Five-year-old Beau starts each day being carried by one of his parents to the family's living room, where his wheelchair awaits in their Beamsville, Ont., home.
Diagnosed with spinal muscular atrophy at 17 months old, Beau is unable to walk independently due to the disease, which damages nerves and leads to severe muscle weakness.
Beau’s day-to-day living comes with barriers most would never think about when raising a child, said his mother, Rachel O’Hagan. The doorways in their home aren’t wide enough for a wheelchair to fit through, meaning Beau has to be carried from room to room, including the bathroom.
He can’t access the sink to wash his hands or brush his teeth on his own, nor reach the light switches. As he gets older, O’Hagan said she and her husband Bryce know these challenges will only compound, especially as he gets too heavy for them to lift.
“These are all things that he absolutely could do on his own if the house could accommodate him,” she said.
“He very much wouldn't need our support ... He could freely move around.”
Amid a housing crisis that has Canadian policymakers and developers scrambling to bolster supply, those living with disability are urging leaders to enshrine accessibility into more newly built homes than the country has historically seen.
“It just really seems like an impossible situation for us, I won't lie,” said O’Hagan.
“We want our son to be able to access everything he needs.”
Beau’s situation mirrors the early life of Tracy Odell, a 66-year-old woman living in Toronto who was born with the same condition.
Growing up, Odell attended what’s now known as Holland Bloorview Kids Rehabilitation Hospital, which she described as “an institution for kids” where they live and receive their schooling.
But when she turned 18 and aged out of the program, her options were scarce.
“A nursing home was accessible, but apartments weren't. Houses weren't built that way. You had to look specifically for an apartment that didn't have stairs in the building and (had) an elevator,” said Odell.
“As far as the design of the apartment, you had to make do.”
Decades later, Odell is struck by how little has changed, calling the accessible housing options available in Canada “deplorable.”
“This is a hugely urgent matter,” said Jutta Treviranus, director of the Inclusive Design Research Centre at OCAD University.
“There's a housing crisis for everyone, but the housing crisis is so much more intense for anyone requiring accessible housing because the lack of supply is exponentially more scarce."
Treviranus said it’s unsurprising Canada lacks sufficient housing to meet the disability community’s needs, considering how infrequently their voices are heard at the decision-making table.
“An accessible home is an adaptive home. It's a home that has choices,” she said.
“There isn't a fixed solution or a singular one-size-fits-all approach to providing accessibility.”
Federal housing advocate Marie-Josée Houle called on Ottawa in her 2022-2023 report to “build accessibility up front” into its National Housing Strategy.
That included recommendations such as ensuring all new government-funded housing units meet a minimum criteria of “visitability” — defined as having a level entrance, wider doorways and hallways, and a wheelchair accessible washroom on the entry-level floor.
All levels of government have a role to play in spurring more accessible housing, whether through changes to building code requirements or financial incentives tied to grants, said Stephanie Cadieux, the federal government’s chief accessibility officer.
Asked if Canada has fallen behind peer countries in that regard, Cadieux acknowledged, “We aren't yet in the lead.”
“We are not building homes that work for everybody. The way we build homes is very much that homes are designed around able-bodied people,” she said in an interview.
“It's important that we start through policy to insist that we are building homes that are adaptable for people's changing needs over time. Ultimately if we do, that will ensure that everyone is able to live where they want to live ... because that supply of housing will exist. It currently doesn't exist.”
Cadieux said there is an enormous opportunity to change the face of accessible housing across Canada at this moment, particularly as the federal government targets 3.87 million new homes by 2031.
“Now's the time,” she said.
“It's proven over and over again that it's far more costly to fix something after the fact when it comes to accessibility than it is to do it at the beginning.”
Studies by the Canada Mortgage and Housing Corp. support that claim. A 2019 comparison conducted by the national housing agency showed it would cost between 185 to 779 per cent more — depending on the housing type — to make an existing Montreal home accessible compared with a new home.
An earlier CMHC report said the construction of an accessible and adaptable new home carried an added cost of just six to 12 per cent compared with standard construction, depending on the model and the city in which the home would be built.
“With our population aging and demand for adaptable and accessible housing on the rise, it is in the housing industry’s best interest to adjust its offering accordingly,” it said.
The Daniels Corp. is a developer in the Greater Toronto Area that has taken up that call through its Accessibility Designed Program. First unveiled in 2017, the builder set out to create accessibly designed homes for people using mobility devices at no additional cost.
The units, available to rent or own, have features such as roll-in showers and roll-out balconies along with accessible common spaces — including lowered concierge desks, accessible kitchens in party rooms and waste chutes with automatic door openers.
Thus far, the developer has completed 38 accessible units, with 124 under construction and another 36 in a pre-construction design phase.
“When we work with our trade contractors and say, ‘This light receptacle and switch should be here as opposed to here,’ there is no cost to that. There is very minimal cost from the very beginning of a project if you are looking at building washrooms in the accessible units that have no tub,” said Heela Omarkhail, Daniels’ vice-president of social impact.
“It was really these types of features and often finishes that we looked at (and said), ‘OK, if we can make some of these enhancements from the very beginning ... rather than trying to bolt it on later, can we be more responsive to the needs of the accessibility community?’”
But Omarkhail acknowledged there is far more work to do on that front. She said there is a gap of accessible units available compared with the needs of Canadians — estimates suggest more than a quarter of whom are living with some form of disability.
“If you look across our market in the GTA or in Canada as a whole, we are not building 15 to 20 per cent of homes with enhanced accessibility features,” she said.
Kate Chung, co-founder of the Accessible Housing Network, worries that “people with disabilities are being totally ignored” in the process.
But she said ongoing efforts to boost Canada’s housing supply could serve as a turning point.
In early 2024, the federal government launched its Housing Design Catalogue program, a reboot of an initiative from the post-Second World War era meant to provide standardized housing designs that reduce the time required for design, approvals and construction.
A government report released in the summer said feedback from stakeholders consistently highlighted that greater accessibility must be an essential feature of the design catalogue.
“The non-profit sector and accessibility advocates reinforced not only the importance of universal design features for addressing the needs of Canadians today but also the growing need as Canada’s population continues to age,” the report said.
Chung said this recommendation, if carefully adopted, could steer Canada’s housing crisis in the right direction.
“Here's an opportunity. You're going to be building all this housing and you have control over the design of the housing,” she said.
“You need to make it all universal design, so anyone of any age or ability can live there and can continue to live there, even if they get hit by a stroke or heart attack, (multiple sclerosis), a truck — whatever happens to them, whether they end up with a permanent disability or a temporary one.”
Today, the Toronto bungalow where Odell lives is imperfect, but good enough to get by, she said. It features a lift to get up the front porch and enter the home, along with a ramp out back built by her husband.
She doesn’t have access to the basement, nor adjustable counters in the kitchen to help her reach.
Her doorways are just wide enough to pass through, although they’re marked with scrapes due to the space constraints of entering a room with the assistance of a wheelchair.
Still, Odell said she’s lucky to have a home in the community that isn’t encumbered by further barriers.
“If I was looking for something else right now, I think that'd be very, very difficult,” she said.
This report by The Canadian Press was first published Dec. 27, 2024.
Sammy Hudes, The Canadian Press
