By Rich Smith
hoosing the right mobility aid for a pediatric client has never been more daunting an endeavor. Why?-rapid advances in technology, greater range of product choices, and heightened expectations from parents and caregivers, says Lisa Mortenson, MOT, OTR, ATP, director of therapy for ChildrenFirst Home Healthcare System in Winter Park, Fla. According to Mortenson, satisfactorily addressing this challenge requires recognizing from the start that no two children of the same age who have the identical medical condition will be simultaneously at a like point in disease-state progression and, as such, will not possess equal physical characteristics, abilities, and functional status. "It really isn't possible to say, OK, here is a child with spina bifida; therefore, he or she is going to require a particular mobility aid," she says. "You might have one child with spina bifida who needs a wheelchair but another with the same diagnosis who instead needs a walker, and a third who requires only a stander." Adds Teresa Zeegers, PT, ChildrenFirst's seating and mobility clinical manager, "Deciding on a mobility product has to be looked at on a very individualized basis. For that reason, we make it policy to first see whether the child has the potential to become-or is in the process of becoming-an ambulator before attempting to narrow the choices. If it proves reasonable to conclude that the child isn't going to be a functional ambulator, then we know we need to look at wheelchairs as the appropriate mobility aid." The Assessment Phase Once Zeegers and her rehabilitation colleagues determine that the needed mobility aid is a wheelchair, they then further refine the product search by considering the child's upper extremity movements. "We do this to identify the level of strength the child has for propulsion of a manual wheelchair," says Zeegers. "If we see that upper extremity strength is lacking and there is little or no possibility that strength could be developed through therapy, then we'll look at powered wheelchairs. Another factor is cognitive status. Is the child cognitively able to operate a powered wheelchair independently? If not, we're back to looking at manual chairs." Zeegers contends that making such decisions on the basis of a one-time assessment is unwise. "There's no way to determine from conducting a single assessment whether someone will be a functional ambulator," she explains. "It usually takes multiple assessments over a period of 3 to 4 weeks to make such a determination." In conducting assessments, the first step is to obtain from parents and anyone else who might have a hand in the child's caregiving a full medical and social history of the client, Zeegers advises. "Information we want to see would include descriptions of previous physical ailments, past and recent surgeries, improvements or deteriorations in conditions and the suspected or observed causes of same, history of skin breakdowns, and functional status," she tells. The best place to conduct the assessment is in the client's home, Zeegers says. "We want to visit the child's home for this assessment so we can see what kind of environment the child is in," she indicates. "This helps us ensure that the equipment we ultimately recommend will be appropriate for a particular home setting." PARENTAL CONCERNS Related to home environment, an issue that must be weighed in choosing mobility equipment is the child's transportation needs. "Many of the parents of the children with whom we work rely on cars for transportation," says Duff Freel, ATS, ChildrenFirst seating and mobility product manager. "For them, the right mobility aid is something that is travel-friendly. If we're talking about a wheelchair, it must be one that can be disassembled enough or collapsed in some way to be able to fit it inside their car. "Meanwhile, we also have children whose parents are dependent on public transportation. So for these clients, we have to take into account whether the wheelchair can be loaded aboard a bus with relative ease. Not all can." Another factor that can exert strong influence on product selection is the aesthetic wishes of parents and caregivers. "Some parents of children 3 years old and younger are reluctant to accept that their child should be fitted for a wheelchair," says Zeegers. "When parents hear the word ‘wheelchair,' in their minds that's a final determination that their child is not going to ambulate. A lot of parents are not ready to accept that outcome. Often, parents need time with appropriate alternatives, such as a stroller that provides the positioning support the child needs but that won't quite look like a wheelchair. These parents are more comfortable with the aesthetics and symbolism of a stroller." There is no question that parental concerns are becoming a bigger issue in the product selection process, says Mortenson. This, she asserts, is a reflection of the trend among parents to act as stronger, more insistent advocates for their children. "Part of what's behind this is the fact that parents are becoming more aware of the services and equipment available to help their children," she offers. "There has been a great deal of media attention focusing on children's disabilities, which is making parents aware of the therapies, services, and products for their own children. There's also more attention provided in the schools." Beyond that, the willingness of parents to be strong advocates for their children is a reflection of changing generational attitudes. "Today's parents are much more outspoken and activist-oriented than their parents and grandparents were, who tended to be more accepting of their circumstances," suggests Mortenson. "Today's parents, by contrast, aren't bashful about demanding the services or support or products they feel their children need." FUNDING QUESTS Once a mobility product has been chosen, training must then be provided to family members and caregivers. "We've found that if caregivers receive inadequate training, there is a high likelihood that the product will sit in a corner of the house and collect dust," says Mortenson. "Proper training should include instruction in the setup, use, and maintenance of the product. If it's a folding wheelchair, the caregivers need to be practiced in putting the chair into a collapsed position, properly by loading it into the car, and reopening it. "In particular, we want to make sure caregivers are trained to be alert to various safety issues concerning the chair-how to identify conditions that need immediate attention from a qualified repair technician." Says Freel, "It's surprising the number of caregivers who don't understand the risks to the child that are caused by improper placement in the seat. Training will demonstrate to caregivers the proper placement technique, making sure the child is seated all the way back in the system and then has the correct amount of lap-belt tightness to prevent slippage from that proper positioning." After the mobility equipment is selected, the seating and positioning system then must be custom crafted for the child. To ensure that the fit remains correct, ChildrenFirst makes a practice of conducting postdelivery follow-up visits to the child's home. "When you're providing pediatric mobility equipment, it's not a one-time effort," says Mortenson. "We return to the home 2 to 4 weeks after we've fitted a child to the product and perform a follow-up visit to verify that the product still meets the family's needs and expectations. We also follow up at later intervals to confirm that the child has not outgrown the product or the seating and positioning system." Reimbursement for these efforts is secured from one or more funding sources, which can include Medicaid, private insurance, home- and community-based waivers, private and public trusts, and disease-specific national advocacy associations. "Whether children will receive adequate funding to pay for everything they need depends on the funding criteria of the source in question," says Mortenson. Mortenson asserts that coming up with fresh, creative strategies for obtaining full funding is not nearly as important as being able to supply funding-source decision-makers with comprehensive information about the child's needs. "That's one reason why we take the approach of being highly inquisitive in our assessments of the client," says Mortenson. "Rather than look at the payor source and try to figure out what information we need to pull together to satisfy that source's funding requirements, we start out simply by putting together the most thorough evaluation conceivable for that child regardless of funding sources and then acting as the strongest possible advocate to see to it that the child receives whatever he or she is going to need." UNITED THEY STAND Always a challenge in the course of selecting mobility products for children is the matter of which rehab discipline is better qualified to handle these cases: physical therapy, occupational therapy, or speech-language pathology. The answer arrived at by ChildrenFirst is all of the above. "We conduct our assessments using a team approach that deeply involves the three rehabilitation disciplines," says Mortenson. "We take this approach because we believe it isn't possible to determine the perfect mobility device for a child based solely on one discipline's view. We want to know the views of the occupational therapists, of the physical therapists, and of the speech-language pathologists. "From physical therapy, we want to know everything about this child's gross motor skills and functioning, and what the progress has been. From occupational therapy, we want to know all about the child's fine motor skills and daily activities, and what the child will have to do in this chair, in what sorts of environments. From speech-language, I want to know what the child's respirations and feeding skills are, and if the child is going to need some kind of communication device that the wheelchair must be able to accommodate." Mortenson expresses delight that at ChildrenFirst, at least, the three disciplines have been able to work together in a supremely cohesive fashion. "We really haven't encountered any difficulties in developing and operating this team approach," she says. "That's truly gratifying, because we've found that all three types of therapists are each great advocates for their clients. In our experience, they've all been very willing to work as a group and do whatever it takes to get the right mobility products for their kids." However, because of schedule conflicts, it's often not possible to assemble the team in the same room to discuss each case. To overcome this hurdle, ChildrenFirst has adopted a case-manager system. The case manager's job in this instance is to contact each member of the team and gather their input on those occasions when a face-to-face meeting with all the players present cannot be arranged, Zeegers reports. "I'm responsible as case manager for making sure all bases are covered and keeping each member of the team in the loop with regard to recommendations for the child's mobility device," Zeegers says. "The team approach makes life easier for therapists, especially when you take into account how advanced the technology available for mobility products has become in recent years." Mortenson says the technology is nothing less than amazing. "In the realm of switch controls for power wheelchairs alone, we've seen remarkable innovation" she says. "Not every child in a power wheelchair has the physical ability to operate a joystick control. So, now, manufacturers have introduced controls activated by movement of the client's head. There are even controls operated by the client's gaze. We have, for example, children with muscular dystrophy-the muscles controlling movement of their eyes are sometimes the muscles over which they have the best control. These children have cognitive abilities, so switches operated by their eye gaze represent a very creative and dynamic solution. "Before the advent of these technologies, it would be an impossibility to provide a solution to the child unable to physically operate that joystick." In Freel's opinion, manufacturers have "done a real good job soliciting input from and listening to those of us on the front lines and down in the trenches. As a result, they are beginning to develop products that are grow-able-that is, products that can be resized every so often with a few simple adjustments in order to keep pace with the growth of the child. This way, the child can enjoy more years of use from the funding source's original investment in mobility equipment. "Selecting the right mobility product for each child is a very involved a process, but at the same time, those products now have a much greater capacity for making life better for everyone." Rich Smith is a contributing writer for Rehab Management.
