This Ontario man has waited over 2 years for his broken electric wheelchair to be replaced

It's been two years since Shawn Brush tried to replace his broken wheelchair, but he's still waiting. The Burlington, Ont., man, who has a rare condition, is among those saying it takes too long to replace and repair electric wheelchairs.

Ontario advocacy group says wait time for fixing, replacing electric wheelchairs is too long

Shawn Brush of Burlington, Ont., says he's waited two years for a new electric wheelchair. (Bobby Hristova/CBC)

It was 4 a.m. on Boxing Day and Shawn Brush was stuck.

He was trying to watch Christmas movies when his electric wheelchair broke again. This time, it froze in a tilted position. The 52-year-old Burlington, Ont., man was trapped.

"I couldn't get in or out," he said. "My phone was on my bed. I managed to get into the bedroom. I drove in backward, and was able to get halfway out of the chair and call the fire department."

Brush has been waiting two years for a new chair, and cites a time-consuming bureaucratic process that slows down people who need assistive devices. He says he's speaking out for others in his position.

"There's all kinds of people going through this," he said, and "there's not one person I can blame."

Brush has Morquio syndrome, a rare, metabolic disorder characterized by dwarfism, softer bones and a pigeon chest, for example. He's an Ontario Disability Support Program (ODSP) recipient.

Brush's current electric wheelchair is missing an arm rest and has no tilt function, and its tires are worn out, among other issues. The fire department had to help him out of his chair on Boxing Day. (Bobby Hristova/CBC)

It doesn't stop Brush from performing music, but he lives with chronic pain and says he's been in and out of a wheelchair for as long as he can remember.

'If it's broken ... it is incapacitating'

In 2015, Brush received a new electric wheelchair through Ontario's Assistive Devices Program (ADP), which helps people pay for wheelchairs and other devices.

He said he generally has to replace it every five years. By 2020, Brush said, it had broken down multiple times.

He also said he has had months-long waits for repairs.

For example, in 2018, it took him from May to October to get the front wheels of the electrical wheelchair replaced, so he was without it for much of that time and had to use alternatives, like a manual wheelchair.

Tracy Odell, president of Citizens With Disabilities Ontario, said she and others have dealt with long waits too. To get approval for new seating for her electric wheelchair, she needed a physiotherapist to agree it was needed.

"Most people in my position, we know what we need. You don't need someone to tell you you've outgrown your shoe," Odell said.

She waited about six months before getting authorization, but still hasn't heard if they have the part needed to make the fix.

"If it's broken, it's not just inconvenient," she said. "It is incapacitating."

The province said service providers don't always have specialized parts and have to order from the manufacturer. There are also global supply-chain issues.

Applying for a new wheelchair

In January 2020, Brush said, he tried getting assessed by an occupational therapist to begin the process for a new wheelchair. He applied through ADP and contacted Motion, the only vendor responsible for his chair. 

He said COVID-19 delayed the process into the summer before an ADP representative, a Motion representative and his occupational therapist brought him a test chair and completed the paperwork for funding by summer.

Brush needs a personalized chair that includes features ADP doesn't consider essential. If it isn't deemed essential, Brush has to pay for it.

For example, a light, a footrest to alleviate the pressure on his spine and a feature that helps him elevate his seat aren't covered.

"It allows me to be a bit more independent by reaching things in the cupboard and the fridge and cooking … I also really enjoy it for my social interaction and to sit at a bar and talk to people in the eye, and for dancing," Brush said of the elevation feature.

The total cost of the wheelchair is roughly $27,000. Brush had to pay about $12,000 of that amount that he was able to get from fundraisers and donations.

But Brush had to wait until August 2021 — about a year — for Motion to sort out issues with the footrest. There was uncertainty if the footrest would work in the way he wanted.

Stuck in a broken wheelchair

It wasn't until December 2021 that he could get the measurements he needed to place his order, but family illness provided another setback. In the meantime, he's using a customized manual wheelchair.

Maria Handley, Motion's Ontario central west regional director, said in a statement that the company tries to serve people in the best way possible.

Brush sits on a customized manual wheelchair as he waits to get his electric wheelchair fixed. (Bobby Hristova/CBC)

"The funding application process for the purchase of a device (e.g. Assisted Devices Program in Ontario) and the funding approval process for an equipment repair (e.g. Ontario Disability Support Program) can vary," she said. "But it is Motion's role to work with all members of the care circle to advance the process and provide mobility devices and/or repairs to our joint clients as quickly as possible.

"For example, Motion retains an inventory of select parts required for repairs as well as works closely with our manufacturer partners for expedited delivery on parts."

Odell said people dread ordering new wheelchairs because of the laborious process and how frequently wheelchair styles change. She said it takes her about six months to get a new one, but that was before the pandemic.

The approval process for some items, like flat tires and batteries, should be expedited, she said. The companies responsible for the wheelchairs should also have those items in stock, and there should be more than one vendor for electric wheelchairs, not just Motion, Odell said.

More waiting and some good news

Last week, Brush's team of workers visited him to confirm the measurements and start to place the order for his new chair. But he faces more hurdles. The process has taken so long, he must reapply to ADP to get necessary funding.

He's also applying to try to cover the costs of added features, such as the elevate and footrest. If ADP refuses to fund it, he'll appeal.

It's unclear how long all of that will take to figure out.

The good news is the province now allows online ADP applications that would expedite the process.

"As of May 31, 2021, eSubmission has been instituted into the ADP application process and has reduced wait times from six to eight weeks to approximately two weeks so clients can receive their devices faster," the Ministry of Health said in a statement.

Also, after waiting since Boxing Day, Brush said, someone was set to arrive on Wednesday to fix his electric wheelchair.

"What needs to happen is change. I'm going to get what I need, one way or another. Going through the frustration of getting it is the problem. There has to be a better way."