Family as Faculty lead the way at Holland Bloorview and beyond

She is also one of 17 Holland Bloorview Family Leaders who have completed an innovative training program to become Family as Faculty.

“Clients and families have always shared their lived experiences in activities throughout the hospital, and the idea of Family as Faculty is using that lived experience to advance education for clinicians, students and families,” says Clara Ho, Manager of Client and Family-Centred Care and Partnerships at Holland Bloorview.

As parents of kids with disabilities, or those with direct lived experiences themselves, Family as Faculty are experts in what high-quality client and family-centred care looks like. And the Family as Faculty training course equips family members of kids with disabilities with the skills to share their perspectives in an educational context and help others learn.

The nine-module training program is rooted in client and family-centred care principles, storytelling, and experiential learning. Trained Family as Faculty employ their skills in close partnership with staff and students, and help shape research projects, external partnerships, and more.

And just one year after completing the Family as Faculty training program herself, Adrienne had the chance to co-instruct the next cohort of Family as Faculty.

“I hope that I provided a space for other Family Leaders to feel like there was someone on the teaching staff who had common experiences, and who might understand how teaching and facilitation is different when you come at it with lived experience,” says Adrienne.

And while the Family as Faculty program has its roots at Holland Bloorview, its impact extends far beyond the hospital.

Jean Hammond, Holland Bloorview’s Family Partnerships Specialist and a Family Leader, recalls collaborating with Dr. Keith Adamson, a social work professor at the University of Toronto, to design a disability studies course:

“Keith realized that he shouldn't design a course about people with disabilities without including them, so he invited people from Holland Bloorview, University Health Network, and other organizations to co-create the course,” says Jean. “As the course development went on, we realized that there had to be teachers with lived experience in the room for every class, all class.”

In its first year, Keith taught “Social Work and Disability Practice: A Client and Family-Centred Approach” alongside six Family as Faculty. This year, the course moved online because of COVID-19 restrictions, with more Family as Faculty signing on to co-teach.

“With Family as Faculty, students are introduced to seeing families as educators, rather than the more traditional approach of only seeing staff as educators. This shifts power dynamics and ensures more participatory learning,” says Clara.

For Jean, the impact of learning from those with lived experience of disability is evident from the first day of class.

"We don’t know what experience, if any, these students have with disability, so the opportunity to learn from people with lived experience helps prepare them to support clients with greater confidence and understanding,” she says.

Since the first Family Leaders completed the training program in 2019, the Family as Faculty program has been implemented in 13 different departments. Family as Faculty have also co-facilitated more than 40 different initiatives at Holland Bloorview. From orientation at Play and Learn nursery school, to completing complex paperwork, to helping families navigate the transition to adult care, Family as Faculty are there every step of the way. It was also recognized as a 2021 Leading Practice by Health Standards Organization.

As part of its commitment to family leadership, Holland Bloorview developed an honoraria framework that ensures Family as Faculty are financially recognized for their valuable contributions.

“The dream is to lead social change where family and client voices are truly valued, seen as educators, and empowered as leaders in their communities,” says Clara.

One of the most important parts of the Family as Faculty program at Holland Bloorview is ensuring that Family Leaders feel supported as they share their experiences to help educate others.

To help empower her fellow Family as Faculty, Adrienne co-developed a training module on how to effectively leverage lived experience in a teaching environment. The module encourages Family as Faculty to frequently check in with their emotions, making sure that they feel safe and comfortable sharing their story.

“It’s important to bring your own reality to conversations in the hope of making change for the better,” says Adrienne. “But sometimes there is the need to be able to temper your own emotions so that you don’t get burnt out and you can see the work through.”

And seeing the work through is only the beginning. Now, Holland Bloorview staff and volunteers are planning to help other organizations launch their own Family as Faculty programs. That includes working with Ryerson and McMaster universities to implement Family as Faculty in select workshops, and training volunteers from other hospitals alongside Holland Bloorview Family Leaders.

“You get to meaningful results faster when you're working as partners,” says Adrienne.

For Adrienne, Jean, and their fellow Family Leaders, the best part about the program is how collaboration among clinicians, staff, and people with lived experience lead to new possibilities for kids with disabilities.

“When Family as Faculty work with other caregivers, they establish an immediate, authentic bond. They're parents. They get it,” says Jean. “And for staff, there's no better teacher of client and family-centred care than clients and families themselves.”