Quadriplegic Ontario woman considers medically assisted dying because of long ODSP wait times

A quadriplegic woman in Bowmanville, Ont., has applied for medical assistance in dying (MAID), saying it's easier to access than the support services she needs to live her life comfortably.

Rose Finlay, 33, has been a full-time wheelchair user since a diving accident when she was 17.

But for the past year, she says, she's been without the reliable daily support she needs. Without that support, which includes bathroom assistance, she suffers from recurring urinary tract and kidney infections.

"I've been very ill," Finlay said. "I've been bedridden for the last year so my quality of life has significantly decreased."

The single mother of three boys previously supported her family with earnings from disability advocacy work through her company, Inclusive Solutions. That's also how she could afford to hire her own support workers.

But about a year ago, her care workers moved on to other jobs and her health began to decline.

With no other way to earn an income, Finlay applied for the Ontario Disability Support Program (ODSP) and says she was told by a representative over the phone that it would take at least six to eight months to have her application approved.

According to the federal government's website, the approval period for MAID is only 90 days. MAID allows individuals with "grievous and irremediable" medical conditions to end their life with the assistance of a doctor or nurse practitioner. 

"That tells me that our government is not prioritizing the lives of disabled people and that it is easier to let disabled people go than it is to actually give them the assistance that they need," Finlay said.

While waiting to hear about ODSP and faced with the possibility that her recurring infections could lead to further illness, including sepsis, Finlay made the decision to apply for MAID in March. 

"It's not what I want," she said. "But if I don't receive the support that I need, the outcome is the same. If I get to a point where I am really sick and basically terminally ill anyways, I would like to have other options."

Lack of clarity around application review times

Ron Anicich, a spokesperson for the ODSP Action Coalition, told CBC Toronto the organization has heard from a number of Ontarians with disabilities who have considered or applied for MAID because they feel like they're running out of options.

"That's a big problem," he said. "If people are even considering going for MAID because of poor social assistance rates, then that is something that definitely needs to be looked at, that needs to be fixed, that needs to be repaired."

One of the biggest issues applying with ODSP appears to be a lack of clarity around how long it takes for an application to be reviewed, says Anicich.

Finlay filed her application in March of this year but says she hasn't yet heard anything back. Beyond the six- to eight-month timeline given to her over the phone, she says she has no idea how long she'll have to wait. 

In an email exchange with CBC Toronto, the Ministry of Children, Community and Social Services declined to answer questions about how long it typically takes for an ODSP application to be reviewed and whether there is currently a backlog of applications. The provincial government's webpage on social assistance states, "the application process may take a few months."

Wait times can differ from case to case for a variety of reasons, including finding doctors to sign off on the application, Anicich said. But he added that the government has previously provided a timeline to his coalition.

"They're supposed to reach something like 80 per cent of applicants within 30 days and issue a decision, but I'd be very surprised if they were meeting their threshold," he said. 

While Finlay is left waiting, she's also concerned that even when she is approved for ODSP, the income support payments won't be enough for what she needs.

Anonthy Frisina, director of media relations at the Ontario Disability Coalition, also says Finlay is not alone in her concern. 

"We need to double ODSP now so that people like those can get out of legislated poverty and be in more of a position to be able to thrive and the work" he said.

The province's website says ODSP recipients currently receive up to $1,228 a month, but Frisina said that's not enough for most people with disabilities to live on. 

"People with disabilities are being defeated by a government that is not providing us the support that we so desperately need," he said. "And as things like inflation go up and if things like the cost of living goes up, the level of helplessness and homelessness will most certainly increase."

In a statement to CBC Toronto, the Ministry of Children, Community and Social Services said the provincial government has recently increased income support by five percent.

"Future ODSP rates will also be tied to the rate of inflation, with the first adjustment — an increase of 6.5 per cent — taking place in July. This will bring the total increase to almost 12 per cent over the last 12 months," it added.

As for Finlay, in place of income support, she's been trying to raise money on social media to make the move to Toronto, which she says offers more support service agencies, such as Spinal Cord Injury Ontario and the Centre for Independent Living.

If she can make that move, she may not even need to rely on ODSP, she says.

"I'm confident that once I'm in an environment where I can access proper personal support … I'll be able to get back to work and afford the cost of living," Finlay said. "So I'm hopeful."