Life skills coach Stephanie DiMartino helps Caleb Jones, who lives with cerebral palsy, through a TTC subway station. Mr. Jones is part of a program run by Holland Bloorview Kids Rehabilitation Hospital to help young adults learn to navigate independent life.Photography by Christopher Katsarov/The Globe and Mail
South of Bloor-Yonge subway station, Caleb Jones sat in his wheelchair looking down at his phone.
He looked up, peering through his glasses at the buildings around him, a Noah’s Natural Foods store on one side and a TIKA Tea House on the other, in search of familiar landmarks. The Apple watch Mr. Jones wore was supposed to vibrate when he had to turn, but it wasn’t responding that morning.
Mr. Jones had just gotten off the subway to meet his friend at the Royal Ontario Museum. The 19-year-old has cerebral palsy, which tightens the muscles in his body, limiting mobility. Although Mr. Jones usually gets around with a walker, he brought his wheelchair that day for the longer journey.
Mr. Jones had rarely taken the subway before starting the Independence Program a week earlier, run by Holland Bloorview Kids Rehabilitation Hospital for youth with disabilities. The program teaches young adults with physical and cognitive disabilities how to live independently.
Participants stay in a postsecondary residence during the program. For some, it’s their first time living away from home, receiving support for their transition into adulthood in line with a philosophy that people with disabilities should make their own decisions, even if they seek physical help to see them through.
Staff help participants with some of their tasks, and pushing Mr. Jones’s chair that morning was life-skills coach Stephanie DiMartino.
She could prompt Mr. Jones along, but not intervene if he steered in the wrong direction.
“This is Yonge Street,” she told Mr. Jones. “Is this the right direction?”
After a few minutes of deliberation, Mr. Jones realized he was heading the wrong way. He turned to Ms. DiMartino, and directed her to turn his wheelchair around.
“I got lost and confused,” Mr. Jones admitted with a smile.
On this excursion, Ms. DiMartino is able to prompt Mr. Jones in the right direction, but not to intervene if he steers the wrong way.
Mr. Jones and Ms. DiMartino cross the Yonge-Bloor intersection together. Mr. Jones brought his wheelchair for this trip, but he can also travel with a walker.
The Independence Program began more than 30 years ago with the goal of helping youth with disabilities transition from pediatric to adult care. The program is funded through the hospital’s foundation, with $1,700 covered by participants. There are a few programs of its kind in Ontario – including one in Ottawa and another in Mississauga – but it’s one of the longest, at three weeks. And in recent years, the program has evolved to include alumni who return and coach participants.
The transition to adulthood is a challenging time for youth with disabilities and their families, said Andrea DeFinney, a therapeutic recreation specialist at Holland Bloorview and the program’s co-ordinator for the past five years. “We hear from clients and families that the gaps in service … make them feel like they’re falling off the edge of a cliff,” she said.
One of 12 participants this year, Mr. Jones has lived away from home while attending summer camp, but said he signed up for the program to learn how to navigate the city. At his family’s home north of Barrie, Mr. Jones could rely on his parents or a friend to drive him around, but he said he wanted to learn how to go out on his own and find accessible routes to get him there.
“The most cherished freedom is our independence,” said John Morris, a U.S.-based global consultant on accessibility in the travel industry who has travelled to different parts of the world in a wheelchair. He said programs such as the Independence Program are particularly valuable for young people. “True independence is not something that they may be familiar with,” he said, saying that it could help people “unlock” the confidence to take charge of their own decisions.
When Mr. Jones finally arrived at the ROM’s crystal entrance, his friend was outside waiting for him.
“We made it,” Mr. Jones said. “I managed.”
Mr. Jones and Ms. DiMartino arrive in front of the Royal Ontario Museum.
Inside the museum, Mr. Jones consults a guidebook to find his way around.
Besides learning how to use public transit, participants learn skills like budgeting, cooking and laundry.
Amy McPherson, a scientist who’s part of the Independence Program team, noted that the program features both “structured” and “unstructured time,” so participants can make decisions about, for example, how late to stay up at night, and live with the consequences. She added that because participants are paired with a roommate for the program, they learn valuable social skills, too – such as how to get along, divide chores and help one another.
“You just have to talk to you roommate,” Mr. Jones said about what he learned. “Don’t assume.”
Another important feature of the program is that it offers space for making mistakes.
“Young people with disabilities often don’t have chances to have that experience of calculated risk-taking,” Dr. McPherson said. She noted that participants have occasionally travelled for hours in the wrong direction while navigating the city.
“You come out of this program a changed person,” said Melissa Thorne, an alumna of the program who returned this year to help coach participants. “It helps you become so independent and so much more courageous.” Ms. Thorne completed the program in 2011 before she moved to London, Ont., for college. She’s now studying early childhood education at Durham College with a focus on autism and working for Holland Bloorview at the same time.
Meanwhile, Mr. Jones said the program helped him practise new skills.
“My cooking skills have improved,” he said, swiping on his phone to a photo of Alfredo pasta he made from scratch.
But besides the practical skills participants learn, Dr. McPherson said the program’s real value is its impact on their attitudes.
“It often gives people a lot of hope and excitement for their future, that things they never thought were possible might actually now be possible with some support.”
Mr. Jones smiles on the TTC subway.
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