Moving through life with certain health conditions and disabilities requires flexibility, acceptance and creativity. No one knows that better than Shriners Children’s patients – many of whom use wheelchairs to achieve mobility and independence. With advancements in technology, state-of-the-art wheelchairs provide more accessibility than ever before. The Shriners Children’s team specializes in making them even more accessible so kids can achieve their goals.
Pushing the limits
Freedom Chairs, which are engineered by experts at MIT to allow users to navigate rough terrain from rocky hiking trails to the gravel of a playground, are made to reduce the limitations of a typical wheelchair. Our teams work to customize these chairs for individual patients’ needs.
Rosie, a 12-year-old from Utah, is a quadrilateral amputee. She recently received a Freedom Chair from the Challenged Athletes Foundation. Rosie loved having a new chair for her adventures; however, there was a problem. She had a limited range of motion when pushing the chair’s handles.
“She could maneuver the chair, but I felt like there had to be a better way to give her a longer range of motion so she could go further and get around better,” Rosie’s mother, Eileen, said.
During an appointment at Shriners Children’s Salt Lake City, Eileen and Rosie discussed the issue with her Shriners Children’s orthotist, Laura Erickson. “We let Rosie guide the conversation, and from there, Laura built prosthetic arm models based on Rosie’s ideas,” Eileen said. “When those didn’t work, they came up with new ideas together; it was cool to see Rosie so involved with the process.”
When creating these prosthetics, Laura kept a few key goals in mind. “I wanted Rosie to be independent,” Laura said. “Rosie needed to take her prosthetics on and off easily by herself. I also wanted to keep the design simple, to ensure the prosthetics didn’t feel like a hindrance to her.”
After some trial and error, Rosie was fitted with her new prosthetic arms.
“Because this is something I hadn’t done before, I made sure we all went into this appointment with realistic expectations,” Laura said. “But, she adjusted quickly, and watching her enjoy it was so great.”
Within a few minutes, Rosie was cruising down the hallways and making tight turns,
saying, “I got it!”
Now Rosie is tearing up the playground at recess and looking forward to the summer months when she can go hiking with her family.
“This new chair and the prosthetics Laura made allow us to go more places and try new things,” Eileen said.
A perfect fit
Kids are constantly growing and always active, so it’s especially important for children who use a wheelchair to have a perfect fit that can adapt to them. Shriners Children’s Twin Cities has been working with Rehabilitation Designs Inc. (RDI), a company founded by Marcia Montgomery and Dan Filipovich, to address the wheelchair seating and positioning needs of Shriners Children’s patients.
“We jumped in with our eyes open and worked to find the most cost-effective and appropriate chairs for the kids,” said Marcia. “After the first 10 years of trying to make wheelchairs provided by other vendors fit the kids, we discussed with the rehab team the possibility of our company providing all of the wheelchairs from start to finish.”
The investment is well worth it. “Our rationale was that if we measured the child and ordered each chair specifically for the diagnosis, size and needs of that child, it would be more cost effective, since we would not have to spend additional time trying to make the chair fit perfectly for them,” explained Marcia. “With this plan, we could fabricate the seating systems and ensure that each child had appropriate mobility and the support they needed to move their chairs. Additionally, we could get frames that grew, so the chairs would last longer and could be refabricated and used by more than one child.”
Since its inception, RDI has had the opportunity to support the power and manual wheelchair needs of thousands of kids. The RDI team works closely with each patient and family at Shriners Children’s Twin Cities to ensure the child is as active as they possibly can be in their wheelchair. “We keep in mind that the wheelchairs have to be very durable since they get used for dancing, marching band, hunting, baseball, shaving cream fights, fishing, baking, art classes, gym, soccer, sledding, playing with dogs, giving rides to friends – you name it,” said Marcia. “These kids are creative, and we’re here to support everything they’re interested in!”
She added, “One of the most enjoyable parts of providing wheelchairs to kids is customizing and making each chair special for each child, as unique as they are! With the help of light-up casters, colored spoke covers and hand-picked upholstery, they receive the right-sized chair in awesome colors and supportive seating to let them be wild and crazy kids … just like their friends.”
Marcia explained that insurance authorization for toddlers can be very difficult and expensive, especially when it comes to a specialized toddler power chair. As a work-around, RDI takes an adult base and remakes the seat frame, keeping the cost at least $2,000 less, and providing a durable chair that fits even the tiniest child. They have added many folding suitcase ramps to vehicles to help parents get the wheelchairs home and started a tester program to ensure that the little kids can drive a power chair well before they receive a new one of their own.
“It is wonderful to have RDI come into our clinic and handle the mechanics of our wheelchairs, because it allows our therapists to truly focus on the rehabilitation of our kiddos,” Melissa Forrest, PT, Ancillary Services Manager, Shriners Children’s Twin Cities, said. “We have been working together so long that there is a great deal of mutual trust, and we just know that collaborating with the RDI team will assist in making the right decisions to increase the mobility of our patients. For that, we are so grateful.”