When Ends Don't Meet is a regular NewmarketToday series highlighting issues of social equity by sharing the stories of community members left struggling to make ends meet during a far-reaching affordability crisis.
When Newmarket’s Brenda Clarke began to use a wheelchair in 2019 as a result of multiple sclerosis, she knew it would be a challenge, but never expected her life to turn out like it has.
On Nov. 5, 2022, her husband left overnight and told her he wouldn’t be coming back. That left Clarke stuck in bed until she was able to call paramedics to get her up.
Stuck alone in her home in Newmarket, Clarke felt helpless and in the short-term, the only way she was able to get out of bed was by calling paramedics to come help her.
Initially, she stayed in the rented home on her own and paramedics would come there three times a day, seven days a week.
“I had no other option,” she said. “I only had two PSWs who would come by during the day.”
Clarke knew the only solution would be getting access to more PSWs and she contacted her case worker at Home and Community Care Support Services begging for more aid. After nearly two months, she was able to get access to five PSWs, while paying for a sixth herself.
While her husband did come back into her life, but not home, rent was no longer being paid for the home. Shortly thereafter, her husband convinced her that her best option to make them a family again would be for her to move into Southlake Residential Care Village.
Southlake Village is a 224-bed home that provides 24-hour-a-day nursing and personal care, with the vast majority of those who stay in the home being older seniors.
She moved in thinking her husband would help pay a portion of the monthly bill, but he left again. She said part of the reason her husband was struggling before he left was due to his mental health, for which she said he tried to get help but that he kept hitting roadblocks.
Clarke, who was just 50 at the time she relocated to the home on March, 8, 2023, has been staying in a private room that costs $2,700 per month. She receives $1,100 per month from her Canada Pension Plan disability benefit and can only afford to pay $1,000 per month, needing to keep the $100 for food and other costs such as transit.
“At this point, I have a bill of $27,000,” she said.
Her only option at this point with Extendicare, which owns the care facility, is to pay her bill or move into a room that would be covered by government funding. That would mean living in a semi-private room separated by a curtain with a shared bathroom, something she doesn’t feel comfortable with.
“I would be living with a senior who is struggling and at a different place than me,” she said. “I don’t even like being here, it’s hard. It’s hard for me to watch them struggle and the lack of privacy with being lifted or changing clothes is distressing.”
Now that she lives in Southlake Village, outside of the support the care home provides her, she only has two volunteers from Margaret Bahen Hospice that come visit and help her each week.
While she is eligible for government funded physiotherapy through the Ontario Disability Support Program, unlike seniors who can receive it more consistently, Clarke isn’t eligible to get physiotherapy frequently enough for it to make a difference.
Clarke said she’s only eligible to receive government-funded physio every six months. When Clarke could afford it, she was going consistently and seeing progress.
“I was literally starting to stand,” said Clarke. “That was my goal, to stand. It doesn’t mean I’ll ever be out of a wheelchair, but I just wanted to be able to stand.”
An increasing issue for Clarke has been transit. Due to her wheelchair, she must use York Region’s paratransit service, which she must book in advance and pay to ride to her destination and back.
It only gives her a finite amount of time to be out in the community with a two-hour window between drop-off and pick-up — or it will cost more. It’s been a challenge for Clarke, who said she needs to get out of the building daily because it’s not good for her mental health to stay cooped up.
But she’s also felt the stress that comes with only being able to leave while adhering to such a structured process. She was once left at the mall by a driver and had no choice but to try to get home on her own one evening — her wheelchair doesn’t fit in the vehicles of most of her friends and family, so transit is her only option to get around.
She took to the sidewalks to traverse the route along Davis Drive from Yonge Street to past Bayview Avenue when she accidentally pulled her wheelchair over in mud and got stuck.
That led to police, ambulance, and the fire department coming to rescue her, as Clarke said her wheelchair weighs more than 600 pounds. Once she got out, she was able to get on a bus to get home.
“I can’t really go out of Newmarket or Aurora,” she said. “If I want to get anywhere else, I have to take several buses, and even then it’s not possible to get a lot of places. It’s ridiculous.”
Clarke said as a disabled person, you have to fight everyday to get what you want and that she has so much she needs to do to get her life right, but that there’s just not enough support.
“Fighting doesn’t always lead to help, but I don’t know what would happen if I just gave up and didn’t fight,” she said.
She said she’s reached out to local government officials to see if there’s more that can be done, but the recommendation always comes back to living in a seniors long-term care facility.
In Markham, March of Dimes has a facility tailored to people living with disabilities, but a facility like that doesn’t exist closer to Newmarket and Clarke wants to remain close by because her son, daughter, and grandchild are in the area.
Clarke says a facility like that is needed in north York Region, an apartment complex for people with disabilities where support workers are available when needed.
“That’s what happens in Markham,” she said. “But here we don’t have anything.”
Last year, the federal government introduced the Canada Disability Benefit Act, Bill C-22. The act is supposed to help provide financial support to those with disabilities, one in four individuals with disabilities are pushed into poverty.
Specifics around the bill, which is expected to come into play later this year, have yet to be made clear, but Clarke isn’t hopeful it will make a difference for her at this point.
“We get bare minimum,” she said. “All I can do is sit here and keep trying.”
