This article was written by Debra Wells-Hopey for the Spring/Summer issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre.
How a customized wheelchair program provides quality of life for hundreds of kids.
Taya is spirited, bright and patient as she describes the way she gets around in the world.
“When I move my head left, I turn left,” she says enthusiastically, even though she must have explained this to people many times over. “When I move my head right, I go right. And when I move my head back, I go straight forward.”
At 11 years-old, Taya has Cerebral Palsy and is a long time visitor to IWK Specialty Seating, a service within the IWK’s Rehabilitation Service. The service offers assessment and provision of customized seating and positioning equipment, including seating inserts, wheelchairs, special-needs strollers, bath seats, car seats and toileting aids.
Julia Gates, Occupational Therapist in Specialty Seating, and Nancy Cashen, Operations Manager for Rehabilitation Services, have known Taya since she was three years old. “This program is designed to assist children who can’t walk on their own, most often due to Spina Bifida, Muscular Dystrophy or Cerebral Palsy,” explained Gates. “Children are referred to the program as early as 14 months and stay with us until they are ready to transition to adult health care.”
Gates explained that although children this young are able to still use a stroller, it means they are dependent on others to get around — at an age when they want to start exploring the world on their own.
“Independence is an essential part in a child’s growth and development,” added Cashen.
Specialty Seating at the IWK consists of Cashen and Gates, as well as a Specialty Seating Technician, David Beattie, and a Funding Coordinator. Together, along with the family, this team determines what kind of wheelchair would be best for the child.
“We take many factors into account,” says Gates. “For instance, a level of hand mobility is essential for maneuvering a manual wheelchair, but not necessary for a power wheelchair.”
The amount of seating support required is a complex assessment that is completed by the occupational therapist and takes into account the disease prognosis, planned orthopaedic surgeries, maintenance of skin integrity, comfort, functional abilities and wheelchair skills. All children are different, and the amount of support required could be viewed as mild, moderate, or complex. Generally, seating for a mild support is not custom made, and may be arranged through a local wheelchair supplier in the community. The seating for children who require moderate or complex support is custom made by the Specialty Seating Service at the IWK.
There is a workshop onsite at the IWK where Beattie employs his expertise. For specialized seating, an impression is made on a mould that resembles a large bean bag. This shape can then be transferred to a 3D digital model on the computer. These images are sent via email to the United States where the only machine of its kind in North America manufactures the seat. It is then shipped to the IWK for fitting.
As for Beattie, he has been with the hospital since 1989. He was familiar with an Occupational Therapist who suggested he may enjoy the work. Considering Beattie has remained in the program for more than 24 years, it certainly is a great fit.
“This is the perfect job as far as I’m concerned,” says Beattie. “I get to work with my hands and help people simultaneously. The work is challenging and rewarding.”
Beattie’s workshop looks much like any other, yet very unlike anything you expect to see in a hospital. There are various materials stored: pieces of repurposed wheelchairs, three industrial-sized sewing machines, neoprene for upholstering, two band saws, a table saw and a wealth of tools.
“When we first see someone we measure them for a seat using a fitting frame. From these measurements I construct a seat out of foam and plywood and I upholster it. I also adjust and repair wheelchairs as needed. I’d say one of my favourite parts of my job is going on the mobile clinics. Several times a year we go to Cape Breton and the Annapolis Valley. At times we go to schools here in HRM, or even homes.”
Gates explained that the first order of business when a child needs a wheelchair or seating device is to meet with the family and get to know their needs.
“This initial meeting is so important,” says Gates. “It’s when we first get to meet the child; establishing their needs, administering a postural assessment, taking measurements, then making recommendations.”
“Recently we had a child who needed a new power wheelchair. We had two styles and tried them both in the home to see which operated better in that specific environment. It needs to work in the child’s daily life.”
Having the right wheelchair and seating can make all the difference in the world when it comes to quality of life — kids need to participate with classmates, explore their environment and have a sense of independence.
“When a child receives their first wheelchair it is often a period of growth for both the parents and the child,” says Gates.
Taya’s mother Christine knows all about it. She has been taking Taya to Specialty Seating and working with the team for eight years. Taya was only three when she received her first wheelchair and met the group at Specialty Seating. She was outgrowing a stroller at this point, not only in a physical way but also as a growing child her needs were changing — she had a desire to be independent, to be able to explore the world on her own.
“Although she was small enough to still use the stroller, it no longer seemed to be the appropriate choice,”explained her mom. “The chair was so much better for her
Taya was born with cerebral palsy. She enjoys her grade five class and likes to read — especially Harry Potter books. She also swims and uses a sit ski at Wentworth ski hill.
“I have both a manual and a power chair,” explained Taya. “I use the power chair at school. Some places are easier to use a wheelchair in than others though.”
Although Taya drives herself around by using head movements, the wheelchair must be steered remotely by a device similar to a joystick when it is being loaded into the family van. Apparently, according to a laughing Taya, dad is an expert at it, while mom, who is quick to agree, isn’t as deft.
Taya was eight when she got her first power chair. She started at six years old “training” with a joy stick, but it was a lot of work and a head array began to make more sense. The family visits Specialty Seating about once a year.
“To a certain extent, the chairs grow with her. Especially the manual chair, which she will have for about eight years,” explains Christine. “The power chair needs changes or replacing more frequently.”
As for cost, the family is fortunate that both Christine and her husband have good health care plans, however, they still certainly incur costs. The head array alone cost $10,000, which is as much as the chair. Then there are the costs of converting the family van with a manual ramp that has to be lifted and unfolded. A power system is even more expensive. This is the reality for families with a wheelchair. Taya gets to continue to visit the team at Specialty Seating until she is ready to transition to adult health care.
“I can’t say enough about the program and the staff,” says Christine. “When your child is first diagnosed, you’re in a daze. You don’t know where to go or what to do. They have helped us immensely, even in emergency situations.”
One such situation was during a weekend when Taya’s chair was accidentally run over, crushing one of the wheels. It meant facing a whole weekend propped up or in bed. Not a great thought for a young, energetic girl like Taya. Christine contacted Gates and Beattie who were more than willing to go into work on a Saturday to get the chair fixed. Says Taya, “Dave and Julia are extremely nice people and I would come to them all my life if I could.”
And there’s no higher praise than that.
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