Redefining care through lived experience, disability inclusion and health equity

Based in the Grocery Foundation Family Resource Centre, a serene space tucked away on the main level of the hospital, Family Support Specialists connect families with free resources, workshops, peer networking opportunities, and more.

“We end up being a go-to safe person for families. You have to be a little vulnerable to ask for some of these resources,” says Ishwarya Shankar, who has been a Family Support Specialist for over a year. In her former career as a speech language therapy assistant, Ishwarya found her passion for helping parents and caregivers, leading her to becoming a Family Support Specialist.

After an initial consultation, Family Support Specialists connect families with resources on funding, recreation, respite care, housing, food, newcomer supports and more based on their needs. Every day, they encounter unique situations like helping a parent access respite childcare while they’re going through cancer treatments or finding support for a neurodivergent child whose parents are divorcing. 

“We really rely on each other to be in constant conversation about what it means to be client and family-centred, to be trauma-informed and to be anti-oppressive so that we can keep learning and creating a safer space,” says Stephanie Moynagh, who brings a decade of experience supporting families at a child development center to her role as a Family Support Specialist.

Both Ishwarya and Stephanie strive for health equity. They understand that a variety of non-medical factors—like housing, income, race, geography, and education—can play a significant part in a child’s health outcomes due to biases in our systems and experiences of discrimination. When disability is also present, the impact on health can be disproportionate because of how prevalent ableism is.

To help identify where families need additional support, like housing, food or income supports, Family Support Specialists invite interested families to share whether they are seeking such supports through a social needs screening initiative. Through the Family Navigation Hub, eligible families can access additional supports related to social determinants of health.

As part of the Client and Family Integrated Care team, Ishwarya and Stephanie make sure to put lived experience at the heart of everything they do. That often looks like collaborating closely with Family Leaders at Holland Bloorview to develop resources, co-deliver Parent Support Network events or facilitate health literacy reviews. 

“Because we have resources like Family Leaders, there’s no need to guess if what we’re doing is helping or if we should be doing things differently because we can just lean over and ask,” Ishwarya says. 

For Stephanie, it’s meaningful to support families at Holland Bloorview given her own childhood. As the daughter of a single mom with a disability who lived on a low income, Stephanie knows first-hand some of the barriers many families experience. Many staff are former Holland Bloorview clients or have siblings with disabilities, she says, bringing their lived experience to their role. 

“Centering lived experience is the only way to be effective in our work—otherwise we’re just making assumptions,” Stephanie says. “It’s a dream job to be supporting the whole family, partly from that life experience.”