‘I’ve basically been in this room for 3 1/2 years’: lengthy wait for new wheelchair decried

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This article was published 05/07/2023 (807 days ago), so information in it may no longer be current.

A Winnipeg man is calling out the intolerable wait time for a new wheelchair that has kept him from participating in basic activities.

“I’ve basically been in this room for 3 1/2 years,” said Tom Landy, seated on a couch in his family home.

“I go from here to my bedroom, that’s it,” he added, speaking between drawing breaths from his respirator. “I’m very limited now; I can’t do anything.”

The 46-year-old has spinal muscular atrophy, a progressive disease that causes degeneration. He needs a customized sip-and-puff power wheelchair to get around. The progressive nature of his condition means he needs a new chair every 10 to 12 years or so.

He’s had his current chair for about 15 years, but can no longer sit comfortably in it for more than a couple of hours.

Landy began the process of acquiring a new power chair from Manitoba authorities around summer 2019. He’s still waiting for it. “I think the problem is, the communication is really bad, and there’s too much red tape.”

Landy and his father, Ed, said they understand the COVID-19 pandemic may have caused unforeseen delays in some areas, but they haven’t been given an official explanation for the extraordinarily long wait.

Without a wheelchair that fits him properly, Landy can’t sit outside or at his dining room table, go to the movies, or travel to compete in board game tournaments.

On top of the long wait for a new wheelchair, Landy was without a wheelchair completely for about three weeks last month, after a contractor took his existing chair and returned it late without explanation.

Monique Constant, director of provincial services for Manitoba Possible — the agency funded by the Winnipeg Regional Health Authority and the provincial government to provide wheelchairs — said the delays in this case were caused by a combination of factors, including agencies being short-staffed, the complexities of the customization Landy’s chair required, and back-and-forth communications with several vendors.

“Manitoba Possible is extremely committed to mobility, as it is a human right and we absolutely respect that. I think in this particular case, it was a very complex request that involved multiple players,” she said.

“Does this happen often? No, not at all. Can it happen when it’s a very complex situation and chair and it involves multiple players in the procurement? I think it naturally does. It’s not a one-stop shop.”

The process of getting a new wheelchair requires a referral from an occupational therapist and layers of funding approvals through Manitoba Possible and Community Therapy Services, a private, not-for-profit agency.

After completing all of the necessary assessments, Landy said he was notified in February 2022 his wheelchair application was officially being submitted to Manitoba Possible.

The new chair wasn’t ordered until a year later, after the provincial disability and health supports unit approved additional assistive equipment to go with the chair.

In May 2023, Landy met with a custom-seating contractor for his newly approved power chair and believed he would receive it soon. He is still waiting.

The power chairs cost thousands of dollars; very few Manitobans with disabilities or their families can afford to pay out of pocket, Ed Landy said, so some may be hesitant to speak up about gaps in the system.

“Tom’s real concern is, he’s gone through this, and he’s telling me, like, there’s nothing we can do about what happened to him but he doesn’t want it to happen to somebody else.”

Disability advocate David Kron, executive director of the Cerebral Palsy Association of Manitoba, said the wheelchair acquisition process is too bureaucratic, and needs to be streamlined and properly funded.

While he hadn’t previously heard of a three-year-plus wait, Kron said he’s aware it can take a few months to see an occupational therapist just to kick off the referral process.

“Access to a wheelchair is a human right. If you fall and break your leg, the health system will provide you with a cast. If you need a wheelchair for whatever reason, it should be provided… and it should be timely, because people need to get on with their lives.”

He noted additional hurdles exist for wheelchair users who are Indigenous, because of back-and-forth between the provincial and federal governments.

“It really is a problem; the different service navigation pieces, all the hoops that you have to jump through, all the waiting lists you have to go through, it’s a real, real problem. It should definitely be streamlined.”

Requesting a new wheelchair is typically only supposed to take a few months. There are separate wait lists for people being released from hospital or for emergencies.

In general, Manitoba Possible doesn’t have long wait lists, largely because it recycles and refurbishes wheelchairs beyond their recommended five-year life span, Constant said.

She said the funding provided to Manitoba Possible hasn’t increased in 11 years. The agency has a $1.5-million operating budget and an equipment budget of $1.1 million annually.

It receives approximately 500 more requests per year for new and replacement wheelchairs than it did in 2012. That increase in demand represents nearly double the existing equipment budget, Constant said. “The buying power is far less today than it was 11 years ago.”

A basic power wheelchair costs around $5,000.

Manitoba Possible has asked for its budget to be reviewed, saying funding increases are necessary, particularly to provide equitable rural service.

In 2022-23, Manitoba Possible bought 89 power wheelchairs, compared with 111 in 2012-13. For manual wheelchairs, it purchased 1,890 in 2012-13 and 1,790 last year.

Part of the funding for Manitoba Possible’s program is via the Winnipeg Regional Health Authority.

“The WRHA’s centralized home care program has a service agreement with Manitoba Possible for its wheelchair program. Funding is provided by the Manitoba government through the home care program. The annual budget for wheelchair funding this year is $1,138,655,” a WRHA spokesperson stated.

According to a government spokesperson: “Manitoba Health has not received a funding request from Manitoba Possible… As part of the 2022-23 budget, our government increased ongoing funding to Manitoba Possible by more than $550,000. This increase in funding supports expanded service capacity and reduces wait times in three areas, including the provincial outreach therapy for children, the children’s service co-ordination, and the communication centre for children.”

A representative from Community Therapy Services was not available to respond to a Free Press inquiry prior to publication.

katie.may@winnipegfreepress.com