Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who's also a social worker and University of Toronto professor.
“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview yesterday.
The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.
Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”
The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.
“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who immigrated from Trinidad.
Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.
"It's not just my race,” Sharon said. “It’s also discrimination based on the degree of disability. My older son is quite verbal with social issues, but the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures" and more significant language problems, she said.
“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.
Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism said “just speaking with an accent” can lead to unequal treatment.
“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”
Yana noted that when she immigrated to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”
Gail Jones, director of community support at Kerry’s Place Autism Services, said government-funded services “are not set up for people who don’t speak English or French.”
She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. For example, she told the story of a family that didn’t follow through on behavior strategies they were given for their child.
After a number of staff attempted to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.
“As the parents saw people from their faith community accept this child and the disability, only then could they accept it,” Gail said. “Other professionals might have wrongly labeled the family as non-compliant, instead of being flexible in their understanding and support approach.”
A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses. My child is shy. She’s fine, she’s just afraid to talk to strangers.”
An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.
Many mothers who suspected their child had a developmental issue were not believed, they said, by health and other service providers. Sometimes their parenting skills were faulted.
“It took two years to get a diagnosis,” Yana said. In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”
Many of the mothers became single parents when their husbands left.
In recounting her despair at trying to cope with her childrens’ constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled—” Yana recalled “hitting the bathtub with my hands until they hurt.”
Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said. “Other parents avoid [us] and [my child] becomes invisible.”
Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and their children with disabilities to support, noted that attendance at government-funded ESL programs for adults posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”
Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.
Many were unable to fill out forms or advocate effectively at school meetings because they didn't speak English well enough, and many didn’t have Internet access.
Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”
In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.
The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health. A full report with references will be distributed this summer. To receive a copy, e-mail firstname.lastname@example.org with "Mothers Project Report" as the subject.