Leading the way to more meaningful care: Monica’s story
Monica Halsey didn’t plan on becoming an advocate for kids with disabilities and their families—but after noticing the challenges many families face while navigating the healthcare system, she decided to do something about it.
“I want to help fill the gaps in care that people are confronting all the time.”
Monica’s oldest son, Shea, was diagnosed at four years old with Autism Spectrum Disorder (ASD). Following his diagnosis at Holland Bloorview, Shea accessed inclusive and accessible programs at the hospital, including music therapy, swimming and robotics. Now 17, Shea is thriving as a budding advocate—just like his mom.
Monica is one of 80 Family Leaders, a group of volunteers who use their lived experience to partner with teams across the hospital and Bloorview Research Institute (BRI). Family Leaders co-design and improve the quality of care, programs and services at the hospital, and make positive change across the health care system.
“Embedding Family Leaders in all committees and initiatives across the organization from the very beginning allows for the true co-design of solutions that are beneficial to clients, families and the hospital,” says Jean Hammond, Family Partnerships Specialist at Holland Bloorview. “Family Leaders help clinicians, researchers and hospital leadership better understand what matters most to our clients and their families.”
The hospital offers additional training to Family Leaders to bring their lived experience inside and outside of the hospital’s walls. Through the Family as Faculty program, they gain skills and confidence to share their stories and expertise in educational settings, co-teaching staff, students and other family caregivers within Holland Bloorview and across healthcare and higher education.
Clients and families are the experts of their experiences, Monica says, and including family partnership across the hospital is what sets Holland Bloorview apart.
“Including our voices leads to better outcomes and more meaningful care. We're given real opportunities to influence research, policy and clinical care,” Monica says.
As a Family Leader, Monica partners with clinicians and researchers across the hospital and BRI. From influencing research studies, to reviewing the inpatient newsletter with a health literacy lens, to redesigning the hospital’s autism diagnosis process, Monica helps to make sure clients and families feel seen and supported through every part of their healthcare journey.
“When I think of things that I wish I had, I want to help give that to other people to hopefully make their lives easier,” Monica says. “We see the direct correlation from our work to changing people's lives. That's so meaningful for me.”
Monica knows first-hand how stressful the autism assessment and diagnostic process can be—especially considering the long wait-times in Ontario. That’s why she helped create “While We’re Waiting,” a peer support group for families who are waiting for an autism diagnostic assessment for their child.
And, as part of the ASD Pathways redesign committee, Monica is one of many Family Leaders who transformed the autism diagnostic process at Holland Bloorview to help make the process more client and family-centred and strengths-based. With full support from Holland Bloorview, Monica traveled to Newfoundland last fall to co-present “While We’re Waiting” at a Children’s Health Care Canada conference, a life-changing experience that Monica will carry with her always.
Holland Bloorview is a second home for families, Monica says, because it's a place where they feel truly seen, heard and valued. She hopes the hospital’s client and family-centred approach to care becomes the standard across the healthcare system.
“That would mean that families are getting the best care possible—because families are leading the way,” Monica says. “It shows up in every part of the hospital. And we can feel it. Everyone talks about that feeling you've had when you've been a part of Holland Bloorview.”
