Linking to the future

The LIFEspan clinic helps young adults with neurological and physical challenges transition into adulthood

Kosta Pachneris would love to get his own place. He’s living at home with his family in Markham, Ont. – “It’s a ghost town,” he says – and would prefer to be closer to downtown Toronto and a bit more action. It might even benefit his work as a freelance blogger, content strategist and public speaker.

To plan such a move, Pachneris, who has cerebral palsy, will look for advice, get connected to resources and assess the accessibility of a new home with help from the innovative LIFEspan Clinic – the name stands for Living Independently Fully Engaged. The clinic is a unique collaboration between Toronto Rehab - Rumsey Centre, the KITE Research Institute and Holland Bloorview Kids Rehabilitation Hospital.

Staff at the clinic help young people with cerebral palsy and those with childhood-onset acquired brain injury transition out of the pediatric program at Holland Bloorview and get the support they need to live independently as young adults. 

Children with complex disabilities grow up with comprehensive care that includes physiotherapy, speech therapy, community resources and other family support, but it all stops when youth turn 18. While LIFEspan is generally meant for youth between 14 and 30, there’s a certain amount of wiggle room for those who need assistance into their 30s.

“When I need help, they know what to do,” says Pachneris of LIFEspan. “When you get older, a lot of things disappear, or they’re limited. When you’re in the quote-unquote real world, you’re on your own. You don’t have the same safety net to fall back on.”

Now 33, he’s frequented the clinic since he was a young teen, although these days he’s there to help organize and lead upcoming youth peer initiatives. He’s made use of its range of services, which include nutrition counselling, spasticity and pain management, speech-language therapy, mobility assessment, exercise consultation and counselling.

Clinic staff have counselled him on speaking up for himself and were there to offer guidance when he first attended college at an institution that didn’t always accommodate his needs. More recently, they helped him find a naturopath to deal with an ongoing stomach problem.

A unique model

Dr. Sarah Munce, a scientist with KITE and LIFEspan, whose work has been supported through a generous donation by David and Lynn Coriat to the UHN Foundation, says the program bridges the gap for young adults. “They are coming from the pediatric system, which offers wraparound care, and where they are operating as a unit with their parents or caregivers.” In stark contrast, far fewer services are available for adults, and they’re seldom offered in one place. 

She says many must overcome a range of physical and mental challenges – including post-traumatic stress disorder from enduring medical procedures and pain – and will need help and support throughout their lives. That’s why the program offers services and also encourages patients to learn self-advocacy.

Cerebral palsy is the most common physical disability in children. Meanwhile, acquired brain injury, usually caused by an infection or accident, is the most common cause of death and neurological disability in children. Medical advances and better pediatric programs mean these children now have long lifespans. However, in young adulthood, they visit the doctor, on average, 11.5 times a year.

Importantly, the patients and programs at LIFEspan fuel her research to understand the unique needs of this population.

A study co-authored by Dr. Munce in early 2023 in the Journal of Clinical Medicine found, via interviews, that people with childhood-onset disabilities and their families often felt isolated as they transitioned out of pediatric services. Support from the same caregivers, becoming an advocate for their own care and healthy social networks made the experience better.

Pioneering new programs

Now, Dr. Munce is implementing and evaluating an online peer navigation program for LIFEspan called CONNECT – Compassionate Online Navigation to Enhance Care Transitions – funded by the Canadian Institutes of Health Research. The program has been created using the latest evidence regarding the transition of care from pediatric programs and with insights from patients and families.

“Engaging youth and families in health research is critical,”  she says. (Dr. Munce has a separate grant to develop reporting guidelines for using patients’ input in studies.)

CONNECT will launch in early 2024 and will encourage mentors and mentees to work on short-term goals related to their health, housing, career or anything they like. “They’ll be breaking larger goals into bite-sized chunks,” says Dr. Munce. The hope is that these will be achievable and build a sense of success.

The program will also include a health library with resources such as accessible fitness classes and other community programs.

Dr. Munce is running a pilot evaluation of CONNECT, and participants’ feedback will help refine it further.

Widespread impact

Looking ahead, Dr. Munce would like to collect data to see if LIFEspan and its programs save money and time by reducing healthcare utilization and increasing education levels and participation in the workforce among this population. 

She also believes CONNECT and LIFEspan, in general, could be replicated in other parts of the system. Pediatric programs for a wide range of health conditions, from developmental disabilities to congenital heart diseases, provide comprehensive support that drops away when people get older.

“There is definitely potential to tailor this program for other youth populations,” Dr. Munce notes.

As for Pachneris, he’s grateful for the staff at LIFEspan. He says the clinic has been instrumental to feeling healthy and confident, and to building his ever-growing career – he often speaks about people with disabilities and their potential to overcome obstacles and achieve their goals.

“Without LIFEspan, I’d be dead in the water,” quips Pachneris.


This Is KITE is a storytelling series that aims to excite and inspire audiences as well showcase the Institute’s people, discoveries and impressive range of research. The campaign will feature monthly stories and videos that chronicle key projects under KITE’s three pillars of research: Prevention, Restoration of Function, and Independent Living/Community Integration.