Have Wheels, Will Travel

Original article appeared in Occupational Therapy Now magazine: September/October 2003.

Ryan says he is used to attention; in fact, his story has been in newspapers and other magazines before. The reason? No one thought it was possible for someone with such severe disabilities to live outside an institution.

Born with a severe form of spina bifida, a condition that affected the development of his spinal cord, Ryan has needed a team of experts to not just keep him alive but to enable him to live his life as fully as possible. When the doctors had to place Ryan on a ventilator when he was 12, they gave him one year to live. That was 13 years ago and since then Ryan has moved from his family home to a two-bedroom co-op apartment in an accessible neighbourhood that allows him to get around easily. A former bocci ball champ and avid Trooper fan, Ryan gets out as much as he can but to do so requires some very sophisticated technology.

“We are fitting Ryan with a new wheelchair because he is putting up with too much pain and has developed pressure sores,” explains Francine Miller. As well, Ryan’s neck contractures prevent him from seeing directly ahead and reduced arm strength is making operating his wheelchair more difficult. “We want to build a chair that gives him maximum function so he can participate in all the activities he enjoys.”

Francine is an occupational therapist with Access Community Therapists (Access), a B.C. company that specializes in helping people with severe disabilities to live in the community. She is one of several seating consultants at Access, all of whom have specialized skills and knowledge in wheelchair seating, positioning and mobility. People, like Ryan, with complex seating needs, require custom fabricated seating, specific postural controls, individualized switch access methods or engineered adaptations to their wheelchair so they can sit safely and comfortably.

Ryan’s chair is anything but simple. He can tilt it forward to compensate for his lack of neck movement. Ryan can also recline the back and tilt the entire wheelchair back to help manage hip and back pain. His wheelchair controls, which are carefully positioned, consist of two switches and a joy stick. These allow him to operate all the functions of the chair with minimal effort. To complete the fit, Ryan has a custom moulded chest plate and back support, which in combination keep him in a safe and comfortable position.

Hauling a ventilator around also presents some challenges. Ryan’s chair accommodates the ventilator without being too long so he can get into small spaces such as elevators. The wheelchair also powers the ventilator so he doesn’t have to carry heavy batteries with him.
In addition to Francine, several members make up Ryan’s seating team, including the home care occupational therapist (OT), the seating technician, the orthotist (for the chest plate), a medical equipment representative and his caregivers.

The home care OT works with Ryan to identify his seating needs and brings in an Access consultant when necessary. The consultant often provides training and is a mentor to the home care OT regarding specific seating practices. Ryan’s caregivers also play a major role in helping to ensure that pressure sores or other medical complications do not develop due to seating problems. “We often see clients such as Ryan every six months as their needs can change quickly,” explains Jo-Anne Chisholm, cofounder of Access.

Without the support of his seating team, Ryan would not be able to live in the community and the costs to support his care would be even greater. “Because Ryan uses a ventilator, the only hospital ward he could stay on would be the ICU which is expensive and takes up bed space for other critically ill patients,” explains Ryan’s nurse manager Wendy O’Connor. Although he has 24-hour-care attendants, the cost is still much lower and his quality of life is far superior.

One can’t underestimate the importance of being part of a community and the ability to come and go as freely as possible. Occupational therapists, like those who work for Access, help individuals to participate in the activities that make life worth living. “We’ve been able to get Ryan to Montreal to participate in a bocci ball competition. He’s also gone to Manning Park,” says Francine. “He’d love to travel more and we’re working hard to make this possible.”

— Mary Clark Green