“Our brother was 43 years old. He was non-verbal, [with] significant developmental disabilities, ”Khedr told Dr Brian Goldman, moderator of White coat, black art and The dose. Due to restrictions imposed by the COVID-19 pandemic, Farrukh’s family members were unable to be there with him to better explain his needs to staff.
“He went to the hospital for surgery and because there was no one there to defend him there are a lot of little incidents that we believe ultimately deteriorated his health. “
Farruk was discharged from hospital and readmitted several times over the following month. He died on November 27, 2020 from a cardiac arrest.
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Khedr, the national director of the advocacy group for people with disabilities without poverty, is calling for better support for people with disabilities from federal political parties in this election.
“We had some very important promises made by the previous government, and we hope that whoever is elected on September 20 will commit to those promises and honor them,” she said.
Khedr was born with an eye disease called leber congenital amaurosis. While she says she had “a certain functional vision” when she was young, it has gradually deteriorated. Today, at 51, she describes herself “bluntly” as totally blind.
Her sister, Uzma Khan, is visually impaired and their surviving brother, Shah, lives in a long-term care home with a severe developmental disability.
The complex and sometimes contradictory ways in which disabilities are defined in Canada’s health care system meant that Khedr was often unable to access government supports that she said would have helped her – and many others.
“My vision loss will sometimes be classified as a physical disability, when practical, and sometimes [as] sensory, ”she said.
“I didn’t have the right supports to reach my full potential, as far as I’m concerned. “
LISTEN | Dr Brian Goldman speaks with Rabia Khedr and his family
Despite the challenges, however, she managed to plan for a busy life, with a job, a partner, and a family.
But Khedr says many people with disabilities are isolated and most don’t have adequate jobs, so they need a stronger support system.
Khan, who has two young children, one of whom has just entered kindergarten, says a number of programs offer support workers to people with some forms of physical disability, but no vision loss.
This support “would help [my son] reading, writing and coloring, and all that kind of work that involves a lot of visual activity that I might not be able to support it with, ”she said.
Khedr says it’s a godsend that his family members live nearby; her parents live a stone’s throw from her in Mississauga, Ont., and Khan is just a few blocks away. But she notes that many people with disabilities don’t have the luxury of this kind of tight-knit support system.
Complex network of policies
According to Mary Ann McColl, professor at Queen’s University and academic leader of the Canadian Disability Policy Alliance, governments often struggle to develop disability policies because disabilities manifest in “massively heterogeneous ways.”
“Within the federal government alone, there are seven different definitions of disability that we could find,” she explained, including sensory, physical and other disabilities. A person’s disability category will determine what types of support you are eligible and not eligible for.
“One of the things that happens so often with disability policy is that something that benefits one group of people with disabilities may actually disadvantage – or at least not benefit – another group of people with disabilities,” McColl said. .
McColl said there had been some momentum in political action for people with disabilities, but more remained to be done.
She highlighted a number of recent initiatives, including the Accessibility Canada Act, which came into effect in 2019; and the Disability Inclusion Action Plan, although it was dropped thanks to the call for elections.
The Disability Inclusion Action Plan includes a proposal for a National Disability Benefit, which would establish a monthly payment to people whose disabilities have prevented them from working and reaching their full potential.
The Liberal Party says it will reintroduce the bill if it is re-elected to government. The Conservatives say they will double the disability supplement, which exists under the Canada workers benefit, from $ 713 to $ 1,500.
The NDP platform says it will work “immediately” to implement a new national disability benefit, while criticizing the previous Liberal government for not doing so sooner.
The Greens have proposed creating a new Canadian Disability Act which they say would remove “the current confusion resulting from the multiplicity of laws, standards, policies and programs that prevail.”
According to the 2017 Canadian Survey on Disability, more than six million Canadians over the age of 15 identify as having a disability. But in a Angus Reid poll conducted in August, two-thirds of Canadians with disabilities feel that the question of how to best support them does not get enough attention during the federal election campaign.
In the same survey, a third of people with and without disabilities said they did not know which political party would best help people with disabilities.
The online survey included a sample of 2,085 Canadian adult Angus Reid Forum members and was conducted in partnership with the Rick Hansen Foundation.
CBC cannot accurately calculate a margin of error for methodologies with online surveys. For comparison purposes only, a probability sample of the same size would give a margin of error of +/- 2.5%, 19 times out of 20.
The pandemic has increased the barriers
While the COVID-19 pandemic has put incredible strain on the healthcare system, marginalized communities, such as people with disabilities, often feel even more left out.
Khedr felt it as much as anyone, with the loss of his brother last November.
“We have been wronged in this pandemic. We have been forgotten in this pandemic, ”she said.
As personal care workers were forced to reduce the number of homes they could enter to help stop the spread of COVID-19, this typically meant they left people with disabilities behind in favor of customers who could pay. higher tariffs, Khedr said.
People with disabilities and their families may face even greater barriers to care if they come from a marginalized community, be it race, gender or other facets of identity.
“If you are a woman with a disability from a racialized community, you face three levels of barriers to employment, health care, education, and so on. Khan said.
Khedr argues that ‘individualized funding’ is the best solution to help people with disabilities and their own families and circles of support, who know what they need, rather than a labyrinthine system that cannot adequately respond to situations. complex and unique of different people.
“When you put the power in people’s hands to buy their own services, you give them the money they need to buy services. It’s the most effective way to best meet people’s unique needs, ”she said.
His group, Disability Without Poverty, aims to bring together disability advocates across the country to build a unified voice so those in power can hear them. And for the Khedr family, there is no time more critical for this voice to be heard than during an election.
They are in favor of the next government introducing a national disability benefit, regardless of which party holds the reins.
“We are ready to do the work necessary to bring about the change that all people with disabilities in this country need – and we need the government to work with us,” Khedr said.
Written by Jonathan Ore. Produced by Colleen Ross.