From knights to self-advocates: Inside SickKids’ Transition to Adult Care program for youth

Kyle’s funding applications aren’t just forms — they’re dragons. 

Sitting at a round table with his Transition to Adult Care (TAC) program team in The Hospital for Sick Children’s (SickKids) Teen Clinic, 18-year-old Kyle pores over documents with social worker Robyn Lippett and nurse practitioner Karla Wentzel.  

As they chat through his questions about how to “slay” the forms in front of him, which will help him secure funding through the Ontario Disability Support Program, they refer to Kyle as the “sir knight." His eyes light up. 

"It helps thinking of it like a quest," Kyle says. "It makes everything seem a little less overwhelming." 

Framing Kyle's transition as a hero’s journey fits the moment he’s in. Like others in the TAC program, he has complex medical needs that require care beyond 18 – the age when paediatric care typically ends. After five years of treatment for a benign brain tumour and related health challenges, Kyle is preparing to move into adult care with the support of the TAC team.

“The aim is to find ways to remind him he’s not alone in this journey,” says Lippett, who shares Kyle’s love of fantasy. 

For many youth, the shift to adult care feels like stepping into the unknown,  uncertain of what supports await them.  

“We know that youth with complex medical conditions can find the transition to adult care significantly challenging, and knowing how to access necessary resources on the adult side is one of those challenges,” says Wentzel.  

That’s why the TAC program, created in 2023 as a donor-funded initiative, aims to provide an essential bridge between the two fields of care.  Informed by newly established provincial benchmarks for high-quality transitions, the program offers proactive, wrap-around support for SickKids patients that continues beyond age 18.  

“They’re used to a paediatric system where specialists often collaborate in one place and coordinate their appointments, and where they have more time with their care providers in one sitting. In adult care, that looks different,” says Dr. Alene Toulany, Medical Director of SickKids’ Transition to Adult Care Program and Associate Scientist, Child Health Evaluative Sciences (CHES) Program.

By carrying forward the things that characterize the support found in paediatric care — strong relationships, coordinated care, and even Kyle’s love of fantasy — the TAC program helps make the transition feel less like a leap, and more like a guided path forward.

Some individual medical specialties provide this planning for youth moving to adult care within their specific area. But TAC was created to offer a centralized space for youth at SickKids whose care involves multiple specialties, ensuring they have consistent, guided support through every step of the process. 

The program has two integrated arms: one which helps youth build the skills and confidence to manage their own care; the other, which supports youth who will continue to require caregiving throughout adulthood for most aspects of their care needs. This arm is funded through a Canadian Institutes of Health Research (CIHR) grant. 

The initiative also recognizes that health care isn’t the only transition young people are facing at this stage in their lives. Many are navigating other major life changes. 

“As providers, we need to ask: What matters to you right now? How do you define success?” Toulany says. “If a young person is struggling with school, mental health or financial independence, their health-care transition isn’t going to go smoothly. We take a holistic approach.” 

Toulany says this individualized care is an important part of a successful TAC-supported transition. Each patient receives a tailored transition plan based on their personal goals and challenges. 

To help ease the anxiety of navigating a new care environment, for example, Kyle was invited on a personalized tour organized by Wentzel and the Volunteer Services team at St. Michael’s Hospital – Unity Health Toronto, where he would be receiving much of his care moving forward. 

“Personally, I was really worried about leaving SickKids and wondered whether the adult side would be as friendly and welcoming as SickKids. It was a goal for me to get more comfortable with my new care teams,” says Kyle. 

With a list of his new clinics in hand, the Volunteer Services team matched Kyle with a volunteer close to his age. Kyle was guided through the hospital’s key locations, including the clinics he would visit for neurosurgery, endocrinology, ENT, and neuro-ophthalmology care. He also got to visit practical spots like the food court, patient library and emergency department. 

“Everyone I met was nice. I walked into those doors for my first appointments feeling  much more comfortable,” says Kyle. 

The visit was a reminder that care and compassion exist on both sides of the transition from paediatric to adult care. 

Ridvin Xhindoli, who has Menkes Disease, will always require full-time caregiving from his family.  

Ridvin’s mother Knida and his sister Dea know their caregiving roles will only intensify as he moves into the adult system. In Italy, where the family lived before coming to Canada, Knida had to navigate a complex health-care system on her own. 

“For ten years in Italy, everything was on me,” she recalls. “At SickKids, the Complex Care team lifted that weight, showing me what exceptional care looks like. And now the TAC team is giving me the knowledge and tools to take on this new chapter on my own.”

The Transition to Adult Care program helps caregivers like Knida coordinate a patient’s care more actively beyond SickKids’ walls.

“These families have known a system where they have a direct contact – a nurse practitioner and a doctor who knows their child’s history inside and out. In the adult system, they often have to tell their stories over and over, which can be exhausting,” says nurse navigator Susan Miranda, who works closely with Knida on Ridvin’s transition to adult care. 

Miranda and the team work to minimize that burden for Ridvin’s family, ensuring all necessary documentation is prepared in advance, that families connect with appropriate adult health-care providers, and that they are well-equipped to advocate for their child’s needs.

What sets the program apart from other transition to adult care programs is the ability to stay with patients and families like Ridvin’s well beyond the patient’s 18th birthday – bridging a gap where most paediatric systems stop.  

“Most interventions focus solely on our side (paediatrics), and transition readiness.  Remaining involved beyond their graduation from SickKids provides a crucial safety net while they adjust to their new care environment,” says Dr. Eyal Cohen, Principal Investigator of the PITCare study and Program Head of Child Health Evaluative Sciences, and staff physician. 

“This ensures we are working closely with our partners in adult health care so that patients like Ridvin have secure attachments to their providers on the other side, because we’re only one part of the care journey,” says Cohen.

In December, Ridvin’s family returned to SickKids to say goodbye to the Complex Care team, who had cared for Ridvin before his care shifted to the TAC program. 

As Knida and Dea pushed Ridvin’s wheelchair through the Atrium, Knida paused to pull a small blanket from her bag, gently wrapping it around his feet in case they grew cold. She squeezed his hand. Though Ridvin is nonverbal, he grins at her touch – a bright, unmistakable smile. 

For Ridvin’s family, the process is still unfolding, and they have a long way to go. But Knida is hopeful. 

“The Transition to Adult Care team has already helped our family so much. I know we’re going to be okay,” she says. 

As Kyle prepares for the next chapter, he’s proving what the team has always known: youth like him aren’t just patients – they’re protagonists in a story only they can write. 

“It’s not a final chapter,” says Kyle. “It’s the start of new adventures – and I’ll always carry my memories of SickKids with me.”