CRT & the F-Words of Disability
- By Laurie Watanabe
- May 11, 2023
Complex Rehab Technology (CRT) is a means to an end. When wheelchair riders are children, that end is especially multi-faceted, as movement and mobility are crucial to their learning, socialization, and development.
In 2011, a pair of colleagues from CanChild — a center of McMaster University in Hamilton, Ontario, Canada, devoted “to generating knowledge and transforming lives of children and youth with developmental conditions and their families” — published a paper called, “The F-Words in Childhood Disability: I Swear This Is How We Should Think!”
In their paper, Peter Rosenbaum, M.D., and Jan Willem Gorter, M.D., Ph.D., referenced the World Health Organization (WHO) definition of health as “the ability to adapt and to self manage.” And the authors distilled their experiences and what they found in research on child disability into six “F-words”: function, family, fitness, fun, friends, and future.
How well is complex seating and mobility promoting the health of children and serving them and their families based on this group of terms?
Function: Is It the Center of Everything?
Of all the F-words, function is probably the most often discussed, and it’s seemingly the ultimate goal of complex seating and wheeled mobility equipment. Function is, after all, the way that equipment is justified, and therefore paid for and provided.
Function itself, however, is important for many different reasons and can be defined in many different ways from child to child.
Gabriel Romero is the VP of Sales & Marketing for Stealth Products, a manufacturer and distributor known for its pediatric technology.
“I like to look at everything now as a spider web,” Romero said. “I think function, we could say, is the center of the spider web, and all these other things are tied to it. Because you really can’t have anything — fun, family, friends, fitness, and future — without function.”
Angie Kiger, M.Ed., CTRS, ATP/SMS, Portfolio Marketing Manager, Permobil Americas, was asked how manufacturers balance the need for safe and sound positioning, for example, with the fact that kids also need to move so they can explore, socialize, and learn.
“It’s not even just about moving,” she said. “Think about when you’ve got little ones that are just working on seating balance. The reason they’re just working on seating is because it builds from there.
“I remember when I transitioned to working for a manufacturer over 10 years ago, I found myself saying, ‘This [positioning] looks pretty, this looks nice, but how is it improving their function?’ Back at the hospital in the Two East playroom of the HSC Pediatric Center in Washington, D.C., we would rig up some crazy things just to get our kiddos that had SMA [spinal muscular atrophy] type 1 to be able to participate in the same arts and crafts activity that the kids next to them were doing. Because at that point, we knew activity participation was vital for overall development.”
Nicole LaBerge, PT, ATP, is Portfolio Marketing Manager, Permobil Americas. “In all of the years that I practiced, there were those out there that still wanted [the system] to look pretty, and they wanted it to have the 90/90 [seating angles], and they were going to strap [the children] down,” she said. “Their pressure management might look great, and their positioning might look great, but then you just essentially took away all of the child’s abilities to function.
“We all move regularly, so you are looking at the balance of ‘How do I keep them safe? How do I protect their skin? How do I potentially prevent them from having a posture down the road that gets worse or causes pain?’”
While the seating team is of course motivated to support and improve the child’s function, motivating the child is crucial to any assistive technology’s success. “If we don’t motivate them and we don’t create situations that motivate them to want to continue to move — some of the postures and positions that PTs have to put them in, it’s painful,” Kiger said. “They’re not going to want to go back and do that again, because they’ve developed a negative association with the activity.
“As manufacturers, we have to design our products for kiddos. We need to make it so it’s practical for function every day for the families, because if the families can’t implement the equipment, that’s going to be a problem, and likely the equipment will not be used.”
So CRT must do more than provide function: It also must appeal to the child it’s designed to support.
“You need buy-in from the child,” Kiger explained, “so that they look at their gait trainer, seating system, power wheelchair, manual wheelchair, what have you, and think, ‘I’m excited Mom and Dad are putting me in that. I’m okay with it.’ As opposed to the kids who see their equipment and freak out because it feels terrible. I’ve seen this in my career, and I’m sure Nicole has, too.”
“Like Angie said, it still needs to be something that they look forward to using,” LaBerge agreed. “And if they are not comfortable, they won’t use it. As a parent, I know that if my child doesn’t want to use something, they often win that battle.
“Looking at the actual seating and positioning, that’s your basis to any setup. If you don’t allow them to move and explore and to be part of their environment, they’re not going to want to use it. And then we’re actually just doing more harm.
“So it’s trying to get out of sometimes our very clinical heads, and saying it has to be this way just to prevent pressure. Sometimes we have to do a little bit of compromising and say, you know what? We’re going to allow for this because that’s going to keep them engaged. And that’s going to keep them in their school, and that’s going to keep them in their home with their families, doing the things that they need to. So I would say it’s a balance, not a compromise.”
Romero said he often looks to the family to find a child’s motivation. “I’ve been in situations where Mom and Dad thought that their child was going to be pushed around in a manual chair their entire life,” he said. “Then you find function, you find something that encourages them to be functional, which could be a sibling.
“Honestly, I’ve seen the siblings playing, and I’ve seen the child looking at them and smiling. And I think, ‘Oh, there’s the motivation. There’s the motivation to move. Let me get him in a power chair and just give him [the ability to] turn, and let him follow his brother around the room in a turn.”
That sometimes comes as a surprise to the parents, he added. “Now a parent sees the cognitive ability of understanding go and stop. The child is not just hearing his brother behind him and wondering what he’s doing, but is actually turning around in place to see. You’re always looking for something to inspire function.
“If it’s family members, if it’s something that’s fun for them, if it’s something that’s creative, it’s however we can get them moving or achieving these things.”
Romero assesses kids for stamina as well as function — for example, not just that a child can reach and operate a power chair switch, but that the child can do so consistently.
“It doesn’t matter if somebody can do [the task] for a few times if they can’t do it for the amount of time that they’re going to need it to achieve success in any of these categories,” he said. “It’s understanding that. It’s understanding the ability [to perform] the function, the stamina in the function. You see somebody in the morning, and they have great function because they’ve rested all night. Then at 3 p.m., they might be barely holding on, and straps are holding them up because they’re fatigued.”
Motivating kids and ensuring they’re able to stay engaged is crucial, Kiger said, because children who are unable to interact with others and participate in activities can quickly disengage.
She recalled children who resorted to even more worrisome behaviors: “I’m thinking of two kids in particular and what they did if they got bored in their room. They had muscular dystrophy, very rare syndromes. Those kids were famous for pulling their vents off to get attention. They would unhook their vents because that’s the only way they could get someone to interact with them. A 5-year-old child who’s stuck in a hospital bed on a vent and can’t move is trying to do what makes people run and move: ‘I take my vent off, and alarms go off, of course, and the nurse is going to come.’ It’s a very dangerous game to play.
“I think that’s where I truly became passionate about getting kids moving and being able to engage at a very young age. Because if not, we’d be in the playroom, and the kids would just be staring off because they didn’t realize they were in a new environment. They didn’t realize, ‘Oh wait, I can actually move and play.’”
Kiger also recommended doing what’s necessary to achieve success as quickly as possible once mobility is introduced.
“I tell people, especially when I’m helping people learn and train on power mobility: Choose the path of least resistance to get started,” she said. “I do not care if they’re not going in the right direction. Number one, keep them safe. But I don’t care if they don’t look pretty in that seating system. I don’t care because I’ve got to get the buy-in from them: ‘I hit this button. Oh my gosh, I’m moving. And I’m going to get whatever toy I want.’ And you build from there.”
Fun: Celebrating the Joy of Mobility
While focusing on function — on positioning and support, not to mention justification for funding — it can be easy to overlook what the process and the equipment look like from a child’s or family’s perspective.
With that in mind, Stealth Products partnered with Trident Research to launch the Loonz video game in 2017. The game, starring Tiki the hot-balloon-riding elephant, calls on players to collect gold coins and ascend through various levels… all while assessing a child’s ability to understand and operate power chair controls.
Loonz can be played on a tablet, which means the child doesn’t need to actually sit in a power chair while undergoing the assessment, a fact that can be reassuring to kids and parents who initially find power wheelchairs a little intimidating.
“Every child is a child, disability or no disability,” Romero said, in explaining the inspiration for creating Loonz. “I have three children that are all grown now. I remember that as a parent, if I was having trouble with them, I had to be creative. Sometimes that was making things fun. I had to make education fun, I had to make disciplinary stuff fun so they would understand it, I had to reward them with something fun.
“Fun is critical in life, just in general. When we look at our industry, we can’t lose that. We can’t make stuff black and white. It has to have color. It has to have sound. It has to have excitement.” He acknowledges the basic and fundamental needs that CRT must answer, but also looks for opportunities to be more creative.
“Because again,” he said, “you have to do your basic things, right? The vanilla. But when you get into that sherbet type of stuff… ooh, I love some sherbet.”
From Permobil, an example of fun personified is the Explorer Mini, the company’s power mobility device for children with mobility impairments who are 12 to 36 months old. The compact, brightly colored Explorer Mini is an early-intervention tool that looks right at home in a playroom or at a park.
“The first time I saw the Explorer Mini, I thought, ‘This is amazing,’” LaBerge remembered. “The amount of detail, the amount of intention that went into the design… this looks like a toy that my daughter would love. This is something that my daughter would want to use if she couldn’t walk.
“As a parent bringing your child into an environment — whether it be the park or the school — you must consider how you are going to transport any device. And the transition to a power chair, even a pediatric-sized power chair, can be intimidating. It’s big and it’s scary to many people. Whereas with the Explorer Mini, you show them that now their child has the ability to just get into something that looks cool, that’s colorful, that’s simple. They can be safe in it and start exploring. The family or caregivers can transport it easily.”
“Fun is enormously important for the families also,” Kiger agreed. “The Explorer Mini doesn’t look like a medical device. A lot of times, as you’re talking about an adaptive stroller, the family’s very first adaptive stroller, instantly parents are thinking, ‘How am I going to go to the park? Aren’t people going to stare at me? How am I going to go to my playgroups? People are going to think my kid’s dumb.’ And they’re not dumb, it’s just that they can’t walk.
“So from the manufacturing standpoint, we have to design some element of fun into everything. But the flip side of that is that you can’t say the word fun on record when it comes to funding.”
“We know they may need a mobility device for their whole life,” LaBerge said. “But the step from limited mobility is now much easier because they’ve been introduced to the Explorer Mini, and their kid loves it, and then [with the next device] it’s like, ‘Oh, now I just have a bigger version of this. I still get to go out and explore. I still get to be part of my school and my park and all my friends.”
Friends: Mobility’s Impact on Socialization
Making friends and finding your “people” is tough enough. Add assistive technology to that equation, and other kids could be intimidated or fearful of what they don’t understand. First impressions can be lasting.
“I was at a spinal cord facility, and I was fortunate enough to be there while they were having a fair with manufacturers,” Romero said. “They had some of their patients in their wheelchairs or even in beds that were going around to meet manufacturers.
“I had an opportunity to meet this beautiful young lady, a teenager. She had two of her friends with her, and her mom. She was in a wheelchair, and she had a big headrest behind her. She had long, beautiful hair.”
Romero noticed that the girl kept looking toward a more minimal headrest in the display “that was just a suboccipital area in the back. You wouldn’t be able to see it, and she would be able to put her hair over it in the back.”
Romero showed her the headrest, which still offered the support she needed when she tilted, but would be much less obtrusive. “I said, ‘Look, this headrest will hide itself. It’s just going to give you that support that you need at your occiput.’ I put it behind her. Mom and her friends went crazy. Her friends got mirrors out, Mom started getting her hair and pulling it over [the headrest]. Of course, the young lady is asking her friends to move the mirror so she could see.”
Was this a critical component change, from a purely functional perspective? No, but Romero said, “It was one of those moments where nothing else mattered to me. Because it was the most critical thing that she needed. Her friends were giving her encouragement, saying how good it looked: ‘Oh my gosh, look at your hair.’ Her hair was covering the headrest. She’s so happy. The clinician was happy too, which was great. I knew it was going to still meet what she needed, based off of what I was seeing that she was currently using. I saw the clinician go from, ‘Okay, I’ve got to be the [seating] professional here’ to ‘I’ve got to also be happy that she’s feeling good.’”
“As children get older, they want to be the cool kid, they want to be included,” LaBerge said. “Many of those kids want to stand for the national anthem, they want to be able to get to their class and participate with their seat elevator to take part at the science tables. They want to be able to give their speech in a standing position. They want to be just like their friends.
“And when their friends are seeing them doing that, that’s the exciting part because they’re part of the group and they’re doing the same things. They might do it a little bit differently, but they’re really included. As I look at it as a clinician or as we do as an industry, it really comes back to inclusion.”
Fitness: Understanding the Goals, Then Making Appropriate Choices
Fitness is possibly the most controversial — or perhaps the most misunderstood — of the F-words, particularly concerning children who self propel. It’s common for parents of those kids to resist power-assist units or resist having their kids transition to power mobility, because of the mistaken impression that self propulsion is good exercise.
“Back when I was in the clinic, I would say propelling yourself is not exercise,” LaBerge said. “It’s just like me walking. I am walking to do my activities, but that is not exercise.
“There are awesome programs that you can either create or you can participate in that are exercise for those who are in a seated or a supported standing position.”
The challenge is educating both wheelchair riders and their parents. “I would often hear from the parent(s) or caregivers, that the child is going to a college campus and they’ve got to push themselves in their mobility device. That’s where I would introduce, if they had an ultralightweight manual chair, the idea of a power-assist device. We can help them function and get to where they need to be while conserving their energy so that they can actually do their activities of daily living.
“And then we’re going to talk about a separate exercise program or something that is fitness based so they can still have the health benefits of exercise.”
Childhood isn’t too early, LaBerge added, to start educating about and guarding against overuse injuries.
“We do have research that [says] if they started using a mobility device as a child, their body does adapt better to being able to propel or to essentially use their shoulders like their legs,” she said. “What happens, though, is that when you have been ambulating and then you have an injury that now requires you to use a mobility device, your shoulders are going to be at high risk for injury.
“We see that cycle. You get those repetitive-use injuries. That’s not how your shoulders are designed. That’s not what they adapted to do.”
The message LaBerge gives to families: “I get it, I want your child or your loved one to be healthy, and that is absolutely the goal. But it’s not functional, and their mobility should not be considered their fitness. It’s exploring power assist, the transition to power in general, and then really getting them a separate fitness program.”
Future: Looking Forward for Life
The first five F-Words truly are the foundation for this all-important sixth one: setting children and families on the most successful paths possible to create lives that are as active, independent, and fulfilling as possible.
“Especially with seating, you’re really planting seeds for the future,” Kiger said. “There are folks I know that have had disabilities, whether it’s spina bifida or cerebral palsy congenital or acquired, from a very young age that know more about their own skin health than people who were injured when they were 55 or when they were 25. And the reason is because we teach families to talk about the future. We tell them, ‘If you want kids to be able to maintain good skin health, you have to start doing this.’ So we’re creating products that kiddos can grow into and learn more independence.”
LaBerge agreed that the challenge and long-term goal of CRT is to continue to anticipate and meet children’s needs as they move through life — and to be able to adapt and offer up new suggestions when environments, clinical presentations, and activities evolve.
“We talk about customization for our manual chairs, but it’s the same with our power chairs,” she noted. “We look at alternative drives options as things may change. We have something to help them find their driving and mobility solutions.”
“As a manufacturer, we’re always thinking,” Romero said. “For me, the future is everything we’re seeing around us now. For us now, it’s tying into Google, tying into Apple products more effectively, tying into home automation, tying into our environments, tying into simplifying things. We don’t have to make things so complicated when it comes to how things function and how people understand them.”
Romero envisions a future in which CRT seems more familiar to families because seating and wheeled mobility more closely resembles other types of everyday technology. “For me, it’s really making that universal product.
“Before, a power wheelchair would come in and it was like an exchange student from another country. No, no, no. We want to make products that have similarities to other products that are in the home and that families are familiar with. Products that they get. And they’ll say, ‘Oh, this is exciting. You’re going to be able to access this’ or ‘You’re going to be able to do this? Oh, wow! This is new!”
“When it comes to driver controls, to me one of the most important things is how do we make the system the hub of the home? I don’t care how good we think we are, or that somebody’s doing this or that with Alexa. We’re still not where we need to be. That to me means finding the right partners, which we’re close to doing. I’m really excited for what we’re going to be seeing here in the next couple of years.”
Editor’s Note: This story appeared in the spring 2023 Mobility Management pediatric eBook, our new digital publication. Join our free subscription list by subscribing to our eMobility newsletter.