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The study looks at how early intervention disability services can be made more inclusive
A Ryerson research project headed by early childhood studies professor Kathryn Underwood has become one of the seven innovation projects in the GTA to receive $1.8 million in federal funding.
The Inclusive Early Childhood Service System (IECSS) is a longitudinal study started in 2014, following the experiences of families who have to access different systems and services for children with disabilities.
Earlier this year, IECSS received a federal grant from Employment and Social Development Canada (ESDC) as well as a seven-year partnership grant from the Social Sciences and Humanities Research Council of Canada (SSHRC).
With the ESDC funding, Underwood and her team have been able to create a smaller study that is a part of the larger one called IECSS IN ACTION! The project aims to find tools that frontline staff, who provide services to children with disabilities, can use to cater to them and their families.
With the SSHRC grant they have also been able to form a new Youth Advisory Committee, which is made up of young people who identify as disabled or deaf, among other things.
“The research has the potential to be very significant and to leave a lasting footprint on the field of early childhood disability,” says Fiona Jasmine Moola, assistant professor and research scientist in early childhood studies.
IECSS IN ACTION!
For this particular study, IECSS partnered with seven organizations in British Columbia and Ontario, including the Native Child and Family Services of Toronto and the Family Place in Powell River.
Underwood says it has allowed them to identify structural barriers to inclusion. For example, sometimes families are asked to fill out paperwork, but many of them don’t have the literacy skills to understand the documents.
The organizations IECSS partners with have now included translators as a part of their frontline staff as a result.
Another core finding from this study is that “this system takes a lot of work on behalf of families.” Underwood says. “So while lots of policy-makers sit around and think about how to plan this system they often don’t recognize in that plan the amount of time, the energy, the number of relationships and also the money that it costs a family to interact with this system.”
She says families often don’t get to participate in their own communities because of this.
“Discovering resource needs and experiences in the context of early childhood disability is extremely important,” Moola says.
“I often think of the education and health-care system as a broken puzzle. It can be extremely confusing for children and families to understand how to get the services that they need for their children.”
The larger study is a national project including six other universities, with Ryerson being the lead research partner. They also partner with local community organizations in Toronto, Hamilton and Wellington County, among others.
The study is spread out across urban and rural communities nationwide and Underwood says this shows the vast differences in how disability is defined.
“This tells us what our broader society’s response to impairment is,” she said.“That broader response is a construction of disability. Disability itself gets created in institutional interactions.”
Donna Koller, a professor in the department of early childhood studies, says societal attitudes towards disability can cultivate conditions for social exclusion that alienate children and families from their communities.
The role of inclusivity
The team looks at families from all sorts of backgrounds. Around one-quarter of them are living in “fairly significant poverty.”
“Childhood disability is not a universal phenomena,” says Moola. “A white middle class child with a disability in the GTA will not have the same lived experience as a new refugee child to Canada with disability.”
The research includes Indigenious perspectives as well. Moola has previously worked with the Temiskaming Native Women’s Support Group and the Native Child and Family Services of Toronto, so she invited them to participate in this study.
“It certainly positioned us to have conversations about how our institutions are constructed in ways that perpetuate colonization,” Underwood says.
Her team will be meeting The Elders Council in Kirkland Lake next spring where they hope to engage with policy-makers.
“It really has the potential to innovate and revolutionize how we think about support and services for children and families impacted by early childhood disability,” Moola says.