Without family doctors, disabled Quebecers losing benefits because no one will sign paperwork

Christophe, 53, works at a food bank in the South Shore. He portions out groceries and greets clients at the door by name, which they love.

He also has a serious intellectual disability, even if “you probably wouldn't notice it right away,” said Kim Small, an old friend of his family’s.

“It takes a few minutes,” she said. “He can't read and he can't write and he can't count. And so you're not going to give him $25 to go buy his groceries, because even if he buys [an item] for $5, he'll just leave the 20 because he doesn't know what that means.”

Like other adults in his position, Christophe -- whose family didn’t want his last name published to protect his privacy -- gets social assistance, as long as a doctor signs off every few years to attest to his condition.

That system worked fine when he had a family doctor, but ever since his doctor retired four years ago, those extra minutes it takes to understand Christophe’s disability have been a deal-breaker for doctors in rapid-fire clinics who are meeting him for the first time.

“The doctors, well, they didn't want to sign it because they don't know his case,” said Small.

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If most Quebecers think they have it hard finding a family doctor -- and statistics show they do -- at least they can count themselves lucky that their income doesn’t depend on it.

Christophe is one of thousands of people with lifelong medical problems who risk losing, or have lost, crucial benefits simply because they can’t find a doctor to sign paperwork amid Quebec’s severe shortage of family physicians.

This is particularly true of adults with intellectual disabilities, including autism, but the paperwork problem can also extend to people with “invisible” mental health or neurological problems, or even people with concussions who need time off work.

“The one time that I got a note was when I was at the hospital, which was an 11-hour wait,” said Sarah, age 30, another Montrealer who spent years searching for a family doctor.

“And that was just to simply say that I [had] concussion and that I had gotten into a car accident.”

For doctors, however, deciding whether to sign off on someone’s form a few minutes after meeting them isn’t an easy decision, either. It raises a host of legal and ethical questions.

The stress on everyone involved is so great that the provincial government is considering a fundamental change to its paperwork requirements, at least for adults with intellectual disabilities, like Christophe.

‘EXTREMELY STRESSFUL’

Christophe hasn’t lost his full income so far ($1,400 a month), just his free bus pass, which was worth $104 monthly.

But even that kind of benefit was crucial, says his family. It allowed him to do his “job” at the food bank -- actually an unpaid position -- which kept him busy and in good spirits, while providing a public service.

Christophe’s mother, who’s in her 70s, covered the bus pass for a while, and she also spent countless hours calling clinics and the local CLSC to find a doctor willing to help.

Ultimately, the CLSC suggested going to a private clinic, she said, which the family believed would charge $300 or $400 just to set up a file, let alone give him an appointment.

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The worst part, Small says, is thinking of all the similar Quebecers who have no elderly mother fighting for them.

“I can only imagine the problems that somebody would have -- not good on the computer, not good in social or verbal skills -- in getting these papers,” she said.

“I mean, he can't even read them. So he wouldn’t know, what do you have to do?”

The problem is nationwide and “extremely stressful,” says Bruce Petherick of the organization Autism Canada, though they hear many examples from Quebec.

The situation can be especially hard for people with disabilities who are in their late teens, just making the switch from pediatric to adult care, and without an adult track record of having their disability attested to over several years, he said.

But he doesn't think it's the doctors’ fault, Petherick added.

“Doctors at walk-in clinics, they can’t just sign a form for anyone. They need to make sure that the person needs to actually have the form signed, and that often takes longer than they have,” Petherick said. “So I’m not blaming the doctors in the situation at all.”

DOCTORS FACE STRICT RULES AROUND SIGNING FORMS

He’s right: Quebec’s College of Physicians says that doctors are bound by different sets of ethics rules when asked to sign documents, one of which forbids them to sign documents they aren’t positive are accurate.

On one hand, under their code of ethics they may not refuse to treat a patient because of the paperwork involved, said spokesperson Leslie Labranche.

“For example, a family doctor could not refuse to see a worker who had a work accident on the grounds that there is ‘too much paperwork’ to complete for the CNESST,” Quebec’s work safety board, she explained.

In fact, doctors are bound to fill out any paperwork that their patients need that could entitle them to a benefit, she said -- within 30 days, upon receipt of a written request.

New doctors can also consult a past case file to attest to a condition, even if they weren’t the ones treating it at the time, Labranche said, though these decisions are made on a “case-by-case” basis.

It’s also key, however, that a doctor is never permitted to issue a “certificate of convenience,” she said.

“A physician must refrain from issuing to anyone and for any reason whatsoever a certificate of convenience or written or verbal information that he knows to be erroneous,” she said.

That means that “a walk-in or, for example, a hospital emergency room, does not necessarily lend itself to all requests for completion of forms from ‘orphan patients’ without a family doctor,” she said.

“In some cases, it is still possible for the walk-in doctor to complete the document, in others, not,” she said.

It might depend on the form that needs filling, the “patient’s state of health,” and whether the doctor and patient have met before.

PROVINCE SAYS IT’S TRYING TO REDUCE PAPERWORK, ADD SIGNING OPTIONS

Ghislaine Goulet, who works for the organization CRADI, which works for Quebec adults with intellectual disabilities and autism, says the requirement to renew papers every few years is based on a solid principle: that even people with serious lifelong disabilities can learn new skills over time.

But she, too, is disturbed by how many cases she’s heard of of patients losing benefits through a simple lack of family doctors, let alone the lack of health care that goes along with it.

There’s an easy solution, though, she said.

“Often, these people, these adults, these children are followed by a CIUSSS [health district], by a readaptation centre… within these, there are other professionals who could also attest to the person’s capability level.”

That could include special educators, or other kinds of health-care workers who belong to their own professional orders, she said.

When asked if the province is considering this kind of solution, given the crisis, it said it is -- as well as doing away with some of the more unnecessary forms.

“The [health ministry] is very sensitive to this situation for these people,” said ministry spokesperson Robert Maranda.

“We are carrying out an exercise to target services in the system where the presence of forms to fill out does not add value,” he said.

“As part of this exercise, the multiple forms to be completed by family physicians were noted as an issue in the context where accessibility is difficult.”

The ministry is also working on coming up with a list of other professionals who could fill the void left by family doctors.

“Work is underway to identify a wider variety of health-care professionals responsible for completing the forms,” Maranda said.

For Christophe’s mother, a temporary solution came when she got desperate enough to stop trying official channels at all.

Instead, knowing that a doctor lived on her street -- a neighbour, though one who didn’t know her -- she decided to make her case in person.

“She went and she knocked on the door and explained it, and asked him if he would [help],” said Small.

He was “very nice, and he filled it out,” she said.

“But not everyone has a doctor on their street that they can go ask,” she said. And for Christophe, “that's not helping for next time.”