Kids Happen

Pediatric Complex RehabThe motors in the child’s power wheelchair were burned out, says Amy Morgan, PT, ATP, pediatric & standing specialist at Permobil.

Really burned out. They were smoking.

Of course, there was a backstory. The young owner of this wheelchair takes the bus to school. During the drive, he sits in his wheelchair, which is secured inside the bus.

And while the bus driver was driving, so too was the little boy. Unbeknownst to grown-ups, the boy turned his chair on and was trying to drive it while it was locked down to the school bus floor.

“The chair wasn’t moving because it was tied down, but the motors were running, running, running, trying to move that chair,” Morgan says. “So it burned up the motors.”

This true story is a perfect example of the many challenges facing clinicians and providers who are tasked with building pediatric seating& mobility systems to last.

Common Goals, Common Challenges

Parents, payors, clinicians and providers all want kids’ seating systems and wheelchairs to last. Payors require systems that grow as kids do, so new systems don’t have to be constantly purchased. Parents want durable systems that stand up to everything that active kids and lifestyles dish out.

A system that needs repeated repairs, says Jay Doherty, OTR, ATP, clinical education manager at Quantum Rehab, interrupts a whole family’s schedule: “There’s a lot of down time. They’re missing school; Mom and Dad might be missing work. So a lot of people are impacted. Plus the provider is constantly having to use a technician, possibly the ATP.”

So, all stakeholders have the same goal. But the clinicians and providers charged with making that happen face a broad range of challenges.

Ironically, the biggest challenge to durability may have less to do with the child client, and more to do with all the other grown-ups and kids in his life.

Says Christy Shimono, senior product manager for pediatrics, Sunrise Medical: “There are many people interacting with a child and potentially handling their equipment throughout the day, like parents, caregivers, teachers, bus drivers, siblings and various relatives. In some situations, these individuals may not be familiar with all the different types of products and how they operate.”

“A child probably has the largest team that a provider or a clinician will see,” Doherty says. “I’ve done evaluations, and you have Mom and Dad, sometimes the grandmother and grandfather — so there you have two separate (sets of) care providers. You might have, if the child is extremely medically compromised, a nurse who goes to school with the child and also helps Mom and Dad at home. You have your special ed team — the teacher, the PT or the OT, the case manager, your one-on-one aide… the list just goes on and on. Plus you’ve got other kids who say, ‘What does this thing here do?’ Often when you watch kids play, another kid will hop on the back of the chair and go for a ride… these are all play activities that kids do, and they certainly impact the durability of the equipment.”

Curious kids and well-meaning adults may unknowingly impact the durability of systems the clinician and provider worked very hard to build.

“Everyone has their own idea of how the chair should look and act and function,” Morgan says, “and you have all of these external people who are saying, ‘That headrest doesn’t look straight, so I’m going to make it straight.’ Well, that headrest wasn’t ‘straight’ for a reason.

“It’s very difficult to communicate with all of the hands that are going to be affecting and touching this child and this equipment. Not only are the families changing stuff, but also the teachers and the aides and the bus drivers. There’s always somebody adjusting something. That not only impacts the design and the functionality and the way we set up the chair initially for a very therapeutic reason — but also, it compromises the durability, because the more you loosen bolts and tighten bolts and take them off and put them back together, the more that’s going to compromise the quality and the durability of the connections a lot of times.”

Morgan adds it’s nearly impossible to educate everyone who might come into contact with the child on any given day. Even when messages about such things as headrest positioning are passed along, Morgan compares the process to a game of Telephone, where one person whispers a sentence to a friend, who whispers it to the next person, and so on. “The message gets passed along,” Morgan says, “but it’s usually distorted by the time it reaches the outlying kinds of folks that aren’t spending a lot of time with that child.”

Surviving a Rough & Tumble World

The transportation aide who spontaneously straightens a headrest, and the little brother who climbs onto his sister’s power chair via the footplate don’t mean any harm. Neither do the power chair owners themselves. But — it happens.

“Little kids aren’t quite so active,” says Mike Nordquist, director of marketing & product development, Freedom Designs. “They might not be on the school bus yet, they might not be dealing with people slamming their equipment around. Mom and Dad are taking pretty good care of their equipment, because it’s the first time they’ve got it, and they realize they’re spending $6,000 or $7,000 on a wheelchair and seating system, or that’s what’s being spent on it.

“But when these kids start to grow and they’re in the 4th, 5th, 6th grade and up, that’s when things start to get abused. It’s the nature of the beast. They’re busier kids, they’re a little more active, they’ve got people pushing them all over, they’re on and off the school bus, and there are more places to go and more things to do and more wear and tear on the equipment.”

Doherty chalks up some seating & mobility damage to inexperience.

“Often, kids and teenagers are rougher on their equipment,” he says. “Often, adults have been there and done that, so they understand the abilities of the seating system and the mobility base. But kids don’t have that experience yet, so they’re going to try those more impactful activities that may potentially do some damage to their seating system. They don’t have the experience of ‘I don’t want to go over that, because my chair might break,’ where adults might have that experience and be a little more cautious. Not all adults, but certainly a good portion of them are more cautious because they’ve experienced breaking their chair when doing a certain activity.”

Morgan agrees that a child’s lack of experience — and a different set of priorities than Mom and Dad’s — can lead to stress on equipment.

“If it’s raining, a kid doesn’t mind being out in the rain and playing in rain, while adults would take cover and say, ‘Let’s get out of this rain,’” Morgan points out. “It’s part of being a child, but if you’re talking about a power mobility device, that can be a very bad thing, to be in heavy rain for a lot of time.”

Rather than generalizing about kids’ actions, Shimono says it’s more about environment and individual personalities than it is about age.

“I have seen a child’s chair that is in a household with several siblings, and it is pristine after two years,” she says. “And then I have seen an adult that lives alone, and their chair looks as if it had been kept outdoors in the dirt and weather for five years, and it is only six months old. I don’t believe one (age) is ‘rougher’ than the other. This is all relative, just as any person and their beliefs and personal hygiene.

“However, we know children that are in a school setting, like any child, may be out playing with other children, and this presents more opportunities for a child or their friends to be ‘rough’ on their chair. Just like any piece of equipment, maintenance, cleaning and care of the device is important and will certainly add to the overall life of the product.”

Tone & Other Clinical Culprits

Clinical conditions can also cause damage to seating & mobility components, particularly over longer periods of time.

Sharon Pratt, PT, director of education for Sunrise Medical, says, “In my experience, high tone seems to be the greatest enemy to the seating & mobility system. When a child exhibits high/increased extensor tone, for example, the headrest, backrest and foot supports truly take a serious beating! The higher the tone or the more frequently the tone is triggered, the more the system has to withstand.”

Morgan agreed high tone “is very much a big culprit. It’s not just tone, but it’s spasticity, abnormal reflexes and the unexpected force. If someone just has a resting strong muscle tone that’s constant, you can accommodate that. That’s not the problem. The problem comes from these abnormal spikes in the forces, so you have dystonia and spasticity and these abnormal forces that are not predictable, that are not consistent.”

Footplates, she adds, “for any chair, adult or pediatric, always seem to get a lot of wear and tear because either we’re using them to help open doors, or higher tone puts extra force on the footplates, and they get out of adjustment or they break.”

Transfers can also stress footplates, Morgan notes: “A lot of times with kids, especially if they’re doing stand-pivot or they’re climbing at all, they will climb onto the footplate to get into the chair. They use their footplates sort of like a stepstool. That’s going to create some extra stress at the footplate.”

Doherty says parts of the chair that are designed to move can also be susceptible to extra wear due to clinical conditions.

“Take the joystick, for instance,” he says. “You have a child who has athetoid movements or somebody who possibly has Huntington’s with choreic movements — they’re certainly going to put more force on that part of the chair, so they may do more damage to that joystick than the typical consumer who’s driving it because of that additional, excessive movement or tone.”

The results can be frustrating for everyone involved — payors who have to buy replacement parts, providers and clinicians who are tasked with finding a better solution, and families who are brought to a standstill when wheelchairs are out of service.

Anticipating & Answering

While not all durability issues can be fully anticipated — e.g., those burned-out motors in the tied-down wheelchair — there is still plenty of troubleshooting that clinicians and providers can do when working with active kids.

And some of the solutions are quite straightforward.

Asked what members of the seating & mobility team can do to make pediatric systems more durable, Shimono says, “When talking to parents, clinicians and suppliers can suggest that parents get their child involved whenever possible. Teach them to care for their technology. I have told parents to make wheelchair cleaning or maintenance one of the child’s weekly chores, much like making their bed or putting their dirty clothes in the hamper.

“Like any chore, it has to be at the level the child can complete. But something as simple as wiping the chair down with a damp cloth gives the child responsibility for their equipment. Suppliers and clinicians should routinely tell families or individuals that dirt is the biggest infl uence on durability. They should instruct everyone to maintain their product weekly and recognize if something changes or is loose. And, it is critical to instruct the individual and caregivers to read the owner’s manual.”

When recommending and building a system that can stand up to the rigors of childhood, Pratt says, “Home assessment and meeting the primary caregivers is critical. One needs to acknowledge all of the environments where the equipment will be used when making decisions for the specifications of the system. Who will be lifting the system? Are there pets and siblings in the home? What is the home accessibility? What kind of vehicle will it be transported in? Will the school bus be involved? A lot will be determined by learning as much as possible about the family, their lifestyle and daily routines. I like to understand ‘a typical day in the life of this child and their caregiving team’ because this will truly help everyone understand the demands that will be placed upon the equipment being prescribed.”

When it comes to choosing hardware and individual components, Morgan points out, “There are reinforcements; we make reinforced footplates, or sometimes it’s a custom modification. If you know that kid has broken footplates in the past, you can ask for a custom, very solid piece of material that will be more durable.”

She also suggests examining the child’s functional needs and considering, for example, whether a particular child’s system needs adjustability built into it.

“If you can avoid some of the adjustability — if you can avoid angle adjustability, if they don’t need that feature — then the less adjustable the component, the more durable it’s going to be because it’s more of a solid system versus having all of these joints and flexibility,” Morgan says. “Which is where it becomes difficult with kids, because you want growth, you want change, and you can’t get a completely rigid frame or system because you need to have that growth. So you have to have some kind of adjustability, but don’t just get the adjustable system because that’s what you always get.

“I would think: ‘Is there a way to get my therapeutic clinical benefit and good alignment without having this piece be adjustable? Can I get that to be a solid piece instead of an adjustable piece?’ Sometimes you can, and sometimes you can’t.”

Speaking of growth: Yes, funding sources insist on a child’s system being “growable.” But Morgan suggests providers and clinicians carefully consider, on a case-by-case basis, how much growability is really necessary, and what the trade-offs will be if an unnecessary amount of growth is built into the system.

“When you add growth, you add hardware,” she points out, “which adds weight, so especially when you’re talking about manual mobility, that’s going to be a give and take. You’ve got to weigh the pros and cons. Only do what’s absolutely necessary.

“When you’re adding components, think: Do they really need this, or is it just something like ‘I always get laterals on a chair, so that’s what I’m going to get’? We’re always asking for laterals and back supports and that medial pommel and things like that, and in actuality, the kid may not need half of that.

“So make sure that number one, what you’re asking for is essential, and second, really focus on that function of the chair and how it is going to integrate into different environments and different areas for the kid.”

Morgan says she understands the need for growth in a system: “Yes, we want the chair to have sufficient growth to last for five years, which is your typical timeframe that you want a chair to last. But we don’t need to have it last a lifetime. We have these systems now that can potentially grow into a small adult size, which is good and bad. You have a product that offers this huge array of growth, which you’re probably not going to access half of. Are you compromising the product? Would it have been better for that kid to get something smaller with a little less growth? Still with sufficient growth, but a little less, so the chair is more functional for them?”

Getting the Payor to Buy In

Funding sources want chairs to grow, but they also want chairs to be durable — so repeated repairs to the same system are sure to raise eyebrows with payors.

Doherty suggests bringing the seating & mobility team back together for a huddle.

“What often happens is a part might break; let’s say a footrest,” he says. “And the provider replaces it. If it breaks again, what will usually happen is the team will reconvene, and they will start thinking about ‘Why is it breaking, why is this movement occurring, and is there a way to either allow the movement to occur without breaking the system, or is there a way to make the piece more solid, whether it be to absorb the movement or to hold up to the movement?’ It’s pretty much a problem-solving process that they’re going to have to go through.”

Then comes the issue of convincing a funding source to agree to a solution that the clinician and provider hope will be more permanent and proactive.

“Because they have a repair history,” Doherty says, “they can usually go to a funding source and say yes, we understand that this is more expensive, but this is going to hold up better than the current setup, and we believe ultimately, there should be some cost savings because we’re not repairing that piece of equipment constantly.”

And of course, providers and clinicians should be prepared to document, document, document.

“The more documentation you have, the better off you’re going to be, the stronger case you’re going to have from a funding perspective,” Morgan says, agreeing that photos could be helpful ways of illustrating your case. “Funding sources may require that you try the ‘normal’ version first and show that it’s failed. You can always proactively seek out the funding source and say, ‘I anticipate this is going to be a problem. I would like to get the reinforced product,’ but if they don’t fund it, you can document it and prove your case after the fact.”

Learning to Roll with It

Of course, one of the challenges — and some would say, one of the joys — of working with kids is never knowing what they, their siblings or classmates will try next.

“We don’t condone climbing all over the chair,” Doherty smiles, “but the reality is, that’s what kids do.

“Part of development is peer interaction. A significant portion of our social skills come from that peer interaction, so we want children who have a disability to be accepted by their peers and be involved with their peers and all those things that happen at recess, all those things that happen in class, all those things that happen in the neighborhood.”

Morgan suggests there are all kinds of high-tech and low-tech ways to protect seating & mobility equipment, whether it’s choosing reinforced components with fewer moving parts… or Mom putting plastic cling-wrap around the joystick and charging port if a kid will briefl y be out in the rain. Yes, Morgan suggests educating parents about how different environments can impact a child’s wheelchair and what parts, such as electronics, are particularly vulnerable.

But at the end of the day, kids will be kids…and one of them might try to drive his immobile, tied-down chair while the bus is moving.

“It’s almost impossible to predict the kinds of things that kids might do because kids are so very unpredictable,” Morgan says. “It doesn’t mean the chair’s not right for the kid. It’s just him being a kid, and we’re going to learn from this for the next time, and we’re going to put a circuit-breaker on when he’s on the bus so he can’t turn the chair on and move the motors.

“Expect the unexpected,” Morgan says, “and go with it.”

This article originally appeared in the November 2011 issue of Mobility Management.

In Support of Upper-Extremity Positioning