If you’ve never known a child with a complex illness or disability, you might not have heard of a certain building on a side street in midtown Toronto, just south of Sunnybrook Hospital. But if you know, you know: Holland Bloorview Kids Rehabilitation Hospital is where magic happens for thousands of children, youth, and their families each year. The hospital has been leading the way with its innovative, and family-centred approach to treatment and rehabilitation for children and youth with medical complexity, injury or disability for more than 100 years.
What makes Holland Bloorview so special is its commitment to going beyond inpatient and outpatient care, with staff working tirelessly to help young people achieve their goals. This work includes not just physical and cognitive development, but also acquiring life skills such as employment readiness, transitioning to adult services and friendship.
“Holland Bloorview feels strongly that you can’t care for a child’s health without thinking about their future,” explains Julia Hanigsberg, President and CEO of Holland Bloorview. “We have an important role in driving social justice for kids and youth with disabilities and it’s important that we help drive this change beyond our walls.”
An end to ableism
It’s hard to put yourself in the shoes of someone facing the kinds of obstacles many of the young people at Holland Bloorview face, but for a moment, you can try. That’s what the children and youth who are sharing their stories are asking you to do for this year’s Dear Everybody campaign, which focuses on ableism.
Dear Everybody began as a movement spearheaded by clients and patients at Holland Bloorview, back in 2017, to raise awareness about the stigma faced by kids and young adults with disabilities. The campaign has grown over the years, and now receives national attention.
While ableism is a word that people are increasingly becoming aware of, few truly grasp its implications. In this year’s campaign, you can hear how children and youth experience ableism, in their own words, through a series of videos and interviews on the website, deareverybody.ca. The concept of ableism goes beyond representation—it’s about representing and accommodating both visible and invisible disabilities in all walks of life. Hanigsberg is excited for Holland Bloorview to demonstrate what allyship is, to the broader community.
“Everyone has a responsibility to understand ableism, seek it out, and work towards dismantling it so that children and youth can look towards a future where everyone belongs.”
Where technology
and inclusion intersect
The research happening at the Bloorview Research Institute is changing lives
Chances are you’ve recently had a moment or two of unmitigated anxiety in the past several years that might have interfered with your ability to function. Anxiety also impacts children, including children with autism. Many children may not realize their anxiety levels are building until it’s too late to calm down.
Dr. Azadeh Kushki is a computer engineer turned scientist at the hospital’s Bloorview Research Institute (BRI) who recognized an intersection between her research focus and a community need and started working on solutions. A senior scientist in the BRI’s Autism Research Centre and an associate professor at the University of Toronto, she is developing technology-based supports for children with autism and their families, funded by TD through the TD Ready Commitment.
The BRI is an integral part of how Holland Bloorview employs the latest research to create more meaningful and healthy futures for children and youth with disabilities. Housed within the hospital itself, BRI is the largest hospital-based childhood disability research institute in Canada and is internationally renowned for its work.
“All aspects of our research are very much grounded in needs that are identified by families and the kids,” she explains. “Our research is a partnership.”
An anxiety meter
To monitor anxiety levels in children with autism, Dr. Kushki created an app called holly™ that can be downloaded on wearable tech like a smartwatch. The app identifies rising anxiety levels early so that children, or their caregivers, can work to de-escalate their emotional arousal. Studies have found that 100% of children wearing holly™ were able to identify rising anxiety levels, compared to 30% of those not using it.
Technology like holly™ is an important step toward equitable access to and inclusion in everyday activities for children with autism, according to Dr. Kushki.
“Many kids with autism face barriers accessing and participating in the same opportunities that other kids do,” she says. “We’re hoping that holly™ can help by supporting kids with their emotion regulation, but also by providing a way for caregivers to understand the experiences of kids.”
Helping more people
The BRI covers a wide range of research with the potential to impact as many as 200,000 children and youth with disabilities across the country. What’s more, some of the supports in development can be beneficial to children beyond the hospital’s purview.
Dr. Kushki and her research team are also developing two other technology-based resources supported by TD through the TD Ready Commitment: one is a virtual-reality experience as exposure therapy, to reduce children’s anxiety when visiting the Holland Bloorview dental clinic, while the other is an augmented-reality app for tablets and smartphones to help children to follow a sleep routine.
“Everything from design to evaluation is based on our partnership with children and families” she says, “the feedback we get is essential to making sure that our technologies really reflects the needs and experiences of families and kids.”
Creating innovative tech to help kids communicate
Dr. Tom Chau, Vice President of Research and Director of the BRI, knows that non-verbal children have plenty to communicate, but without the means to speak—either due to degenerative health conditions, brain injury or other physiological challenges – they may be underestimated or overlooked. His work in the PRISM Lab, at the BRI, aims to overcome that.
“As human beings, so much of our identity is fixated on speech,” he explains, “but, in fact, there are so many other ways we can communicate with each other—we just need the right tools to unlock them.”
One of the ways Dr. Chau and his lab are using technology to help kids facing this challenge is with personalized brain-computer interfaces (BCI). Devices that can do this already exist, but they require a certain amount of physical dexterity or motor skills some children don’t possess, despite their cognitive capabilities.
For the past 20 years, the PRISM Lab has researched and developed assistive technologies, with an increasing focus on the emerging field of BCIs. Now at its forefront, the lab is partnering with Alberta Children’s Hospital (Calgary) and Glenrose Rehabilitation Hospital (Edmonton) to continue this innovative research.
Dr. Chau’s latest interface prototype is a cap that shines light into the brain to monitor blood oxygenation to identify and harness specific patterns of brain activity. The cap can be worn and used to track and convert these patterns into specific actions, such as playing a video game using BCI technology—which some Holland Bloorview patients are already doing—or spelling words.
Over the next 12 months this prototype will move from the research stage into clinical practice, thanks to a generous donation. “The potential for brain-based control is actually huge. We’re just at the tip of the iceberg.”
