Living with both physical and mental health issues for decades has been a challenge for Newmarket resident Kim Egan — which are exacerbated by the meagre disability allowance she receives that has her constantly worrying about affording her bills.
With the $1,288 per month she receives through the Canadian Pension Plan (CPP) disability benefit, the 59-year-old pays for rent, food, utilities and other expenses. Because the federal plan doesn't include medical coverage, she pays an additional $900 yearly, through the Trillium Drug Benefit.
She's grateful to be in subsidized housing, she said, because she's "doing pretty good compared to some people," but it's still difficult to make ends meet.
"Can you imagine somebody else who isn't in subsidized housing? How the hell are they supposed to do it?"
Like 500,000 other Canadians, Egan has fibromyalgia, a condition with symptoms that include widespread pain throughout the body.
According to the Canadian Arthritis Society, 80 to 90 per cent of those suffering from the disorder are women.
Egan, who lives with depression and anxiety, also has diabetes, and she said her physical and mental health has declined with age.
She applied to Ontario Disability Support Program (ODSP) because unlike the federal disability plan, it provides coverage for medication, as well as dental and eye care benefits but just finding out if she was eligible was a difficult, time-consuming and confusing process.
"The government certainly doesn't make any of this easy to figure it out. They don't want people understanding how it works. They don't want to make it easy for people to get on it. . . if it's going to cost them money, they're not going to make it easy for people to understand or get onto it."
In the end, Egan didn't qualify for the provincial plan because her income exceeded the limit by just $5 and the process of looking into coverage and navigating the federal and provincial systems took a toll on her mental health.
"They just made the whole thing so hard. It's hard for somebody like me to have to go through all this stuff, fight for everything. They don't realize how hard it is. . . "You get tired of it. You reach out for help you get put on waitlists for six months... you just get really worn down and tired out."
According to a 2021 Employment and Social Development Canada news release, "Canadians with disabilities are twice as likely to live in poverty than those without disabilities, a situation that has been made even worse by the impacts of the COVID-19 pandemic."
Adding to the anxiety she already has is the rising cost of food. It's got Egan thinking about whether she'll be able to afford her grocery bills.
"Maybe I will need to use a food bank. I leave myself open to that. I'm not too proud to do that if I have to. "
In 2020, the federal government announced its commitment to developing a new Canada Disability Benefit that would provide a guaranteed income to supplement existing federal and provincial benefits.
The benefit was part of the Liberal re-election platform in 2021 but so far, there is no word on when the benefit will be implemented.
In an emailed statement, Minister of Disability Inclusion Carla Qualtrough acknowledged the government's plan to implement the benefit program but did not disclose a timeframe.
"As stated in our platform and my mandate letter, our government will re-introduce and implement the Canada Disability Benefit Act to address the unacceptable levels of poverty amongst working-age Canadians with disabilities. In the spirit of “nothing without us,” we are working. . . to ensure the involvement of persons with disabilities at every stage of the benefit design and development, including the eligibility criteria,” she stated.
"There's a genuine commitment on the minister's behalf," Newmarket - Aurora MP Tony Van Bynen said.
Although the minister's mandate letter requires her to introduce the plan before the House of Commons begins its summer recess, there is no guarantee it will happen by June 2022.
"The short answer. . . is that there's no immediate relief coming. Hopefully in the longer term it will," said Community Legal Clinic of York Region executive director Jeff Schlemmer.
Egan said the prospect of a new benefit plan made her hopeful, particularly after such a difficult two years, but she and others who have been eagerly waiting for news have been left in the dark and "there are too many unknowns."
"Why aren't they putting this information out there and letting people know so people can feel hopeful? We felt ignored and then we heard there was going to be a new disability benefit and then we hear little more about it. . . we just need something to feel that things are going to get better."
During elections or during discussions relating to budgets, promises are made around the topic of families with children or those who are employed but not about those who don't fall into those categories, said Egan.
"I was working too, just because I'm not able to now, does that mean I don't matter anymore?" The government just doesn't seem to care about people with disabilities, she added.
"I would disagree," Van Bynen said. "Getting programs effective and implemented on the ground speaks to the inertia sometimes in large bureaucracies and that is as much a disappointment to me as it is to anyone else but it's very clear there's a need to go forward with that legislation."
Last February, a petition calling on the federal government to fast-track the benefit program was presented in the House of Commons by Kitchener Centre Green Party MP Mike Morrice.
The petition, signed by almost 18,000 Canadians, was drafted by Michelle Hewitt, co-chair of Disability Without Poverty. Forty-three senators co-signed a letter of support for the petition.
Being forced to live on benefits that don't adequately reflect the cost of inflation causes increased stress, said Schlemmer, and makes things more difficult for those with disabilities.
"It's very bad for the disabled folks who we say we have nothing against, but there no reason if you want to keep them down, we didn't used to do that. Ultimately it costs us more as taxpayers at the end of the day to not see them living in as healthy a way as they can and supporting them."
Without the worry about money, she would be able to engage in a few activities that bring her a small measure of enjoyment, Egan said. Being able to actually live and not worry constantly would go a long way to make her "not feel like a second-class citizen."
Everyone should have enough money to pay rent, buy food "and a little more than that," Egan said. "I know there's a lot of people who have it a lot worse than I do. . . I think there needs to be a basic living income that is considered enough money for someone to live comfortably on."
On March 29, the government responded to the petition by saying it supports the Canada Disability Benefit and hopes to move forward as fast as possible.