Wheel Chat - Your Go-To Mobility Podcast
The Wheel Chat Podcast hosted by Anthony Mitchell and Justin Boulos is your go-to podcast for all things mobility. Whether you’re a Clinician, wheelchair rep, end user or just curious, you’ll get the inside scoop on what really works gained from their twenty years of combined experience. Each week, Anthony and Justin share real life stories, practical advice, and their honest, unbiased opinions so that you feel empowered both professionally and within your daily life. Both actively working within the sector, they’re on a mission to positively impact the lives of others worldwide!
Wheel Chat - Your Go-To Mobility Podcast
Can Kids Stand Without Perfect Alignment?
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In this episode of WheelChat, Justin and Anton sit down with Ginny Paleg and Roslyn Livingstone to unpack a deceptively simple question: when, why and how should we be getting children and wheelchair users upright? The conversation moves from early standing and hip development through to powered standing, asymmetry, risk and the real-world decisions clinicians have to make.
You will hear why upright positioning matters from early childhood, why powered standing may support function but does not always replace a separate standing frame, and why “not perfectly aligned” does not automatically mean “do not stand”. The episode also covers practical setup checks including colour, oxygen saturation, breathing, pelvis and trunk alignment, foot stability, knee support, AFOs, firm footwear, knee immobilizers and cervical collar use when clinically appropriate.
Ginny and Roslyn are introduced in the episode as experienced PT and OT clinicians, researchers and lead authors in standing, stepping and power mobility. Listen for the practical clinical reasoning, the myth-busting, and Justin’s plain-language summary at the end.
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Can you stand without alignment?
SPEAKER_04I would say probably 90% of my kids that are standing are not in alignment.
SPEAKER_03We have Ginny Pele and we've got her psychic Rosalind Livingston. These are veterans in the industry who have been pioneering a lot of research and a lot of advocacy for those with disabilities.
SPEAKER_04Most of our kids come with asymmetry and we use the standard to decrease the asymmetry.
SPEAKER_02Are we doing any damage? Could we be raising the risk of dislocation? Because there must be people listening doing I don't know if it's safe. How do I know if it's gonna be okay? It's easier to disregard it, but everything is a scale of light.
SPEAKER_03What's the risk? What's the benefit?
SPEAKER_04So if that doesn't happen for you, your hip doesn't grow into the socket, and you're at a very high risk of somewhere between 60 and 90% of your hip coming out. Secondary behavior is the biggest problem in all across all of disability, and even though we call it has to standing is not, I think hard standing frames are great.
SPEAKER_01I'm a big fan, but I don't think it necessarily always replaces a separate standing frames. Standing is fun.
SPEAKER_03Stand is fun, yes.
SPEAKER_02Hi everyone, and welcome back to our new episode of Wheel Chat. We are back again this week and we are very excited.
SPEAKER_03Justin, how are you doing? Good, mate. This is a nice new one for me. It's 6 a.m. over here and 9 p.m. over you. And then we got two of our guests during the day. So it's all all around the world, this podcast.
SPEAKER_02It's about time you get the morning shift, mate. I'm uh I'm always on the morning shift. As it so happens, I quite enjoy it. But it's nine in the evening here in Leeds in uh the UK, and I'm quite enjoying it. It's been quite nice. Um, but we let's get cracking because we have got really exciting guests today. We have a lady called Ginny Peleg, and we've got another lady, um, her psyche called Roslyn Livingston, and we are absolutely delighted to have these two exceptional women on the podcast. Um, extremely excited because not just are we excited to have um lead authors, which I think was maybe a first, um, and we will go into the backstory um shortly because I'd love to hear a bit more from Jenny and Rosalind about how that all started and how it all worked. But they are PT and occupational therapists alike. Um, their combo is tremendous. What they've been able to achieve up to date, again, we're gonna find a little bit more out, but I think you guys are gonna be really excited, and more so, what we're gonna be able to learn today is even more exciting. So, Jenny Rosalind, without further ado, how are you? Fine. Nice to have you on the pod on the cast. I know you two don't want to self-promote. I know that's not why you're on here, but let's just have a little minute just to do that because it's lovely to have Ginny, Rosalind. Tell us your story. How did you two first meet?
SPEAKER_04Roz, you're better at this. You'll tell the truth. I'll just make up something.
SPEAKER_01I think it was at International Seating Symposium in 2007. I think it's when we first talked. And Ginny, I don't remember what you were doing there. We had dinner with you because um we were looking at having you do a keynote, I think, at ISS in Vancouver in that would have been 2008. And 2007 we were in Florida. So I think that was the first time we talked, but we didn't really connect and work together until 2010, and we met at the best practice conference in Glasgow, where we were both on a workshop about power mobility and children and best practice for that.
SPEAKER_02All right, wow. Okay, so I had a totally different story in my head. I thought maybe Jenny saw you from the other side of the room. There was like there was a connection. But no, no, it didn't happen like that. There was there was just like, you know, a few years went by and eventually you decided to talk to each other. And it was at that point things just sort of connected to that.
SPEAKER_04That's kind of the story about how we first started publishing, because we didn't figure out how to get into peer-reviewed journal articles, and I was on an escalator in Dublin, Ireland, and I complimented a lady named Jackie Casey on her boots, and that led to our first publication. No. You're seeing I made that up too? No.
SPEAKER_03That's not what happened.
SPEAKER_05Just the next one. That was the next one. But that wasn't the first. Every American needs a fact checker right now.
SPEAKER_03I'm glad we got our fact checkers uh on the call. I just want to say as well, it's crazy that you guys said like 20 years ago, Jenny, you were doing keynote speaking. It just goes to for the audience that are listening, just want to give uh a bit of a flavor of the people that we're speaking to right now. These are veterans in the industry who have been pioneering a lot of research and a lot of advocacy for those with disabilities. And like I said, I have we are very honored to have you guys on to chat about a few topics. And three topics I thought would be fun to power through today in our roughly 30 to 45 minutes, which never land never lands for that time zone, is stand in, step in, and power. Because that is your bread and butter. A lot of the research that you guys have done is around that. And so I'd love to talk to you guys about that. It's specifically with uh with my son who doesn't have a disability but is eight months years old, and I want to know can I start standing out? Because I love putting him up against something. And some people say the ass isn't formed yet. Like, does this is it different in uh typically developing children or not? Because I am just all about getting him standing as soon as possible. So, firstly, my son, is it okay for me to stand there? I'm not gonna break his kneecaps. Does he even have kneecaps at this point? What's going on?
SPEAKER_04World expert is Kathy Morgan from your very own Australia, and she is going on at the moment saying six months is when the kids should start standing between your knees. Uh, we need it for the stem cells, the satellite cells, and the muscle. We need it for the bone health. And really, we should be doing that with all children. Weight bearing is so essential. So rock and roll, go for it.
SPEAKER_03My wife, as soon as we finish this podcast. That's exciting. He soon he'll be taller than you, Justin. I know. No. So, okay, so six months. So talk to me about more so for kids with uh some sort of congenital disability or if they've got a spinal spinal cord injury, brain injury, and they like what are the indicators to know that they may not be standing in the future? Like, how do you know from a baby if they're gonna be standing or not? And then what do we do with that information?
SPEAKER_04Such a great question. So, again, Australia is the world leader right now in early detection of what we're gonna call cerebral palsy. Uh, there's many, many definitions. It depends which one you're gonna take, but let's take the Australian-American definition, which we share. You Scottish people are following a different definition, but at least for the moment, we are including all the genetic disorders, all the trauma before age two, all the anatomical anomalies, metabolic, any reason that a child isn't gonna have a normal sensory motor uh development. And we can see that right away. We can use something called the general movement assessment, the motor optimality score, another test called the Hammersmith Infant Neurological Exam. And really, between two and four months of corrected age, we can already have a pretty good idea of which is the child that's going to be needing a stepping device, a standing device, or power mobility.
unknownYeah.
SPEAKER_03Who does it? Is this the physiotherapist? Is it the orthopedic? So, like, so a lot of our audience or occupational therapists, or there might be ATPs or PTs, but like, what does this mean for me as a AT, OT, ATB? What do I need to do? Like, who's sorting this stuff out?
SPEAKER_04We think you should learn to do it as a screening tool to help the families get to the right professional. So the neonatologist, the physical medicine doctor, or physiatrist, the orthopedist, um, the developmental pediatrician. It could be anybody who's comfortable and trained in making these diagnoses.
SPEAKER_03Okay. Cool. So, okay, so that we do these screens pretty early on. What does this mean for us? So, does that mean at six months? What should we be doing? Is it six months we should be looking at or is it earlier?
SPEAKER_04It's really much earlier. So as soon as the baby gets out of the hospital, that's 50% of the babies were in the NICU. 50% of the babies were born full term and healthy. So those are the really hard ones to find in the community. So hopefully they're getting picked up because they don't have head control, they're not eating well. Um, the mother or the father, the caregiver, just notices something's off and they get that diagnosis. But we are starting immediately. Grasp, reach, vision, all those things. We have very specific diagnosis specific, phenotype specific, like do you have hemoplegia, dye plasia? Is it all your limbs? Are you stiff? Are you floppy? The intervention's gonna vary.
SPEAKER_03Yeah, I understand. Okay, so stand in, talk to me. Is this prone stand-in, upright stand-in, supine, stand-in? What's the difference is for those who don't know?
SPEAKER_01Uh, okay. So the the key is getting kids upright. I think that's the the big thing. And we we always start talking about seating first from three to six months, getting the kids out of that lying position, out of the baby bouncy seat, out of parents' arms all the time. They need to be up, they need to be able to start balancing their head, they need to be using their hands, using their vision, developing reach and grasp, and interacting with the world. So it starts with getting more upright. And then we, I mean, Ginny was considered to be pushing it too far when she was saying between nine and 12 months, we needed to get kids up and standing and get them weight-bearing. But now Kathy Morgan is saying even earlier. So you want to start getting kids up, taking weight on their feet. You want to look at, um it all depends on how much support they're going to need. And obviously, so supine is when you're in a standing frame that's sort of leaning back, giving more support. That's usually for the kids who lack head control. Ginny did a whole paper about angle inclination and abduction, was it? Something like that in standing, and compared kids at different positions. And other studies we've we've done looking at kids with cerebral palsy using different equipment shows that predominantly children at GMFCS5 lacking the head control tend to be more in the supine standard. Kids at GMFCS4 will probably be more a prone standard, might work better. It does work better for extension at the hips. What do you want to say about the weight-bearing part of it, Ginny?
SPEAKER_04I want to say make sure they're weight-bearing because the whole idea of standing is to load, especially the femur. So you were talking about the health of your eight-month-old's acetabulum. And we know that our kids from the beginning might not have good acetabulum. If they have a genetic condition or had something that was going wrong from the beginning of gestation, those hips just don't form right. Um, if there's something happened to them at birth, like traditional cerebral palsy, like an anoxic hit or a bleed, then maybe their hips were developing fine, but then they won't keep developing. So when you're born, your femoral neck is very straight, your head is very straight, your acetabulum is very shallow. And it's really from weight bearing and your gluteus medius that pull that femoral neck down and rotate the head. And then that pressure of the femoral head into the growth plate of the acetabulum is what makes that nice. So if that doesn't happen for you, your hip doesn't grow into the socket, and you're at a very high risk, um, somewhere between 60 and 90% of your hip coming out.
SPEAKER_03I've I have a question, and this is probably me being, I need to listen back to the last podcast of our. So we spoke before this podcast, we had Dr. Axe on here, who is a fantastic orthopedic surgeon, who explained what you're explaining now, and I I have to listen to back because I think I misunderstood. So I thought it was before the stand in, so before nine months, the hips are essentially developing the same because whether you're typically developing or not, you're not weight-bearing. So there's no reason for the hips to not form as they normally would. Are you saying maybe I misunderstood that, that those with disabilities, the shribal pausia, the muscles would be pulling, and then that the the socket of a typical developing child is not the same as a child with a disability?
SPEAKER_01It depends on the tone, right? It's uh the kids with hypertonia, we did a paper about looking at that at that, and they're those kids are at very high risk of hip dysplasia, and they're more typically have a different shape of the hip, the acetabulum is very shallow in comparison. Whereas children with cerebral palsy, if they don't have any other diagnoses, because as Ginny said, you know, under the cerebral palsy umbrella, we're including all the a lot of genetic conditions. So there's variations, but typically with children with cerebral palsy, the it's the tone and the the hips, the the dysplasia happens later, and and the changes to the acetabulum happen at a much older age, whereas the kids with hypotonia, they may be born that way because in utero they were different. They had they didn't have the normal tone then, whereas the kids with cerebral palsy usually don't have the changes in tone till after.
SPEAKER_04Did you used to put your hand on your wife's belly here and feel your baby kicking?
SPEAKER_03I sure did.
SPEAKER_04Well, when your baby's kicking, they're already muscle pull and they're already forming the joints and the bones. But if your baby isn't developing properly and is not kicking as much and as vigorously, or there's bands in the utero that are in the way and they can't move, then it's you can imagine it's a whole nother thing.
SPEAKER_02Of course. Okay, that makes sense. If I bring this back to the actual practical side of standing, whether it be prone, um, wherever, however, we're going to be doing it, and I'm uh, I suppose it l let's say I'm a therapist, I'm new to it, and I'm a bit wary, I'm just come out of rotation or however, like in the UK, you know, you're maybe going through your rotation, you're in your first official post, and I'm like, okay, how do I know that I've got this child at six months, a year, nine months, wherever, let's just say under 12 months, but in a safe capacity uh anytime from six months, going on where we're at? How do I know it's safe? Like, what am I what might look at in practical terms? Am I if somebody's not fully weight-bearing and they're hanging or they're on the you know, the side support, the laterals on the standing frame, or they're maybe not weight bearing through the complete part of their foot, or maybe on their heels or on their toes. Like, how do I know that's safe? How do I know I'm doing the right thing? Can you maybe shed a bit of light in terms of just the practical side of it?
SPEAKER_04I wouldn't be getting a device till I'm nine months, corrected age. So Kathy's talking about the six month-old, you know, between your legs, on your lap, on your body. Yeah. But in terms of safety, you're looking at things like uh coloration, you're looking at blood, O2 saturation, breathing, like making sure the child is medically stable, that they can handle that kind of positional change, uh, making sure that everything's symmetric. You know, I think you've had Sharon Sutherland on where you sort of start with the pelvis, that's the center of everyone's universe, get that aligned in all three dimensions. Now start going up, get the trunk aligned the best you can. We use the PPAS, the posture and posture ability scale. It's free online, and it just says get everything straight as you can. So go up the spine, go with the shoulders, the head, now work your way down the legs, the feet, and make sure you can't move the foot, right? If you can move the foot and the foot plate, it ain't white bearing. Can you say ain't Scotland?
SPEAKER_03Maybe that's not it ain't we're it. You can. We see you can eat.
SPEAKER_01You can. So Scottish. But you need uh alignment of the knees, I think is the big part. I the big push in standing or the big debate in standing is being abduction or you know how much in terms of alignment. And I think at the start, Jenny, we would we would say shoulder width apart or something, just trying to get alignment when you start first positioning those kids. But you want to make sure that you're positioning, think about the knees, because often people they look at the hips and then they move the feet and they're not paying attention to the fact the knees are going together. And I think in a lot of the standing frames, that's the part you need to pay a lot of attention to is getting really good support above and below below the knee, especially with those kids with high tone. Um, and alignment is really is key. And uh research that's that's been done has shown that when children report that they are comfortable, that's when their therapists thought they were best aligned. That's a real key. So if the child is really upset, if they're crying, you're not gonna persist with that. You're gonna like quite often started with, unless the child you can hold them upright and they can balance their head, and then you're maybe thinking, well, I'll put them into a an upright standing frame. I would often start with a little supine one first, because you can lie them in there, you can get them all positioned, lined up, strapped in, and then you can bring them up to standing slowly and put weight gradually onto the feet and see how they tolerate it and be able to have, you know, toys or things that are gonna, you know, engaging with mom, um, whatever's gonna make them happy because you want it to be a good experience. And then you can from that you can figure out is it gonna be better to have, you know, a pr a prone standard or a different kind. But trying to put a child into a prone standard first off could be a nightmare. Well, you know, sometimes it's trying to like position it's their low tone, it's like trying to position jelly, right?
SPEAKER_02Yeah, no, that's really good advice. I'm I'm loving it. I think that just because a lot of the people that are going to be listening, a lot of the uh people that are gonna be tuning in with us, they're gonna be at all different levels, right? We've all been starting our careers, uh, middle of our careers, at the end of our careers, and everyone's got their own experience. Um, and I think that's what I come down to is experience, right? Because, you know, we've got all we've got you guys and clinically, you know, bowing down to right now. But in terms of um experience, you you've got even more of that. You know, what what we've learned from and how we then do something or our practices align from our experiences. This is what's great to hear and to take on board the practical side of it. Because we all talk about the clinical side and it gets really cool. But actually, if I'm wondering and I'm at the beginning of my career and I'm thinking, oh my gosh, like how do I apply that? How do I apply that?
SPEAKER_04I got three top cheats for ya. My top cheat is really good shoes. So if they don't have braces or AFOs, put on some work boots, some ski boots, you know, something really firm. Second is that the knees are collapsing, or if you're having trouble getting the in the standard, do kneo mobilizers, so something to keep the knees straight for you. And my third top cheat is a cervical collar. So if the head control is really not developing yet and you're nervous when you do the transfer, just go ahead and put a soft cervical collar around the neck.
SPEAKER_02I love that. This is what we're all about. I love the cheat. I love the cheats. Uh okay, great. Where from your side in terms of let's move on. So we've got the child in, uh, we've had the child in for, I don't know, let's say six months, twelve months, something like that. They've been and they're now growing, okay? And their growth plates are not going necessarily where we would want them to go. They're they're not going in their way. How do we how do we know to continue on the role on the path that we are? And uh or how do we know to switch? Or should we be doing something different?
SPEAKER_04If you're MSTS 345, you're probably in a lifetime commitment of being in a standard. That's something you're gonna do, just like brushing and flossing your teeth every day, you're gonna get in a standard every day. That's just a healthy thing to do. Sedentary behavior is the biggest problem in all across all of disability. And even though we call it passive standing, it's not. There's a bunch of great articles showing that you're increasing your metabolic rate, your oxygen consumption, and you actually train your heart rate over time. So being in a standard, even though it might look passive, it's actually quite active and it's exercise.
SPEAKER_03The standing is important no matter what. I don't know if you guys noticed before you came, I dropped my standing desk down because I was like, this is serious. But I have a standing desk. So it's important for all of us. And I think it's in it's a funny thing that we often think that, oh, you're in a wheelchair, then you don't need to stand. Or, you know, you're like, oh, that's not for you then. But it's like the opposite is true. It's because you sit in so much that your need to stand is even greater. But it's just like uh, like I think in now, there's like every time I do a talk on stand in, I always open up this beautiful video, which we'll put in the show notes from ASAP Science. It talks about the dangers of sitting and how it's like the new smoking and how it can take years off your life and all these things. And we're like, oh my god, that's crazy. I, the able-bodied person, need to stand more, but then we don't even think about doing that for someone who's in a wheelchair. So a bit of a paradigm shift on that, I think, is is needed. What I would love to talk to you about is how it's standing. Because all of the research, from my understanding, and I don't have a lot of understanding, but from my understanding, it's all about like straight standing. Like I don't know what you'd call it, but like knees being straight. You like the the load bearing that you're you're referring to of a purpose-built stand-in frame is legs are generally locked out. I don't know if that's the best way. I think you guys would probably explain this better, but on powered standing, often is like uh there's a knee break where you put in a lot of weight. Flexion. Yeah. Yeah, there's a lot of flexion in the knees, there's a bit of flexion in the hips. Do we still get the same benefits that everyone's raving on about in these white papers? Or the okay, for those who are just listening, Ronald are shaking that their chins are touching each shoulder at a rapid rate.
SPEAKER_01Depends on the outcome you're looking for. I think the big uh evidence around uh powered standing is uh for for function, for change of position, stand on demand is one of the themes that's come out in the qualitative literature. There's benefits to changing position. Obviously, that's very good for your joints and your muscles and everything else. But if you're thinking about weight bearing, if you're thinking about contracture prevention, you typically cannot get the aligned position and the full. Upright weight bearing in a powered stander. So it's it's fabulous for lots of things and function and participation and all those things. I think powered standing frames are great. I'm a big fan, but I don't think it necessarily always replaces a separate standing frame. If your goals are bone mineral density and contracture prevention, I think you get that in an aligned, fully weight-bearing position.
SPEAKER_04In the weight bear, in that white paper that you mentioned, they stand for at 45 degrees for 45 seconds, like 10 times a day. So they're using it, but it's not for standing.
SPEAKER_05Yeah.
SPEAKER_02Okay, but like in our world of wheelchairs, we have well, I won't name them, but I can do. We have power wheelchairs that that take us to a standing um position. And you don't have to go to full standing. A lot of our clients that we see uh can't achieve that, right? Because maybe we're meeting them late in their lives. As we all know, if we haven't been weight bearing using the standing frames or uh being not able to, then our bones entity isn't strong enough when we're not at a potential of weight bearing or certainly weight bearing fully. I want to ask you a question though, and here we go. Can it be detrimental though to put somebody who cannot achieve a potentially weight-bearing load or full weight-bearing load in a power standing wheelchair?
SPEAKER_01I've I've seen great benefits from people who've had who have quite limited range of motion, you know, are not able to achieve that full position. I mean, obviously you have to think about things like blood flow and pressure, uh, but if you sort of take all those things into account, you're making sure you're not having those any sort of negative effects from that. I had a client who had spinobifida and had quite significant kyphosis, he had um significant hip and knee contractures, he obviously had reduced sensation because it was a thoracic level spinobifida. He found the the sit-to-stand power chair very effective. He actually was less fatigued throughout the day because in his manual wheelchair, he was in a very flexed position. And the only way to, when he was his ribs were essentially kind of sort of coming down onto his thighs when he was in a seated position with his his legs flat. Um, whereas in the sit-to-stand power chair, he could get himself in that sort of like high sitting position that's often recommended for typical people, you know, getting in that kind of like semi-weight-bearing position. And, you know, I checked his feet. And like Ginny said, his feet were not like I could move them like this in the shoes. Though, and we checked his feet. There was no circulation problems. We did have to do custom knee blocks because that's where he was, that's where he was weight bearing when he went into that sort of semi-stand position. I'd call it bar stool standing. Bar stool standing. That's a good way to describe it. But that was very, very beneficial. But he was actually less fatigued when he went home after school, after when he was in that chair. He could spend uh rather than having to get out of his wheelchair, which he did in the manual wheelchair and lie down after school, he could stay in his wheelchair, he could move around, he could get himself snacks, he could go out for walks with friends out in the communities. Um, so it was a big benefit for the rest of his life. But it's not weight bearing and it wasn't contracture prevention. So it all depends on the goals.
SPEAKER_02Yeah, no, I get that. So there's a huge advantage to his lifestyle. I'm more worried, like I guess you're always concerned whether you're somebody who's prescribing the wheelchair or um a therapy working with a therapist. You always want to make sure that there's no detrimental medical effect, like clinic musculoskeletal, are we doing any damage? Could we be raising the risk of dislocation when somebody comes into certain positions, if they've got really tight hamstrings, for instance? You know, could we be having a more detrimental effect by putting somebody? So I get the benefits of the environmental benefits to that particular client, but uh we I just want to check because there must be people listening going, I don't know if it's safe. Like, how do I know if it's safe? And how do I know it's gonna be okay? So again, there must be some cheats, Jenny. There must be some cheats coming through here for for quick looks, quick checks. And I guess you you would probably pass me back to like the PPES or whatever to to sort of look at that. But when we're talking power and we're talking a non a standing position, um Rosalind, you were great at describing that. So Rosalind had a client and they weren't weight bearing through their feet, right? You said that you could move his feet.
SPEAKER_01He was weight bearing through his knees, so we had to make sure that there was no pressure issues at the knees. So that's all things you would do when you're looking at seating, right? It's the same thing. You're looking at circulation, you're looking at blood flow, you're looking at sort of we call on that. I mean, I've had clients who have been told, you know, the orthopedic surgeon has determined that yeah, their bone mineral density is too low, they're too great a fracture wrist. But it I would say it's very extreme examples. I I would have very, very few clients who you couldn't, with the right modifications and the right padding that you couldn't put in standing. We have plenty of kids who who knee stand because they they love to be in that upright position. You can get the the the more upright position at the hips, but you you they've lost so much range at their knees that they have the contractors are too great. Ginny's published a great case study on using a sta standard with someone who had significant hip and knee contractors and then reintroducing it as long as you it's a case of making sure it fits and monitoring that closely. And when it comes to powered sit-to-stand, obviously it's who's in charge of the controls. So if someone doesn't have sensation, they have to have good judgment about how high they're gonna go. So you don't want someone who's gonna put themselves into a position that's beyond the safe or the comfortable range. So that's the part you have to really look at. But I think in in powered set to stand, I think the biggest problem is they tend not to go as much into standing as we would like them to, usually.
SPEAKER_04The biggest problem is they forget to put the knee blocks on and they go to stand up and then they slip right out.
SPEAKER_03Oh, I've never had that.
SPEAKER_04That's in the literature, that's in that white paper.
SPEAKER_03Wow. Could I ask a question? Can you stand without alignment? So in in times when I presented on standing wheelchairs, I'm like, you know, this isn't a reason. I've got like the reasons not to stand, which is often like your orthostatic hypertension, like if it's uncontrolled, if there's a fracture, there's like certain things like medical advice saying absolutely no. And there's things that's like dangers where it's like it's not a no, but it's like a contraindication. They haven't stood in a while. Um, and one of the contraindications I say if they can't stand without neutral alignment. Jenny, are you saying in your paper that even someone, if they're not in neutral alignment, you could still get them to stand in as benefits, or what's the thoughts around that?
SPEAKER_04I mean, absolutely, and anything you ever do in your life, you gotta weigh the risks and the benefits. And for most of our kids who are sitting or lying all day, we know from Elizabeth Rodby Basquet and Katina Peterson and all the great studies out of UCPUP that and as you're saying, even for you, you've got to get out of that sitting and lying position. You've got to be upright. So the benefits usually outweigh the risks, and we don't have any known risks of standing in asymmetry. Most of our kids come with asymmetry, and we use the standard to decrease the asymmetries. If you do it intentionally and you pick the right standard that you can actually get in there and do some um adjustments there, then that's what we're gonna do. So, no, we I would say probably 90% of my kids that are standing are not in alignment. They're in the best I can get them, but it's not the way it is because our kids are at such high risk for windswept deformity and atypical postures. Just that that just comes with the package.
SPEAKER_01That's right. And and it's really it's very similar to seating. You have to prioritize like what's your important goal. So it's like usually you start with the pelvis, you try to have the pelvis straight, you try to have it aligned with the trunk and balance the head. And then if you've got windswept hips, well, sometimes in standing, you have to actually allow the same as you do in seating, in order to kind of keep the chest and the vital organs and the spine as straight as possible and the head as balanced as possible. Sometimes you have to let legs go a slightly different direction. And if you've got a standard that allows that correction, then that's a a judgment. And obviously those are more complicated standing cases. But if you look at the case study of Ivan that we referred to, he was quite windswept initially, Ginny, right? And then over time, you were able to reduce the windsweeping through having him in standing.
SPEAKER_03There we go. So there you go. It's not a reason not to do it as the the myth may be. It's actually a reason to do it. If someone's out of alignment, this is why we need to stand, because our body finds more alignment once we start doing things.
SPEAKER_01What's tolerable. And obviously, we don't want children or anyone to be in pain uh and discomfort. So it it's it's a matter of judgment, right? There are there are people who get to a point where you you can't make them comfortable and and you might have to give that up. But that's obviously that's not ideal. If you can keep someone weight-bearing, that is the best in the long term. And the knees, right, is the the thing. People have talked about the hips a lot for years, but um, we've been realizing recently, based on the data from CPUP, that the knees are where the contractors happen first in a lot of our more complex kids. And standing is probably is the best place for trying to prevent that loss of range there because it leads to everything else. When the knees come up, then in supine, in bed positioning, then the knees go sideways, then that leads into the the windswept hip deformity. So it's all sequential.
SPEAKER_03Could I ask a question about I did a video recently about standing with a leg length discrepancy. And it's interesting with leg length discrepancies because when we're seated, if you're looking from a bird's eye view, there's a leg length discrepancy, one's higher than the other. And so you might do a cushion that is one, you know, one side's longer than the other to accommodate that. But when we stand, that leg length discrepancy doesn't really happen so much in the femurs. Now it's sort of happening in the height, in the in the footplate. Having a cushion that's two different lengths doesn't really do anything for you. Now you need two different footplate heights. But then when you're seated, you don't need two different footplate heights because it's your femurs that are that one leg's longer than the other, but it's like from your knee to your foot, there's no discrepancy there. But when you're standing, there is a discrepancy. I'll give you my answer of how I did it, but I'm curious as to if you guys have case studies, how do you manage that, knowing that your footplates have to be the same height when you're seated, because there's no reason why they should be different. But then when you stand, if they're the same height, then you're gonna have a very oblique set of hips.
SPEAKER_04I'm the troublemaker, so I'm gonna disagree with your premise. Because if you don't know if it's coming from the pelvis, the acetabulum, the femur, the tibia, the fibula, the foot. Like if you don't do they have planner flexion contracture, like first you need to do a deep dive analysis into why you're having those measurement discrepancies. And you and it probably is a little bit from everywhere. There probably isn't one answer. So I don't think the the solution would be one answer, because it really depends why it's happening.
SPEAKER_03Allow me to be more specific. If if we had a ligament discrepancy caused by what's the most common, maybe a hip displacement, one hip further back or post-surgery, and just for whatever reason, one knee is further back than the other knee in the seated position. How do we navigate that with standard?
SPEAKER_04Again, it's the same answer. You've got to see what the pelvis is doing, because if you're talking about one side having hip surgery, which we really try to avoid, we always try to do both sides so that they stay equal. Um, you've got to go in there and feel. Start at the pelvis, get that as symmetrical as you can. And yes, in the end, if you decide that this is best addressed by just getting a leg length, my guess is your knee contracture and your hip contracture, flexion contractures, are probably more on that side. And you might also have a plantar flexion contraction. So it might be that not a lift or is gonna solve your problem, but you're actually gonna have to do a wedge or a post. But it's it's not an easy answer until you do the assessment.
SPEAKER_01That's right. And what they have in in sitting, the leg length discrepancy that's there in sitting, sometimes when you put the hips into extension, like is actually not as much anymore, can change quite a bit. But that would be why sit-to-stand standards and powered standards are very difficult if you have a lot of asymmetries, because then you have you have to make all those joints work as they go up. And it and as you say, they don't match. So that's why a separate standing frame might be the answer versus the seats, because they might have a complicated seat and then they have a separate standing frame where they can be really well aligned. But it's also the same issue with kids. Sometimes in the AFOs, if you have the the leg length, then they want to put when you have them up in standing or in the walker, they need the sh the rays in the AFO, but then you put them into the wheelchair and now now the footplates are not correct, or you have to change it, whether they're they're on or off. So maybe you need different shoes, some with a lift and some not.
SPEAKER_03That that was part of the solution of what I said. Is that because I think people would instinctively think when you're seated, your knee blocks need to be, well, one needs to be shorter, one needs to be longer. But then when you stand in, that actually wouldn't serve you because why would you want one knee longer? Like it just you I think you guys get what I mean. But exactly what you said, Rosam, was the answer. It was like either having uh a wedge that you'd put in at the time of standing or an AFO with a thicker boot would be the way to go. But your knee but your knee blocks would essentially be the same depth. There's no reason why they should be two different depths because when you stand, we're not having a leg length discrepancy.
SPEAKER_04Well, I think you might, because I think you're gonna have more of a knee flexion contractor on that side.
SPEAKER_03It depends. Your general advice on what you said is exactly true. Like I've had situations where someone's had a very clear leg discrepancy and seated, and I'm like, how are we gonna do this in standing? And we're like, let's just try it. And we're standing, we're like, everything's okay.
SPEAKER_00Like That's right. And then then it's like this much difference in standing, right? And you're like, how did that happen?
SPEAKER_03So you don't want to, and I always say this in my videos, like, I think even that video I even put like this is just like thought-provoking, not uh be used as clinical guidelines, but just like these are things you want to consider that if this does come up, if this problem does come up, this is what you would do to an AFO. It doesn't mean everybody gets an AFO if they have this, is always using clinical judgment in all these situations. But I thought it was cool to us you guys being the the queens of standing, which is I I for sure.
SPEAKER_02I think that we take from that, or certainly what I take from that, is that there's no generic answer, right? It's uh what Jenny said before, or Rosalind was saying that you have to take it on case by case and obviously see that. But that just leads us on. I'm gonna just sidestep us because I we've only got you for a very short period of time. If I say the word interdependence, what does that mean to you both?
SPEAKER_01Well, we wrote a we wrote a paper, Standing and Stepping, for kids with yes, children with uh I was trying to decide if it was children and adults, but it was children uh with non-ambulent cerebral palsy. And we it has an interdependence and F-words perspective on that. And we were looking at why would children need both standing and stepping devices? And we used the interdependence, uh, the I hat model, which was developed from, if you're familiar with assistive technology models, the the hat, human activity assistive technology model is the longest standing model in the literature. And that's really looking at, you know, what are the characteristics of the person, what do they want to do, what's the assistive technology that's going to let them do that? And that's about when we're thinking about independence. And that's typically what we think about when we're, you know, as OTs prescribing assistive devices, help people be independent, is what we think about. For most of the kids that we work with, they're actually interdependent. Doing things completely by themselves isn't usually the goal. It's what can they do with the right supports, the right relationships, and what can give them the so that they have agency, so that they have self-initiation, so that they participate in activities. So when you're thinking about devices like standing, stepping, power mobility, you don't just think about what the child's needs. It's not all about what does the child need to be aligned correctly? What do they need so that their tone is so did so that their head control for their hips, uh, all those things. It's not just all about that. You really have to think about who's gonna be putting them in that standing frame, where are they gonna be using it, what are they gonna be doing in it, and how can we bring all that together. So you'd really need to think about the transfers, it's vitally important, what equipment are you gonna need for transfers? That's one of the biggest decisions about whether you're going uh with a a supine standard or a prone stander is how are you actually gonna get them in there? And a lot of that depends on the transfer. Uh it can be the same for for stepping devices, for any of the other equipment that we're thinking about. You need to think about who's gonna be using it with them, who's gonna be doing providing the support. Uh, how are the other kids going to interact? Are they gonna be at eye level? Are they gonna be at eye to eye with their peers? Are they how are they gonna access the activities? So it's all about doing things together. And we're all interdependent with each other. None of us are an island. We all I kind of uh yeah, Ginny and I do a lot of, you know, she says one thing and that triggers something in me. And, you know, between us we we'll hopefully get the right answer.
SPEAKER_02I like that double team. Love it. I guess what's lovely to hear, and I and I think it's probably something that we all in any of our jobs try and think that we do take on board. But I probably do think that when you think about it, we don't think as much around because naturally you want to help the child or the adult that you're prescribing, but actually, like you say, it's just so important that we actually recognize how they're actually gonna use it, how are they gonna do that, how who's gonna help them, right? And that that's essentially what I'm taking from what you're saying, that we have to do that. So where would I go and to find out where where would I start? If I want to learn more about this, where'd I start? How do I how do I where'd I go? Tell me, please, tell me. I need help. Um I'm gonna go. Uh Jenny, Rosalind, any help?
SPEAKER_01Ginny's phased out there. What happened? We've lost you, Ginny, for a sec.
SPEAKER_04Go to our article that we wrote with Sean Williams, who's out in Perth. She was in uh New Zealand for a while, but she's back in Australia. And read the article on stepping in standing, and then hold out for Raz's PhD dissertation. Uh, a couple of articles on power mobility, and she's gonna tell you all about it there.
SPEAKER_03Well we uh we look forward to that. Um guys, we had an agenda of doing stand-in, step in and power. I think we are out of time to do step in and power, but perhaps another time we can get you guys on and talk a bit more deep about this uh this PhD we're talking about and go more depth into step in and power. That was a lot of fun, guys. I really appreciate you doing that. Would you guys mind if I summarize this? Because by the way, everybody, it is Jenny's birthday today and the wines, I'm sure, I call it. What I don't know what time it is there. What time is it where you're at? Ten minutes before five o'clock, which is wine all. There we go. So we got we got 10 minutes before five o'clock, and then the wines can come out. But I'll tell you my takeaways from this, and if there's any other additional takeaways that should be in there, let me know. But from three to six months, we really want to get kids interseating because we want them being upright and active. We don't want them in this passive position where they're being cradled in their day chairs, something where they can reach and engage with the world is super important. And at six months, we really want to start to encourage stand-in. Doesn't have to be equipment stand-in, but exactly what I was doing with my son at six months, which is like hold him, hold him up against something, look at this, you know, get him as much stand-in as possible. It's not dangerous as long as we try to get as much alignment as possible, fine to do. But at nine months, that's when we want to start doing equipment stand-in, which is more like maybe the supine stand-in or the prone stand-in, depending on what neck control we have. But essentially, even beyond that, we all want to be standing. Since standing for important for all of us in this call today, especially for wheelchair users. And the ideal standing that we want is weight-bearing stand-in, which is upright, possibly slightly abducted or uh abducted as we're growing, as this as the tabulum, as the the ball and soccer joint, for those who don't know what I'm talking about, is is forming. And we want them to have stable, stable feet. If you don't have AFOs, use stable shoes. But essentially we're doing this to increase function. That's the most important one. And it's one you can actually see, which is beautiful. That you don't have to say, well, this research paper said bone mineral density, or this one, like what can you actually see today? And that's where power standing does well. It's like, well, I never I couldn't do this before, couldn't do this yesterday, now I can do this. So that focus on function is a really important one. But if we do want to focus on uh reducing contractures, or um, you mentioned about heart metabolic, yeah, your heart, your digestion, all this stuff, standing is just good um to do as well. As upright as possible is ideal.
SPEAKER_02Don't forget about pooping.
SPEAKER_03We all like pooping. Fun. Standing is fun. Standing is fun, yes. Yeah. Standing is fun, helps with our digestion, everything like that.
SPEAKER_04So we should all be for the fun and function.
SPEAKER_03Yes. And in terms of safety, we could probably I think it sounds like we're all probably a bit too cautious because we were to look after our clients, that we see something that might be slightly off, it's easier just to disregard it. But everything is a scale of like, what's the risk and what's the benefit? And the good thing is if we know the benefits really well, then the risks don't seem as high. And yeah. What do you think after that?
SPEAKER_02I I'm loving that. I'm loving that. I I'm just gonna remind us of the cheat. We got a firm pair of boots, some knee mobilizers, and a cervical collar. And we're away. We are away, guys. Jenny, Roslyn, thank you so much. I hope you've enjoyed yourself. We've certainly enjoyed having you on the on the chat. We really hope you would come back and join us and get a little bit deeper uh into some huge conversations that we've just not been able to chat have. But um, we're all good at talking, I've realized. And I'm not so key. I try and contain and trying to get a better become a better listener, which hopefully we're helping everyone uh listening today to uh enjoy that and learn that along with us. Um guys, thank you again for everyone listening. Thank you for checking out uh wheel chat. We hope you check back in with us on our next episode. But for now, thank you again, Jenny, Rosalyn, cheers for now, Justin. See you next week.
SPEAKER_03Thank you guys, appreciate it, everybody. Bye.