Tommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.
Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”
The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.
“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”
“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”
Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.
The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.
For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.
The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott, Holland Bloorview’s outpatient playroom coordinator.
“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities will be systematically marginalized for the rest of their lives—so if engaging them in a council helps them become their own advocate that’s an incredible life skill down the road.”
When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”
Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.
The council meets on a project basis to consult with hospital and external programs looking for input from this age group.
Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it note on items they’d like to see in the playroom. "The toy catalogue captured data from kids who weren't as verbal or who are shy,” Daniel says. “We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids get could in and out independently—and getting a wheelchair accessible art easel and sensory table. We also lowered the level of shelving and made it open and at eye level for kids.”
Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn't presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”
Another client who's lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. "These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief," Daniel said. As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.
They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they're developing are easy to use and fun, so Martin and Tommy and friends came out for a night of video-game playing (in the photo they're with scientist Elaine Biddiss, right, and their mom Andrea, left).
“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy's mom.
Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.
“This is teaching them skills they'd never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They're learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can't hear him. That’s something we practise.”
To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.