Children at Play
The challenges and opportunities providers and clinicians face in helping young mobility patients live life to the fullest.
- By Lunzeta Brackens
- Mar 01, 2009
There are so many joys in life that children in wheelchairs will never realize, such as kicking a ball, running a race or using their legs to propel a swing. However, there are many other childhood activities that are right at their fingertips, yet still inaccessible due not a child’s condition, but rather due to the limitations of the mobility device.
A pediatric mobility device should be functional, comfortable and aesthetically pleasing, and it should be something that a child is proud to call his own. Above all, a child’s mobility device should give him or her the versatility to participate in many of the same activities that non-wheelchair using friends enjoy.
Funding limitations and selecting the wrong chair are the two culprits that can limit a child’s mobility. Because of declining funding, it’s becoming increasingly harder to make products available, Abraham Goldstein, president of the Wenzelite Re/hab division of Drive Medical says.
Not only does funding impact the availability of mobility products, but it also directly affects the service associated with those products. The service level required from the rehabilitation supplier to successfully provide and support a pediatric mobility system is being compromised by the reduction in reimbursement provided, says Michael Babinec, OTR/L, ABDA, ATP, product manager of power wheelchair electronics/seating and positioning at Invacare Corp.
It’s clear that the right pediatric mobility choice should not be based on price, but rather clinical and functional need. However, Christy Shimono, senior product manager of Sunrise Medical Inc., believes the volatility of funding at the Medicaid level sometimes prevents this from happening. It is something that Heather Pinkerton, PT, PCS, ATP, and owner of Rehab Specialties Inc. in Dallas, notices, as well. Pinkerton, who worked as a pediatric PT for six years, often worries about coordinating the best equipment for the needs of the child, the caregiver, the family, school therapists, clinic therapists, physicians, transportation and home environment all within the constraints of the funding source.
Sadly enough, funding isn’t always the biggest roadblock in getting children the best mobility solution for their needs. For instance, sometimes parents and medical professionals are leery of giving children power mobility because they think that they will lose function or the desire to walk, which is not the case, Pinkerton says.
“They don’t really view it as the independent and the liberating device that it is, and the perception that ‘oh now, I’m going to have to get a van with a lift and all these things that are very expensive and are not covered by funding sources,’” says Amy Meyer, PT, ATP, pediatric and standing specialist with Permobil Inc.
All of these are true statements, Meyer explains, but there are low-cost alternatives. For instance, the folding type of manual ramp isn’t as expensive as the electronic system, and public transportation can be utilized, as well, she says.
There is no doubt that family face various challenges and considerations when it comes to power mobility for their children, says Cody Verrett, ATP, national sales director at Quantum Rehab. But creating a mobility system that has some type of convenience or transportability can make things better. Some studies even suggest that when children have access to independent mobility there other mobility skills actually improve, Meyers says. Children are getting into power mobility at a younger age and clinicians are recognizing the need to start early.
“Early intervention has always been something that’s been in the therapeutic world … because we realize that the earlier we get in and start intervening the more improvement that we see,” Meyers says, recalling one little girl’s story. The girl was a manual wheelchair user who pushed herself all day at school and when she’d come home, she’d have dinner and then crash from the day’s exertion. Meyer says that isn’t typical behavior and an indication that the mobility option the little girl used wasn’t the best for her. In this instance, a power chair would be better.
The decision on whether or not a child needs a manual or power chair is made between the clinician and the family while considering a number of factors such as long term diagnosis, functional and clinical goals, environments, cognition and transportability, Sunrise Medical’s Shimono says.
“Usually, the most important thing to the child is how independent the equipment makes them,” Pinkerton says. “The parents are usually the ones who have preconceived notions on how ‘disabling’ a chair looks.”
Children that have sufficient upper body strength to propel a manual wheelchair is certainly one situation, but there are many diagnoses that occur in children, such as muscular dystrophy or spinal muscular atrophy, where propelling a manual wheelchair is ultimately going to be too difficult, and that’s where power mobility could serve as a tremendous benefit, Verrett says.
“Fewer children than I would hope are given the opportunity at independence through powered mobility,” Babinec says. “Those challenged with the responsibility of recommending an appropriate system are often placed into a ‘Mission Impossible’ scenario.”
Clinicians and providers must complete an assessment, discuss product, trial and script the recommended system, meet the necessary training needs of the child, and then hope the changes the child encounters over roughly the next five years can be accommodated through the prescribed system, he adds.
One of the big arguments for providing early power mobility and independence is limiting learned helplessness. Meyer says the ultimate goal clearly is for children to learn independence and not helplessness, and that holds true for repositioning themselves and controlling their posture through capabilities such as power tilt. And for kids that have sensation, they know when body parts start to get uncomfortable, and they can then independently start to tilt themselves back, instead of asking someone to help them.
The Complete Picture
It is important for providers and clinicians to work together to dispel many of the myths about power and manual chairs. Specifically, just because children have the strength to manually push themselves, it doesn’t necessarily mean that this is the best solution for them at the end of the day. A mobility device should not be confused with exercise, Meyer says.
Before prescribing a wheelchair, clinicians should try to focus on the big picture and not just a clinic snapshot. Meyer said she talked with a young man with cerebral palsy (spastic diplegia); he was zooming through the clinic on his manual chair and she asked him why he thought he needed a power chair. She says he explained that he’s fine at the beginning of the day but after lunch he needs a lot of help from friends. This is why it’s important to talk to parents and children, and equally important to not only assess a child in the clinic where there is smooth level terrain, but also outside.
Other factors considered when prescribing pediatric mobility solutions are the access methods, whether the child will manually propel themselves, are they going to be able to use a manual joystick, or do they need some type of specialty input device?
“Sometimes, we try to go the joystick route because that’s what we know and what we’re most comfortable with, but it’s really not the most sufficient means,” Meyer says. “Sometimes power mobility with the wrong access device can be inefficient for children, as well.”
Not only should children’s wheelchairs be functional, but it should also be pleasing to the eye. It is important to a child that the chair looks “cool,” and that other children will like it.
“We don’t focus on that when justifying the need for a chair, but it’s very important whether or not someone is comfortable in the chair and if they like the way the chair looks,” Meyer says. “I want kids that use our chairs to be proud to be seen in our chairs, so we do emphasize and value the look of the chairs.”
A pediatric chair should be fun and reflect a child’s personality, Verrett says, adding: “It should be reflective of their lifestyle and there should be options and choices that reflect their own personal likes and dislikes.”
Goldstein says Drive also tries to make the chairs appealing to children whether it’s through color, add-on labels or stickers. “We allow the children to enjoy the product to the best of their ability,” he says. “Our focus has been not so much on designing new products, but redesigning existing products and adding some features and benefits to them to make them even better.”
Other considerations for pediatric mobility devices include ensuring that the seat-to-floor height of seating systems lets children be on the same level as their peers, and whether or not they can get in and out of their chairs for circle time on the floor or get under low preschool tables.
One Size Never Fits All
When it comes to meeting the needs of a child versus an adult, of course, there are obvious thing such as seat width, seat depth, shorter extensions for the leg rests and better accommodations in the areas of accessories and interaction with the control device, Verrett says.
But in the grand scheme of things, both require assistive technology to meet their mobility requirements of daily living when disability interferes. But the considerations required when meeting the needs are often different, Babinec says.
Although children are small people, a child’s body is very different in terms of biomechanics than an adult. Children require a lot of different positioning and accessory devices that make their functional ability in a power chair more acceptable, Verrett says.
Pediatric mobility solutions should never be the same as adults because the anthropometrical data points are different, Shimono agreed. “Children’s sizes and structure are so different that the geometry of the chair would be negatively affected with respect to balance, center of gravity and propulsion.”
“Children need to interact with their peers on their level and when you give them tiny adult chairs you’re limiting that access,” Meyer adds. “A mobility device needs to be able to navigate effectively and efficiently on various types of terrain in order to allow the kids to interact with their peers.”
It’s important that the chairs not only give support, but allow for movement and play.
“This is where cutting edge technologies like dynamic seating become so powerful,” Shimono says. “For the first time, kids can move but be properly seated upon return. This new modality in seating is gaining acceptance and momentum amongst the clinical and dealer community because it has been shown to produce such profound results.”
Environmental needs should be considered when deciding upon a wheelchair for a child, such as where they’re going to be with the product, Verrett says. The universally accepted, product-defined guidelines that CMS instituted a few years ago could present a problem in certain situations. The new codes in the pediatric section list specific guidelines without taking into consideration the need for some families to have transportability. School bus transportation needs to be compliant with WC19 requirements for transportation, all of which are aspects that could potentially be a lot different than it would be for an adult.
“The most important thing a pediatric seating system should achieve is access to the environment around the chair and around the space of the seating system so that … there’s no limitation to what they can or can’t do,” Verrett says.
Meyer agrees that children need to be able to interact with peers and gain psychosocial development. If they experience learned helplessness, they’re not going to have the confidence to succeed.
While children’s chairs should not be tiny adult chairs, a good pediatric chair should leave room for growth. And this should be done without weakening the structure or creating an eye sore of brackets and hardware, Shimono says.
“With kids, they’re constantly growing; their bones are growing quickly but their muscles often have tone issues and are tight so when their bones grow and their muscles aren’t able to access the whole range of motion. So they tend to tighten up so you want to make sure that the seating system as well as the base is adaptable to the child as they change,” Meyer says.
Goldstein agrees that growth is a critical factor in pediatric equipment. Children should be prescribed equipment that will fit their needs and grow along with them while at the same time allowing for changes, he adds.
“It is not appropriate to order an adult chair and allow the child to grow into it,” Pinkerton says. “For an independent propeller, fit is essential to improve efficiency and joint protection.”
In pediatric mobility, the seating system and the mobility base should work together to provide not only mobility, but postural support, postural stability, arm and hand function, visual line-of-sight, for interaction with the environment and others, even positioning for feeding and swallowing skills, Babinec says. The correct seating system and wheelchair configuration can even influence or help manage muscle tone, and prevent or retard the development of postural asymmetries as the child grows and develops.
Finally, a chair should do what it says it will. Pediatric devices should be reliable from a performance standpoint,” Meyer says. “I think it’s really important with these kids that are already feeling different and isolated that we integrate them into their peers as much as possible and give them that confidence of being able to move and interact with their peers.”
This article originally appeared in the March 2009 issue of HME Business.