Kitchener mom faces decade-long wait for barrier-free housing for son in wheelchair
Rebecca Dooley says she is 'extremely worried' about her continuing ability to care for her son
Each day caring for her 10-year-old wheelchair-bound son is becoming more and more difficult for Kitchener's Rebecca Dooley.
She wants barrier-free housing, but has been told by the Region of Waterloo she's on a wait list and it could take 10 years to get in.
Dooley's son, Noor, has a rare genetic disorder called Hattersley Urano syndrome. He is non-verbal, has minimal vision and suffers from seizures and other conditions as a result of his disease. Noor's disease is neurodegenerative and can lead to multiple disorders as it progresses.
Noor, who is 31 kilograms and continues to grow, requires a wheelchair and needs constant care, like being lifted in and out of bed, or taking a bath — something Dooley does herself.
"It is a struggle every single day," she told CBC News.
Dooley says her current apartment is accessible, but not barrier-free.
Barrier-free housing differs from accessible housing slightly. Barrier-free housing is geared to people in wheelchairs, while accessible housing is geared to people with walkers.
Although the apartment the Dooley's live in has handrails in the bathroom and wider doorways, it does not have a roll-in shower or a ceiling lift to move Noor around. This means Dooley has to lift her son into and out of his wheelchair.
Dooley is a single mom and worries about the physical toll on her body if she keeps carrying Noor as he grows.
"I'm terrified of a catastrophic injury happening to me and not knowing what will happen to him," she said.
Dooley's apartment is also on the fourth floor. She says she worries about the building elevator breaking down, leaving her and Noor stranded.
Dooley's apartment was provided to her by K-W Habilitation, a local non-profit organization.
Ann Bilodeau, the organization's CEO, says modifications to the apartment, like a ceiling lift, were considered, but they were not feasible.
"The structure in the unit is not conducive to being able to have the weight of a ceiling lift," Bilodeau told CBC News.
Families dealing with a terminal illness can get priority for barrier-free housing; however, because of the nature of Noor's disease, Dooley can not get emergency status.
"We don't know Noor's end-of-life time, so we can't sign onto that paper putting us into emergency status for terminal illness," Dooley said.
As the wait for a barrier-free unit drags on, it is becoming more likely that Dooley will have to put her son in a specialized home, which she says would lower her son's level of care.
"I don't think it would be beneficial to him," she said. "Because he is non-verbal, he can't tell you what is wrong; you have to be able to work it out with clues he gives you."
CBC News contacted the Region of Waterloo for comment. The region manages the centralized wait list for barrier-free housing, but an official said they would not discuss specific cases.
According to the region, 60 new accessible units are under construction and 88 more are in the design phase. They did not specify how many would be barrier-free.
Bilodeau says the lack of barrier-free housing is due to its cost.
"There's a huge cost to building a barrier-free unit. You don't get more money because you build a barrier-free unit," she said. "There's no incentive there."
Bilodeau believes it's essential to note that as Canada's population ages, the issue of access to accessible and barrier-free housing will only loom larger.
Edward Faruzel, executive director of K-W AccessAbility, says builders should implement a universal design that considers the needs of those with disabilities for all new homes.
"If they start right from the beginning and plan to make things more user-friendly, it really won't be more expensive," he said.
Faruzel wants people to stop thinking of accessible and barrier-free housing as an issue that only affects people with disabilities. To Faruzel, building more accessible and barrier-free units is about making living conditions easier for everyone.
As for Dooley, she doesn't know how much time she has left with Noor.
"I am scared of what the future holds if we don't get appropriate housing in place as fast as possible," she said. "He is my world."
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