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Breaking Through Boundaries

Many important factors must be considered when selecting the right mobility device for a child

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Vol. 24 • Issue 4 • Page 12

To pediatric therapists, each workday is often filled with challenges and rewards. The difficulties children with developmental disabilities face on a daily basis can certainly test a therapist's professional skills. But the elation those same kids feel when they reach a goal is enough to warm anybody's heart.

Mobility is one area of pediatric therapy that encapsulates both aspects. Megan Acquaro, PT, DPT, and Kathleen Kane, MS, OTR/L, know this firsthand. They comprise the two-person, PT/OT team at JAG Pediatric Therapy, which opened last fall in West Orange, NJ. The clinic is a subdivision of JAG Physical Therapy, founded by John Gallucci Jr., PT, DPT, MS, ATC, and including six New Jersey locations.

"We started seeing patients in November," said Acquaro, the clinical director. "Now we have a total of about 15 children, who come in on at least a weekly basis."

Patients present with conditions such as cerebral palsy, developmental coordination disorders, fine-motor delay, gross-motor delay and Marfan syndrome. They range in age from 4 months to 12 years old.

Acquaro has been a physical therapist for three years and previously worked at Children's Specialized Hospital in New Jersey. Additional diagnoses she treated there included spinal cord injuries, spina bifida, brain injury, infant prematurity and torticollis. So which pediatric conditions are most likely to create a need for mobility devices?

"Definitely spina bifida and cerebral palsy," Acquaro related. "Spina bifida seems to be the most prominent in terms of mobility itself being the primary goal for parents. Often because there isn't an additional cognitive component-it's just the physical mobility that needs to be addressed."

Mobility options vary depending on the age and status of the patient.

"A lot of times the goal is ambulation in any way. So, often they're starting off in a gait trainer with progression to a walker. Sometimes when they're very little, if they're not ready for gait training necessarily or the focus is more on treatment than mobility, I've used a mobile stander to help children get around the classroom and be able to interact a bit better with their peers."

Therapist Influence

When it comes to choosing the appropriate mobility device for a child, therapists can have great influence.

"I think many times the therapist plays a big role because she's seeing the client or patient every week, depending on the frequency of therapy," said Acquaro.

"So the PT or OT is the one who's trialing the device in weekly sessions to determine what would be most appropriate. Often physicians will write a prescription based on what the family wants or what they think is most fitting. Then it's up to the therapist to really implement those trials and determine with the family what will work best."

Like Acquaro, Kane helped launch JAG Pediatric Therapy. An occupational therapist for about two years, she previously practiced inpatient subacute rehab with adult patients. Kane also has participated in many clinical rotations at pediatric facilities, ranging from hospitals to outpatient clinics and school systems.

"Pediatrics is my passion," she told ADVANCE. "I have a specialization in pediatrics from school and my dream was always to work in an outpatient pediatric facility, so I was really excited to join JAG."

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Megan Acquaro, PT, DPT, provide treatment to a child at JAG Pediatric Therapy in West Orange, NJ. The facility opened last fall and offers care to children with conditions such as cerebral palsy, developmental coordination disorders, fine-motor delay, gross-motor delay and Marfan syndrome.

Kane added that the clinic adheres to a one-on-one patient philosophy.

"We try to schedule it so there's only one child in the clinic at a time," she explained. "We do have separate treatment rooms, so if I'm working with an OT patient, I have my own treatment area with a door that can be closed away from the gym. But it only happens occasionally that a child would be receiving OT from me while another child receives PT from Megan."

Likewise, for children who require both PT and OT, the treatments typically take place on different days and are never combined in one session.

"I'd say about one-fourth to one-half of the kids on my caseload come in two times a week," Kane added. "Usually with those children, the individual treatments range from a half-hour to 45 minutes. Whether because of attention difficulty, fatigue or endurance issues, an hour may be too long. For the kids who come in only once a week, sessions can definitely last an hour. It really depends on my recommendations and what parents feel is most appropriate."

Among the population at JAG, only a few children who have cerebral palsy currently require mobility devices.

"Right now we rent equipment for those families through a local vendor, based on the child's gait-training needs," noted Acquaro. "We expect to start purchasing more equipment once we have a better idea about what our client base will be going forward."

Excited Interest

How do children typically react to the idea of using mobility devices?

"A lot of times the kids are really interested and excited because it's a form of independence they haven't had before," related Acquaro. "So it's great to provide them with some way to get around on their own, be upright and at the same level as their peers. That allows them to explore their environment better and, especially in the classroom, really feel like part of the group."

If children would benefit from a device, Acquaro said it makes sense to start them as young as possible.

"Because mobility can play such a huge part in the development of all other areas, particularly for their social, emotional and cognitive development. So especially for that independent mobility, the earlier the better, based on the child. You can start at that 11-, 12- or 13-month age range as long as it's appropriate."

Similar to any assistive device, there are some contraindications to keep in mind as well.

"You definitely have to take into account their cognitive and visual ability," Acquaro noted. "You can still implement mobility with those kids, but you have to be a little more careful about what you choose. For example, powered mobility may not be the best option if they don't have the capacity to understand how to use the device or if visual difficulties are a factor."

Cost Considerations

There can also be a great monetary difference between various types of mobility devices.

"Especially for those kids who need powered mobility, it can be a huge cost to the family," said Acquaro. "You really need to take that into account when looking at different options. Powered mobility may be great and what they need, but it might not be appropriate if they're at an age where they're growing really quickly, because you can't replace a powered wheelchair as easily as you could something else. There's also the outside cost of adapting a car to transport it."

For related reasons, Acquaro likes gait trainers that are easily customized.

"I tend to favor trainers with many different active components that can be modified or removed as the child progresses. I find those work really well, especially if a child may be fast progressing. There are also some kids who just need a walker and not the gait trainer itself."

In a realm where cost can be such a factor, insurance coverage inevitably comes into play as well.

"Insurance is changing every day," Acquaro added. "Part of our job is trying to figure out what's happening with insurance and what will be covered by different providers. The therapist plays a huge role in writing letters of medical necessity and also filing appeals if claims are denied."

So if a child uses a mobility device like a wheelchair, for example, what might a therapy session for him involve at JAG?

"It's really important in occupational therapy to work on cognitive and visual abilities," explained Kane. "Such as how he's going to maneuver in his environment and how he's able to get in and out of the chair to play on the floor with other children. It's also working on positioning to set up for fine-motor activities in his school environment, along with addressing any other underlying difficulties he might be having in everyday life. Those sessions can involve a lot of education with parents as well."

Both Acquaro and Kane noted that although parents almost universally want what's best for their children, some are concerned about negative perception when it comes to mobility devices.

"There can be a stigma attached to certain equipment we want to use," Acquaro related. "For example, when a child is at the point of transitioning from a stroller to a wheelchair. So many times, our job includes explaining to families how important it is for a child to have that independence."

"Just helping them understand that whatever makes the child happiest and allows him to function best in his environment is what really matters," added Kane.

So what drew these two therapists to pediatrics as a specialty?

"Actually the way I discovered pediatric OT was through personal experience," Kane related. "In high school, I babysat my cousin who was diagnosed with autism spectrum disorder. So I was able to see her grow and how independent she became in activities of daily living and school-based activities through all her different therapies. It made me really appreciate OT and how we use that occupation-centered approach to help families and children. I just love seeing kids succeed in their environment."

Acquaro expressed similar inspiration.

"To me, it's really about being able to see kids achieve a level of independence, whether it's through mobility or something else," she concluded. "Helping them reach potential that even their own parents might not have realized was attainable for them." 

Brian W. Ferrie is managing editor of ADVANCE and can be reached at bferrie@advanceweb.com


 

I'd like to comment on the recent article in the Feb. 18, 2013, edition on mobility for considerations for children with physical limitations. I have been a PT for over 30 years with over 20 of those years in a pediatric setting treating children with a variety of conditions but primarily cerebral palsy. I have been around long enough to see some therapeutic theories of PT that significantly effect our practice patterns come and go, and in some cases, comeback again. One of those areas is how we approach mobility for physically challenged children. I have always come down on the side of providing independent functional mobility for a child as early as possible. This has not always been accepted by my peers as "best practices" especially from those that were trained, certified and became disciples of NDT. Don't get me wrong, in my experience, the NDT approach has many valuable tools in which to encourage and, hopefully, develop movement milestones however, over the years I have witnessed enormous delays in the development of independent functional mobility because the treating therapist was to hung up on developing those motor milestones above anything else. In a perfect world we should be doing both, developmental movement and functional independent mobility, but sometimes the amount of therapy contact time necessitates that we make decisions on what the primary focus of those therapy sessions should contain.
Last year I attended a seminar where the presenter stated this; "If a child can not pull to stand and cruise by age 2, they will never ambulate independently." The look on most of the therapists in the room was one of shock. She continued to present research and clinical data to support this claim. What she presented exactly matched what I have experienced in my twenty plus years of working in pediatrics.
Does this mean we should suspend weightbearing activities and all forms of upright mobility at the age of two if the child can not pull to stand and cruise? Certainly not. The body of knowledge regarding the physiologic, developmental and psychological benefits of the upright posture is well documented. However, if this provocative predictive statement is true, as I believe it is, our primary focus perhaps should be working on alternate forms of mobility to provide the child with independent mobility much sooner than many of us are doing. This would include powered mobility if cognitively and physically abilities permit.
Those of you who have worked in a pediatric setting; how many of you have worked for years on ambulation skill development employing all sorts of assistive devices and orthotics to finally come to the conclusion when the child attains the age of 10 or 12 that he/she is not going to be a functional ambulator and THEN you or another therapist become serious about exploring alternate forms of mobility so that the growing child can have some form of mobility independence? Are we really doing service to the child or, for that matter the family, in perpetuating the dream of functional ambulation when the literature says otherwise? I realize this is a very touchy and tough subject to address with parents but ask yourself this; what is our primary duty as a therapist? In my way of thinking, there is no more important goal for us as pediatric therapists than to provide a child with the least restrictive form of independent mobility and do so earlier in the child's life rather than later.

john  strein March 13, 2013
Owosso , MI




     

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