Early-Intervention Power: Who Can Participate?
Assistive technology professionals who introduce young children to independent power mobility often face multiple obstacles in their path. Yes, there is the usual equipment evaluation — gathering accurate measurements, factoring in growth, determining which seating, positioning and mobility products are the best fit. But in addition, there are others who need to approve of the idea: parents, for sure, but also funding sources.
Payors have historically been reluctant to support power wheelchairs for some of providers’ and clinicians’ youngest clients. Many funding source objections are based on issues of safety — Can a very young child be a safe driver? — or whether putting an infant into a power chair yields any benefits, particularly if the child doesn’t operate the chair very fluidly.
While safety is a valid and important concern, so is the child’s cognitive, social and emotional development, which leads clinicians to respond with their own question: Can we afford to wait to give a child the chance to become independently mobile?
The Argument for Early Intervention
Ask healthcare professionals at what age a child should be given the chance to operate his or her own power chair, and you’ll get a variety of answers, especially with those not intimately familiar with the seating & mobility niche. But ask parents at what age a baby starts to achieve some mobility, and they’ll note that rolling and crawling usually happen within the child’s first year, with walking — either independently or while hanging onto furniture — not far behind.
If those are developmental mobility milestones for typically developing children, should it be any different for children with special mobility needs?
“We can remind ourselves as well as the families of the children with whom we are working that between three and 13 months of age, infants undergo three periods of profound changes in perceptual, cognitive and socio-emotional behavior,” says Sharon Pratt, PT. “Findings from over two decades of research demonstrate that an infant’s newly acquired ability to move independently through space is a powerful facilitator of a number of developments that occur during these times of behavioral reorganization.”
Pratt points out “three significant times of mobility development”: When infants start to reach (typically between three and four months of age); to creep (typically, seven to nine months old); and to walk (typically at 12 to 13 months).
“Locomotor experience facilitates psychological development,” Pratt says. “With this in mind, children ideally should be allowed to meet recognized milestones, even if modified.”
Maggie Love, OTR, clinical education specialist at Permobil, says of this important time in a child’s life, “While the brain has shown neuroplasticity throughout the lifespan, it is less able to change after critical periods of development have passed.”
Love cites a study (Stiles, 2000) that contends that active experiences are crucial for brain development.
“It is during this time that the brain is developing motor and sensory neural pathways required for cognition and language development,” Love says. “Consequently, a moderate mobility impairment can cause impairments in language, vision and intellect.”
So, mobility is more than just an accomplishment for a growing child; it’s also the way that children learn.
“Mobility helps with other skill acquisition,” says Jay Doherty, OTR, ATP/SMS, regional manager for Quantum Rehab. “It also helps in prevention of learned helplessness, which is difficult to overcome once it has been established.”
Pre-Requisites for Power
Once the child’s healthcare team decides to assess for power mobility readiness, what cues should they be looking for regarding the child’s skills and abilities?
For instance: A comprehensive understanding of cause and effect — I push this button, and my chair moves! — has been considered by some clinicians to be the acid test when deciding whether a child can successfully and safely operate a power chair. But is that a fair requirement to demand of toddlers and infants?
While Doherty says understanding cause and effect is necessary for the child to understand that he is controlling his wheelchair, he says, “When we are talking about very young children, we have to be careful with the requirements and be sure that the requirements are age appropriate. A 2-year-old may have an understanding of driving a power chair, but still requires supervision, as with any toddler.”
Therefore, Doherty wants to “see the beginnings of understanding that they are moving the chair through space. Other skills such as safety while driving will develop over time.”
“As a therapist with much less experience with children many years ago,” Pratt says, “I used to think that children would need to at least be able to use switches or joysticks with toys or computer-type devices first. But I have since learned through experience as well as from reading others’ experiences and research that young children learn cause and effect and direction more easily in power mobility because it provides more sensory experience. In other words, allow the child to sit in a power wheelchair and develop their cause-and-effect skills!”
Love emphasizes that very young children may need time to fully understand and explore the cause-and-effect concept.
“A child who understands cause and eff ect may be more likely to have a better experience in learning power wheelchair mobility,” she explains. “That is, if a child can understand that when her hand touches the joystick, the chair moves, there is a greater likelihood that this would help a child generalize this to facilitate further success. It is important to note that finding that control site may take several sessions and various trials with diff erent equipment. Trialing of the equipment is vital to determining if someone might be a candidate for power mobility, as is continued training.”
Ever-evolving electronics technology can help young children with another power chair requirement: Having dependable and functional control over some part of the body that can be used to drive.
“We have to remember that any part of the body where we can mount a switch can be used as an access point to control a power chair,” Doherty says.
“There are lots of ways for young children to use power wheelchairs,” Pratt agrees. “Joysticks are common, but there are many switches and other special controls. Some children use their hands, and others may do very well using their head, feet or a combination of body parts.”
“I remember working with a little boy many years ago,” Doherty says. “He was 3 when I met him and he was very smart, but only had one consistent movement. I educated his mother and father that he could still drive a power chair with that one movement. They were surprised because they thought he had to be able to use his hand to control a power chair. Education was all that was needed.”
Regarding other factors that can shape a child’s power mobility experiences, Love says, “Problem-solving skills, understanding spatial relationships and cognitive developmental abilities influence a child’s potential for successful independent power mobility; however, these very skills can develop through the use of powered mobility.”
And Pratt says, “I personally do not believe that there are developmental or cognitive pre-requisites for young children and power mobility. I think it is way more important that we introduce the mobility to the child and their environment in a way that the child can immediately begin to manage it, because it is through the use of mobility/locomotion and discovery that development can progress.”
The Importance of Following Directions?
A common concern among parents — and sometimes among clinicians as well — is that infants and toddlers trying out power chairs don’t always obey directions such as “Slow down” or “Stop!” If a child doesn’t consistently listen to grown-ups’ commands, is that a deal-breaker?
“I believe the child has to be safe in the wheelchair with supervision,” Doherty says. “The basic ability to follow simple directions is important, but if more time is needed for them to develop this skill, I believe a longer trial period may be necessary.”
And Doherty says pausing to consider how able-bodied children behave can help parents and the mobility team keep a valuable sense of perspective.
“I think back to my own children and how many times I told them to stop or slow down, and how often they didn’t listen,” he says. “It was an opportunity to ultimately teach them a lesson. We have to keep in mind that children who have a disability that has prevented them from moving through space have not had the opportunity to ignore an adult, and I believe this is part of learning independence. So, the child will need to learn to listen, but we can only do this if the opportunity arises to teach them.”
“If a child is unable to follow basic directions such as ‘stop’ and ‘slow down,’ that should not disqualify them from having access to independent mobility,” Love agrees. “There are plenty of typically developing toddlers who do not consistently listen to adult directives, even if the adult uses the child’s first, middle and last name.”
Rather than just assuming the child isn’t yet ready for power mobility, Love suggests digging deeper.
“It is beneficial to determine the reason that the child is not following verbal directions: a behavioral issue, motor-planning issue, spasms or primitive reflexes, or perhaps an auditory-processing issue? Depending on the reasons, different interventions are warranted. Case studies have found that there are improvements in receptive language skills and overall development with access to powered mobility.”
And Pratt recommends against stifling a child who is just learning the joys and possibilities of being able to move on his own.
“Children learn best through play and exploring for themselves.,” she notes. “Too many verbal directions can be confusing, distracting and create fear. They are not like adults learning to drive a car, for example. At first, children need a large, open, safe space where they can learn to control direction and just ‘explore.’ A great example is chasing balloons in an open, safe environment. Sometimes power mobility toys can be easier for very young children to experience the concept of locomotion with power at first. Once children have learned to control direction and to stop in a safe environment, they are then most likely ready to progress to other places. It needs to be recognized when going through this experience that the young child needs to explore mobility first, not ‘driving.’”
Early Intervention for Eventual Ambulators
Traditionally, power chairs have been considered as mobility solutions for young children who are unlikely to ever functionally ambulate. But could power chairs also benefit children — such as those with Down syndrome — who probably will learn to walk, but will do so much later than typically developing children?
“Yes, absolutely yes,” Love says. “Introducing and assessing for powered mobility at an early age is worthwhile if you feel that the child will not be able to efficiently ambulate in all age-appropriate environments before the age of 4. They should be considered for power mobility.”
The reason? “Exploration of the environment is an important component in a child’s development,” she says. “Even if the child is expected to eventually ambulate with or without assistive devices, providing access to mobility to keep up with typically developing peers is vital to ensure that developmental milestones are reached. I have heard from some parents that they are concerned that providing power mobility will slow down their child’s desire to ambulate — however, the research says the opposite, that access to mobility may actually improve the child’s motivation to participate and use their trunks and hands to explore the environment.”
Of these children with mobility delays, “Mobility provides learning opportunities for developing skills,” Doherty says. “Providing a power chair as early as possible can assist with development of skills that may be further delayed if mobility opportunities are not provided early on.”
While payors may not always be enthusiastic about providing a power chair to a child expected to eventually learn to walk, Pratt agrees that doing so is important.
“Research has shown that motor skills do not decrease when children use power mobility,” she explains. “Some studies have shown better use of motor skills and increased motivation in therapy as a result of using power mobility. It is well documented that the early use of power mobility can help the young child’s development and learning.
“In my opinion we don’t always know what the potential is for the child down the road in terms of what skills they may or may not develop when they get an opportunity to use power mobility at an early age — but we do know that in the absence of locomotion/mobility/ability to move around in their environment, the child’s development is truly vulnerable in all areas: cognitive, social, emotional, visual-perceptual, intellectual and language. So yes, in my opinion it is worth providing power mobility access to these young children who otherwise cannot explore their world at an age-appropriate time.”
Driving with Supervision
The same goes for children capable of operating a power chair only under controlled circumstances — such as while in wide-open spaces or while being closely watched by a grown-up.
“I still believe that providing the chance to move through space is important for development, even if supervision is required,” Doherty says. “Providing mobility opportunities enhances development of perceptual and cognitive skills that will influence other parts of the child’s life.”
Asked if it’s worthwhile to provide a power chair to a child who perhaps will never be able to drive with complete independence, Love says, “I do believe in many cases the answer is yes, it is important to utilize a power chair therapeutically. Our visual systems don’t develop as well with passive movement as they do with active movement.
“Think of travelling to an unfamiliar location and a friend drives you. Would you be able to navigate your way back? It is the same concept for a child being passively pushed to a classroom: They will not develop the same navigational skills. Even for children that will always need supervision, there can be improvements in cognition, visual development and participation with access to mobility — in fact, this could be their only chance to explore their environment to develop those skills.”
Giving Every Opportunity to Every Young Child
Ultimately, the most beneficial rule of thumb may be to focus on the usual developmental milestones and time-tables rather than to concentrate only on a particular child’s challenges.
“It is important that we consider the ‘normal’ developmental milestones,” Pratt says. “In the usual sequence of events — from ‘rolling’ to ‘sitting’ to ‘crawling’ to ‘pulling to stand’ to ‘cruising’ to ‘walking’ — babies move through these developmental stages almost seamlessly. I believe we should never lose sight of the fact that all children, regardless of ability, should be allowed to meet recognized milestones, even if modified.”
“We need to prescribe power mobility more oft en and start earlier in the development,” Love says. “Educate the parents and caregivers. ‘We are just waiting till they are in school’ is not an appropriate excuse. We need to include very involved children as well as children who are using walkers/manual mobility devices inefficiently. The RESNA position paper on Application of Power Wheelchairs for Pediatric Users is available for free online and is a comprehensive peer-reviewed review of current research.”
Love adds that children being considered for power mobility shouldn’t have to demonstrate perfect skills to qualify, but rather should be given the opportunity to learn them.
“According to Medicaid, we are determining if the individual has the capacity for independent mobility,” she says. “Training is a vital component in prescribing power mobility in children, especially at younger ages. Studies suggest that daily practice with a trained caregiver is needed (Jones et al., 2003). An hour, once a week simply is not enough.
“The skills/abilities needed to trial use of a power mobility device do not need to be fully developed. Oftentimes, they are not. For example, just because a child may not consistently use a switch to operate a toy or computer program does not automatically determine that they do not have the capacity for learning cause and effect. The visual, tactile and vestibular inputs from driving a power chair are vastly different from an abstract computer game and may be more motivating for the child.”
Educating parents about these facts can help them to see a power chair as an “enabling” tool rather than a sign of their child’s disability, Pratt says. And when that change of mind and heart happens, the rewards can be overwhelming.
“There is no greater gift for a family than to see their child with special needs playing and exploring alongside their siblings or other young peers in a playground, regardless of the locomotion method,” she says. “This positive experience can make a world of difference with regard to how early in that’s child’s life a family will be open to the possibility of accepting power mobility.”
This article originally appeared in the January 2014 issue of Mobility Management.