to wait decades, kind of being in the right place at the right time to find a nonprofit that was willing to help them, relying on charity. And also, now that they had access, how it's changed their life, how it's made them more self-confident, how it's helped them become better in their workplace, how it's allowed them to make friends, and all of that. So this was a huge part of the campaign as well, just showing and telling people's stories. So this was our policy paper and petition. I'd be happy to share this with you guys so that you guys have an opportunity to sign the petition. We have close to 10,000 people who have signed it so far. And if you're interested in reading the policy paper as well, we would love for that. There's a number of statistics and just information shared already in this presentation that I'd love to get in there and to help bolster that paper. And we presented this to Congress and to over 30 congressional offices in December, and we received a lot of really great support and opportunity to continue to talk about this. So the different policy options that we're recommending as part of this are, one, to expand the list of activities of daily living, to include aerobic exercise, and to ensure that the assistive technologies that are needed to do that are covered by insurers as part of that. And I think we know how important that is in terms of ADLs, of how that shores up to everything else down the road. So first and foremost, number one is to be able to expand that list of activities of daily living. The second one is to adapt public and private health plan coverages to employ exercise-based treatments. And I think we all know the kind of importance of that, and some of you may already be doing that in your practices, but there's much more that we can do to help expand those and adapt those coverages to cover that as well. The third would be to task the Department of Health and Human Services with revising essential health benefits and local coverage determinations and other standards that dictate the treatments and what equipment must be covered by health plans. And having those include assistive technologies and wheelchairs, prostheses or phoses, all of the above, that people with disabilities need to exercise. Number four, joining the multitude of comparable countries that employ UN standards and actually commit funding and initiatives for people with disabilities to participate in sport. So making sure that the U.S. is in line with other countries that are doing this already. And then finally, number five is utilizing Congress and state legislatures to define the failure to providing these assistive technologies as unlawfully discriminatory. So these are the policy options that we were talking with these 30 congressional offices. I'd be happy to kind of dig into them a little bit more. And also, I'd love to share this, the policy paper with you all if you have ideas for how we can bolster it and have you guys sign the petition and share it as well. So definitely, these are ways you can help signing the petition, reading our policy paper, and I'll share the link to our film as well if you're interested in watching that. And this is my contact information if you want to get in touch or get more involved with Forest Dump.

equitable access

physical activity

disabilities

adaptive sports

spinal cord injuries

physicians

exercise prescription

barriers to physical activity

equipment grants

advocacy

limb loss