This Ontarian has been waiting more than 2 years for his broken electric wheelchair to be replaced
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 he froze in a reclined position. The 52-year-old man from Burlington, Ont., Has been trapped.
“I couldn’t go in or out,” he said. “My phone was on my bed. I made it into the bedroom. I rolled backwards and was able to get up halfway out of the chair and call the fire department.”
Brush has been waiting two years for a new chair and cites a tedious bureaucratic process that slows down people in need of assistive devices. He says he speaks for others in his position.
“There are all kinds of people going through this,” he said, and “there’s no one I can blame”.
Brush suffers from Morquio syndrome, a rare metabolic disorder characterized by dwarfism, softer bones and pigeon breast, for example. He is a beneficiary of the Ontario Disability Support Program (ODSP).
That doesn’t stop Brush from playing 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’s crippling”
In 2015, Brush received a new electric wheelchair from Ontario Assistive devices and accessories program (ADP), which helps people pay for wheelchairs and other devices.
He said he usually has to replace it every five years. In 2020, Brush said, it had broken down several times.
He also said he had months of waiting for repairs.
For example, in 2018 it took him from May to October to replace the front wheels of the power wheelchair, so he was deprived of 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 also faced long waits. To get approval for a new seat for her power wheelchair, she needed a physiotherapist to agree that it was necessary.
“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 to get clearance, but still hasn’t heard from them if they have the part to make the fix.
“If it’s broken it’s not just embarrassing,” she said. “It’s crippling.”
The province said service providers don’t always have specialized parts and must order from the manufacturer. There are also global supply chain issues.
Request a new wheelchair
In January 2020, Brush said, he tried to get assessed by an occupational therapist to begin the process of buying a new wheelchair. He applied through ADP and contacted Motion, the sole supplier responsible for his chair.
He said COVID-19 delayed the process until the summer before an ADP representative, a representative from Motion and his occupational therapist brought him a testing chair and completed the paperwork for funding by summer.
Brush needs a custom chair that includes features that ADP doesn’t consider essential. If this is not deemed essential, Brush must pay for it.
For example, a light, a footrest to relieve pressure on his spine, and a function that helps him elevate his seat are not covered.
“It allows me to be a little more independent by reaching for things in the closet and in the fridge and cooking… I also really like this for my social interactions and for sitting in a bar and talking to people in the restaurants. eyes, and to dance ”Brush says of the lift function.
The total cost of the wheelchair is approximately $ 27,000. Brush had to pay about $ 12,000 of that amount he was able to get in fundraisers and donations.
But Brush had to wait until August 2021 – about a year – for Motion to fix the issues with the footrest. There was some uncertainty if the footrest would work as he wanted.
Stuck in a broken wheelchair
It wasn’t until December 2021 that he was able to get the measurements he needed to place his order, but the family illness caused another setback. In the meantime, he uses a personalized manual wheelchair.
Maria Handley, Motion’s central western Ontario regional manager, said in a statement that the company is trying to serve people in the best possible way.
“The process for applying for funding for the purchase of a device (for example, the Assisted Device Program in Ontario) and the process for approving funding for an equipment repair (for example, the Ontario disability support) may vary, ”she said. “But it’s Motion’s role to work with everyone in the circle of care to move the process forward and deliver mobility devices and / or repairs to our mutual customers as quickly as possible.
“For example, Motion maintains an inventory of selected parts required for repairs and works closely with our manufacturing partners for expedited parts delivery.”
Odell said people dread ordering new wheelchairs because of the laborious process and how often wheelchair styles change. She said it took about six months to get a new one, but that was before the pandemic.
The approval process for certain items, like flat tires and batteries, should be speeded up, she said. Companies responsible for wheelchairs should also have these items in stock, and there should be more than one supplier of power wheelchairs, not just Motion, Odell said.
No more waiting and good news
Last week, Brush’s team of workers visited him to confirm the measurements and start ordering his new chair. But he faces more obstacles. The process took so long that he has to reapply to ADP to obtain the necessary funding.
He is also applying to try and cover the costs of the extra features, such as the elevation and the footrest. If ADP refuses to fund it, it will appeal.
It is not known how long it will take to figure out.
The good news is that the province now allows ADP applications online, which would speed up the process.
“As of May 31, 2021, electronic submission has been introduced into the ADP application process and has reduced wait times from six to eight weeks to approximately two weeks so customers can receive their devices faster,” said the Ministry of Health in a press release.
Plus, after waiting since Boxing Day, Brush said, someone was due to arrive on Wednesday to fix his power wheelchair.
“What has 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 one. Medium.”