Turning 18 should be a celebration not a setback for youth with disabilities, report suggests

This article is presented to you by Holland Bloorview Kids Rehabilitation Hospital. The views or opinions expressed do not necessarily reflect those of CityNews and NewsRadio.

When Wesley turned 18, instead of celebrating, they felt terrified. After 18 years of being supported by the same healthcare team, everything changed overnight.

“You’re accessing the same general team of professionals. Then with one birthday, one change, almost all of the contacts had to be swapped over to adult care providers,” says Wesley, who is now in their 20s. “All those relationships you’ve built over 18 years are just gone.”

Wes has cerebral palsy, and since they were 18 months old Holland Bloorview Kids Rehabilitation Hospital provided them with essential services and a community of support that they could depend on.

“I would not be who I am today, have the quality of life that I currently have or be the person I am without Holland Bloorview,” Wesley says.

From being an inpatient following major orthopaedic surgery at nine years old to accessing many of the hospital’s outpatient programs, Wesley’s filled with gratitude for the care they received throughout childhood and adolescence.

But all of that has changed. “My disability hasn’t changed, but now there is no centralized hub,” they explain.  

“The system is not prepared to handle care of the same population. The adult system doesn’t have the capacity or the level of care that is being provided at Holland Bloorview.”

Unfortunately, Wesley’s story isn’t unique. For many young adults with disabilities, turning 18 doesn’t bring excitement: it brings a difficult and sometimes overwhelming transition.

Recently, Holland Bloorview conducted a survey that revealed that two-thirds of young adults with disabilities feel that the adult healthcare system isn’t meeting their needs.

The report also revealed that about half are still seeing their pediatric healthcare providers, including physiotherapists and speech-language pathologists, even after turning 18 because they can’t find the care they need in the adult system. And over a quarter of young adults with disabilities aren’t confident their health care providers understand their disability.

Wesley says, “It’s been a challenging experience to navigate a more fragmented system, both physically and logistically. There’s the medical side of things but there’s also the social side of things.”

And, it’s not just the medical and social – it’s also financial. About 80% of young adults with disabilities or their caregivers say their medical expenses have gone up since transitioning to the adult healthcare system, with more than a third facing costs over $6,000 annually.  

But these aren’t just numbers. There are over 70,000 Canadian youth with disabilities each year who, like Wesley, are making the transition to the adult healthcare system, and are left advocating for the care they need.

Wesley’s reminder hits hard, “We don’t just magically disappear when we turn 18.”

Though these findings are startling, hope is on the horizon and change is already underway.

Holland Bloorview is actively paving a path forward by coordinating care through multidisciplinary transition teams, training a healthcare workforce with specialized knowledge, and supporting all dimensions of adulthood including social, life and job skills. Their vision is to create a seamless healthcare transition for every young adult with a disability, no matter where they are.

Want to be part of the change? Read Holland Bloorview’s full report and learn how you can help advocate for change. Visit nopieceofcake.ca for information on how we can help young adults transition into adulthood with the confidence and the support they deserve.