A mother from Kitchener, who has been waiting for a barrier-free housing unit in the Region of Waterloo for five years, says she has finally found a place but cannot afford it.
Rebecca Dooley requires a larger and more suitable apartment to care for her 11-year-old son, Noor, who suffers from the rare genetic disorder Hattersley-Urano syndrome. Noor is unable to see or speak, has frequent seizures, and relies on a wheelchair. He currently weighs 74 pounds and continues to grow.
He needs help getting in and out of bed and being carried to the bath. Dooley fears that she may soon be unable to lift him and needs a larger space that can fit specialized equipment to assist with his mobility.
“If we don’t have the proper setup for bathing him, an injury almost feels inevitable,” she said.
Barrier-free apartments usually come equipped with features like wide doors, ceiling lifts, and roll-in showers. They are specifically designed for individuals who use wheelchairs as opposed to just being accessible.
WATCH | Kitchener mom on lengthy waitlist for barrier-free housing:
Kitchener mom stuck on wait list for barrier-free housing
Rebecca Dooley cares for her son Noor every day. Noor has a rare genetic disorder known as Hattersley Urano syndrome. He is non-verbal, has limited vision, and uses a wheelchair. Dooley is anxious that if she doesn’t secure barrier-free housing soon, he might have to move into a group home.
“If there’s failure at provincial levels it’s fantastic if municipalities step up; however it’s inefficient requiring numerous local governments trying reinventing accessibility solutions.”
A Builder Steps Up
After learning about the 10-year waitlist in the region, Dooley took matters into her own hands and searched for an apartment herself. She contacted several private builders in the area looking for available units. In June, one builder agreed to include a barrier-free unit for her and Noor in a new development he was planning. Dooley felt overwhelmed with emotion upon receiving this offer. “Joy, relief, so much relief,” she said. “I might be able to care for my child for the rest of his life and not have to send him into a home.” The proposed unit would cost $1,800 per month; however, this represents a significant increase from the $246 she currently pays through the region’s rent-geared-to-income program. Dooley asked if this new apartment could qualify under that program but was informed by the region that it could not. “I’m terrified of what the future holds for both me and my son,” Dooley said.The Region’s Limitations
The Region of Waterloo states that housing subsidies are only available through existing affordable housing options. The region mentioned in an email that its funding programs operate via a centralized waitlist which “does not include special support for people in urgent medical or caregiving circumstances.” The region plans to build two new projects featuring 30 accessible units but did not specify when these would be completed. Currently there are over 800 units within their portfolio that offer some level of accessibility; however, according to Dooley only about 10 to 15 of those would genuinely suit her family’s needs. Lacking financial aid means Dooley can’t afford this new unit. “I’ve thought about fundraising,” she explained. “But that’s just going to be short-term.” The other option would be placing Noor into residential care-which she’d like to avoid at all costs. “He is nonverbal,” she shared. “So much of what I do comes from intuition.” She worries someone else wouldn’t understand his needs like she does.”A Systemic Issue
David Lepofsky heads up the Accessibility Alliance of Ontario Act Alliance notes how Dooley’s situation exemplifies deeper systemic flaws within support structures.“The challenge facing families with disabilities is they find themselves trapped in tangled webs filled with conflicting social supports,”Lepofsky stated.
“It seems like our building codes haven’t evolved much past what was acceptable back in the late 19th century.”
Lepofsky argues Ontario has opportunities under its Accessibility legislation yet hasn’t taken meaningful action towards improvement. He advocates adopting universal design standards considering disabled individuals’ requirements across all newly constructed homes.
If asked whether regional authorities can better assist people like Dooley & Noor-Lepofsky says ultimately it falls on provincial leadership making necessary changes instead.“It seems like our building codes haven’t evolved much past what was acceptable back in the late 19th century.”
“If there’s failure at provincial levels it’s fantastic if municipalities step up; however it’s inefficient requiring numerous local governments trying reinventing accessibility solutions.”
