Tag Archives: Disability

The grief in knowing you’ll one day outlive your primary caregiver as a person with a physical disability

“They’re like a charley horse,” says Rebecca Wilchynski, explaining the involuntary spasms that take hold of her legs — breathtaking and sudden. 

“It’s not just in one muscle, it can be in all the muscles or a few,” she said. “Cerebral palsy, every case is individualized, and there are definitely more severe cases and some that are less severe. I have the less severe.”

Cerebral palsy is a neurological condition affecting body movement and muscle co-ordination, resulting from an injury to the brain. It does not get worse over time, though the exact symptoms can change over a person’s lifetime.

As a result of an injury to the brain, cerebral palsy interferes with messages from the brain to the body, and from the body to the brain.

“It’s very painful. I have spastic … and athetoid [cerberal palsy], which means they move without me wanting them to, so it can make life a little bit interesting.” 


Rebecca Wilchynski, right, pictured with her sister Kim Ewart on her graduation day from UPEI. (Submitted by Kim Ewart)

Support

Wilchynski, 48, has struggled with cerebral palsy from a very young age, a lifelong condition which has changed and evolved just as much as she herself has within that period of time.

As a child, Wilchynski recalls being able to walk around, with only the help of crutches. Now, as her condition has deteriorated over the years, she relies on her motorized wheelchair to perform everyday tasks, like going to the grocery store and trips to the hospital.

She can no longer do all the things she used to, to help me out.— Rebecca Wilchynski

Living with her physical disability has meant that Wilchynski isn’t able to work, and she relies in part on social assistance and disability subsidies to survive.

For much of her life, she’s also relied on the financial, emotional and physical support of her family. Largely coming from her mother, her primary caregiver who has up until recently made daily visits to Wilchynski’s apartment in Charlottetown, where she lives independently. 


Wilchynski says she has struggled and fought to be heard and seen her entire life, as a person living with a physical disability. (Submitted by Kim Ewart)

‘She got sick all of a sudden’

But in March, Wilchynski’s mother, 83, was diagnosed with multiple myeloma, a type of cancer that forms in plasma cells, a kind of white blood cell. She’s been in hospital since March. The family is unsure of when or if she will be able to leave hospital care. For the purposes of this article, Wilchynski’s mother has given consent for her daughter to talk about her medical condition.

The diagnosis has caused the intricately-woven support system Wilchynski and her mother have built over the years to become uncertain and fragile. 

“She got sick all of a sudden,” Wilchynski said. “About three months ago. Her diagnosis says she can live one to three years and if she gets out of the hospital, we’re not sure what that’s going to look like.  


‘People need to think, you know, “If I was 48, would I want to live in a nursing home? Would I want to have to ask for permission to maybe have to go out to the corner store?” says Ewart, Wilchynski’s sister. (Sam Juric/CBC)

“Therefore, she can no longer do all the things she used to, to help me out.”

Wilchynski said her mother’s illness, and the unexpected gap in care, has sparked discussions within her family on whether she should make the move to a long-term care facility to ensure round-the-clock care is available. 

Life has got to get better because my future does not look bright.— Rebecca Wilchynski

In her mother’s absence, Wilchynski has been paying what she can to a friend to provide home care, one hour per day.

“I’m definitely between a rock and a hard place. I can either starve and live independently, or I can give up my independence and wish I was starving,” she said.

“I can roll with the punches but there comes a point where it’s like, ‘OK, that’s enough. Like life has got to get better because my future does not look bright.”

Kim Ewart says watching her sister face a lifetime of barriers has been painful. 

“It has been a real struggle. It’s been a struggle financially and it’s been a struggle with accessibility to basic supports and services that she just needs to just function as an adult trying to live on her own,” she said.  


Wilchynski holds a book of poetry she self-published with her sister Cynthia when she was younger. Copies of the book are in a special collection published by the University of Toronto and Rhode Island University. (Submitted by Kim Ewart)

‘They become invisible’

“Basically what Rebecca and I have noticed over the years is, people with physical disabilities that are not seniors —she’s only 48 years old, trying to live her life — they become invisible.”

Ewart said because many adults living with physical disabilities end up in long-term care to be able to access the care they need, they fade into the background of society, “out of sight, out of mind.”

“Rebecca doesn’t want to live her life like that, she’s too young to be in a nursing home,” she said.

“People need to think, you know, ‘If I was 48, would I want to live in a nursing home? Would I want to have to ask for permission to maybe have to go out to the corner store?”


‘There hasn’t been the outright hatred and abuse toward people with physical disabilities but there’s been a turning of the eye, turning a blind eye toward it,’ Ewart says. (Sam Juric/CBC)

Far from uncommon

Wilchynski’s challenging circumstances are regrettably far from uncommon, said Marcia Carroll, executive director of the P.E.I. Council of People with Disabilities. 

“When it’s the parents that are doing the primary care and those parents pass on it’s extremely difficult for people with disabilities to be able to move forward if there’s been no planning, support and interventions done prior to the caregiver dying,” Carroll said. 

There was a period in the 1960s leading up into the 1970s in Canada, Carroll said, where there was a move toward de-institutionalizing care for people living with disabilities, taking people out of community-care facilities and institutions and integrating them into community. 

It’s staggering, the level of poverty that people with disabilities live in. They are absolutely the poorest people in our communities.— Marcia Carroll, P.E.I. Council of Disabilites

However, government funding soon diminished during the 1980s and the independent living model never developed the way it could have, she said.

Parents then became primary providers of disability-related supports, “as opposed to moving their children through a continuum of care to independence,” Carroll said.

“And so now there’s a number of folks who are in their 50s, they have parents who are in their 80s and both individuals, the parents and the child, are going to have to be looking at some type of long-term care or support to be able to manage.”

Lifetime of extreme poverty

If you’re born with a severe physical disability, Carroll said, the chances that you will live in extreme poverty in Canada is high.

“For instance, if you had a high level of disability and you were living in the community on your own, your income would probably be $ 12,000 a year with some disability-related supports on top of that. But when you live with your parents and you stay with a family member that support becomes even more minimal,” Carroll said.


Marcia Carroll, executive director of P.E.I. Council of People with Disabilities, says there was a period in the 1960s leading up into the 1970s in Canada, where there was a move toward de-institutionalizing care for people living with disabilities, taking people out of community-care facilities and institutions and integrating them into community. (Jessica Doria-Brown/CBC)

“Depending on your needs, your disability-related needs those supports would be paid for, but your income if you’re unable to work or engage in the labour market, your income would probably be $ 250 a month. 

“It’s staggering, the level of poverty that people with disabilities live in. They are absolutely the poorest people in our communities.”

To make sure she can stretch her monthly income, Wilchynski said she keeps a reserve of high protein drinks to ensure that if she can’t make it to the grocery store in her wheelchair because her chair suddenly breaks down, or there’s a snow storm, or money becomes too tight, she can subsist on them for a little while.

It would be nice if my mother knew that I was going to be OK before whatever happens, happens to her.— Rebecca Wilchynski

“You can buy the thing for like $ 11 and sometimes it’s on sale for $ 7 … so you can eat one of those a day and you have all the nutrition you need.” 

Anxiety over her future and the gap her mother will one day leave financially and emotionally is stifling, if she let’s herself think about it. 

“I can’t really go there yet, because I’m still fighting for my life because I want to live independently. I’m not ready to throw in the towel yet, I’m determined to make it and I will,” she said. 


Wilchynski, 48, she says she is too young to move to long-term care. (GagliardiPhotogra/Shutterstock)

“It would be nice if my mother knew that I was going to be OK before whatever happens, happens to her,” she said. “I’m her baby, I’m her last kid and I’m thinking she wants to know that I’m going to be OK.”

It’s just part of that whole issue of human value and worth and the right to live a life that is respected.— Kim Ewart

While the friend who provides Wilchynski with care now is full time, it’s only temporary, Ewart said. Come September, she will return to her substitute teaching job, which will reduce the number of hours she’ll be able to offer. The deadline has Ewart concerned over how her sister will access the care she needs, without giving up her independence.

“The support she would have had has diminished significantly,” Ewart said. “I do what I can but I can’t fill my mom’s shoes.” 

‘Right to live a life’

Ewart said there is a systemic neglect of people living with disabilities that can no longer be ignored.

“I think it’s just part of that whole issue of human value and worth and the right to live a life that is respected,” she said.

“There’s been a turning of the eye, turning a blind eye toward it.” 

Both Wilchynski and Ewart each recall instances of prejudice that have been directed toward the 48-year-old while navigating the world from her motorized wheelchair. From being bullied as a child with disabilities in school, to a lack of understanding from teachers, to being “rammed” into by shopping carts by frustrated people out doing errands. 

‘None of them ever told me I couldn’t do it’

Now, faced with the prospect of perhaps having to surrender her independence and live in a long-term facility, Wilchynski said there’s nothing left to do but to continue to fight for autonomy and visibility, for the kind of world she wants to live in. Today, that means sharing her story.


Rebecca Wilchynski lives independently in an apartment in Charlottetown with her cat Willow. If she can, she would like to keep it that way. (Sam Juric/CBC)

“When I was a kid, my cousins had a tree house that I was determined that I was going to get up to,” she recalls. “I would climb up and it was just boards nailed onto a tree to get up, so I would climb up and get stuck halfway up. And it would be pretty scary … and I would scream and my grandfather or my father or my uncle would come and rescue me.

“None of them ever told me I couldn’t do it. They would just say, ‘Next time dear, let us know so [we’ll] be a little closer, so if you need help we can get to you.

“I never made it up the tree house, but I had fun trying.” 

More from CBC P.E.I.

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Quebec’s COVID-19 triage protocol is discriminatory, disability advocates say

The potential for mistakes and discrimination against people with disabilities is likely if Quebec doesn’t revise its COVID-19 triage protocol, a set of worst-case scenario guidelines designed to help doctors decide which patients get access to critical care beds and ventilators if the health-care system is overwhelmed by cases, advocates warn.

Several of the exclusion criteria — the factors that help a medical team decide which patients are ineligible for life-saving intervention  — are discriminatory, in the view of the Quebec Intellectual Disability Society, an umbrella group representing organizations across the province. 

“It is worrisome that you could be excluding people with disabilities based on a clinical evaluation of the survival of the person, which is not necessarily a good indicator of their real survival chances,” said Samuel Ragot, a policy analyst and adviser for the SQDI.

In addition to excluding patients who have suffered a heart attack or a severe and irreversible neurological event like a stroke, the criteria excludes anyone who has a severe cognitive disability due to a progressive illness that leaves them unable to perform daily activities without help.

People with an advanced and irreversible neuromuscular disease, such as Parkinson’s disease, would also not be entitled to intensive care in the event that there was a shortage of resources, said Ragot.

With a second wave of the virus likely, Ragot said, it’s urgent the province act now and remove any discriminatory criteria.

The SQDI has launched a website, triage.quebec, along with a petition.

So far, nearly 4,800 people have emailed their MNA and the premier to raise their concerns about the protocol.


Samuel Ragot, a policy analyst and advocacy adviser for the Quebec Intellectual Disability Society, said the group has started a petition asking the province to revise the triage protocol and remove any criteria that discriminates against people with disabilities. (Dave St-Amant/CBC)

‘It hit home pretty hard’

Christopher Craig is one of them.

When he read the protocol, he was horrified to see that someone with his son’s level of disability was lumped in with people at the end of their lives or those suffering from a critical illness.

“For us, it hit home pretty hard,” said Craig. “I couldn’t wrap my head around the fact that they were categorizing people with disabilities as lower on the list, in terms of medical treatment.”

Craig’s son, Cameron, 11, has spastic quadriplegic cerebral palsy and a global developmental delay. He cannot walk or speak and needs around-the-clock care.

About a week before the pandemic was declared, Craig said, his son seemed to be having trouble breathing. He didn’t think twice about taking him to the hospital, where they flushed out his nose and helped him to breathe.

He hates to think about what might have happened if the health-care system had been overrun by COVID-19, and the province had triggered its protocol. 

“He wouldn’t have been given help,” Craig said. “He would not have made it.”

He’s worried other parents might be hesitant to seek medical help if they need it.


Craig’s son, Cameron, 11, has spastic quadriplegic cerebral palsy and a global developmental delay. (Carl Mondello/CBC)

Craig doesn’t think society places the same value on the lives of people with disabilities as it does on the able-bodied. As a family, he said, they have to deal with that inequity every day, be it weird looks from people at the mall who are uncomfortable seeing Cameron in his wheelchair or difficulties accessing services and activities.

“To have it articulated that he’s on a list that points out he may be excluded from care because he’s less important? That’s emotional. It’s difficult. It’s hard to even talk about.”

He is angry the protocol was developed without public consultation. 

“That’s a great way of sliding a new rule, protocol or bill in. You do it quickly, you do it without much fanfare and you hope it slides by without much uproar or conversation,” said Craig. “I think it’s underhanded.”

After repeatedly asking the Ministry of Health for details about the protocol, the SQDI only got a look when the document was leaked by a third party. 

CBC News viewed a webinar given by the authors of the Quebec protocol, where they explained it in detail, including the exclusion criteria.

“If you have to decide who is going to live and who is going to die or not have the full care, you should have a public debate about what criteria you’re going to use,” said Ragot.

A week to make a plan

When the triage protocol was drafted, health-care officials in Quebec wanted to avoid the heartbreaking, life-or-death decisions many doctors in Italy, and later, New York, were being forced to make when they had to ration care and equipment.

“It was an emergency,” said Marie-Eve Bouthillier, a professor of clinical ethics in the faculty of medicine at the Université de Montréal. “You have to remember that at the end of March, the situation was critical, and it was expected we’d have a peak around the beginning of April.”

The province tasked Bouthillier with coming up with a plan and gave her one week to do it.

Quickly, she gathered together a working group of more than 40 experts, including intensive-care specialists, emergency physicians, nurses, lawyers, ethicists and patients.

With their input and after a review of scientific data and protocols in different countries, that protocol was drawn up by March 25. By the beginning of April, it was sent to institutions and shared with 10,000 physicians across Quebec.

“A triage protocol is to prepare for a catastrophe. You only use it in an emergency, as a last resort. You don’t use that if the resources are still available,” Bouthillier said.

Safeguards in place, says ICU doctor

Dr. Joseph Dahine, an intensive-care specialist at Laval’s Cité de la Santé who was part of Bouthillier’s working group, said in considering that protocol, it’s important to look at the consequences of COVID-19 on the physiology of patients and the impact of prolonged mechanical ventilation.


Dr. Joseph Dahine, an intensive-care specialist at Laval’s Cité de la Santé, said under the triage protocol, five people must assess any decision not to intubate a patient whose chances of survival are deemed slim. (Submitted by Joseph Dahine)

A mild cognitive impairment would not be an exclusion criteria, Dahine said, but if that impairment is so severe that a patient doesn’t understand what’s going on around them or can’t follow instructions from medical staff to help their body recover when the tube is removed, it could make it difficult for the patient to be weaned off a ventilator, he said.

“It’s a medical decision. It’s not at all a decision based on the value of the life of someone living with cognitive impairment or any other physical disability,” said Dahine.

Dahine understands why groups like the SQDI are upset and worried, but he said it would be wrong for physicians to offer treatment that could result in two or three weeks of suffering and, in the end, still result in a patient’s death.

He said the goal of the protocol is to ensure consistent, predictable guidelines, and there are safeguards in place to avoid mistakes. Under the protocol, at least five people must have assessed a decision not to intubate a patient.

“If there are resources for everyone, perfect. But if there’s a lack of resources, then it’s in the order of who has the worst prognosis, who has the best chance,” he said.

Bouthillier said she has asked the Quebec Health Ministry to post the protocol on its website this week.

Based on some of the simulations that were done during the pandemic, revisions to the protocol will be made during the summer.

Her committee also plans to work with the L’Office des personnes handicapées du Québec to put information online that explains the triage protocol more clearly.

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How Canada’s broken disability support system is needlessly costing millions, harming mental health

This column is an opinion by Dr. Pamela Valentine, president and CEO of the Multiple Sclerosis Society of Canada. For more information about CBC’s Opinion section, please see the FAQ.

Imagine having a condition that prevents you from working and doing the things you love. Sometimes.

Now imagine a disability system that’s like a light switch: Either you’re disabled (on) and you qualify for support, or you’re fully abled (off), and you don’t. There’s nothing in between.

If you don’t fall into either of those categories, you fall through the cracks in our health and social support systems. That’s the reality for hundreds of thousands of Canadians right now.

As we look at ways to better serve Canadians in need of support, an obvious problem is emerging that too few people are talking about – this “on or off” system that is not meeting citizens needs, and which creates inefficiencies that cost millions of dollars.

The end result: A broken disability system where Canadians are deprived of their livelihoods, and often suffer detrimental effects to their mental health.

During the federal election campaign, Canadians discussed various aspects of our health and social safety systems. Policy improvements were addressed by political parties, and Canadians engaged with real policy needs. These conversations are crucial, but now we need government action.

Episodic disabilities

The heart of the problem is that our disability, income, and employment programs don’t recognize “episodic disabilities.”

These are defined in a recent House of Commons report as “medical conditions or diseases that are prolonged and often lifelong, but have unpredictable episodes of illness and disability. These episodes of disability can vary in severity and duration, and are often followed by periods of wellness.”


Canada’s broken support system for people with disabilities is depriving people of their livelihoods, says Dr. Pamela Valentine. (City of Hamilton)

The report says 1.6 million Canadians self-report as having an episodic disability.

This is true for Canadians living with multiple sclerosis (MS), numerous cancers, diabetes, acute arthritis, inflammatory bowel disease, mental health conditions, HIV, epilepsy, migraine, Hepatitis C, chronic fatigue, chronic pain, cystic fibrosis, rare diseases, and a range of other conditions.

These episodic disabilities are creating issues beyond the health care system.

Employment Insurance (EI), for example — part of Canada’s disability support system — ends up being a tragic Catch-22. If you have a condition that sometimes prevents you from being able to work (because of periodic flare-ups or temporary debilitation) – yet you’re fully able to work 70 or 80 per cent of the time – you have to stay off your job entirely in order to get the disability or income support for the times you need it.

For some, it may be a day or two per week when their acute migraine gets in the way of their ability to work. For others, it could be three months in a year when their MS symptoms become more pronounced, or they require a period of hospitalization before returning to wellness.

The result?

Approximately 350,000 Canadians are presently not employed but want to work, according to the parliamentary report – they must choose whether to be fully in the workforce, or entirely drop out of it.

The false black-or-white choice and the ramifications it has for support means almost all drop out.

Enormous costs


Unnecessarily pulling Canadians with MS out of the workforce results in a productivity loss of $ 1.1 billion per year, according to a Conference Board of Canada study. (CBC)

The economic impact is staggering.

A 2018 study by the Conference Board of Canada found the productivity loss of unnecessarily pulling Canadians with MS out of the workforce, for example, is in the order of $ 1.1 billion per year.

On an individualized level, this means loss of income and often a mental health or self-esteem impact.

For employers, it means an avoidable loss of skills and experience, and unnecessary rehiring and retraining.

This also amounts to a much more expensive EI system that is paying out benefits to people who can work and want to – but aren’t allowed to unless they want to risk not being able to get benefits when they need them.

And there’s a gender dimension: 55 per cent of working-age Canadians living with disability are women. With MS, for example, women are three times more likely to be diagnosed than men. So the flaws in our system are hurting women disproportionately.  

First and foremost, EI needs to recognize not all disabilities and illnesses are the same.

Flexible access, allowing people to maintain partial employment and partial coverage, would allow Canadians to stay in the workforce when they can and access support when they need it.

Other supports outside of EI – the Disability Tax Credit, Canada Pension Plan Disability Benefits and the Registered Disability Savings Plan – need to make similar changes to become more flexible.

In the aftermath of the election, as the federal government defines its program, let’s focus on where we can make a real difference in people’s lives: improving their financial and mental well-being, while also reducing costs to the system.

In classic Canadian fashion, we can forge an even better social and disability support system by pausing, reflecting, and innovating – and staying true to our compassionate roots. 


  • This column is part of CBC’s Opinion section. For more information about this section, please read our FAQ.

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Sask. man with cerebral palsy says government social worker suggested divorce to restore disability payments

A Saskatoon man, who lost his provincial disability payments when his wife became eligible for a federal pension and benefit, says a government social worker suggested he get a divorce to restore his payments — something the Saskatchewan Ministry of Social Services says is against policy. 

Allen Hall is appealing to Social Services Minister Paul Merriman to intervene in his case, saying he and his wife have fallen into a loophole that has left their household short around $ 800 per month. The minister declined to comment citing privacy reasons.

Hall and his wife Marianne are both in wheelchairs because they have cerebral palsy. 

He said his payments under the Saskatchewan Assured Income for Disabilities (SAID) program were cut in September after his wife turned 65, when she switched to a national pension plan. 

But Hall, who is 56, will not be eligible for a pension for another nine years. He said he will be eligible for spousal payments through his wife’s pension plan when he turns 60.


Hall says he believes fewer couples with disabilities get married because of complications with their benefits. (Chanss Lagaden/CBC)

“My disability is still the same. My age doesn’t qualify me for anything under the federal system, so they’re basically telling me for the next four years you have to live on the good graces of your wife,” said Hall. 

Hall was receiving about $ 660 a month from the SAID program, while Marianne was receiving about $ 1,100 a month from SAID. They also received an allowance from the province for water and electricity bills.   

She [social worker] made a suggestion that I get a divorce just so I can stay on the SAID program.​– Allen Hall, Saskatoon resident

Hall said he was cut from the program in late September when Marianne turned 65 and began getting the Old Age Security pension and Guaranteed Income Supplement benefit.

Her total monthly payment through the pension is now about $ 240 less for the household. With Hall cut off too, they will not receive help from the province for power and water bills. Hall expects they will be about $ 800 shorter per month than when he was on SAID. 

“I’m expected to live with nothing, nothing, no money for myself, no money to pay the bills,” he said.

On Sept. 1, 2017, the Ministry of Social Services stopped providing SAID payments for anyone who starts receiving payments through the Old Age Security and Guaranteed Income Supplement programs.  

SAID recipients have previously raised concerns about the change. In 2018, another Saskatoon couple said it would leave them with about $ 1,000 less per month. They feared it could leave them homeless and unable to pay their medical bills when they turn 65. 

Hall said the same policy has been unfairly applied to him long before he is old enough for federal pension payments. He said he won’t be eligible for a spousal allowance through Marianne’s programs for another four years. 

He said a social worker at the Ministry of Social Services suggested that the couple get a divorce so he could stay on the SAID program. 

“I am Roman Catholic and under the rules of our church, if you divorce, you can’t even receive the holy sacrament. Once you break one of their sacraments, which marriage is … it’s not an option,” Hall said.  

The ministry said it is not its policy to advise clients on changes in marital status.

Hall believes situations like his are one reason people with disabilities do not marry as often — because of the “paperwork snafu.”

He appealed to the minister to intervene, investigate his case and revisit the legislation. 

“What would you do if you were in a wheelchair and forced through no fault of your own to live with … less and not have anything to live on, to feel like you had dignity, which is what the SAID program was set up to do — to provide dignity and respect to those people living with a disability,” Hall said. 

No comment

A statement from the ministry said it cannot comment on Hall’s case — or the issue of spouses of pension recipients losing their SAID payments — for privacy reasons. 

“Under SAID regulations, income is to be deducted from benefits unless the income is specifically exempted in the regulations,” said Jeff Redekop, executive director of the ministry’s Income Assistance Service Delivery in a written response to questions. 

“Payments such as Old Age Security or Guaranteed Income Supplement that are intended to pay for the same basic needs as provincial income support programs are not exempted. When non-exempted income is received, SAID benefit amounts are adjusted commensurate with the amount of income received.”

Redekop said the overall amount of income a person or family receives each month should remain about the same under the process, as long as there are no other changes to eligibility such as a change in family size.

Planning to appeal decision

“Provincial income support programs are ‘last resort’ programs, and by design do not duplicate benefits paid by other programs for the same purpose,” said Redekop. 

“The Ministry is unable to provide you with additional policy information pertaining to the removal of an individual from an income assistance program due to a person’s spouse transitioning to federal pension benefit programs because we do not have a policy of this nature.

“The Ministry is only concerned with the federal pension benefit to the extent that it would have an impact on the budget deficit calculation for a family.”

In June, Hall tried to appeal the decision but said he was asked to wait because Social Services was going through program changes. 

Now, he is waiting for a written confirmation of the ministry’s decision before he launches his appeal, but said he is already behind in his bill payments because of the loss of income. 

He said he has spoken to a lawyer and plans to apply for a court injunction to try to force the province to continue his payments while the appeal is in process.

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What you need to know if you have a disability and want to vote

If you’re one of the six million or so Canadians who identify as having at least one disability, there are new tools and services available to help you vote.

Many were developed with the input and experience of an advisory group struck in 2014 specifically to address some of the biggest obstacles people with different abilities face when they go to cast a ballot.

Some of the tools and measures are being used in an election for the first time.

Here’s a guide to what’s available:

Polling stations

Whether you use a wheelchair or a cane or other form of assistance to get around, you should be able to easily access your polling station. There are specific accessibility criteria laid out by Elections Canada — including some that are mandatory.

For example, if there are stairs, there needs to be a ramp that is wide enough to accommodate a wheelchair or scooter. Doors need to be easy to open. And the actual room where you vote needs to be on the same level as the entrance. 

Jewelles Smith, who is part of the Advisory Group for Disability Issues (AGDI), which has been working with Elections Canada, said it goes beyond just being able to get in the polling station door. 

For those in a wheelchair, access can mean “not having things so high that you can’t reach to make your mark,” she said. Making sure your ballot doesn’t slip while using the braille reader, or that the pencils are the right size are also important.

“The pencils were really terrible previously,” Smith said. The first new batch wasn’t much better either. “So Elections Canada went back, got different pencils, and then we trialled them again.” 

The result? Better grip, making the ability to mark the ballot easier. It makes a difference, Smith said. 

But it’s not just about the tools. It also matters how polling station staff is trained, Smith said. “Don’t assume what somebody needs by looking at them. Ask ‘what can I do to assist you to vote?'”

The ballot

The ballot itself has changed since 2015 to accommodate larger text. It’s also been optimized to be read by screen readers. And visually impaired Canadians can bring their own communication device or screen reader to use behind the voting screen. 

One recommendation of the AGDI was to also put photos of each candidate beside their name. According to Elections Canada, doing so would require a change by Parliament to the Elections Act. 

What else is there for people who are visually impaired?

Whether you are voting in advance or on election day, these tools and services are available:

  • magnifiers with light (4x)
  • a tactile and braille voting template
  • large-print lists of candidates
  • braille lists of candidates (available on election day only)
  • voting screens that let in more light
  • large pencils

John Rae, who lives in Toronto and is blind, wants further choices — such as voting by phone or electronically. “Any of these options would make it possible to vote independently and verify independently in secret.”

Smith said privacy and independence are also important to the AGDI and it continues to push Elections Canada in that direction. 

What if I use sign language?

Elections Canada will ensure there is someone who can translate to American Sign Language or Langue des signes québécoise available when you go to vote.

The voter information card that you receive in the mail has information on how to request the service ahead of election day. 

Can I bring someone to help me vote?

Yes. Elections Canada allows Canadians to bring someone to the polling station to help them mark their ballot. That can be your spouse, your friend, or your personal support worker. That person is even allowed to help another voter if the need arises. 

The assistant needs to be at least 18 years old — but does not even need to be eligible to vote themselves. They simply need to make a solemn declaration that they will respect the secrecy of your vote.

What if I can’t get to the polling station?

There is always an option to vote by mail or go to any Elections Canada office before election day to cast a ballot. 

And if you live in a long-term care home or a hospital, you can likely vote there. Elections Canada has mobile voting stations, and they can even bring the ballot box from room to room if patients are confined to bed. 

But for people who simply can’t leave their private home to vote, like Susan Stenson of Red Deer, Alta., there is another, little-known option. 

She asked Elections Canada to come to her. After several weeks of back and forth, and help from a local candidate, the agency agreed. They sent a returning officer to Stenson’s home and she voted “with no problem.”

“There are so many potential voters who don’t get to exercise their right because they don’t even know they have the right.” 

“I didn’t give up.” 

That’s voting. What about a more accessible campaign?

Smith said there have been a couple of significant changes made for 2019, again, on the recommendation of the AGDI. 

Candidates who incur additional costs to make their local events or meetings fully accessible — including providing sign language translation — can have 90 per cent of the costs reimbursed, up to a maximum of $ 5,000. 

“We also pushed so that more people with disabilities could actually run as candidates,” Smith said. As a result, Elections Canada will also reimburse any extra costs associated with being a candidate with a disability.

And debates? 

The two official debates on Oct. 7 and 8 will have closed captioning, described video, and sign language translation — American Sign Language for the English debate, and Langue des signes québécoise for the French. 

But Rae, who is also on the Canadian Council of Canadians for Disabilities, points to a persistent failing. “We have never to my knowledge had a question about a disability issue asked during the debates.” He’s hopeful that, too, will change. 

The Accessible Canada Act

Finally, some of our readers have wondered whether this new law will affect elections. Short answer is — maybe. 

The Accessible Canada Act was just passed in late June. Before any changes to elections are made because of it, a few things have to happen first.

First, the Canadian Accessibility Standards Development Organization has to be created and the government has to pass regulations establishing standards in the areas covered by the Accessible Canada Act, including Elections Canada. 

Once those regulations are law, Elections Canada says it will have one year to prepare a compliance report setting out whether it meets the standards set out in regulation. If it doesn’t, it has to come up with a plan to achieve compliance. 

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CRA moves to slash ‘excessive’ fees charged by disability tax credit companies

The Canada Revenue Agency is proposing to dramatically slash what it calls “excessive” fees some companies charge to help Canadians apply for the disability tax credit, nearly five years after it was told to do so.

The move, which according to the CRA could put millions of dollars back in the hands of disabled people, is being applauded by some advocates, but panned by companies that last year collected up to $ 25 million in fees.

“The government of Canada decided that measures were needed to protect Canadians living with disabilities and their supporting family members from being charged more than what is considered adequate compensation for the services rendered,” according to a CRA analysis released earlier this month.

More than a million Canadians receive the disability tax credit, which can be worth thousands of dollars and is designed to provide help for people who have mental or physical impairments that are “severe and prolonged.”

Up to 40% in contingency fees

Over the years, businesses have sprouted up to help people apply for the tax credit. They charge anywhere from 15 to 40 per cent in contingency fees and last year collected between $ 9.5 million and $ 25.4 million, according to the CRA.

The proposed restrictions will significantly reduce that take. Companies will only be permitted to charge $ 100 for an application to determine eligibility, another $ 100 to actually apply, and then $ 100 for each year the credit is retroactive.


One of the biggest disability tax credit companies in Canada is National Benefit Authority. It has advertised in Halifax. (Susan Allen/CBC)

There have long been calls for a crackdown. Legislation introduced by the Harper government in 2014 intended to tighten the rules, but it’s only now that federal officials have released draft regulations.

“I think it’s a great change,” said Eastern Passage, N.S., resident Cathy Publicover.

Publicover has several disabilities and initially sought the help of a Toronto company called National Benefit Authority to apply for the tax credit. But after being told the company would charge her 30 per cent to submit the application, she decided to do it herself. She found it easy and simple to complete.

“At that time it would have taken $ 970 from me,” Publicover said, adding it is money she uses to pay for her medication and other health-related bills.

Those who apply for the disability tax credit are required to fill out a small portion of a form with their personal information, while the remainder is completed by the patient’s doctor or nurse practitioner.


Patrick Curran, national executive director of Independent Living Canada, calls fees in the thousands of dollars “unconscionable.” (Submitted by Patrick Curran)

Companies currently charge as much as $ 4,663 to help an adult, and $ 7,383 for an eligible minor, depending on the amount of the disability tax credit and the number of retroactive years, according to the CRA.

Those kinds of fees are “unconscionable,” said Patrick Curran, the national executive director of Independent Living Canada. The organization advocates for the disabled and has 25 offices across the country that help people fill out the disability tax credit (DTC) forms for free.

“Our position has been that there should not be any charge whatsoever for the filing of an application for a DTC,” Curran said.

He welcomes the proposed changes and said he’s fine with setting the fee at $ 100 an application.


Monique Brooks operates a one-person business helping people apply for the disability tax credit. She said the process can take more than a year and she doesn’t get paid if the tax credit is not approved. (Paul Brooks)

But Monique Brooks, who owns and operates Disability Tax Credit Consultant Services in Harrowsmith, Ont., told CBC she was “horrified” when she learned about the plan to replace contingency fees with a $ 100 flat rate per application.

“Some of these businesses have employees and so therefore it’s going to cause job loss,” she said.

One of the biggest companies is National Benefit Authority. It has not replied to a request to comment on this story.

Brooks, however, is a one-person operation.

She charges 20 per cent for helping people access the disability tax credit, although she said she provides free advice in other areas where people may need help. She said the government makes people in her business sound like “we’re vultures, and it makes it sound like we’re taking advantage of the disabled.”

She said while that may be partly true of some companies, people who are denied the tax credit need help reapplying from those who know “the ins and outs of the system.”

She said 20 per cent is reasonable because “that same Canadian without my support might have a 90 per cent chance of being denied and then they would get zero.”


The Canada Revenue Agency said it is working to simplify the disability tax credit application process. (Sean Kilpatrick/Canadian Press)

She said the application process is not as easy as the government makes it sound, and she’s spent two-and-a-half years helping applicants get approval. She notes she does not get paid until the application is approved and receives nothing if it’s rejected.

The executive director of an organization that represents companies like Brooks’s calls the regulations “an unprecedented move.”

Nicola Moorhouse, with the Association of Canadians Disability Benefit Professionals, said in a news release that taxes are complicated and “dealing with CRA can be a nightmare.”

She said the direct result will be unavailability of services to disabled Canadians, near total job loss within the industry and fewer benefits for those who need them most.

“It should be obvious that the intent and effect of the proposed regulations is to wipe out the service-provider business and reduce the availability of the DTC to disabled Canadians.” Moorhouse said.

CRA ‘balancing act’

A CRA spokesperson calls the regulations “an important balancing act.” On the one hand, it wants to protect persons with disabilities, who can be some of Canada’s most vulnerable people, but it also recognizes that some may need help with their tax credit requests and that companies can play a role.

“While we recognize that reaction from various stakeholders will be varied, the CRA believes it has found the right balance,” Dany Morin said.

He added the CRA is also continuing to work to simplify and clarify the disability tax credit application process and expects to make significant progress on this front in the coming months.

Morin said once the consultation period has ended, the CRA will consider the feedback and may revise the proposal. It will then be up to the minister of national revenue to approve it.

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Woman with disability banned from No Frills store after failing to pack groceries fast enough

A woman with disabilities is fighting back after she was told not to return to a popular No Frills grocery store unless she brought help — because she couldn't pack her groceries fast enough.

When Linda Rolston complained to head office, Loblaw offered the Alberta woman $ 100 in compensation on the condition she keep quiet about what happened and not take action against the company.

"They can keep the $ 100. I'm going to tell anybody and continue with my human rights action," said Rolston, who had her voice box removed in 2014 due to cancer. The surgery left her unable to speak without a prosthesis in her throat, and with limited mobility in her shoulders and arms.

David Lepofsky, a prominent advocate for people with disabilities, calls the company's compensation offer "a microscopic Band-Aid, which doesn't fix the problem."

Lepofsky, who is volunteer chair of the Accessibility for Ontarians with Disabilities Act Alliance, says provinces need to set legal standards on accessibility for companies and crack down on those that fail to meet them. 

"It's not going to change just by raising awareness," he said.

Lawyer David Lepofsky, an advocate for people with disabilities, says change requires government action, not just increased awareness. (Tina Mackenzie/CBC)

Rolston often shopped at the No Frills in Whitecourt, Alta. She says she had to "beg and plead" staff for help packing big grocery runs but was often told they were too busy.

No Frills franchises are part of the Loblaw group of companies. It is the kind of grocery store where customers are required to pack their own items and in exchange, the idea is, they pay lower prices.  

Fed up with having to beg for help, Rolston says in January she complained to the franchise owner, who promised to fix the problem.

But when she went back a few weeks later, nothing had changed, she says. As she worked to pack her items as quickly as she could, a lineup was forming behind her. That's when the owner came over, Rolston says, and told her if she can't bring someone to pack for her, she shouldn't come back.

Rolston says she had to 'beg and plead' — often unsuccessfully — for staff to help her pack up her groceries at her local No Frills store. Until one day the owner told her she needed to go shop somewhere else. (Linda Rolston) 

"I was stunned," she said.

"I said, 'Are you telling me because I'm disabled I can't shop here?' And he said, 'Yes.' I said, 'I don't have anyone to help me and I have my prescriptions here.' He said, 'Well, you're just going to have to go somewhere else.'"

Go Public contacted the owner but he declined to answer questions, calling it a "human resources thing." 

Accessibility policy doesn't apply 

Rolston complained again – this time to Loblaw's head office. Customer service apologized and Rolston says she was  told she could continue shopping at the store as long as she called ahead to make sure someone was available to assist her. Rolston said that didn't seem right since other customers weren't expected to do the same.

"I'm an adult. I'm not going to phone to get permission to go shopping," she said in an interview.

Go Public asked Loblaw specific questions about Rolston's confrontation with the No Frills owner and about Loblaw's response, including the $ 100 compensation offer from the company that followed. The compensation letter says Rolston must sign a release form agreeing not to talk about the case or pursue any further action in order to collect the $ 100.

Rolston says the owner of her local No Frills store told her she needed to bring someone to pack her bags for her if she wanted to shop there. (Romeo's No Frills/Facebook )

Loblaw replied with a general statement to Go Public that says it took "immediate action" when it heard what happened and addressed the issue "directly with the store owner." 

Spokesperson Karen Gumbs also wrote that Loblaw is "working with the store's management to ensure staff at the store receive additional training" regarding the company's customer service accessibility policy.

However, Gumbs also said that policy — which promises to ensure "equal access" for people with disabilities and provide training for new staff — only applies to "corporate grocery stores," not the 257 No Frills franchises across the country.  

'Less human'  

A lack of national, mandatory standards is the problem, according to Mary Ann McColl of the Canadian Disability Policy Alliance. 

"[Rolston] was made to feel less human than other patrons in this store," she said.

Ontario, Manitoba and Nova Scotia are the only provinces with laws requiring public and private organizations to make all spaces accessible to people with disabilities. Penalties for those who don't comply can be in the hundreds of thousands of dollars. 

McColl says that kind of approach is what's needed in every province, because accessibility laws set the standard for organizations before problems occur. In most provinces, the only recourse is through human rights laws. While those are good, she says, they can only address individual complaints.

Queen's University professor Mary Ann McColl says every province needs legislation requiring public and private organizations to make all spaces accessible to people with disabilities. Only three provinces currently have such a law. (Queen's University) 

"It's a very slow way to make change in society, one person at a time. Furthermore, there's no guarantee that if a person is successful … that there will be a structural change as a result of that." 

People with disabilities account for the highest number of human rights complaints in Canada.

Rolston's home province of Alberta is one of those without an accessibility law.  

In November, the province appointed para-athlete Tony Flores as its first advocate for persons with disabilities. In an email to Go Public, Flores says he supports accessibility legislation and plans to "bring that forward to the government."

He didn't say when he'll do that.

Rolston says telling her story publicly was hard.

"I was kind of scared for people to see me. I don't like to have my picture taken or anything, but I was so upset about this — I wanted everyone to know what they did to me." 

She says she won't go back to the No Frills store, and is now filling out the paperwork for a human rights complaint. 

While Rolston appreciates the apology she got from customer service, she is still waiting for the one she requested from the No Frills owner. 

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Go Public is an investigative news segment on CBC-TV, radio and the web.

We tell your stories and hold the powers that be accountable.

We want to hear from people across the country with stories you want to make public.

Submit your story ideas to gopublic@cbc.ca.

Follow @CBCGoPublicon Twitter.

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'I am absolutely furious,' says mother trying to renew disability tax credit

More Canadians are speaking out about difficulty dealing with the Canada Revenue Agency as they apply for the disability tax credit.

“I am absolutely furious,” said Bonnie Bosak about her attempts to renew the disability tax credit for her 16-year-old son.

Bosak, who lives in Niagara, Ont., said she first applied for her son after he was diagnosed with ADHD when he was six. He was subsequently also diagnosed with a severe learning disability.

“He basically needs help with anything related to reading, writing, deciphering. So even though he is in high school, he is on an IEP which is a specialized learning program,” she said, adding his reading level is that of a Grade 2 or 3 student.

“He’s looking for a part-time job and he’s hoping to get on as a part-time baker at Tim Hortons, but he can’t even fill out a job application for himself,” she said.

Bonnie Bosak said she first applied for the tax credit for her son when he was six, and had no problem with the renewal five years after that. (CBC)

Bosak had no problem when she was required to renew the application five years later.

However, last fall when she applied to the CRA for another renewal, the agency requested additional information, which Bosak provided. She has since been told her son is no longer eligible, and no one will tell her why.

“Nobody will give me a clear reason so that I can understand why he is no longer classified as disabled,” she said. “They’ve just randomly decided he has been cured of everything that ails him and so we’re no longer entitled.”

32 surgeries and still rejected

Yellowknife resident Ben Brown has also not been given a reason why he was rejected, other than that his health issue does not affect 90 per cent of his life. He disputes that, saying it impacts every aspect of his life and always has.

Ben Brown’s disability tax credit application has been rejected. He has undergone 32 operations for a congenital hearing defect that has worsened over the years.(Submitted by Ben Brown)

The 36-year-old was born with a congenital hearing defect that has worsened as he has aged. He says he’s unable to wear hearing aids because of the damage to his ears. He’s undergone 32 surgeries and says he struggles with his disability every day.

“When I asked why I didn’t qualify, I was told, “If we told you what was wrong with your application, you would just fix it and reapply,”‘ Brown said.

He has 90 days to appeal the ruling.

CRA lost application

Haley Thomas of Bridgewater, N.S., has a different complaint. The 22-year-old said the CRA lost her application.

She said she originally applied in March 2017 on the advice of her doctor. She is severely overweight and needs help with daily care. She has been placed on a seven-year wait-list for gastric bypass surgery and hoped the disability tax credit could help with additional weight loss supports. However, CRA said it had no record of her application, so she reapplied in December.

Bridgewater resident Haley Thomas says the Canada Revenue Agency lost her disability tax credit application.(Submitted by Haley Thomas)

She said she was told all the documents had been received and were being reviewed, with a decision expected March 20. On that date, she was told the decision had been delayed until March 29.

“Then, within eight hours, I received a phone call from a representative stating that all of my personal information has been lost and that they have no record of me in their system. So my social insurance number, banking information, personal health records, photocopied prescriptions, personal letters about my health problems, everything was gone,” she said.

She said she is so stressed by the situation that she is losing sleep, wondering and worrying where her information has gone. She has contacted her Member of Parliament for help and is waiting to hear back.

Effects of impairment determine eligibility

In an email to the CBC, the CRA said to be eligible for the disability tax credit, a person must have a severe and prolonged impairment in physical or mental functions as defined by the Income Tax Act and certified by a medical practitioner.

Spokesperson Etienne Biram said eligibility is not based on the diagnosis, but “rather on the effects of the impairment on the basic activities of daily living as defined under the act.”

Biram said there have been no changes made to the eligibility criteria and the CRA does not have a target rate for approvals or denials of the credit.

He said each application is reviewed on a case-by-case basis and some people who applied were approved for two to 10 years, but must submit a new application when previous approval has expired.

There are the equivalent of 108 full-time employees who are processing applications for the disability tax credit, Biram said, and if applicants do not agree with the CRA’s ruling, they can provide additional medical information and ask for a review or formally object.

He pointed out the agency has taken steps to make the credit available to all eligible Canadians, including increasing outreach activities.

Biram said the CRA has also reinstated the disability advisory committee to ensure that tax benefits for disabled people are administered fairly and transparently.​

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CRA to review disability tax credit applications after backlash from diabetics

After months of criticism and accusations it lied to disability advocates, the Canada Revenue Agency is reverting to a previous interpretation of a tax credit used by diabetics and will review applications denied since May 2017.

Since the spring, people with Type 1 diabetes have complained that they have been turned down for the disability tax credit — even if they had been approved in previous years.

To qualify for the credit, the CRA requires adults with Type 1 diabetes to spend at least 14 hours a week on activities, specified by the agency, related to administering insulin.

A patient’s physician must confirm those hours to the CRA.

Diabetes Canada and the Juvenile Diabetes Research Foundation obtained an internal CRA memo, dated May 2, 2017, that says: “Unless there are exceptional circumstances, adults with diabetes can generally manage their daily insulin therapy without taking 14 hours per week.”

In a briefing with reporters Friday morning, officials said the CRA will return to using the pre-May 2017 clarification letter for disability tax applications, but reiterated that “no change has been made to the eligibility criteria.”

It will also proactively review denied applications where the CRA relied on that revised clarification letter to determine determine eligibility. 

The CRA says individuals do not need to submit new or additional information unless they are contacted by the agency.

In the meantime, a new disability committee will come up with recommendations going forward.

Advisory committee will advise CRA

Kimberley Hanson of Diabetes Canada said her group started asking questions and the CRA denied there were any substantial changes.

“I consider that the CRA lied to us in not admitting they sent this email May 2nd and pretending that they were shocked that there had been a change and that it was impacting so many people,” she said.

National Revenue Minister Diane Lebouthillier has faced questions recently in the House of Commons about the increase in denied applications. At the time, she said there has been no change in the criteria used to assess people with Type 1 diabetes

The opposition asked the minister about the advocacy groups’ memo in question period earlier this week and accused her of misleading the House when she said nothing has changed.

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Canada Revenue Minister Diane Lebouthillier has said in the House of Commons that the criteria have not changed for people with type 1 diabetes to get the disability tax credit. (Chris Wattie/Reuters)

In response, Lebouthillier reiterated her argument that the criteria haven’t changed and that, in fact, approvals for the disability tax credit have increased 20 per cent between 2014 and 2016.

However, those numbers do not take into account the changes since May 2, 2017. Diabetes Canada says in 2017 so far, denials of the disability tax credit for the life-sustaining therapy category under which Type 1 diabetics fall, has spiked 70 per cent.

The government also fleshed out more details about its plans to set up a disability advisory committee. The panel will consult with stakeholders and advise the department on policies like the disability tax credit,

The committee, co-chaired by CRA assistant commissioner Frank Vermaeten and Dr. Karen Cohen, chief executive of the Canadian Psychological Association, will make recommendations, but it will be up to the minister and her team to decide to implement them or not.

It will meet three times and year and will publish routine public reports, said officials.

The other 12 voluntary members include:

  • Sherri Torjman, former vice-president, Caledon Institute of Social Policy, from Ontario.
  • Laurier Beachell, Baker Law, from Manitoba.
  • Gary Birch, Neil Squire Foundation, from British Columbia.
  • Dr. Jeff Blackmer, Canadian Medical Association, from Ontario.
  • Lembi Buchanan, Coalition for Disability Tax Credit Reform, from British Columbia.
  • Michael Edgson, RBC Financial, from British Columbia.
  • Roberta Heale, Nurses Practitioner Association of Canada, from Ontario.
  • James Hicks, Council of Canadians with Disabilities, from Manitoba.
  • Emily Johnson, Diabetes Canada, from Manitoba.
  • Wendall Nicholas, Wabanaki Council on Disability, from New Brunswick.
  • Véronique Vézina, COPHAN, from Quebec.
  • Karen Wiwchar, H&R Block Canada, from Alberta.

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Disability in demand: People with autism offer employers a broader talent pool

He’s a former job pariah who’s suddenly a hot new hire, a university graduate with astonishing analytical abilities who could barely answer a question during job interviews.

Now the very reason Shawn Bolshin couldn’t get a job is the very reason he has one.

“I’m not like, that different,” the 30-year-old says in a halting voice, “but I do have that ability to see those details and things and have a much tighter focus on things.”

Bolshin has autism, a social communication disorder that makes any interview painfully awkward.

For the past two years, he’s been working for CIBC’s information security department in Toronto, where his uncanny knack for detecting hard-to-spot breaches in the bank’s online network has made him a rising star.

Haddie Majnoon, one of the senior leaders there and Bolshin’s mentor, sees further potential for him.

“‘I personally see Shawn moving to higher and higher levels of analysis.”

But for all his abilities, CIBC wouldn’t have hired Bolshin if it weren’t for Specialisterne, a Danish company with a global mandate to help employers make the most of untapped autistic talent.  

‘This is our ramp’

Specialisterne does that by recruiting people on the autism spectrum for companies in need of skilled workers.

“Most of our recruits don’t like job interviews,” says Alan Kriss, who runs the company’s Toronto office.

“The interview is a barrier the way a step is a barrier to someone with a wheelchair and this is a ramp. This is our ramp.”

The “ramp” is an out-of-the box approach to assessing autistic people’s skills by allowing potential hires to show rather than tell what they can do.

Specialisterne holds workshops where candidates are given a complex task such as building a robot and then testing it. How they manage the exercise, Kriss says, can reveal a lot.

ROBOTS.jpg

Specialisterne puts candidates for CIBC jobs through a unique way of assessing their strengths, not with the regular job interview process but by giving them a task to build robots. (CBC)

“What we’re saying to business and to industry is that there is a talent pool of people that are ready and capable of working and the processes that you’re using right now are probably not allowing you to access that talent pool effectively,” says Kriss.

“If you want to increase the pool of labour available to businesses in Canada. let’s find other ways of connecting you to them.”

Specialisterne’s goal is to brand and sell the autism advantage and help 25,000 autistic adults in Canada find jobs.

Momentum is building. So far, Specialisterne has helped nearly 100 people with autism in Canada find work over the past four years. The number may seem small, but Kriss says it’s huge given these people stood much more limited chances before.

A different conversation

“The conversation has turned to: ‘Well, what jobs do you think he could fill? Do you think he could fill my job? And what’s involved in doing it?’ And that’s a very different conversation than what we had before.”

Besides CIBC, TD Bank, Shoppers Drug Mart and software company SAP are just some of the companies for which Specialisterne is recruiting. It’s in talks with nearly 100 industry partners.

It does seem as if autism is having a moment, as a largely unemployable portion of the population suddenly seems to have a disability in demand. For them, it’s the start of a welcome tipping point.

ALAN.jpg

Alan Kriss, who runs Specialisterne’s Toronto office, says most of the company’s recruits don’t like job interviews. (CBC)

But others caution the growing practice of hiring someone because they are autistic is just a trendy form of tokenism.

Rich Donovan, a former Wall Street trader who now consults with big business on how to tap into the disability market, sees this as a step back.

“I see this as an attempt to define somebody artificially,” says Donovan, who often advises clients like PepsiCo and TD to recruit people with disabilities to take advantage of their added insight.

But Donovan is adamant disability should never be the defining factor when it comes to hiring.

Personal experience

He speaks from personal experience. He has cerebral palsy, a neurological disorder that affects body movement and muscle co-ordination.

“If I’m walking into a job interview and somebody is thinking OK what are guys with cerebral palsy good at, I don’t want to have that conversation at a job interview. I want to have a conversation about how much profit I can bring to your company,” says Donovan.

“The condition should not be the driver for hiring someone. Period. You want the driver to hiring someone to be what they can do in the workplace. We can’t start creating boxes that are quite frankly artificial.”

JEFF.jpg

Jeff Gebhardt applied for 1,000 jobs before he landed one at Ford. (CBC)

But the box, at least when it comes to autism, is still very much in the making.

And some are happily stepping into it.

When Ford launched a pilot project at its world headquarters in Detroit last year to hire six people with autism, Jeff Gebhardt didn’t care if his disability got him in the door.

After applying for more than 1,000  jobs, the accounting graduate just wanted in.

Taking chances

“I don’t mind it,” says the 35-year-old, who proofreads contracts with the automaker’s suppliers.

“I’m glad to know that there are companies out there, companies like Ford, willing to take chances on people with disabilities.”

Gebhardt and the other autistic recruits are doing so well, Ford plans to hire up to 24 more people on the autism spectrum this year.

“People with autism provide a unique set of skills the way they think, the way they work,” says Meeta Huggins, director of diversity at Ford.

“And it aligned closely with our vision and mission within the company to build an inclusive environment.”

JOHN.jpg

John Sicard, CEO of Kinaxis, an Ottawa-based software company, says if businesses don’t intentionally hire employees with autism, it won’t happen. (CBC)

The business case for connecting with untapped autistic talent sold John Sicard, CEO of Kinaxis, a software company based in Ottawa.

Five individuals with autism, including his 23-year-old son Nick, work at Kinaxis. His son, who is a software tester, inspired Sicard to partner with Specialisterne. Four other individuals with autism now work for the company.

“One of those individuals graduated top of his class in computer science, couldn’t find work for years until he discovered us and he’s an absolute rock star working for Kinaxis.” says Sicard.

‘A joy-filled life’

“I look at it as a win-win-win. We win because we get great innovative thinkers. They win they start a joy-filled life full of confidence.”

Sicard says if businesses don’t intentionally hire people with autism, it won’t happen.

He says it’s no different than breaking down stigmas around race and gender.

“We had to do it on purpose. Someone had to stand up and say we’re going to do this on purpose. Everyone can sit on the same bus. Well, this is 2017. We’re starting to do something new on purpose. I think 25 years from now no one is going to think twice about it.”

For now, it’s still very much a conscious effort. CIBC intends to hire more autistic people as part of its broader strategy to hire 500 new team members with disabilities across Canada this year.

As for Bolshin, when asked where he sees himself in five years, he pauses for a moment before answering.

“Change is something that is difficult for me, even though I do want more for myself. I think I would be OK when the time comes.”

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