An Ontario man spent the last months of his life in an ill-fitting wheelchair. Years later, his mother is still demanding oversight

The last nine months of David O’Brien’s life were spent in discomfort and pain, according to his mother, as the wheelchair he had was not yet properly fitted for him. (Courtesy of Laurie O'Brien)

The last nine months of David O’Brien’s life were spent in discomfort and pain as he waited for modifications to a wheelchair that did not comfortably fit him, his mother says.

David had Friedreich's ataxia, a rare genetic disorder, and relied on a power chair since the age of 13. He died in September 2018 after going into cardiac arrest.

“David would literally give you the shirt off his back,” his mother, Kitchener, Ont. resident Laurie O’Brien told CTV News Toronto, recounting a time her son returned home half-clothed after giving his shirt to a stranger in need.

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In March 2018, David’s occupational therapist made a number of recommendations for modifications to David’s wheelchair. The current model no longer fit his needs, his medical records show. In the months prior he had reported growing back pain and had once fallen out completely, citing a broken seat. The needed parts were set to be delivered and installed by Motion LP, the company awarded the sole-source contract to distribute high-technology power wheelchairs in Ontario.

However, David was twice provided with ill-fitting replacement parts, records show.

While the third modification was requested, it was never installed, according to O’Brien. She said the company, which assists clients with distributing power wheelchairs under the Ontario Assistive Devices Program (ADP), also cancelled two appointments to modify the wheelchair to David’s needs in the weeks before her son’s death, prolonging his discomfort.

He never got the needed modifications.

"They didn't come back to finish what they should have,” his mother said.

When reached for comment, Motion extended its “sincerest condolences” to David’s family and friends, but did not respond to specific questions about reasons for the cancelled appointments or delays.

“We strive to ensure an excellent standard of care and we are focused on continually improving our service standards,” CEO Sue Gilpin said in a statement to CTV News Toronto.

The company is committed to providing the “best possible client experience” and welcomes all discussions with stakeholders to better understand their needs, she said.

The level of customer service experienced in her late son’s final months sparked a need in O’Brien to better understand what exactly Ontario’s sole high-tech mobility equipment supplier owed to her son in his last year of life – and to the Ontarians who rely on the program today.

Six years later, she feels no closer to answers.

David O'Brien in his wheelchair. (Courtesy of Laurie O'Brien)

When the bereaved mother first contacted Motion to air her complaints, she wasn’t satisfied. In corresponding with the company about her family’s experience, it first acknowledged it hadn’t been able to provide suitable parts for David, but in a letter sent about six months later, the CEO said, to their knowledge, it had. Further frustrated, O'Brien turned to her locally elected officials and dug deeper for answers. She submitted a freedom of information request to the ministry to obtain the province’s contract with Motion. Through that request, O’Brien obtained a copy of the contract from 2016. In that document, there is nothing that specifies how long Motion must complete service repairs. A section on reporting those times was redacted.

A copy separately obtained by CTV News Toronto was the same.

“A vital service has no oversight. These people, disabled people, are dependent upon these idiots, pardon me, these people for their livelihood and their literal lives in some cases,” O’Brien said.

In an emailed statement, the Ministry of Health, which oversees the ADP, said it had addressed O’Brien’s concerns with Motion, and provided information to both parties on the review of accountability measures already in place.

When reached for comment, Motion did not provide current average length of time it takes to complete repairs, but said, in 2022 and 2023, the average wait for an initial service appointment was just over four days.

After meeting with O’Brien earlier this year, MPP for Kitchener-Centre, Aislinn Clancy implored the Ministry of Health to audit Motion's Kitchener branch in an advocacy letter sent from her office.

"No one should have to wait years to receive a reasonable and compassionate response from the institutions we rely on to keep us and our loved ones safe," Clancy said in an emailed statement.

David (left) at five years old with his mother, Laurie O'Brien (right). (Courtesy of Laurie O'Brien)

In the letter addressed to Health Minister Sylvia Jones, obtained by CTV News Toronto, Clancy encourages the Health Minister to review the guidelines that companies contracted through the ADP operate under to ensure safety.

She also notes that the O'Brien’s are not the only ones to have come forward with their grievances about the vendor in her riding.

Jeff Preston, an associate professor of disability studies at King's College in London, Ont., is also seeking greater transparency around the agreement between the provincial government and Motion.

A client of the ADP himself and long-time advocate, Preston spent years waiting for a replacement wheelchair back when the program was overseen by Shoppers Home Healthcare. Years later, around 2018, Motion announced it would end its overnight emergency repair service in London, sparking him into action.

“It was my understanding at the time that part of the agreement between the government and sole source contractor was that they [the vendor] would ensure repair assistance is available, including an emergency line,” he told CTV News.

To confirm, Preston, like O’Brien, also obtained a copy of the contract through a freedom of information request, but it provided little clarity.

“I received the contract but the part that discusses [service calls] was redacted and it was deemed to be confidential information,” he said.

The service was cut and instead, Motion offered extended hours on certain days to its London clients. Motion’s CEO tells CTV News Toronto it does, however, provide live call answering to handle after-hours requests, which are responded to “upon the start of the next business day.” Urgent requests are given priority, Gilpin noted.

While Preston said his experience with Motion in the years since has been primarily positive, he noted service levels often vary from branch to branch. At the core of the issue, the professor said, is a sole-source contract model “designed to tether disabled people into one specific company.” When businesses are not forced to compete against one another, they can fall into complacency, he added.

“I think it behooves the government not to stifle this industry in the way they are," he said. “What happens when that company starts to make changes that are not necessarily the benefit of the user?”

O'Brien echoed Preston’s concerns surrounding sole-source contracts and said she too wants to see a change in the model.

"There needs to be an oversight body, not associated with the government, to keep on top of the program,” she said.

Throughout the years, her unwavering conviction has been fueled by a belief that David would have wanted her to keep going.

"He always wanted to fight for what was right and would not want us to give up, and it's very funny—it's strange that sometimes when I feel at my lowest, it's almost like he gives me another way, another path."

With files from CTV News Toronto's Abby O'Brien