Children in wheelchairs need to learn how to navigate the world. This program shows them how. : NPR

Skills on Wheels, a program of Indiana University, includes a fair where participants can play games, eat and connect with manufacturers for free wheelchair repairs.

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Approximately 3.7 million wheelchair users live in the United States, and they propel themselves an average of 2,000 to 3,000 times a day. Some of this is simple, but wheelchair navigation sometimes involves negotiating unexpected curbs, stairs, steep hills, and other obstacles. In addition, most wheelchair users do not have access to formal training to learn how to navigate smoothly on their own.

A unique, free program called Skills on Wheels, run by Indiana University Indianapolis, aims to bridge the gap between young people. About 20 kids, ages 8 to 17, spend several days on campus learning how to navigate obstacles like ramps and speed bumps. Then they put those new skills to the test outside.

Savannah Healton, 12, has spina bifida, a neural tube defect in her spine. She uses a wheelchair and has recently been practicing doing wheelies.

“It’s basically you push twice and then you jump into your wheelie,” Healton said. “So when you go up a curb, you can get into your wheelie so you can go up the hill or the curb or wherever you’re going.”

There is little research on children’s wheelchair use, but one study found that 75% of adults who use wheelchairs fear falling. Nearly 65% ​​reported falling out of their chair, and more than half had incidents that resulted in injury. Even without accidents, improper technique can injure muscles and nerves.

A child’s self-confidence can take a big hit if they don’t know how to maneuver their wheelchair or are afraid of falling out, says Indiana University program director and occupational therapy researcher Tony Chase. Children may decide to skip certain activities at school or with friends if they know there are obstacles, such as narrow doors or stairs.

“We’d love to change the world and make it accessible, but that’s too ambitious a goal,” Chase said. “Instead, let’s try to give kids more confidence in navigating this inaccessible world.”

Researchers have developed a list of 33 basic skills that are essential for operating a wheelchair in a variety of settings. However, children may not learn these skills in school or during physical or occupational therapy.

Maria Fuchs, an occupational therapist who volunteers with the program, says she didn’t learn much about practical wheelchair training during her studies.

“Often wheelchair training is not the main focus…other things like eating, dressing or play skills, those kinds of things, kind of take priority,” Fuchs said.

Occupational therapist and Skills on Wheels volunteer Maria Fuchs teaches 12-year-old Savannah Healton some wheelchair skills.

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Children are often taught only the basics of operating a wheelchair, she says, such as using the wheel locks and taking the device apart, and even then only if insurance covers it.

Kerri Morgan, an occupational therapy and neurology researcher at Washington University in St. Louis, says some people’s insurance doesn’t cover the cost of rehabilitation to learn how to use a wheelchair.

“There’s a gap in education, and there’s a gap in actually creating an environment in the medical model where clinicians know how to justify it in their notes so that health insurance will pay for it,” Morgan said.

Morgan said it’s common for wheelchair users to learn new skills from other people with disabilities or by watching videos online. But that’s not always safe if someone isn’t advanced enough to try a new skill, if their wheelchair is set up differently or if they don’t have someone behind them to catch a fall.

Participants practice for several days before trying out their new skills outdoors, in situations they would encounter in everyday life.

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Even with a spotter, practicing certain skills can be dangerous. Large wheelchairs can weigh anywhere from 15 to 50 pounds, not including the weight of the person in them.

That’s why Savannah’s mother, Chanda Healton, holds a strap attached to the back of her daughter’s wheelchair so Savannah can safely practice wheelies.

The program is not only helpful for Savannah, it also helps her mother learn proper techniques in case the wheelchair starts to tip backward. Healton says she plans to take her daughter again next year.

“It’s amazing,” Healton said. “The first time I saw her, I had tears in my eyes. I thought, oh my god, that’s my little girl.”

Side Effects Public Media is a health reporting partnership between NPR and public radio stations in Indiana, Missouri, Iowa, Ohio and Kentucky.