Jen Lyman: Welcome to Cerebral Palsy Health. I'm your host Jen Lyman, and on today's episode we'll be talking powered mobility and powered mobility standing devices with physical therapist and researcher Dr. Lisa Kenyon. Powered mobility is so much more than just driving. I hope that today's conversation with Lisa will help us better understand how powered mobility, and powered mobility standing devices can impact function and participation for kids with CP. Welcome to the Cerebral Palsy Health podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host Jen Lyman.
Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics, and try to shed light on how best to maximize and optimize health, participation and quality of life for those with cerebral palsy. Lisa Kenyon is a pediatric physical therapist and professor in the Department of Physical Therapy and Athletic Training at Grand Valley State University in Grand Rapids, Michigan. Her research interest include pediatric wheeled mobility, non-mobility outcomes of wheeled mobility use in children, practice patterns pertaining to wheeled mobility use in children, therapists clinical reasoning processes related to pediatric mobility and development of mobility interventions for children. You're the perfect person to be talking about powered mobility with today, and I'm thrilled to have you on the show Lisa, thank you so much and welcome.
Lisa Kenyon: Thank you Jen. Thank you for having me here today, I'm really excited to talk with you.
Jen Lyman: Well, I have to tell the audience how I came to find you. It was sort of serendipity I guess. I had the opportunity to write a commentary a year or so ago, and it was on a research article that you had written on powered mobility standing devices. At the time we were getting ready to get one for my son, and we were going through the process and I read your article and I thought it was such an amazing article. I was just so fascinated by your research and I loved it, and then I had such a great time writing the commentary.
After that I followed you and I kept you in my head, and I was like one of these days I'm going to do a podcast with this lady, and we're going to talk about powered mobility and the impact that it's had for children with cerebral palsy and especially early powered mobility. Then hopefully someday if my son gets that powered mobility standing device, which he now has, we could talk about that too. He has so you're here and that's why we're here today, so welcome. Why don't we jump right into it? I'd love to know how you got into the field. What led you to become a pediatric physical therapist and led you down this path?
Lisa Kenyon: There are so many small steps looking back. I can remember, I'm quite a bit older than you Jen, so I can remember being in first grade, that was probably 1971. I was in rural Maine, and this other little girl in the class was my best friend. For the life of me I can't remember her name, which always just breaks my whole that I can't remember her name, but it was only five so I guess it's a little bit excusable. But she and I were always together, and I recognized that she needed help in certain things and the teacher was always having me help her. One day I came to school and she wasn't there, and the teacher just said she wasn't coming anymore. Her sister was one of my sister's best friend, her older sister. I talked to my mom about it and my mom said well, she's not going to be able to go to school in Castine where we were, anymore she has to go to a special place.
I was like okay. I didn't really understand it, but I never saw her again. Later I realized that she had been institutionalized because she had cognitive impairments. I think that, that deep loss that I experienced and this idea, because when I figured it out it wasn't too long before I figured out that it was something related to her, not that she was going to have this wonderful opportunity to do something great, but there was something related to her that made it so that she couldn't stay in our school. It made me really I think angry is the right word, as a child your emotions are all mixed. I always really enjoyed throughout school helping others, in rural community there's an opportunity to help others when you can. Then when I was in high school, I started volunteering at a swim gym program for children with cerebral palsy.
I met this gorgeous little 18 month old girl, and it was so exciting to see her come alive in the water. It's really funny because I don't like the water, I don't like to swim, and here I am with this little one in the water. It was just so much fun and so exciting. I was like oh, I want to be a special education teacher because this is just great. This is a funny thing you're going to laugh. I was like I said living in rural Maine at the time, and the closest university to us was about 90 minutes away. It had a great special education program. Who wants to go 90 minutes away from their house for college? I was talking to one of my girlfriends in high school, and I said you know, I'd really like to go someplace else, but I know it's best for me to go to this other place that's so close because in-state tuition and blah, blah, blah, blah, blah. She said, "Well, why didn't you be a physical therapist? Physical therapists work with kids."
I was like great, I'll be a physical therapist. I've never even heard of a physical therapy school, there's got be one I can go on out of state. I ended up, and remember no internet, no way to search about a career. I decide on a whim, which is not like me I'm very calculated, I'm going to become a physical therapist. This is the best decision of my life. It's just brought me so much joy to be able to work with families and children. I entered PT school at 17, and I knew I wanted to do [inaudible 00:07:05]. I have not wavered from that at all. It's taken me around the world and I still get to help children every day. Now as an instructor, I get to help prepare the future physical therapists that will help more children and more families. So it's just been very, very exciting to me.
In terms of powered mobility, I had as a clinician done quite a bit of powered mobility. In most of the settings that I worked in, it was something that each clinician did on their own. I was lucky enough to have a loner chair for quite a long time, so I'd tried children who maybe weren't typically considered candidates for powered mobility because of their severe motor issues and difficulties with access, or because of their cognitive abilities. I found that with a little creativity they could learn, and they could grow and develop. Maybe they weren't going to be able to independently use a power wheelchair in their community or anything like that. But they could learn and develop and grow, especially the children who had multiple severe disabilities. So maybe they were nonverbal, so we really didn't know if they had cognitive issues or if they were trapped inside of their body. Who had many medical issues, [inaudible 00:08:31], all of this other stuff. I found that mobility was more than a way to get from point A to point B.
Jen Lyman: Absolutely.
Lisa Kenyon: As a physical therapist, I had been trained that that's what mobility is all about. You get from point A to point B and that's it. Through this experience I saw children who had never had the opportunity to move before, learn about how to use a complex tool like a joystick or a switch. That idea of cause and effect, that they cause movement of the device through that joystick or switch. To me that was really something that was foundational for me. I worked on it for a number of years in clinical practice like I said. Then when I came here to Grand Valley State University, one of our local clinicians and alums was working in one of our local school districts. She worked with a lot of children who had multiple severe disabilities. She had partnered with our engineering department, or college of engineering I believe is what they're called, to design and create a powered wheelchair trainer. Where that would temporarily convert a child's manual wheelchair into a power device that you could access with a switch or joystick, mostly switches is what we use.
I was invited to join that project to get some research going, because by that time I had finished my PhD. It was in my wheelhouse and it's just really taken off. We've moved into providing services mostly for children who again are not considered candidates for powered mobility use. So we have done infants as young as five and a half months, up to young adults. Because here in Michigan special education services go through 26 years of age. We've actually gone through that span. It has been a great opportunity, I link my teaching and my research and my service. Because not all of the services we provide under our Grand Valley powered mobility project are research related, there's a lot of service related things. Of course COVID has put a stop to things, but we're getting back at it. We're getting back at the research, we've been in people's homes to help decrease the chances of COVID transmission, all sorts of masking and everything. Really excited that numbers are getting to the point where maybe we can restart the service aspect of our program back on campus.
Jen Lyman: What an amazing story, and how it came full circle that you thought you wanted to be a special ed teacher and then you became a physical therapist and then you're sort of doing both. You're making an impact in a way that's so meaningful and actually broad worldwide now. It's impacting insurance hopefully in the future, and we'll be getting kids powered mobility devices that obviously wouldn't normally be considered candidates for them. Let's talk about that for a little bit, because I think a lot of families and parents and even therapists are scared. I remember my son was three and a half when he was evaluated for his first power chair, and it was using a head array which is a considered a proximity switch.
I'm like oh God, instantly I was thinking is he going to be using a joystick? There's no way he can use a joystick. Is he going to be driving? Then when I saw, and I'll certainly post this video too. But the look on his face when he put his head up and he realized that by putting his head up it would make this thing go. That if he looked to the right it would make it go to the right, and if he looked to the left it would make it go to the left. It was the cutest thing I've ever seen. It was interesting to... I've watched other kids have similar experiences just putting their hands on a button. It's a difference that people need to get their heads around. Not everybody starts out with a joystick, joysticks are more like a gas pedal.
The harder you hit on a joystick, the faster you're going to go. Joysticks have a lot more range. So they are, so I know people think of driving a wheelchair and using a joystick and I can see why that's scary. But these proximity switches, these switches are pretty cool. I don't know if you can elaborate a little bit more on it and how you determine placement and that kind of stuff. But it's pretty neat to see somebody do an evaluation and look at some of these little bitties, some of these kids that you're saying five and a half months old. It's pretty cool.
Lisa Kenyon: Definitely. There are a variety of access methods. The access method is what controls the device. The child activates the access method to control the power mobility device. So like you said, there's head arrays which are highly complex tools, and wow congratulations to your son for conquering that one. I must admit that when I try to use somebody's heady array to move their chair, if they don't have an attendant remote, I typically run into things because it's a hard thing to do. I really am excited that he was able to conquer that learning.
Jen Lyman: Well, I'll interrupt you on that. He conquered it, he figured it out, but then he decided he didn't like it. I'll digress for a second then I'll let you give... It was an interesting reason. It took him a second to focus, so if he had to pick his head up and it made it start moving, he had to focus his eyes and that scared him. He was very excited about it and he knew exactly what to do, but it was definitely one of those things where we decided that, that wasn't the right thing for him and we switched to a different type of process. But that was the initial, that was exactly what we went to first and it was interesting to see. So anyway, I'll let you finish.
Lisa Kenyon: Sure. But those proximity switches are what we call electronic, or you don't have to touch them. They sense for lack of a better word, the proximity. You can set them sometimes about how close you have to get and how long the closeness has to be maintained. I use a lot of mechanical switches with the children that I work with, some big round ones or some of the little tinier ones or a couple inches across. Depending on the child, sometimes I just start with a single switch in a single direction, and we can use our attendant remote to provide some steering and things like that. But trying to help them get that idea I hit this switch and I make the device move.
A lot of children like to spin, and so I often start a child in spinning. If the child has seizure activity I'm very careful, I only let them spin a couple of revolutions before I help them stop so they get the idea of stopping, and then allow them the opportunity to continue again. I like the mechanical switches for my children who have cognitive impairments or issues, or visual issues because it makes a click, and it engages the motor too. So you hear the click of the switch and then the engagement click of the motors on the device. There's something to be said for joysticks however, and I'm really excited I think one of my colleagues is going to be doing a study comparing joysticks and switches in this population of children who have multiple severe impairments, including cognitive impairments.
Because a joystick is a different type of tool, right? It's different than a switch. When you're using a switch and you want to add in more directions, you have more things to worry about. It requires more access points and things like that. So maybe I have a child who has one switch for forward and one for right and one for left. That's still a lot to manage. There's some thought in our research circles that maybe we should have given the child a joystick to begin with. Take them longer to learn, but maybe they, and ultimately could be more successful.
Because it's a more complex tool, even if they're not able to move to the point of having their own individually prescribed power wheelchair, and using it independently in the community and things like that, maybe they're able to take that tool use learning that they've gotten from the joystick, and transfer it to other tools like augmentative communication devices and things. We've had some, and this is anecdotal only, we've not had it as a research outcome. But we've had in several of our research studies children who went from using the switches for operating our power wheelchair trainer, to then being able to do switch activities as well as eye gaze for communication. These are kids that are even kids with visual issues who are doing eye gaze for communication, which I don't know if you've ever tried but it's really hard.
Jen Lyman: It's very hard. You've got me thinking, because I'm just thinking how do they calibrate the eyes if you've got visual issues? Wow.
Lisa Kenyon: I credit the speech and language pathologist in our area for all of that. I'm just glad to see that anecdotally what we're seeing is these children learn cause effect in the power device. It is quite a powerful activity, right? No pun intended. Because when you're moving yourself, when you have self-initiated locomotion, we know that that's so powerful for the typically developing child and starts this whole cascade of developmental changes. For these children perhaps that opportunity to use the tool that is so pleasurable, you're getting the [inaudible 00:19:23] of it, all of this stuff. You can go where you want, you can run away from your mother if she's trying to wipe your nose, all of these types of things.
Maybe that's so powerful that they're able to take that learning and put it into another situation, which as we know is very challenging for all of us to do. We often learn in a single situation and then have difficulties in another situation. I grew up very rurally as I said. When I had to drive in inner city Boston, oh my gosh, it's an entirely different experience than driving a pickup truck to pick up hay bales out in the field. I could understand why our children sometimes have difficulty with different settings, different environments and things like that.
Jen Lyman: Even with again, going back to my son, but I have another friend that works with me and we were talking recently and he said in his home he drives, but when he's in unfamiliar places and due to his own visual issues and things like that, he has his attendant drive him. My son's the same way. When he's at school, when he's in familiar places, he can get from short distances point A to point B, does a nice job on a route. In a mall in a place where he's not mm-mm no, and that's fine. We don't care, for him it's functional. It gives him the independence that he needs when he needs it. I feel like the whole thing is functional. It's different levels of function for him. Having the attendant control it is functional for him when he needs it, and having him control it is functional when he needs it. I see it as a cascade or different levels of functional mobility, and that it shouldn't be a if you can't do this 100% of the time then you shouldn't be allowed to have this. It doesn't seem fair. We all aren't the same, sometimes I take an Uber.
Lisa Kenyon: That's right. I think you bring up an excellent point there Jen. I always encourage my students to try to match their patient's mobility to their patient's functional situation. If you think about it, just like you said, as adults and most typically developing children, we match our form of mobility to the functional circumstances. I don't typically walk the 20 miles to the airport, I take a car or I have somebody drive me, or if there's public transportation available, which there isn't here, I might choose to take public transportation. Or I might choose to go out for a bike ride for exercise. I always use the kind of idea that I can do a cartwheel, and occasionally I have children that make me prove that I can do a cartwheel. But I can do a cartwheel. But if I had to do a cartwheel to get around every day, so every time I wanted to go walk over to the sink and get a glass of water I had to do five cartwheels.
Or if I had to do 100 cartwheels down the long hallway at our university, I'd be exhausted. I wouldn't have the attention for learning or teaching, and I'd probably start developing some issues with my wrist and shoulders because of all that forces that I was putting on my joints. Yet somehow we expect for children who have mobility limitations, that they can only have one option. I really try to promote in my clinical care for the patients that I still see that idea of multiple mobility options when we can and how we can. A lot of the children that I work with clinically, and I'm not doing any direct clinical work right now with COVID and trying to do my research, that's about all I can fit in. I'm trying to minimize the risk for my research participants. I try to encourage families and children to think about okay, so my child has this power wheelchair, which the insurance paid for which is really great.
But maybe through an equipment loan program, we have a couple of great equipment loan programs here in our area. Or one of my moms is a great eBay person. Personally I've never been on eBay, but she goes on and find these great things that somebody just wants to really essentially get rid of, but for just a little bit of money will pay for the shipping and she can have a couple of other things. She has found a manual wheelchair. Doesn't fit her child perfectly, but he can use it in certain environments, and he's able to get around short distances in the manual chair, a few feet. Then she was also able to find him an adaptive bicycle. He's able to ride the adaptive bicycle. Not in the middle of our Michigan winter, but you don't see other kids out riding their bicycles. Another mom found an adaptive toboggan. Sledding is such a big activity here in West Michigan, I love to slide myself. The opportunity, actually they have this great driveway that leads into a cul-de-sac and it's a great hill.
Jen Lyman: Oh my gosh.
Lisa Kenyon: To watch the joy on this child's face and his dad's, because they both love the speed and little bit of danger, calculated risk of course. But I think that we often forget because insurance says you can have one device. Doesn't mean you can't... It shouldn't that you are restricted to that one device. I think it often does, but it shouldn't. I also encourage whenever possible, again sometimes we have insurance restrictions, but families have been creative and again we have a couple of equipment loan programs. They have really well developed equipment loan programs in some areas of the world like in the Vancouver region, in British Columbia, Canada, they have a great regional equipment loan program. Gait trainer walker, even if you're using that for exercise it's the same as me using a biker or treadmill for exercise, and heart health is really important.
Jen Lyman: Absolutely.
Lisa Kenyon: I think that for me is obviously an issue that I'm quite passionate about. I apologize I went on and on and on.
Jen Lyman: I definitely find that we have multiple mobility things going on around here. I feel strongly about that as well. I feel like for functional mobility and for exploration the power chair is fantastic. We have a race runner and my son loves the race runner and last year participated on the track team, and was able to... That's exercise, that's cardiovascular health. He just grew out of his adaptive tricycle, and we're actually now getting him a recumbent bike, which is really cool. We're looking into and demoing those right now coming up on summertime and looking forward to that. I'm a big fan of recumbents for kids with CP, just because you take the trunk control issue out.
I feel like it's different than the upright tricycles. I really like that he's able to sit back and push that way. I like that for him a little bit better, so I'm excited for him to have that opportunity to try that out. I like separating out the exercise from the you've got to from point A to point B, or you want to hang out with your friends and keep up with your friends and socialize and do that kind of stuff. We all have to exercise, so I like to separate that out too.
Lisa Kenyon: Mobility is only functional if it's efficient.
Jen Lyman: Yeah.
Lisa Kenyon: We teach that in our, at least in our PT education program, physical therapist education program, we teach that to our students. But sometimes I think we forget that when we're out in the field. Of course, I would never go against a parent's wishes. I can provide some education, but to me the parent is the parent, and so the parent's making the choices that they feel are best for their child, their family, their circumstances. Because I can never begin to imagine all of that. Because what works for one person might not work for another or another family. I also try to provide some education and let families make decisions and let it go at that. Because I think that that's important. The parents are the ones that should be empowered. The parents and the children should be empowered. It has nothing to do with a profession or a professional directing I think is the word I want, or dictating what happens. That sometimes unfortunately can happen occasionally. I don't think it happens as much as when I was littler, but I think it still can happen some.
Jen Lyman: I think that having the conversation about the GMFCS, the child's GMFCS level and making sure that the parents are on the same page as the therapist and everybody knows okay, this is what we're talking about, this is what the mobility range that your child's going to be functioning within. It's helpful because you can as a parent get your head around okay, we're going to be using a gait trainer. The gait trainer might be functional for certain things, but it's not going to be for all the time use. A wheelchair's going to probably be better for other things. I've always found that it's, at least for me personally and other parents that I've talked to have found that just knowing that is helpful for ensuring that when we're talking with our therapist and when we're talking with the team, we're all speaking the same language. Our ideas of what the goals are for our children and what our children's goals are, are in line with what the team is thinking okay, this is [inaudible 00:30:36].
Lisa Kenyon: I would probably argue that the team should be listening to the family's and the child's goals. If for some reason I don't think a goal is safe, or I don't think a goal is practical at this moment, I have a professional responsibility to explain that to the family, and then we collaborate to come up with something that's agreeable for all of us.
Jen Lyman: Absolutely.
Lisa Kenyon: I think that that's really important. That idea of collaboration is so important. We think about collaboration and within our research project in so many different ways. So not only do we think about collaboration on an IEP team or a medical team. But we think about collaboration, so when I'm working with a child and helping them learn to use a power mobility device, I'm collaborating with that child on that activity. It's my job to make sure that, that child feels safe and secure physically, emotionally, all of these other things, and to create an atmosphere, a positivity where the child feels that it's okay to make a mistake. I was with a child yesterday who got a power wheelchair standing device as part of one of our studies, and we were at school. He's really not ever driven. He drove during the mini trial, the fitting, so he drove for about 10, 15 minutes.
He's at school and he's driving and he's driving and standing and he's doing a fantastic job. He's still getting used to the device he's been in it like five minutes. He nicked the door and the door is a large door, so it slammed open. The teachers were all like whoa, and I'm like it's a door, nothing happened. He's learning, let's not discourage him by overreacting. If he's still doing this in a week, a month, whatever, I can make some adjustments to the programming so that it's a little slower, a little less reactive, whatever. But that was I mean he just barely nicked it.
I was like my goodness, if you put me in that thing, I would've probably broken it. You're just having that kind of collaboration and keeping the child and family, because if a family is not feeling safe and secure, if a family's feeling threatened, child's going to pick right up on it and they're not going to trust the provider. I've learned over the years that I've got to make everybody feel safe and secure, because none of us are going to be at our best, none of us are going to learn at our best if we don't feel safe and secure both physically and emotionally.
Jen Lyman: Yeah, absolutely. I always think that would be a bit of a uphill battle with some schools, especially with children bringing new power wheelchairs into the schools and having a team that's very unfamiliar. Some of these wheelchairs are pretty scary. There's a lot of bells and whistles and buttons and things that go wrong. It is a learning curve for everybody for sure. I would think that coming in and training the team, you've probably trained quite a few teams. I'd love some advice on that. I would love to hear how you present it and how you help them best understand how to do this.
Lisa Kenyon: For me, my experience has been that in the late 80s and 90s, and even into the early 2000s, I had much more difficulty trying to get schools to agree to have a power device or other unique equipment in the schools. I find that today I think there's much more information available, it's much more common to see these devices for children. I think that that has helped the school systems to be more open to it. The school that I was at yesterday, it's one of our special charter schools. A charter school is not a public school but it's not a private school either. It's a unique Michigan thing, I'd never heard of it. It was amazing to me how welcoming everybody was, not just to the idea of the power wheelchair standing device, but to me coming in. I'm not a school employee.
They did a background check and all of that on me. I'm glad to have them do it, I think it helps make sure the children stay safe. If this had been 10 years ago, I don't know that somebody would've allowed me in. I'm really excited about that. I think education and empowerment is really important. One of the issues can be that people don't understand what to do or how to respond or what's possible with the device. We talked a lot with the teachers about if these settings aren't working, we can change it. The equipment representative from the manufacturer that I was working with was talking to the child about speed, because the child really likes to go fast. Which like all kids do right? Or many not all, but he was just enjoying it. We had told him that we're just going to give you this amount of speed, which was still faster than he could do on his own in his walker, and go much further distances of course in the power wheelchair.
The representative from the manufacturing company said to the child you need to learn how to control the speed, and you need to control this chair and that's going to be easier at this lower level. When you're ready, I'll come back in. Lisa will call me, I'll come right back in and I'll change those settings. It really seemed to put the child at ease, but also the teachers. In fact, he was going to stop by the school today. The child got it yesterday, he was going to stop by the school this afternoon and just check, make sure everything is going all right. He volunteered, the parents don't have transportation set up from the school yet, he volunteered to bring it home for the child over the weekend. He's going to pick the chair up on Monday and take it back to school.
Jen Lyman: Wow.
Lisa Kenyon: Hopefully transportation will be set up within a few days. Members of the team going above and beyond is just something I see a lot of, and just something that seems little right? Coming back and picking up somebody's chair and dropping it off at their house and picking it. But that's huge for that child because he's going to have it all weekend.
Jen Lyman: Exactly.
Lisa Kenyon: That's huge.
Jen Lyman: That is one of the issues that arises with these power wheelchairs and power wheelchair standing devices, is it does mean that you have to have a ramp van. It does mean that you have to have specialized transportation. In some cases it means that you have to make home modification. That is what families do grapple with that is a struggle and can be a limiting factor I think in the decision making. For years, we kept the power wheelchair at school. We didn't have an accessible home and we didn't have an accessible vehicle, so the power chair stayed at school. We had a manual chair that we transported our son in, and that was the way it worked until we were able to have a accessible home and then have the ramp van. But we made it work until that point. But I know that for some families that's not possible. But that was our solution, and it was great because the school enjoyed having the power chair at school, and it allowed [Bauer 00:38:57] to use it there. That's definitely a part of the decision making process for families is this.
Lisa Kenyon: And the economics of it all right?
Jen Lyman: Yeah.
Lisa Kenyon: I'm not sure quite how to say this, so I apologize if I'm misspeaking. But I think that there is a little bit of an injustice there, or maybe it's more than just a little bit of an injustice, maybe it's a huge injustice. That in our society if you can afford to put a ramp into your home and you can afford to make the home modifications, and you own your own home so you can do those modifications. It's not easy but it's easier. For my families who they're renting and the landlord is like I don't really want you putting a ramp in there. I know that there are some legal ways, but then where's the family going to go? Is the rent going to jack? All of these other things. Most insurance companies in our area do not pay for any van modifications. That's another thing that the family has to shell out.
I know that there are a couple of church groups in our area, one of their service activities is constructing ramps for people who need it. I think that's such a great and wonderful thing. But not everybody can take advantage of that because there's only so many ramps that those crews can put up at once and so sometimes the waiting is long. My focus is of course on children and families because I work with that. But they're covering a lifespan and there's so many older adults who have sudden changes or people who are in a car accident who have sudden changes.
There's so many needs and it would be really nice if there were other ways to help people so that there wasn't this divide that becomes a huge chasm for people who are able to pay for something versus people who aren't able to pay for something. I know for myself I feel like I make a good income, my husband makes a good income, but we couldn't afford to spend $25,000 on an accessible van. It's just not money we have lying around. Nobody has that type of money lying around. Well, maybe those billionaires do, but us regular people we don't have that money lying around.
Jen Lyman: Yes I think a lot of people would think that Medicaid would pay for all of this, and the weight and the capabilities and often the red tape is not going to happen. There's also oftentimes pretty significant limits to how much they'll put towards a ramp van or home modifications or any of that kind of stuff. It's not fair.
Lisa Kenyon: I think Medicaid varies a lot state to state, and I know that there are some states who don't cover those things at all. Or like you say it's so minimal, $25 isn't going to get you very far.
Jen Lyman: Exactly.
Lisa Kenyon: The other thing to think about is a lot of our working families don't qualify for Medicaid. So they're in that limbo zone where they don't qualify for Medicaid, but they can't pay for these things out of pocket. That's a huge limbo zone for a lot of our families.
Jen Lyman: Absolutely. I know we're not going to able to solve this problem, which I think everybody... It's a hard one because I think I feel strongly about early powered mobility. I think it makes a huge difference for participation, for cognition, for function. I don't know that insurance necessarily thinks those things are important. Moving forward to talk about the powered mobility standing devices, this is another one where insurance companies don't necessarily think a powered mobility standing device is an important thing for somebody. They might pay a stander, but they're not necessarily going to pay for a standing device that's built into the powered wheelchair. I can say that it's probably been one of the biggest, greatest things that we've ever gotten for our son.
The school thinks it's the greatest thing that he's ever gotten. It's completely eliminated the need for us to transfer him to a separate stander, which was impossible at this point in his life. I could not physically do it, they could not do it at school and so he wasn't standing. That was one of his goals. That was one of the things that he loved to do, that he could participate in different ways in different positions. There was obviously the benefits of standing that we all like to talk about, digestion and weight bearing and weight shifting and just that range of motion or getting that extended stretch. But really for him again, it was participation. It was being able to stand at eye level with his peers. Getting this power wheelchair standing device and being able to stand when he wants, and stand throughout the day and multiple times throughout the day. He stands now and watches football games, like a full on football game.
He never stood for four hours before. But I know that this is for us, we paid out of pocket for this portion of the power chair. It was because insurance denied it and it wasn't fair. We had an amazing team that fought that wanted to... We were going to make a name for ourselves with this and it didn't work out that way, and it was really devastating to us because I really wanted to do it for all the kids and show that this should be covered. It really has been meaningful. I'd like to argue that I think that if we could see more devices made that are integral, integrated, standing into the wheelchairs rather than the separate standers. That transfer is not easy. Giving the kids that autonomy I think we would see more compliance, and I think we might be able to influence insurance better. I just don't know how to get my head around it. I'd love your thoughts. Thoughts please Lisa.
Lisa Kenyon: Well, I know it's not practical or possible, but as a therapist what I'd really love to do is get together all the heads of all the insurance companies, all the Medicaid and all of that together, and have them have to stay in one place all day long because they didn't have the physical capability to move. Let's pretend you have to just sit, and we're even going to let you sit, we're not going to make you lie on the floor. We're going to let you sit for a whole day. You can't make any decisions, people are going to come in and move you. You can't make any decisions, you just have to do it. Then I'd like them to have to sit all day long and maybe they magically are transported in this chair. Maybe they can even have a manual wheelchair and get around a little bit themselves, but maybe not because that defeats the purpose with a power wheelchair. But you can't stand up and get anything.
Think about it just this morning, it's still fairly early on the East Coast here, all the times that standing has been functional for me. From activities of daily living to making my coffee, reaching up for my coffee, and boy do I need that caffeine. I think that medical necessity is a concept that relates to the medical paradigm. Rehabilitation doesn't always fit in to the medical paradigm, because we are trying to, as rehab professionals, we're trying to ameliorate some of the secondary complications. Secondary complications that are important to families, to children aren't always important to insurance companies. In some of our qualitative studies regarding power wheelchair standing device use, we found overwhelmingly that parents, families, therapists, everybody felt that the participation and activities that were enabled by the standing feature far surpassed any of the body structure and function things.
Those were nice, but the activities and participation. One family talked about how they went to this racetrack every year, and the child's sitting in the wheelchair all the time and she can never really see. She got her power wheelchair standing device, and she's sitting there, can't see, she just stands up and mom's like oh my gosh, I never thought of that. Sometimes we find that children have to be prompted to do these things because they've never had the opportunity to do that, but she was able to come up with that on her own. A couple of the participants that we interviewed did things like singing choir, and how much better they were able to sing and have solos. I can't carry a tune if you put it in a basket and strap it to my wrist.
I was quite fascinated by the fact that these children could identify that they could project their singing voice better in standing, and it was more typical for what everybody else was doing. Singing the national anthem, standing at church. One of our participants talked about how at church they would stand up and sit down, and stand up and sit down, and stand up and sit down. He always felt like he'd said it just felt odd that I couldn't stand, and now I can stand when everybody else stands and I really feel I belong. To be able to feel that sense of belonging in a religious community I think it's not necessary from a medical perspective, there we go, I'll change that around. But what a difference it makes in an individual's life.
Recognizing that people are more than the sum of their physical abilities, there's your emotional and your spiritual and all of these things. I'm not quite sure what the answer is, I think that's one of the reasons we're trying to do more research. It's certainly a little bit of a segue for us in our research, because typically we work, like I've said, with children who are not typically candidates for power mobility and are more driving for their learning than learning to drive, unless we have somebody with access problems and then we're just helping them with access. But when I began to really investigate the power wheelchair standing devices through this qualitative study, I was really convinced as one of our participants said, it's so much more than weight bearing.
Jen Lyman: Mm-hmm.
Lisa Kenyon: That idea of that autonomy that the kids can decide. With the power device, not only can they decide where they go and what they want to do, they can decide am I going to sit or am I going to stand? As typically developing adults, we do that all day long. Typically developing children typically make the choices between lying, you know how children like to flop on the couch, or sitting or standing. I think that being able to do these things standing, might make the children feel better about themselves. At least that's what we heard from our child participants in particular.
One of the young ladies, she was 15, very articulate young lady. I was not articulate at all when I was 15, let alone as an adult. But she was able to say, "Eye contact is so important in our society, and it seems like a little thing. But when I'm able to look face to face with somebody and look them in the eye, that makes a huge difference in how I'm perceived as a person." Her mother separate, because they were not interviewed at the same time as far as I know, couldn't even overhear each other. Mother said she can literally stand up for herself now, and it's a lot easier for her to advocate when she can get upright and look at people in the eye. Rather than that already being looked down upon when she's in sitting. The hugging factor oh my gosh.
Jen Lyman: The hugs, I know. So cool isn't it?
Lisa Kenyon: Yes. One of the teens in our current power wheelchair standing device exploratory trial, when he did his fitting and got to use the chair for about 15 minutes before we started our baseline, he was giving his mom a hug and mom was crying, he was crying, dad was crying. I was trying not to cry because it's probably not appropriate for me as a researcher to be crying. But you know what an amazing moment. What he wanted to do, he only had a few minutes like I said to try the chair. What he wanted to do was drive to his parents and give them a hug, drive to the other parents and give them a hug. What an amazing, you can't call that a medical necessity, but it's like those Mastercard commercials priceless.
Jen Lyman: Absolutely. You're going to make me cry. Yes it is, I know with Bauer that's one of his favorite things. He does it with my mom and it's so sweet. I can tell you too he's just blossomed with this. It's been so cool to watch the impact that it's had for him. I do wish that we can solve the world's problems with this, and try to help kids and adults get them because they really are beneficial, and I don't care what insurance thinks. I'd love to know, are there resources out there for families who are interested in powered mobility or powered mobility standing vices? How would they even approach this start getting, where do they go? Where do they learn?
Lisa Kenyon: Well, there's a couple of great resources. The RESNA, which is the Rehabilitation Engineering and Assistive Technology Association of North America think I can, I'll never quite remember all of it because the whole acronym [inaudible 00:54:34]. But RESNA has a physician paper on pediatric power wheelchair standing devices. I think they call it standing power wheelchairs. The idea of a power wheelchair standing device is a new term that the research community has coined. I learned about it when I submitted the article that you wrote the commentary for, to try to differentiate between devices that can be driven in either sitting or standing and ones that just stand but you can't drive.
RESNA has that really nice pediatric standing wheelchair I think it is white paper or physician paper. Then they also have one on the use of pediatric power mobility, and I think those are both very helpful. They have a bunch of white papers there. They have white papers on seat elevators and all of these other things, the leg adjustments, the leg raise all of those types of things. Those have a lot of research in them that can be given to a insurance company, I know I've done it myself. Then there are a couple of other advocacy organizations that have packages like NCART and I cannot remember-
Jen Lyman: I have NCART on the CP resource website and-
Lisa Kenyon: They have a lot of great resources.
Jen Lyman: Mm-hmm.
Lisa Kenyon: I think one of the-
Jen Lyman: The National Coalition of Rehab Technology.
Lisa Kenyon: Something about providers yeah. I'm sorry I'm not really good at acronyms. We speak in them, but we don't always remember what they're supposed to be standing for. But they have wonderful resources. They have or at least last time I checked, they have a packet for standers. A lot of that information might be able to be applied to a power wheelchair standing device. There's also I think something to be said for our community of rehab professionals being more aware that the standing devices are an option, the power wheelchair standing devices are an option. Here in our area, I'd say that our therapists by and large are really evidence based and up on state-of-the-art stuff. But because of the issues with funding and other things, this is what one person described to me as a niche of a niche of a niche of a niche practice area. There's a lot of times where therapists might not be really well versed in them or really even know that they exist. I think that it's important to do more education. That's one of the reasons that I'm hoping the podcast will get out there.
Jen Lyman: Absolutely.
Lisa Kenyon: I would say that in our area, the handful of children that I know who have a power wheelchair standing device have it because their parents found out about it and came to their therapist or their assistive technology equipment provider, and said I want this for my son. It's very rare in our area that the therapist is saying hey, let's think about standing first. That was another concept I was introduced to. I was collecting some information about a presentation I just completed related to evolution of the power wheelchair standing device. I talked to a lot of different folks who were involved in manufacturing them or involved in promoting them, all sorts of things. It was really fun to do.
One of the therapists that I interviewed as part of that talked to me about stand first, which was an initiative to when we see a child, when we see an adult who needs a power wheelchair, let's think about standing first, and see why would it not be good for this person to stand? Is there a reason this person [inaudible 00:58:43]? Or does the person not want to stand? That's of course a valid reason not to get a device. But otherwise her point was, and this was a grassroots effort amongst some therapists that she was working with. That idea of let's think about standing first. This child is going to stand this adult's going to stand unless we can find a reason not to.
I really like that idea, it really caught on to me. When you're teaching in an entry level physical therapy program, it's hard to fit everything in. There's so many things, what is entry level? I try to do a little bit of pediatric power mobility at least, but it's probably not that entry level. This summer when we're back to our typical schedule hopefully without any COVID restrictions, I'm going to introduce the idea of power wheelchair standing devices and just really try to start hitting home, just like I do with the pediatric power mobility, training the next generation is going to help get things out sooner.
Jen Lyman: Absolutely.
Lisa Kenyon: The research takes anywhere between 10 and 17 years to be enacted, even when its strong research, and we don't have any strong research in this area. If we can start our students thinking about it, then maybe when they become therapists and have a patient they'll think oh, stand first, and then let me talk myself out of standing.
Jen Lyman: Why we wouldn't do this, right.
Lisa Kenyon: In the clinical reasoning process, I was just working on this lecture the other day. So in the clinical reasoning process, I'm promoting that they think stand first. Then clinical reason your way out of why they shouldn't. But also make sure that you're documenting why they can and why it is beneficial. So that when you're writing your letter of support, your letter of medical necessity is what we call it here, you can put in all of these things, and hopefully it will change the opinions of wheelchair funders throughout the US and around the world, because the US isn't the only one who has this issue.
Jen Lyman: Well, let's close things out today with my last question. I'd love to know what you think will have the biggest impact on cerebral palsy in the future. Do you think it's legislation, research education? I have my ideas of what you're going to say, but go for it, I'm so curious.
Lisa Kenyon: I don't think we can take a one prong approach to change, and hope that, that one prong actually creates all the changes and all that we desire for people who have cerebral palsy, adults and children who have cerebral palsy. I think it's going to take all of those. I think it's going to take education, education of medical professionals, education of rehab professionals, education of society, education of our legislatures, education of everybody. Also, I think is going to take research, strong research. I think that those things lead to societal change. When you have societal change, that's often reflected in your legislation. There are a couple of really good articles that are coming out, I know one's already published. I believe the other one is in process, I'm not 100% sure.
These papers were written by members of the, oh gosh now I'm going to forget the name of the group. The clinicians task force there we go, sorry about that. They've already had one paper come out and it's a policy analysis paper on the power standing feature. Then I believe if I remember from talking to their director, if I'm remembering correctly, she said that they had another paper coming out about I think it was the seat elevator. I think those things will be really great to take to your insurance company. The hope is that the processes that they went through will actually help change Medicare's view on things. Because if Medicare views these things as medically necessary, then other insurance companies will.
Jen Lyman: Trickles down to everything else.
Lisa Kenyon: But the idea of medical necessity is one that I think we should really try to reexamine as a society, as a funding limiter. Because medical necessity worked great when we were all in a medical model, but now there's so many other models and we're not in that disablement model anymore. We're using the international classification of functioning disability and health. Those pieces of assistive technology are such huge both personal and environmental contextual factors, that can really change a person's life and the expression of their condition and in their abilities. If we can try to get the people who hold the purse strings, I know there isn't limited money. But if we can get the people who have the purse strings to loosen up a little bit, I think that, that would be a really good idea. I still think we need to make sure we're being good stewards.
Jen Lyman: Absolutely.
Lisa Kenyon: I don't believe in just willy-nilly ordering equipment. Not only is my license on the line, but if I'm not a good steward there's not going to be money for other people who need it. I need to make sure I'm being a good steward. I'm not saying that woo hoo, let's just start throwing money at the problem, because that has been shown not to fix things too. But I think that it's time for a change.
Jen Lyman: I think that's a beautiful answer and you're absolutely right on target. I will put those papers on CP resource as well so that people can access. I'm tremendously, tremendously grateful for your time today. I can't even tell you how much I've enjoyed this conversation, it's been wonderful. I really can't wait to see more research that comes out from you and your team. However I can help, and I will definitely spread the word about this podcast. Yes, thank you so, so much.
Lisa Kenyon: Thank you, thank you.
Jen Lyman: I also want to thank my producer, Greg Tilton, who will make us both sound a lot better and maybe a little bit smarter who knows?
Lisa Kenyon: Thank you Greg.
Jen Lyman: Yes, he's fantastic. Like I said, all of the information and papers that we've discussed will be on the cerebral palsy resource website. Thank you, and I hope you all find this to be a conversation that counts with an expert that cares. Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram, you'll find the links in the show's description. Please feel free to email me with comments, questions and topics you'd like to learn more about at jblyman@mac that's M-A-C.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and/or any other medical concerns with their personal medical team.