In 2011 Amir Karmali’s son Kaylum was accidently kicked in the head during a soccer game. The next morning he couldn’t walk and was hospitalized. Two days later doctors said Kaylum had suffered a stroke.
“They said they’d never seen that type of soccer injury before,” Amir recalls. “I spent the next eight hours on top of my son’s bed crying and watching him while he slept.”
Kaylum began intensive therapy as a daypatient at Holland Bloorview. But just when he was improving and about to be discharged, Amir was laid off from his job. “I couldn’t make sense of why this had happened to me. First my son getting injured, then being let go from work. I crashed and experienced a lot of stress, anxiety and depression. I googled ‘how to deal with stress and anxiety’ and a few things came up: meditation, exercise, and helping others. I decided there was a greater purpose for me, that if I didn’t use this experience to help others it would never make sense. I needed to help others make change.”
This week Amir was recognized with other Holland Bloorview staff for his role in engaging parents in the creation of clinical simulations that are used every month to train staff and students in client- and family-centered care. The team received one of Ontario’s 20 Faces of Change awards from The Change Foundation for its “patient engagement and family-focused change in the province’s health care system.”
It reflects the critical role Amir has played in building Holland Bloorview’s family leadership program, which he chose to participate in after his son’s accident as a way of giving back.
The family leadership program gives parents a voice on hospital decision-making bodies, as faculty at education events and as mentors to other parents raising kids with disabilities.
Amir joined as a volunteer on our family advisory committee, then applied for a part-time position managing the family leadership program—a radical departure from his background in the restaurant and corporate world.
“I wanted to help people. I didn’t want to let my son’s experience define us in a negative way. I vowed to use it to be a part of making change at Holland Bloorview. Yes, this happened to my son and my family was thrown a curve ball, but I wanted to hit a home run.”
Amir now works full-time as a family-centred care specialist on Holland Bloorview’s family leadership program, which has over 120 client and parents members.
“Family leadership is about family engagement, empowerment and activation,” he says. “It’s the program that brings the families’ perspective, voice and wants and needs into all of our discussions to ensure our programs and services meet their needs.”
Amir’s background in human resources and education gave him the perfect skills for recruiting and training parents, then matching them with projects in the hospital and ensuring that staff know how to “authentically engage our families. We want to know how our family will make a difference. They’re not there as a rubber stamp. I work with staff to define the purpose and goals of the family role and to set clear expectations.”
Amir says the key to the program’s success is making great matches. “We didn’t place families that we didn’t have. We had no problem saying no, we don’t have a family that matches that skill set or has that experience or has used that service. We also ensure that our families are in the right place to give solution-based feedback to the hospital because the program isn’t about advocacy or a place to vent. We want to learn from their good and not so good experiences.”
Amir says Holland Bloorview has invested in family partnership, hiring him full-time, dedicating other resources and changing the culture of how it makes decisions. “Nothing happens in here without the family’s perspective anymore. Staff come to me for family feedback at the conception of an idea, not when they’re about to launch a program.”
Amir says his son Kaylum has recovered and is playing soccer again and thriving. “I had a great support system of family and friends and I couldn’t have kept going without them.”
He hopes his experience finding a new career path encourages other families to find something positive in the challenges their children face. “I knew there was a bigger purpose. I wanted to do something that was bigger than me.”
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