Creating seating and positioning systems for pediatric patients since the early ’70s, when a pediatric wheelchair was little more than a custom miniaturized adult wheelchair, tends to give you a broad knowledge base in long-term disability critical to creating a good functional outcome, says Kathleen R. Riley, physical therapist (PT), Assistive Technology Supplier (ATS), Certified Rehabilitation Technology Supplier (CRTS®), with National Seating & Mobility Inc, Mooresville, NC. It also tends to make you humble, because no matter how much you know, with kids there is always something new.

“Every day you are challenged to come up with a new solution or provide a better service and that is what makes it really fun,” Riley says.

Riley, who has worked with pediatric seating and positioning since 1973, knows enough to know that she will never know it all. So, when a school therapist called to complain about a seating-and-positioning system, she did not argue. She just went to the school to get a first-hand look at the child.

“The school therapist had been telling me how terrible the student looked in her chair and to me she looked wonderful. She was well aligned, her trunk was nice and midline, she was sitting in the chair, the length of everything looked good,” Riley says.

But before Riley contradicted the school therapist, she and the child’s clinic therapist listened. The school therapist wanted the child to be able to bend forward so she could reach the table and do her work without getting fatigued. But the child had a severe limitation on the flexion of one hip that did not allow her to come any more forward. “Previously, we couldn’t even get her straight, let alone forward. So she looked good,” Riley says.

From the school therapist’s standpoint, however, it did not matter that the child’s hip was limited. It was not functional in the school environment. The solution, which Riley is still working on, may be some type of tilting system. “You can do a really good clinical seating system, but if the child goes to an environment where it doesn’t work, it is not good,” Riley says.

With a variety of people to please—including teachers, therapists, parents, payors, and the child—a growing body to accommodate, and a constantly changing environment, creating the perfect pediatric seating-and-positioning system is challenging. “You always have to think of change,” Riley says. “You have to think of dimensional changes. You have to think of how the environment is going to change.”

That is why it is critical for the supplier and the clinician to work together to achieve the best outcome, Riley says. “Even though I am a clinician, I will not serve that role,” she says. “And even though, on many occasions, I can put a child in my lap and move them around and know possibly more of the answers to my own questions than the treating therapist does because of my years of experience, I still need to know the therapist’s long-term information about the child. Kids can be very different from one day to the other, adults probably can too, but it doesn’t show so much in their physical presentation as it does with kids. If [a child is] tired or sick or grumpy or whatever, then assessment that day must be very different, whereas the clinician will have seen [the child] over a continuum. So it is really important to get that long-term picture of function from someone with the clinical background.”

The Art of Listening
Make sure that the first question you ask when setting up a seating-and-positioning system is “Who is the treating therapist?” Riley says. Then look at the physical presentation. Study body dimensions (children’s dimensions differ somewhat from those of adults), limitations in range of motion, asymmetries, and, when possible, why those problems exist. If there are issues of abnormal muscle tone, are they present all the time or do they change during the day or with the environment? A poor underlying assessment is at the root of many seating and positioning problems. “You can’t intervene and be effective unless you really understand the underlying issue,” Riley says.

Another important issue is how the wheelchair will be used now and in the future. For example, will it be used recreationally? Will it be used for long distances, such as the hallways of a large elementary or middle school? Will the wheelchair need to go on a school bus? Often parents are more comfortable with a stroller-style device for preschoolers because it looks more normal, but if the child will need to start riding a school bus in 3 years or less, the stroller will need tie-down mechanisms on it. “If, in a year the child is going to be on a school bus, you will want to get [those mechanisms] up front because [a stroller] is much more expensive to retrofit,” Riley says.

Consider the functional goals of therapists, physicians, and teachers. If the child’s condition can be changed or altered, you will set up a wheelchair one way. If the child’s condition will not change, you may set up the wheelchair a totally different way, Riley says. “The physical therapist might have a goal that long term [the child] is going to be ambulatory with a walker, so you might have to have different accessories to meet that need, as opposed to someone who doesn’t feel that [the child] will be [able to use a walker in the future],” she says. “And again, because you are looking at a device that is going to be provided for 3 to 5 years, you can’t just look at what the child is doing right now.”

Also, invest time and resources in staff education. It can be hard to make that commitment, Riley admits, but with the trend toward rehabilitation suppliers achieving higher and higher levels of expertise, training is becoming a big factor for third-party payors and referral sources alike.

In addition, training can also be critical in understanding how to use free manufacturer growth kits to your benefit. Because suppliers get paid only for a couple of hours of labor when installing a free growth kit, some choose to recommend a whole new wheelchair instead, Riley says. “A lot of people will say they need a new wheelchair when really they could get a free growth kit,” she says. “The kits are not used as much as they should be to help the funders and our long-term dollars.”

Providers often experience difficulty getting reimbursed for pediatric seating and positioning systems. “From the standpoint of clinicians and families, they want something that is going to do everything, and if you have something that does everything, it is going to cost more,” Riley says. “That is not necessarily a bad thing, but a third-party payor doesn’t want to pay for bells when [some pediatric patients] only need whistles.”

A big issue payors need to understand is the problem inherent in the rule that all components on a wheelchair must last 3 years, Riley says. “At the end of 3 years, you can have a wheelchair that is in very good condition and has been cared for,” she says. “It is hard to have a cushion that you could reuse or do anything else with.”

Another issue for Riley is the practice of insurance contracts dictating which mobility equipment provider their beneficiaries may go to. Riley has lost some of her pediatric clients when their insurance providers changed, and she fears that continuity of care suffers when that happens.

Fortunately for pediatric patients and their families, Riley enjoys making a difference in the lives of children and their families despite the frustrations. “It is all about supporting a family when you are dealing with pediatrics,” she says.

Lena Lindahl is senior editor of Dealer/Provider.