Growing up is no piece of cake for youth with disabilities

Turning 18 should be a celebration, but for youth with disabilities, it signals aging out of the pediatric health care system, which is anything but sweet. Two-thirds of young adults with disabilities say that the adult health care system is failing to meet their needs. Holland Bloorview Kids Rehabilitation Hospital’s recent report underscores the lived experience of young adults with disabilities and caregivers in Ontario, highlighting the critical gaps in the system and the urgent need for action.

Providing lifelong support

Rachel is a 21-year-old Holland Bloorview alumna whose story with the hospital began when she was just a toddler. From attending nursery to participating in several programs and having most of her health care needs met by the hospital, Rachel grew up with a support system that instilled her with creativity and a profound sense of empowerment.

“I see my disability not as a hindrance to me, but as something that empowers me to keep going,” says Rachel. “That’s really the lesson I’ve taken into the rest of my life.”

But the unfortunate truth is that kids with disabilities grow up with an understanding that our health care system wasn’t built to support them as they become adults. “Growing up, I always saw kids with disabilities, but no one over the age of 16 who wasn’t institutionalized in some way,” Rachel says. “So, as I got older, I got increasingly scared of turning 16.”

Easing the transition of care

Holland Bloorview’s report reveals critical gaps in the adult health care system, with a staggering majority of respondents reporting unmet needs and more than 25 per cent of young adults with disabilities expressing a lack of confidence in health providers’ understanding of their disability.

“The adult health care system is like a shopping mall,” says Rachel. “Except the shopping mall has one store that’s open at weird times and it’s five hours away from your house.”

Young adults like Rachel also experience increased costs related to their medical care. About 70 per cent of young adults with disabilities or their caregivers say their medical expenses have gone up since they transitioned to the adult health care system, with more than a third facing costs over $6,000 annually.

Confidence and self-advocacy are key to navigating this complex and unfair system. For Rachel, these are skills she learned at Holland Bloorview that she continues to apply in her daily life as a student at Carleton University and as a journalist.

“I’ve learned to trust my instincts and be confident in the abilities that I know I have, and to rely on my family, even as I spread my wings,” Rachel says. “I wouldn’t have believed how much happier I am as an adult, and I want other kids to know that.”

Empowering futures

Though the findings in this report 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 health care workforce with specialized knowledge and supporting all dimensions of adulthood, including social, life and job skills. Its vision is to create a seamless health care transition for every young adult with a disability, no matter where they are.

Whether you’re a young adult navigating growing up, a parent or anyone who benefits from the health care system, learn how we can do better for youth with disabilities by reading the report and raising your voice. Visit nopieceofcake.ca to learn more.