Long wait for functional wheelchair ends

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This article was published 16/09/2024 (720 days ago), so information in it may no longer be current.

After waiting nearly five years, Tom Landy finally has a functional wheelchair.

He’s taken it for a spin in the garage, but the customized power wheelchair still needs work before it can be operated outdoors.

“I am happy that I am mobile, but it’s still far from over,” Landy said.

On Friday, the 47-year-old Winnipegger was able to properly operate the wheelchair for the first time since he received it in September 2023. It has needed so many adjustments, modifications and repairs. When he tried to steer it a couple of weeks ago, the wheelchair wouldn’t move forward or backward — only left and right — resulting in another call to repair personnel, who arrived Friday afternoon to make another fix. It’s the latest on a long road of delays for Landy, who first spoke publicly about his extraordinarily long wait for a new wheelchair last summer.

“It was also very disappointing and frustrating being so close and then the wheelchair doesn’t even work properly,” he said.

Finally, he’s contemplating a trip to the park or maybe to the zoo — an outing he hasn’t had in years. Before that can happen, the wheelchair’s backrest needs to be customized. As it is, Landy can’t sit in the new chair for very long, and he said the vendor handling the backrest is away for at least two weeks.

“It’s a very long process,” Landy said via text message Friday evening.

Landy has spinal muscular atrophy, a progressive disease that causes degeneration, so he needs a customized sip-and-puff wheelchair. He’s been using power wheelchairs since he was about four years old, but over the years, the wait time to replace them has stretched on. Landy spoke publicly about the long waits he faced since starting the process to replace his existing wheelchair in 2019 and recently detailed his experience in an online post on Manitoba Possible’s website.

Landy has been out twice since March 2020, both times for medical appointments and he hasn’t been able to do any of the things he used to do in his power wheelchair.

“I have been stuck inside and I also have sores on my neck because I am in the same position and place for so long.”

After nearly five years, Landy said he felt trapped. “I feel like I’m in prison or even worse,” he says. “Prisoners get to move around still.”

He was the first of several wheelchair users to speak out in a series of Free Press articles starting in July 2023 about the state of Manitoba’s wheelchair program, which had had no funding increase for 12 years even though demand had surged.

In February, the provincial government announced it would allocate an additional $288,000 to Manitoba Possible to allow the organization to fill wheelchair technician vacancies.

Now, five out of seven wheelchair technician positions have been filled outside of Winnipeg. Two of those new hires are set to start work in Dauphin and Steinbach this week.

A ministerial spokesperson for the families department didn’t comment on Landy’s situation, but wrote in an email the new hires for Manitoba Possible have “dramatically reduced the provincewide backlog, particularly in rural Manitoba” for wheelchair supply and maintenance.

“We will continue to work with our partners across the province on improving access to these necessary services,” the spokesperson stated.

Landy’s experience shows there’s an urgent need to streamline the process for wheelchair users, said David Kron, executive director of the Cerebral Palsy Association of Manitoba.

“It shouldn’t have gotten anywhere close to this,” he said.

“The systems are broken,” Kron added, with so many moving parts and layers of approvals and requirements for people with disabilities. They have to navigate a series of organizations, and each agency has a wait list.

“Part of the problem is, you’re always waiting for the next step,” Kron said. “There’s not a lot of flexibility in the system to say, ‘OK, now how do we get it fixed?’”

Current wait times for wheelchair users to receive a publicly funded wheelchair through Manitoba Possible are approximately two months for a new manual wheelchair and six months for power wheelchairs or complex, specialized wheelchairs such as Landy’s. The wait time for clients who have a wheelchair that needs to be replaced is about six months.

Manitoba Possible CEO Lindsey Cooke said she couldn’t discuss the specifics of Landy’s case, but emphasized that five years is an “unacceptable wait.”

She pointed to a need for innovation in the system and in the way agencies collaborate to provide services for Manitobans with disabilities.

“It’s a complex system and it does leave open the possibility for delays and miscommunications,” Cooke said.

Improving rural wheelchair maintenance service was a top priority and led to Manitoba Possible filling technician positions in Brandon, Dauphin, Steinbach, Selkirk and Morden. The organization is still recruiting for positions in Thompson and Gimli. Since last September, about 5,290 Manitobans have either received a new wheelchair or had one exchanged or repaired via Manitoba Possible.

Demand is also outpacing capacity at Community Therapy Services, which employs occupational therapists to conduct mobility assessments of people with disabilities and issue “wheelchair prescriptions,” among many other responsibilities. Demand for rehabilitation services from the occupational therapists has increased by about 40 per cent over the past decade, said executive director Valentina Cornejo.

The average wait time is about 15 to 17 weeks and more than 500 people are on the wait list.

Cornejo said she couldn’t comment specifically on Landy’s case, but noted: “The processes and system navigation required to get to a completed wheelchair system are fraught with layers of bureaucracy and there is no integrated or co-ordinated funding mechanism available to minimize delays or speed up the process.”

katie.may@freepress.mb.ca

The following video is an American Sign Language translation of this news article recorded by Deaf Centre Manitoba to provide accessible information for the Deaf, Deaf-Blind and Hard-of-Hearing communities.