Hello, everybody. I hope you can hear me fine. If not, someone will give me the notice, but really appreciate you all coming today to the 2020 Dr. Molnar presentations and lectureship. We have a great, great session for you. I just want to make sure everybody mutes the microphones, please, and turns our videos off during the presentations. We're choosing this year to do all the questions through the Q&A button, the question answer button. So your questions should not be put into the chat box. The chat box is there for conversations, messaging back and forth. But if you can keep your questions into the Q&A button, that would be a good thing if you want them answered particularly. There's been some changes to the CME credentialing process, a few changes that will appear in the chat box. The APMNR staff will add that here in a bit, if not already. And I'll leave at that. The session is going to last 60 minutes, 60 minutes. We've got great presentations. Our first one with Dr. Gloria Vergara-Diaz on robot-assisted gait training in children with cerebral palsy. Dr. Vergara-Diaz was our 2018 Dr. Molnar Research Grant Award winner. In addition, our second presentation will be on, from Dr. Margaret Turk, our 2019 Lifetime Achievement Award winner, talking about advocacy with individuals with developmental disability in the context of the COVID environment. And finally, if there's time remaining, we'll talk a little bit about Dr. Molnar, the person, the professional questions you may have, so you get a little idea of who Dr. Molnar was. I'm just thinking there's a lot of just super younger pediatric rehabilitation physicians and providers out there that might not have had a chance to meet her or know much about her. So we want to just give a little session to talk about her a little bit, so there's some understanding of the wonderful person she was. With that being said, I'd like to move into Dr. Jill Myland, who'll announce our first speaker. Thank you, Jill. Appreciate it. I am pleased to introduce the next speaker, Dr. Gloria Vergara-Diaz, winner of the 2018 Dr. Molnar Research Grant Award. Dr. Vergara-Diaz received her medical degree in 2008 and her master's degree in biomedical research in 2011 from the University of Sevilla in Spain. She completed her training program in physical medicine and rehabilitation at La Virgen del Rocio University Hospital in Sevilla in 2013. After the residency program, she worked with a physiatrist in the orthopedic emergency room and the physical medicine and rehabilitation department. She has recently obtained her PhD in molecular biology, biomedicine, and clinical research, international mention with honors, from the University of Sevilla, with a thesis focused on the application of new technologies for the design of individualized rehabilitation interventions. Currently, she is a research scientist in the motion analysis lab at Spalding Rehabilitation Hospital and the Department of Physical Medicine and Rehabilitation at Harvard Medical School, where she is conducting research studies in pediatric and adult populations who have a range of disabilities, from cerebral palsy to stroke to Parkinson's disease. She has always had a particular interest in pediatric rehabilitation because of her older cousin, who has spastic quadriplegia due to cerebral palsy. As such, she is keenly interested in exploring the use of emerging technologies such as motion analysis, robotics, and mobile health technology for rehabilitation applications and the development of more individualized approaches. She had the opportunity to go to the Spalding Rehabilitation Hospital and Children's Hospital in Boston during the third year of her PM&R residency program in Spain to learn more about motion analysis and pediatric rehabilitation. In her spare time, she loves to dance and play with her dog, Balu. Welcome, Dr. Vergara-Diaz. Thanks, Dr. Milam, for your kind introduction and also thank you to Dr. Murphy for inviting me to present during this session. I don't have any conflict of interest or financial disclosure, but I do have a lot to thank to my team in the Motion Analysis Lab at Spalding Rehabilitation Hospital, to the Fundación Alfonso Martínez Codero, the Real Colegio Compulutense at Harvard, the B4D Foundation, and, of course, the Foundation for PM&R for awarding me with the Gabriela Morna Pediatric Grant in 2018. Several studies have demonstrated that robot-assisted gait training, that I'm going to call RGT sometimes during my presentation, leads to positive clinical outcomes at the group level in cerebral palsy. But when the results are observed at the individual level, the significant variability marks that response. So we hypothesized that feature structures from muscle activities and movement patterns could be used to predict robot-assisted gait training responsiveness and effectiveness. And to test that, we performed a research study to identify biomarkers of RGT responsiveness and develop instrumented outcome measures to define e-deficitness in children with cerebral palsy. This will enable us to design subject-specific gait rehabilitation intervention in children with cerebral palsy to achieve optimal clinical outcomes. We carried out a study, including, as I said before, children with cerebral palsy, but between 6 and 18 years old, with Grom's motor functional classification system levels between 1 and 4, body measurements compatible with the robotic device used, and the ability to communicate pain and discomfort. We studied children with locomotor training within the previous three months and those who had any contraindication to receiving robot-assisted training. Robot-assisted training, such as cardiovascular, pulmonary, orthopedic, or neurological complications, as well as skin problems on the body parts where the body is attached, or if they have arthrodesis in the lower limbs. Children underwent a six-week RGT program with around three sessions per week using the locomotor and pre- and post-training assessment, including the Grom's motor function measure, the GMFM, the dimensions D and E, so standing and walking, jumping, and running, the six-minute walk test, the 10-meter walk test, as well as an instrumented gait evaluation, including EMG data. The analysis used for this study is slightly different from the clinical concept of muscle synergies that we use on a stroke or when talking of selective motor control in children. It is expanded, but also based on the analysis of the contraction of muscles, agonies, and antagonies over the time in a physiological or in a pathological way. The central nervous system encodes a set of combination of a small number of motor outputs units that we call synergies and combine them in a task-dependent manner to generate muscle contractions that lead to the desired movements. Each muscle synergies, as we can see in this slide, include a set of muscles and a level of participation of each muscle and is characterized by a specific time activation. The muscle synergies are able to capture activation characteristics that are hidden in the EMG data and reflect some aspects of the kinematic and biomechanical requirement of the task. Subjects with no motor impairment typically display four muscle synergies. As we can see in the presentation, we have the four typical synergies. The first one is the weight acceptance synergies that provide stabilization and enables the weight acceptance, and the main contributors are hip flexors and extensors and inflexors and extensors. The push-off synergies that provide forward propulsion with the plantar flexors, the foot clearance synergy that enables the tibia progression during early stance and the foot clearance during the swim, and with the tibialis anterior and the rectal femoris as main muscles, and the leg deceleration propels the body and decelerates the leg is the fourth one and it's mainly with the bicep femoris and the semitendinosus. In the literature, when we check the literature, we observe that children with cerebral palsy have been shown to utilize fewer muscle synergies during age than typically developed children. This is the analysis that we have performed and we are going to see this a little bit more in detail. So how are our studies? So we, 15 subjects, completed the study with a mean of 13.6 years of age and nearly equally distributed between the two genders with levels one to four of the GMFCS and diverse topographic involvement being the diplogic the most frequent. Statistical comparison using the Wilkinson-Sein-Rag test demonstrate a significant improvement in the median score for dimension E of the GMFM, a scale of 13 points, about 36% of the bystander value, in the endurance measured by the six minute walking test, and the mean quality of the gait measured using the Edinburgh visual gait score, and we observe an improvement of one point. But what happened when we were interested in the individual data? So to explore the possibility of observing difference in RGT outcome in children with different functional abilities, the data were sorted according to the GMFCS level, as is shown in this table, and also the cells were color-coded according to the magnitude and the observed motor gains. Specifically, we use light green, olive green, and dark green colors, and they were used to represent moderate, large, and very large changes, respectively. Well, we can see in this table that all the subjects, all the study participants, responded to the intervention, although we can see that they did it in different ways without a clear pattern using the GMFCS levels. We added to this table the number of synergies that mark the EMG data recorded from each subject's lower limbs, and between two and four muscle synergies were sufficient to model the EMG activity of each leg in these subjects. We can assert that almost all the subjects show three muscle synergies, both pre and post intervention, and only two subjects display two muscle synergies pre. One of these subjects maintained two synergies post, while the second subject recruited an additional muscle synergies in response to RGD. That's subject 14 in the table, and we are going to take a closer look at that case. Now, if we can have the video. The video is running. So, this subject that we were talking is a subject with a level three that was maximally responsive to RGD. Clinically, she showed improvement in the scores, 80 percent in GMFN standing from the baseline, 32 percent in GMFN walking, and 48 percent in the six-minute walking time. Two graphs show the muscle synergies results in this slide. In the first one, we can assert the weight of coefficient, which is muscle participation, and in the right, the temporal coefficient during the gait cycle. Pre-RGD, we extracted two synergies. One consisted of a few proximal and distant muscles, and the second one is primarily composed of plantar flexors, or gastrocnemius, soleus, and the third one is the temporal coefficient during the gait cycle. It's primarily composed of plantar flexors, or gastrocnemius, soleus, and peroneus longus, as well as the dorsiflexion that was the tibialis anterior. And three synergies were accurately modeling the AMG recording post-intervention. The main change that we can assert is that the tibialis anterior separates from the plantar flexors in a new synergy. The one that we can assert is the third one that is most active during the swing phase. In the videos, we can assert that she seems to be faster, but when we do a systematic evaluation of the video, we assert that improvements in some items, like the maximum ankle dorsiflexion in swing and stand, the terminal swing position of the knee, and some others, she only got worse in one. But what happens when we look at the data cross-sectionally at baseline? In this slide, we present the most effective side of two subject muscle synergies. On the top, one with anemiaparesis, level 1, and on the bottom, one with quadriplegic layer 4. We can also serve the gait patterns on the videos. Children with level 1 display nearly physiological synergies in composition and temporal activations, but in contrast, this arrangement of the muscle synergy component and the temporal activation can be observed in level 4. In general, we assert that the composition of the muscle synergies shows an increase in the presence and magnitude of aberrant elements and the temporal coefficients increase in variability and complexity with the GMFCS level. We would also like to show an example of a more modest response to RGT. Clinically, she showed some improvement in GMF and D and E, and also in the six-minute walking test of about 18 percent. And in the systematic evaluation of the gait, we observe only the improvement in one of the items of the visual gait score in the peak flexion knee during in-swim. This subject has three muscle synergies in the lower limbs, pre- and post-RGT, and after the intervention, we observe some small change in inconefficient, and we can observe the muscle synergy number G3 change slightly in temporal activation, increasing the activation during the late stance. We will need quantitative measures to quantify those changes in both coefficients and temporal activations. In conclusion, we can say that the study participant shows significant motor gains in response to RGT, irrespectively of their functional abilities as baseline, but considerable variability in the magnitude and type of response was observed across subjects. The composition of the muscle synergies showed an increase in the presence and magnitude of aberrant characteristics, and in the variability of the patterns of temporal activations with the GMFCS level. There are changes in composition and temporal activations between pre- and post-robot-assisted gait intervention, and while the relationship between clinical outcome and muscle synergies was apparent in sub-subjects, such relationships were not as evident in other cases because muscle synergies affect gait patterns in complex ways. But muscle synergies appears to capture some of the phenomena underlying the subject motor impairment, as we could observe during the presentation. As take-home messages, well, to the best of our knowledge, this is the first study that used muscle synergies to evaluate the effectiveness of RGT in children with cerebral palsy, and the consideration derived from this observation, in our opinion, justifies undertaking a more extensive clinical study. So we started with an hypothesis, but now we have more questions, and we would like to pursue those questions to try to find an answer to those questions. So future research should investigate the relationship between selective motor control impairment in those children with cerebral palsy and the characteristics of muscle synergies. The presence and magnitude of aberrant elements and the complexity of the muscle synergies' temporal activations could be used to derive biomarkers that enable the motor phenotyping of individuals. And quantitative measures of the presence and magnitude of those aberrant elements that we commented before, a metric that captures the characteristics of the temporal activations could be utilized to inform the design of individualized intervention. Finally, thank you so, so much, everybody, for your attention, and to the AAPMNR team for all their help. If you have any questions, you have my email here. Please don't hesitate to contact me. Thank you. Thank you. We do have a couple questions for you. How did muscle synergies relate to spasticity, dystonia, and other hyper- slash-hypotonicity? That's something that we also will need to investigate, how that works, because, of course, we have a contraction of the muscles. We are looking at different contractions of agonists and antagonists, and we also collect some data with spasticity, but we will need to look further in those data to check what it... We couldn't find that simple relationship, so we will need to explore more on that. And also, it will be great to do it as well with dystonia. What components would you use to individualize RGT recommendations based on your current experience? Well, the main idea is to find where we have the selective motor control during the gait and see if we can break those. For example, if we have co-activation of two muscles at the same time, the question is, can we do something before? Can we break that? And with that, we could... Can we improve roboticity gait training if we do something before? Or maybe we need to complement with something else. That's what we would like to know, and I think we are going to keep working on this to try to find out that. And what are your future plans as you move forward with your research and into clinical care? So my idea is to try to, the reason why we use the visual gaiter score in my presentation, even if I have the motion analysis and the motion capture system, is because I was trying to get something that we could bring closer to the clinics or something that is easier to develop and we can use in the clinic. Right now, I think that does the main idea. I'm not sure when I'm gonna be able to do that. Thank you, Dr. Vergara-Diaz. Up next, we have Dr. Brandenburg. Hello, everyone. It's with great honor that I get to introduce Dr. Margaret Turk, the 2019 recipient of the Gabriel Molnar Pediatric PM&R Lifetime Achievement Award. Dr. Turk is a SUNY distinguished service professor in the departments of PM&R, pediatrics, and public health and preventative medicine. She is also vice chair of the department of PM&R at SUNY Upstate Medical University in Syracuse, New York. She has served on national professional and research committees and has chaired the American Board of Physical Medicine and Rehabilitation, the National Advisory Board on Medical Rehabilitation Research at the NIH, including the National Institute of Child Health and Human Development, or NICHD, and NCMRR, the National Center for Medical Rehabilitation Research. She has also served on the review panel for NICHD's Medical Rehabilitation Research Subcommittee. As a pediatric physiatrist, she has developed clinical programs for children with disability, including continuum of care through adult services. Her research contributions have focused on health and health promotion for people with disability and health of and healthcare for adults with childhood onset disability. She has advocated for the inclusion and integration of disability issues into medical school curricula and for parity in healthcare and access for people with disability. She is a founding and continuing co-editor-in-chief of Disability and Health Journal. I'm thrilled to welcome Dr. Turk to present today. Thank you, Dr. Brandenburg, for those very kind words. And I'm honored to be here as the 2019 recipient of the Gabriella Molnar Pediatric Lifetime Achievement Award. And also, I'd like to acknowledge that Dr. Deborah Gabor is the 2020 recipient. And so you will hear from her next year. Each of us who are honored to receive this award also are asked to give some remarks to the pediatric rehabilitation medicine community and a topic of our choice. And usually it's something historical, something related to our practice or something that's current. And how can you not miss the elephant in the room of the pandemic? But my view, I think, is a little bit different because it's from 10,000 feet up. Those of you who know me, my career has morphed. And if you listen to some of the things I've done over my career, there are a number of things. Now I'm in my phase of career of public health, large databases, and looking then at people with disability and how they have become invisible in our healthcare, particularly related to where we are with the pandemic right now. So I'm hoping in the next 20 minutes that I'll be able to remind you of the vulnerabilities of the people whom we serve, their disparities, their differences in healthcare that they experience, and to hopefully have you recognize that now it might be a good time to do some advocacy. In fact, now is a very good time to do that. I have no relevant financial disclosures. Let me bring you to where this all started in the beginning of the year. We all heard about the pandemic that was racing its way West to us. People had already started to do some publication. They identified older age as being a problem and then a list of comorbidities. My work has looked at lifelong disability and boy, those look familiar to me. And in particular, my more recent work has been looking at death in people with intellectual and developmental disabilities and working with my colleague at Syracuse University, Dr. Scott Landis. This just seemed that people should be looking at disability and yet that really hadn't come out much up until this time. And then of course, the pandemic struck the US and we were overwhelmed with it. There were initially some limited responses, very unfortunate decisions, particularly here in New York State. There were many biomedical reports that replicated much of what we had heard that came over from Asia and from Europe. And people started talking about vulnerable populations. Yes, older groups, lists of comorbidities. Probably in the late spring, early summer, people actually started talking about race and gender and also people with poverty. Never once did disability come out of anybody's mouth that maybe these are people that we need to look at and address in a different way. The PM&R literature started to come out, mostly focused on practice, but looking at how things had to change, how things were reorganized. Telehealth, maybe missing that people in rural communities where I live, it's not as good broadband and most of them are in poverty so don't really have a smartphone, but nonetheless looking at other ways of being able to provide important services. And also the rehabilitation needs of a new group of people with disability, those who had sustained a very severe form of COVID-19 and then required rehabilitation. There was little data, slow addition of existing disability data. Majority of things were commentary. The lay press really took off with some very powerful stories of individuals. There were some surveys that took a look at what was going on, but really there was a very slow response from the research community related to how people with disability were surviving. So our research was among the early ones that came out. It may have been the first in the US that used data, actual data. There were some reports that came out of Sweden and the Netherlands related to IDD, intellectual and developmental disability. And so we used a very large database. This is the Trinetics COVID-19 research platform. It's 42 healthcare organizations, international but overwhelmingly from the US and largely from the Northeast and the Midwest. Remember, this was early on. We collected, we found data from January into middle of May. There were 30,000 people who were diagnosed with COVID-19. This was mostly clinical diagnosis. Remember, we didn't really have a lot of testing at that time. We in upstate still don't have a lot of testing compared to downstate. But nonetheless, we found 30,000 people and 1.5% had the ICD code of IDD. And that's what we would expect. What we did see though, that there were people with IDD who had a large number of these comorbidities, something that at least I had anticipated. There were fewer older people, but then we expected that too because people die much younger. People with IDD age match peers, they die 10 to 20 years younger. So we then looked at overall case fatality, case fatality rate is of the people who were diagnosed, the number who died. And the case fatality rate, if you looked across the board and you didn't look at any ages or anything, it looks similar. And this looked like the Swedish data. But when we looked at ages and we looked at differences, people were younger who died. So case fatality rate was not quite twice as much. This was closer to the data that we had from the Netherlands. So this seemed to be something that was important and something that we really had to look a little bit more closely at. I took the lead on that one. My colleague, Dr. Scott Landis, took the lead on the New York State disability advocacy data. He has developed a number of connections because of his work with IDD. This was data that had been provided by group homes in New York State. There is no transparency of data for people with disability and particularly IDD in all of New York State. There was no way people could find the data. So this group of people, these care providers, decided they needed to pool their data. So they actually did pull together across the state and there were 13,200 cases. We've been following them. You can see in this slide that early on, there was a very high case rate and therefore a very high case fatality rate. Again, number of people with the diagnosis who then died. You see the big difference that was noted in the case fatality rate that has since come down and has leveled off. It's still twice what the New York State case fatality rate is. It's very significant. This has lasted through the summer. We're just beginning to look at the data from October and November where now we're seeing a surge. It'll be interesting to see what happens from that. We actually are in a revised submission for some data on California. There are only 11 states who have shared their data at some level, some more transparent than others. We have California data. And it seems to be a combination of factors. Likely, it looks like personal and skilled nursing needs. Those are the things that actually define the settings where people live. But those may also be a proxy for comorbidity. So we're looking a little bit more closely. We're going back to our trinetics data. It was very interesting that this was picked up by the late press in particular, advocacy groups, disability groups. There are a number of white papers that have cited our work. Other organizations. We had multiple interviews. We gave multiple presentations. I was called to the federal level. We presented to HHS. It's gotten an awful lot of press. I've learned an awful lot about how you give interviews to people in the press. That's another lesson I learn every time I do this. But I was struck by the muted response from the medical community. And in fact, disability is unrecognized and continues to be invisible in our healthcare settings. It's very disturbing to me, having done this for so many years. And again, it doesn't make a lot of sense because these are vulnerable people. We've identified very, very clearly what the disparities are. And I have available to you a reference list where all of these are cited. We know that people with disability are higher users of healthcare services. And yes, will have higher costs. They really come from poverty, unfortunately. Many of them, not all of them, but a large proportion. And they don't have a lot of the supporting things of the social determinants of health. Lots of barriers to healthcare. Unmet healthcare needs. Limited incomplete assessments. No preventive care or limited preventive care. Misdiagnoses. We've all seen this in our practices. People with disability devote an inordinate amount of time to organizing themselves for their appointments. Coordinating, transportation, numbers of appointments they have. And let's not forget the family caregivers. All our children, in our case, with disability, but also adults with disability who are supported. This would seem that it's a no-brainer. People with disability should be acknowledged. And they're not. And that is not because we haven't advocated. This is a slide that shows, in a way, many ways of looking at advocacy. Most of us are down in the right-hand corner, the directed agency. Directed meaning providing some individual support. Agency meaning assisting to navigate. So we represent people. So we write letters. We do peer-to-peers. We make phone personal contacts. Moving over to a shared collaborative approach to the left bottom, it's collaborating. So that's when we help people learn how to self-advocate. And many of us have done this as well, particularly when we're talking about children with a lifelong disability who then become adults and transition and need to know how to advocate for themselves. We need to move to the top part of this, this activism. Not one of my favorite words, but it really means being active. So on the right-hand side, again, being directed and being a resource, helping people with providing information. You saw the research that we did in our publications. We've written editorials. We all do quality improvement projects. We all have struggled with trying to get education, medical education, to acknowledge disability. Many of us have given testimony on the Hill or comments to congressional meetings. I've certainly done my share of that. And I've done my share of lobbying as well. Not my favorite thing to do, but something that is really very important and I feel very strongly about. But we need to do this collaboratively. The directed part is where we tend to do things individually. It would make some sense for us to try to do things in a more collaborative way. And you know, in pediatric rehabilitation medicine, we have a rich history with many, many models of people who have done this. Henry Betts started working with children with disability in New York City, developed a wonderful program in Chicago and worked tirelessly on the Hill in Washington, DC. Bernie Johnson, my chief, started with children with disability, dealt with the polio epidemic, was very well known for his work with Duchenne muscular dystrophy. Did some things locally in Columbus, Ohio. Nationally, he promoted the specialty. Gabriella Molnar, for whom this award has been named. She worked very focused, in a very focused way in New York City. Really worked hard to make sure that the children received what they needed. And then again, when she moved to California. But she's the one who developed the textbook that all of us use. And has become available to medical educators as well. Mike Alexander has chosen to work at the state level. He's really made some significant changes there for PM&R. But also for people with disability. And he was also at the ready, anytime Henry Betts called him to go to the Hill. And he was happy to go there. I think Bruce Gans is the one of at least, my more personal era, who started as a pediatric physiatrist. And who has had tremendous success in promoting the needs of people with disability at a national level. Now I've told you some of the things that I have done as well, more as an individual. But we need to do things more as a group. The ADA was probably the last really big push that we had related to multiple people dealing with disability. And that's been 30 years ago. Physiatrists are uniquely qualified to do this advocacy. The top two things, note that we're able to look at big pictures. We're able to pull together evidence. This is really very important for putting together the background for others or even ourselves in trying to promote some action, some change. Possibly policy, maybe even more local than a large policy. We get more to the shared area, the collaborative area because of our ability to communicate. We have to be good communicators given what we do because we work in teams. And that's the most important thing that we do in working with teams. So now is a good time to look for change. People are ready. People are tired of the wrongs that have been going on for so long and looking for something more positive and something right. Things have aligned. I'll mention some of the problems that I see, but we simply need to define the problem we want to address and put together a background. Then looking for solutions, which has everything to do with who is our target going to be? Do we do something local? Do we do something national? Do we do something just within a group of physicians? Do we need to look at other organizations to help us out? And I would suggest that these are four areas that are low hanging fruit for us. Public health, emergency preparedness. We certainly weren't prepared for the pandemic, generally speaking, but certainly not for people with disability. Going back to the nursing home, bad enough. There's never been anything that talked about, don't go back to the group home or the ICF. We need to look more strongly in this area and people are open for this. We still not crack that nut about education, medical education and disability. There's much to do in that area. I've talked about research in terms of surveillance and lack of data that is available, but also looking at the effective funding for looking at post-acute care. This is really being pulled away from us as well. And although people are very hopeful that healthcare will be more inviting, it is not clear that the needs of people with disability will be addressed. People with disability do use a lot of healthcare. It does cost a lot of money to be able to do these things, but it is physiatrists who see these global issues. So, sorry, going the wrong direction. I'd like to look at this chart in terms of the four concepts I brought together, what the problem is in very simplistic way. There is significant background data and there are a number of partners with whom we can work. There really are ways that we can move an agenda together. We really need to think about what the partnerships may be. There are partnerships within the academy. The academy for a long time has really worked at practice, not to say that that isn't an important thing or an interesting thing, but these are the people whom we serve. We need to look along those lines as well. There are other councils who probably are like-minded in many of these areas. Maybe we can find something that is common across a number of the councils or in other organizations. Petition our professional organizations to either lead or to collaborate with others, to build some coalitions, because there is still much work to do. And I really think that our specialty is somewhat at stake, the future of the specialty. I think there's some urgency here. Now, people have picked off many of the good things within our specialty. The palliative care people have embraced coordination and team service. So have the neurologists, and so have the pediatricians and surgeons, orthopedists in particular, look at how they manage post-acute care within their own little shops. We've ignored a large segment of our population, of our practice population way too long, I'm afraid. It's been overlooked. IRS are really on the chopping block right now. I can tell you in upstate New York, that if you have a stroke, no matter what your age is, no matter how many comorbidities you have, no matter how many problems that you have, if you're in a managed Medicare or Medicaid program, you will go to a skilled nursing facility. Do not pass go, do not collect $200. Seems unusual in a time when we are really putting a lot of money into emergency and acute care. The money there hasn't decreased substantially, but the decrease has really come in the post-acute area, post-acute care area, where CMS is complicit in this. And that's really unfortunate. And again, there is really no understanding of long-term disability care, and the cost of that care and the need for that care. So in summary, I hope I've brought to your attention again, that there are significant differences and disparities for people with disability, the people whom we serve. It seems to be recognized in a large portion of the population as a whole, but the medical community has not seemed to respond to that. It really is time for us to do things in a more collaborative way to address these issues. And we as physiatrists are uniquely qualified to engage in these things. And again, in my opinion, I think the future of the specialty demands that we begin to look at this. Yes, we're asking people to do more. We do have to worry about burnout. We do have to worry about overextending ourselves, but this is a group effort. It's like all the team efforts that we've done before. There is a body of work from which we can now draw, which we couldn't do 30 years ago, but we can now. And I believe it is time that we support the people whom we serve. Thank you very much for your attention. Thank you, Dr. Turk. We have a few questions for you. Do you know how the deaths from COVID-19 in individuals with IDD compares to other groups like African-Americans and Native Americans? Well, because of the lack of transparency and data, we don't know. If you mean people with IDD who have any of those identities, we can't tell that. We can't tell that. You cannot pull out right now. There's no transparency. If you look at now ethnicity and race and gender that now is being required to be reported, you can't tell if any of those people had disabilities. I can't tell you about IDD comparing that to the larger population of these ethnic groups. What I can tell you is that there was a recent article published that looked at the six functional limitations, not by ICD code, but by functional limitations. Those are the six functional limitations that our surveys all look at now in the U.S. And going into the Johns Hopkins database, people were able to pull out that you had a bad outcome if you had a disability. If you added on, differences in race or ethnicity, low socioeconomic status, you really were even two to four times higher in terms of risk for death. I don't think we really have the detail we need to be able to make some of those comparisons. How does the data presented compare to Sweden and other countries that may have protected their vulnerable population in a better way? Well, as I mentioned earlier, in Sweden, it basically said that things were pretty much the same across the board, that there really was no different. And in some areas, people with IDD had less of a... They didn't actually look at case fatality. They looked at case rates. Again, I think we have different ways of collecting data. The U.S. does not have a strong surveillance of disability. There is a very strong surveillance in Sweden, but we are much more like the data that came from the Netherlands that shows that people with IDD actually had higher problems. I don't think the jury is out yet at Sweden. We know that they've had a surge just like the rest of us has. I don't think we figured out exactly the right way to manage this. But I do think what we've done in the U.S. was without much thoughtfulness, I might say, in regard to looking at our vulnerable populations. How do you recommend we protect the vulnerable and still ensure that they have access to schools, therapies, et cetera? That's a very difficult question. And there are no easy answers to that. People are struggling with having people come back, our children without disability coming back to school. That clearly is an issue for our children with disability who, again, these are the higher needs where there is much closer personal contact, higher medical issues. I don't think we have that well-defined as of yet. I know here in New York State, well, people have tried to move to onsite much more than doing things from a virtual perspective because children with disability need to have much more of that contact. It doesn't appear that that has really had an impact yet. Children going back to school with special needs, it clearly is an issue. We're trying to look at some of the age issues. I'd love to be able to look at that. The data is not available for us to look at. We really don't have those answers yet. So it's all the things that we have used. People need to use PPE. We as adults probably need to use that. The kids are gonna have a harder and harder time being able to use that. Lots of hygiene, lots of hand washing. It does work and it worked in many of the group homes where there were smaller groups of people with not high personal care or skilled nursing care needs. What, in your opinion, are the biggest barriers to effective advocacy in the community at large? I think it's very much the medical community. It's not our medical community. It's the larger group. I have spoken to people at HHS who understand and who are trying to deal with this issue and they can't get up the chain of command. We haven't gotten up to the higher levels. I am funded by CDC. I have talked to the people in National Center for Birth Defects and Developmental Disabilities. They can't move it up the ladder. There is, I believe, a real lack of knowledge and understanding by the medical community in general related to issues of disability. That goes back to medical education more than anything else. But I think that's really been the stumbling block for all of us who have been trying to move things ahead. We need a larger group of us and we need to have a really targeted plan to be able to deal with this. What do you think the next best steps for advocacy for our group, for the AAPMNR as a whole, research, design, strategies, collaboratives to improve advocacy in the future? Well, I think people need to decide what is the key thing that is important. I named four areas that I thought were key that were low-hanging fruit that people were now ready in some of the higher areas. There's been pushback. There have been many of us that have been pushing at this. I think now is a time. I've been trying to work on medical education for a long time. The AAP, I know, is interested in that. There is a group within the AAMC who has an interest in that. I mean, there are these areas. All of us know we have our coalitions that we've developed over time, but we know who our groups are. But we need to choose something. And maybe it's that this group needs to say, needs to decide on something. Do we want to put our efforts toward medical education? Do we want to plan for the next pandemic? Do we want to look at healthcare? I mean, what is it that we want to do? And then trying to find what, who else, where else is there some commonality within the academy? Bring some of those other councils together. And then begin to petition to be able to put together, as I mentioned, we need to define the problem, determine what the solution is, but that's really based on who our target is. So I would challenge this council to try to decide what is the topic of interest? What is it that you want to address? I'm in there with you. I can do any of the four areas or a fifth one if someone comes up with it. But now is really a good time to try to move agendas ahead. Thank you so much, Dr. Turk. Next, we have Dr. Murphy. Thank you very much. Thank you. Hello, everybody. Thanks again for today and the wonderful presentations, Dr. Vergara-Diaz, Dr. Turk, that's just marvelous. We all need to advocate at every level, local, community, state, and national, international. We really appreciate it. Wonderful, wonderful talk. Now, we have about six minutes left and I'd like to talk a little bit about Dr. Molnar, Gabriela Molnar, wonderful, sweet lady, great person and professional. I spent almost 24 years with and I'm looking for questions too that some of the younger folks might have as to what you may be like or what they might want to know about Dr. Molnar. And in lieu of no questions that pop up or come forward, I'll proceed a little bit down the road here on some of our slides. A picture of Dr. Molnar that some of you may recognize, it's in our textbook. She created our first textbook and nurtured it all the way through up to at least the fourth to fifth edition. She was retiring about that time also to Tulsa, Oklahoma with her second husband, Mr. Swofford, who contributed about $450,000 to our research and education fund, Jack Swofford, we're very grateful for that. Most thankful that's the funding that allow us to put on today's presentation and to have a research into the future right now and our lifetime award winners and celebrations we have every year also. I have no disclosures for sure. A little bit on Dr. Molnar for those that might not know, she was born again in 1926 in Hungary in the Budapest area. She graduated from Budapest Medical School in 1950, board certified in Hungary as a pediatrician in 1954. And as you know, that was a lot of the post-World War II reconstruction era. And the Russian army was coming through Hungary at that time and she experienced all of that. She used to tell me that she thought the German warfare was really bad, but it was nothing compared to when the Russians came through, were just words that were quoted directly from her. She escaped from Hungary in 1956 and crossed the Bridge of Andal. Now, some of you may know about the Bridge of Andal into Austria and there's a famous book put out by James Mishner, I think in 1957 on the Bridge of Andal. And she could quote that quite well. That was her experience to escape during that time period of our world history. She settled in New York City with her husband who was a pathologist about a month later. And they did very well at Albert Einstein. She was a tenured professor by 1977. She worked actually when she first came here as a certified nursing assistant in nursing homes, helping the vulnerable as Dr. Church always talked about here. And then when they got settled, moved into Albert Einstein and did very well there. But then her husband needed a heart transplant and they didn't do that over a certain age in the state of New York. So they had to move to California. And so she chose to go to Oakland Children's Hospital and she developed the program there. There was none there when she came and she developed the whole thing. Went on to become the state surgeon award in the state of California. A number of other accolades that she collected at the Children's Hospital of Oakland. I met her there first in 1987, I think, 1987 as her fellow for a couple of years. I spent two years with her at Children's Hospital of Oakland. One of the 23 physician fellows that she trained national, international. The time I was there 1988 to 1990, it was Dr. Bresner there also from Israel and others trained with me with her. And she was always known as the boss. She was a wonderful, sweet lady, but by God, if she got her temper, that Hungarian temper would come at you. You'd all be racing for the first mouse hole out of her office in a blink. So I usually escaped that because I was quicker than everybody else and didn't trigger it, but God help you if you got on the wrong side of it too. But she was in charge and she was in charge of all our wonderful patients. Surgeons really respected her. Nobody operated on her patients if she didn't want that. In our population with children with cerebral palsy, some of them have 15, 20, 30 operations over time and nobody would operate on her kids if they didn't talk to her. And she was very involved with her cares, a pre post-surgical. And I think it's something our field of medicine could do more of. I think we do need to get more involved pre-surgical with a lot of our kids with cerebral palsy before they go off to the surgical suites with our wonderful pediatric orthopedic colleagues. I think we do need to get more involved pre-surgical more than just tone management. And she certainly did and showed that to us also during that time. She's done lectures worldwide, United States, Australia, Europe, everywhere. 46 published articles, five pediatric rehab textbooks. She created California Physician of the Year. She loved hobbies, classical music, opera. She loved to walk through the gardens and read. She enjoyed cats. I had to spend a night or two with her during the 1989 earthquake when all the transportation, Oakland was down. And we got to meet just about every cat in the neighborhood during that time period. They always would come by her house looking for handouts. She'd have fish just to throw out the window at them. And she told me never to read a slide to the audience because it's insulting. So I will follow her example and not read this. I'll give you some time to read it. But it was her guiding principle and something we carry forward with us into the future. Again, folks, the Gabrielle E. Molnar Research Education Fund, if you can donate to that, we greatly appreciate it. We do have a six-figure estate that's been donated to the foundation that won't occur until the individual passes away anonymous. So consider estate plans, whatever. Also, the Journal of Pediatric Rehabilitation Medicine can all be funded through the foundation. Thank you, Foundation of PM&R. Without some funding, we can't put these shows and presentations and symposia on into the future. It funds everything we do right now. We greatly appreciate it. In addition, the physician textbook is out, the sixth edition. We're wanting people to add comments and text or email myself, the co-editors, with any suggestions for the seventh edition. It's your textbook. We want you to write it, and we need your comments and suggestions. Also, we'll close with a wish for physician wellness. We want everybody to be safe, healthy. We don't need any more suicides, other terrible things like that. God bless Dr. Jacob Neufeld, and let's all keep healthy, especially in the COVID environment. Thank you all for coming. God bless you all, and we'll close it down. Thank you, staff. Bye-bye.

robot-assisted gait training

cerebral palsy

muscle synergies

motor gains

variability

intervention

selective motor control impairment

rehabilitation interventions

emerging technologies