According to the 2015 child poverty report for Toronto, newcomer children, children of colour and children with disabilities are among the largest groups living in poverty. Families that fall into more than one of these groups face even more grim circumstances.
Sean Meagher, Executive Director of Social Planning Toronto suggests that immigrants with non-European backgrounds taking care of children born with disabilities face financial crises often.
“English speaking [people], compared to the significant number of immigrants who are not from that background, are successful in getting jobs and we do have a racially segmented employment market [that] people with coloured skin face.”
Sacrificing to take care of family
Those taking care of someone with a disability often relinquish their own plans, as is the case of Ottawa resident Maryem Hashi (name changed for privacy).
Hashi has three younger siblings between the ages of 22 and 26 years old who all have disabilities. She gave up her university studies and a full-time job to fulfill her responsibilities at home.
[I]mmigrants with non-European backgrounds taking care of children born with disabilities face financial crises often.
Hashi, who moved here from Pakistan, recalls her initial days in Canada, when her mother had to face the ordeal of raising her siblings, without much access to Internet. With difficulty in speaking and understanding English, she had to navigate things like funding, health care and programs that suit the needs of her children.
“My siblings didn’t receive any government funds and didn’t go to any specially designed programs to cater to their needs as my parents were not aware that some services were available,” explains Hashi.
Hashi’s siblings have delayed development, which usually starts showing up after a child is two to five years old. It is a “mild” condition that affects their ability to do things “independently.”
“They tend to forget things easily and [have an] inability to do things on a daily basis like managing money, packing a [backpack], remembering directions, etc. and the challenge is to keep them in conversation,” shares Hashi.
Today, Hashi is a program assistant and works part-time in occupational therapy, serving children with disabilities under the age of three to five years old.
What happens after 21 years old?
For Hashi’s siblings, a crucial time came when they each turned 21, as that is the cut-off age for school programming for kids with a disability.
“Due to the lack of government funded after school programs, people with disability after 21 years of age usually stay at home as there is a long waiting [lists] to get into programs suitable to their needs,” says Hashi.
“[P]eople with disability after 21 years of age usually stay at home as there is a long waiting [lists] to get into programs suitable to their needs.”
She says that such programs are a support for caregivers too, and allow the young person not to lose what they have learned from school.
“My siblings [have been] home for a couple of years, and [are] alone with depression and low self esteem; it’s hard to deal with their ordeal,” she shares. “If we take programs privately, it starts at $90 a day, which is unaffordable with multiple siblings [with a] disability.”
Rabia Khedr, executive director of the Canadian Association of Muslims with Disabilities, runs a program in Mississauga, Ont., DEEN (Disability Empowerment Equality Network) support service, which is an extended-hour day program and works on the capacity building of individuals with disabilities who have aged out of school programs.
“It will be an 8 a.m. to 8 p.m. program,” explains Khedr, “and gives enough time range to caregivers – particularly those who are striving to earn.”
The school has a sliding scale fee structure and the rest is fundraised through charitable donations.
In the long run, Khedr is planning a residence service, especially for people with disabilities who do not have caregivers. She shares that in Ontario alone 12,000 people with intellectual disabilities are waiting for housing.
Khedr’s extension of the school in Ottawa, where Hashi will provide some of her services too, is at the initial stage and individuals with disabilities will get three hours of activities on Sunday only starting in the new year.
“[W]e want at least medication to be cost-free for all.”
Making ends meet
Every year on Dec. 3 is the International Day of Persons with Disability. The theme in 2015: Inclusion matters, access and empowerment of people with all abilities.
Still for some, medications, dental care and eye check-ups are not included. And in the cases of people with disabilities things like electronic gadgets, crutches, wheelchairs and scooters to assist in daily life are also not fully covered.
“They have to hire special vans to take these individuals from place to place. This all has a cost,” says Hashi. “And we want at least medication to be cost-free for all.”
Khedr says that people who don’t have the experience of poverty won’t understand how choices can become increasingly limited when a person is on welfare assistance.
She suggests, “The solution lies in a combination of a few hours of activity and government funds.”
Tazeen is based in Mississauga and is a reporter with the New Canadian Media. Back in Pakistan where she comes from, she was a senior producer and editorial head in reputable news channels. She holds a master’s degree in Media and Communication and a certificate in TV program production from Radio Netherlands Training Center.