TORONTO, ON (October 15, 2024) – Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) launches an advocacy campaign, “No Piece of Cake” to create awareness around the challenging and complex processes that many young people with disabilities face as they transition to the adult health care system. Many youth, and their families, describe this transition as akin to “falling off a cliff” and a time that can be filled with uncertainty, stress and fear.

In Canada alone, research suggests around 70,000 of these medical transitions occur every year as youth with disabilities and chronic illnesses are forced to navigate a new, more fragmented adult health care system. This transition poses a significant health system-level challenge that can impede the delivery of quality health services resulting in an increase in emergency room visits, hospitalizations, missed appointments and relapses in disease states.

Holland Bloorview believes urgent change is required to improve access and services to support the medical transition from pediatric to adult health care. This includes investment in, and creation of, more collaborative transition clinics equipped with inter-disciplinary teams to support the health and well-being of young adults with disabilities. Through this campaign, Holland Bloorview is challenging Canadians to learn more about this important issue by reading, and sharing, a new report based on a 2024 survey by polling firm Leger that paints a stark picture of the multiple barriers faced by youth during this transition.

According to the survey, when transitioning to the adult healthcare system, young people with disabilities and their families are faced with barriers to access, fragmented health care systems and limited specialists. These challenges are leading to overwhelmingly negative medical, financial, social and psychological impacts. These include:

• two thirds of young adults with disabilities reported their health care needs in the adult system are not being met
• half of young adults with disabilities are still seeing their pediatric providers because they can’t access the care they need in the adult system
• more than one third of young adults with disabilities wait 3+ years to get a family doctor or still don’t have one
• approximately 80% of young adults with disabilities have faced increased medical costs since transitioning from pediatric to adult care – over one third say costs have increased by over $6,000 each year
• nearly 50% of young adults with disabilities have experienced attitudinal barriers when accessing health care including feeling judged, ignored or inferior

“Turning 18 should be a celebration, but for youth with disabilities it signals “aging out” of the pediatric health care system. Medical needs don’t go away at 18,” says Dilshad Kassam-Lallani, nurse practitioner, Holland Bloorview, who works with some of the hospital’s most medically- complex patients including those with spina bifida and spinal cord injuries. “Holland Bloorview has been a leader and a catalyst for change in supporting systems-level solutions—including partnerships with adult health care providers—to support youth in accessing the health care they need as they become adults.”

Seventeen-year-old Joseph, who loves rap and plans to study electrical engineering at university, knows first-hand how overwhelming this transition can be. Joseph has cerebral palsy and uses a power wheelchair and a communication device to speak. He, alongside his parents Carolyn Spahn and Kevin Vieira, are hopeful about the future – but they also worry about how his medical needs will be met in the adult health care system.

“It’s going to be fun [turning 18] but I’m scared about what will happen when I need support,” says Joseph. “If I get hurt will I be able to access physiotherapy? What happens if my communication device stops working?” Carolyn and Kevin add: “We view the medical transition to adulthood as holistic – one that involves body, mind and soul. Joseph’s physical, technological, social and emotional needs are equally important. He, and all young people with disabilities, deserve a seamless transition to the adult health care system that takes into consideration all of the medical, financial, social and attitudinal barriers that stand in the way of his full participation in adult life.”

Holland Bloorview is calling on Canadians to get informed about this issue and share the report with friends and family. Visit www.nopieceofcake.ca to learn more about the campaign and spread the word on social media channels using #NoPieceofCake.

This advocacy campaign builds on the success of our award-winning Dear Everybody campaign that brought widespread attention to the importance of disability inclusion.

About Holland Bloorview Kids Rehabilitation Hospital

Holland Bloorview Kids Rehabilitation Hospital believes in creating a world where all youth and children belong. We are the only children’s rehabilitation hospital in Canada focused on combining world-class care, transformational research, and academic leadership in the field of child and youth rehabilitation and disability. We are a top 40 Canadian research hospital that is fully affiliated with the University of Toronto. Providing both inpatient and outpatient services, Holland Bloorview is renowned for its expertise in co-creating with clients and families to provide exceptional care and is the only organization to ever achieve 100 per cent in three successive quality surveys by Accreditation Canada. Holland Bloorview is a founding member of Kids Health Alliance, a network of partners working to create a high quality, consistent and coordinated approach to pediatric health care that is centred around children, youth and their families. Together we dream big. Together we champion a world of possibility. For more information or to donate, please visit hollandbloorview.ca or connect on X, Facebook, Instagram, LinkedIn and the parent-blog BLOOM.

About the survey

The survey was conducted by the research agency Leger in August 2024 and was completed by 802 respondents in Ontario. The margin of error for the total sample is ±3.46, 19 times out of 20. Research findings and analysis were informed by an advisory group comprised of young adults with lived experience of disability, caregivers of young adults with disabilities and our clinical and programs and services team to better understand their experiences

For media inquiries, please contact:

Erin Pooley
Senior media relations specialist
Holland Bloorview Kids Rehabilitation Hospital
epooley@hollandbloorview.ca
C: 647-406-3567