People with learning disabilities call for greater protections | Watch News Videos Online



There’s a renewed call today for greater protections for the many British Columbians with a hidden disability. As Kylie Stanton reports, those with learning disabilities say they’re being left out simply because their condition is not as obvious.



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How accessible is Lethbridge for people with disabilities?


May 30 to June 5 marks National AccessAbility Week, which acknowledges and celebrates contributions made by Canadians with disabilities, the removal of barriers to accessibly and inclusion, and the work to oppose discrimination against those with a disability.

Diane Kotkas, director of DaCapo Disability Services with Lethbridge Family Services, said it’s important to see people for who they are and what abilities they have, and not just for their disability.

“Every one of us has challenges in some form or another,” she said.

“Individuals with disabilities are members of our community and should be treated with the same rights and opportunities as any other citizen.”

Kotkas added it’s important to acknowledge the barriers some face, and the ease at which many people are able to navigate the community.

Read more:
Lethbridge Transit introduces new cityLINK network

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“As ambulatory individuals, we more often than not take accessibility for granted,” she said. “But for many folks with a disability, accessibility is a daily challenge.”

According to Chris Witkowski, the parks planning manager with the City of Lethbridge, there have been recent improvements in the mobility accessibility around the city.

“(The) last couple years we’ve really put a high-priority on making the city more accessible,” Witkowski said.  “Probably the biggest accomplishment was completing our mobility accessibility master plan, which was completed in summer of 2020.”

Also a member of the Mobility Accessibility working group, Witkowski said the city is always welcoming input from residents and organizations about what improvements can be made.

“I know facilities is always making improvements to the public buildings,” he said. “If you’re walking on intersections, you’ll see new sidewalk ramps, trying to improve accessibility for wheelchair use, strollers, walkers, those with visual impairments.

“For playgrounds, we’ve started to add some playground surfacing, some hard-rubber surfacing to increase wheelchair access in there. Putting a lot more inclusive play pieces into our playgrounds.”


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Canada’s Week of AccessAbility


Canada’s Week of AccessAbility

For Bill Brown, who is blind and runs the Lethbridge Association for the Blind, many additions to the city have been positive.

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“City’s done a lot of work in putting ramps at all the corners, and that’s very beneficial to people in wheelchairs, but it certainly helps people who are visually impaired as well.”

However, he does believe some improvements could be made within the city’s transit operations, and hopes the general public is able to become more educated on disabilities.

“It’s amazing how people have difficulty in dealing with someone with a disability, and I think that’s not only blindness but practically every disability,” he admitted.
“People sometimes, when they meet someone who’s blind, they think they have to talk loud, because they’re thinking of deafness.”

According to Witkowski, the recently-approved Capitol Improvement Program includes funding for improvements to accessibility at city facilities and funding for a benchmark study.




© 2021 Global News, a division of Corus Entertainment Inc.





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Ontario’s COVID-19 triage protocol ‘discriminates because of disability,’ advocates say


When Tracy Odell experienced bleeding in her stomach last summer during the first wave of the COVID-19 pandemic, she went to hospital but vowed she would not return.

“I don’t feel safe in hospitals and a lot of people with disabilities similar to mine, where you need this much assistance, don’t feel safe in a hospital,” she said.

Odell was born with spinal muscular atrophy and requires assistance to complete many daily tasks.

Now, amid the third wave and with critical care units filling up, Odell said she fears if she ever needed the care, she would not be able to get it.

Read more:
Pushing Ontario’s ICUs to the brink — How some hospitals are preparing for the worst

“I, personally, wouldn’t go to a hospital. I would feel it would be a waste of time and I’d feel very unsafe to go thereIt’s a real indictment, I think, of our system, that people who have disabilities, have severe needs, don’t feel safe in a place where everyone’s supposed to be safe,” she said.

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Odell is most concerned about a “critical care triage protocol” that could be activated in Ontario.

It would essentially allow health-care providers to decide who gets potentially life-saving care and who doesn’t.

Under the guidelines, as set out in a draft protocol circulating among hospitals, patients would be ranked on their likelihood to survive one year after the onset of critical illness.

Read more:
Ontario reports 3,480 new COVID-19 cases, 24 deaths

“Patients who have a high likelihood of dying within twelve months from the onset of their episode of critical illness (based on an evaluation of their clinical presentation at the point of triage) would have a lower priority for critical care resources,” states the document.

Odell says it’s tough to predict who will survive an illness.

“They have to guess who’s going to last a year ... As a child with my disability, my projected life expectancy was like a kid … they didn’t think I’d live to be a teenager and here I am retired, so it’s a very hard thing to judge,” said Odell.

Disability advocates have been raising alarm bells over the triage protocol for months.

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David Lepofsky, of the Accessibility for Ontarians with Disabilities Act Alliance, sent multiple letters to Minister of Health Christine Elliott demanding transparency, arguing “the Ontario government’s pervasive secrecy over its critical care triage plans has made many people with disabilities terrified, angry and distrustful.”

Read more:
‘She deteriorated like she fell off a cliff’ — Vaccinated Ontario senior battles COVID-19 in hospital

“People with disabilities have disproportionately had to suffer for the past year from the most severe aspects of COVID … People with disabilities are disproportionately prone to end up in intensive care units and die from the disease,” said Lepofsky.

“Now we face the double cruelty that we are disproportionately prone to get told, ‘No, you can’t have that life-saving care.’”

Lepofsky said the document that is circulating, while not finalized, is problematic, unethical and discriminatory.

“The rules that have been given to intensive care units for deciding who gets critical care and who doesn’t, if they have to ration, may look fine because they’re full of medical jargon, but they actually explicitly discriminate because of disability,” he said.

“We agree there should be a protocol, but it can’t be one that discriminates because of disability. That’s illegal.”

John Mossa, who is living with muscular dystrophy, has been homebound for more than a year, afraid he would contract COVID-19 if he went outside and not survive it.

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Read more:
COVID-19 — Critical care nurses in high demand in Ontario as 3rd wave puts pressure on hospitals

“COVID is a very serious disease for me … if I do get COVID, I would probably become very ill and pass away because of my poor respiratory condition. I have about 30 per cent lung capacity due to my muscular dystrophy so COVID is very serious. It’s been a very scary time,” he said.

Never more frightening than right now, Mossa said, amid a surging third wave with a record number of patients in Ontario’s critical care units and the potential for triaging life-saving care.

“The people that would be affected the most are the least considered to get care … I’m afraid, I’m totally afraid to go to hospital right now,” he said.

A few weeks ago, Mossa said, he had a hip accident but he has avoided the hospital, even though he is suffering and should seek medical help.

Read more:
‘A lot of suffering’ — Front-line health-care workers describe the moments before death by COVID-19

“I should be considering going to hospital, but I’m not going to go to hospital because I know that I won’t get the care I need and if it gets any worse. I know that I wouldn’t be given an ICU bed,” he said.

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On Wednesday, when asked about the triage protocol, Elliott said it has not yet been activated.

That was echoed by Dr. James Downar, a palliative and critical care physician in Ottawa who co-wrote Ontario’s ICU protocol.

Read more:
The complications of getting COVID-19 vaccinations for non-residents in Ontario

“I don’t think that there’s any plan to initiate a triage process in the next couple of days. I think a lot is going to depend on which way our ICU numbers go. They have been climbing at a fairly alarming rate,” he said.

On concerns by advocates that the protocol discriminates against people with disabilities, Downar said, “The only criterion in the triage plan is mortality risk.”

“We absolutely don’t want to make any judgments about whose life is more valuable, certainly nothing based on ability, disability or need for accommodations … If you value all lives equally, that, I think, is the strongest argument for using an approach that would save as many lives as you can,” he said.


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Ontario to allow hospitals to move patients to long-term care, retirement homes to create room for COVID-19 patients


Ontario to allow hospitals to move patients to long-term care, retirement homes to create room for COVID-19 patients





© 2021 Global News, a division of Corus Entertainment Inc.





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New Brunswick mom says son’s human rights have been violated, hires lawyer – New Brunswick


A New Brunswick mother whose son with disabilities went missing from his school says she is planning to file a formal complaint against the school and the district.

Jacqueline Petricca of Bouctouche, N.B. says she is still shaken up over what happened to her son at Blanche-Bourgeois School last month.

“It was the most terrifying almost two hours of my life,” Petricca said.

Petricca says that even though her 11-year-old son, Anthony — who has ADHD, Tourette syndrome and OCD and may be on the autism spectrum — is a known flight risk, he went missing from school on March 24.

Read more:
New Brunswick mother seeks answers, support after disabled son goes missing for hours from school

“I had no idea where he was. I did not know if he has gotten into a car with anybody or what had happened,” she said.

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Anthony was found safe at a nearby business almost two hours after going missing, she says.

Now, the mother has hired a lawyer and is planning to file a formal complaint against the school and the district for not providing proper full-time support for her son.

“If there was a true inclusion program, then my son would not be on a half-accommodated day, just two to three hours,” she said.

According to the mother, a psychologist has told her that since Anthony is not classified as a complex case, all of the supports that are recommended and required are not going to be paid for until he gets that classification. She says she has been waiting for a meeting with the district for months to have her son evaluated.

A representative from the Francophone Sud School District, Ghislaine Arsenault, would not comment on the incident, citing privacy reason, but said in a statement to Global News that “staff members work very hard to ensure student safety and to provide students with an environment that promotes their overall development and well being.”

Read more:
N.B. family seeks community support for son’s rehab equipment

Petricca says her son’s full-time educational assistant (EA) support was taken away in February 2019, which she believes was for budgetary reasons.

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Fredericton lawyer and former education minister, Jody Carr, says the school “failed to protect” Anthony when he ran away from the school. He also alleges Anthony was denied his accommodations and failed to provide timely intervention for his disabilities, which Carr says is a violation of the student’s rights.

“Just based on disability, he is being denied a service and he is being denied an education and the human rights act says that no one can be denied an education based on their disability,” said Carr.

Anthony says he wants to return to school full-time.

“I would be willing to even without the EA,” he said.

But his mom says he needs appropriate supports in place before that can happen. Otherwise, she fears he may go missing again.

Since Global News reported their story, Petricca says the district reached out and she will be meeting with a clinical team to access Anthony’s needs on Friday. She says she will also be having a Zoom meeting with Education Minister Dominic Cardy on Thursday.

“The ultimate goal it is to have him in a program where he is safe all day and educated,” she said.


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Program helping Moncton youth with disabilities find work


Program helping Moncton youth with disabilities find work – Mar 18, 2021




© 2021 Global News, a division of Corus Entertainment Inc.





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B.C. increases income and disability assistance by $175 per month


The British Columbia government is increasing disability and income assistance rates by $175 per month, but is falling short of making the $300-per-month COVID-19 boost permanent.

Social Development Minister Nicholas Simons said Tuesday the increase will cost about $400 million per year and benefit more than 300,000 people.

It’s the largest ever permanent hike to income assistance and disability assistance rates in the province and will be applied starting in April.


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COVID-19 relief benefits meant to help people on income and disability assistance are coming to an end


COVID-19 relief benefits meant to help people on income and disability assistance are coming to an end – Dec 16, 2020

“This past year has been challenging for everyone, and especially so for those British Columbians already relying on assistance to make ends meet,” Simons said.

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“Now that we are seeing signs of some economic recovery from COVID-19, it’s essential we provide the stability of a permanent rate increase for people and families, including 49,000 children who live in poverty.”

The province is also raising the seniors’ assistance supplement, by $50 a month per resident, for the first time since 1987.

This lifts the maximum rate for a single person from $49.30 to $99.30 per month and benefits up to 20,000 more low-income seniors.


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B.C. cabinet minister defends decision to cut $300 in monthly COVID-19 income and disability assistance


B.C. cabinet minister defends decision to cut $300 in monthly COVID-19 income and disability assistance – Dec 15, 2020

The temporary $300-per-month disability and income assistance benefit to help recipients deal with the pandemic expired in December.

Eligible British Columbians can still access the COVID-19 Recovery Benefit, which helps people based on income.

“This increase — the largest that people on income assistance and disability assistance have seen – is a critical piece in working toward the fulfilment of our province’s poverty reduction goals,” Together Against Poverty Society executive director Doug King said.

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Read more:
Coronavirus: B.C. government still processing more than 330K applications for recovery benefit

As of April 1, a single person on income assistance will receive $935 per month and a single person on disability assistance will receive $1,358.42.

A couple on income assistance will receive $1,427.22 per month and a couple on disability assistance will receive $1,947.56, after increases of $350 per month.

A single parent with one child will receive $1,270.58 if on income assistance and $1,694.08 if on disability assistance, plus up to $697 in federal and provincial child benefits.





© 2021 Global News, a division of Corus Entertainment Inc.





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Halifax wheelchair user ‘trapped’ in apartment due to 15-day-long elevator repair


A Halifax mom is advocating for her son with disabilities, who hasn’t been able to leave his apartment for more than two weeks, due to an out-of-order elevator.

Tracy Denney and her 30-year-old son Adam live on the third floor at 16 Caxton Close, with four flights of stairs standing between their apartment and the exit.

“I’m fed up,” Denney tells Global News.

Adam has spina bifida and has been wheelchair-bound since he was two years old.

The only elevator in their building broke down Feb 24. For more than two weeks, Adam has not been able to leave his apartment.

Read more:
Waiting list ‘abyss’ in N.S. for care and housing of people with disabilities: doctor

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Now, his mother says it’s having an impact on his physical and mental health.

“I understand that probably in the last year with COVID, a lot of people have been stuck in their house. But there’s a difference between being stuck in your house and being trapped,” Denney said.

“He’s actually physically not able to get out of the apartment.

“It’s mental health and panic attacks; he’s just overwhelmed by what’s going on.”

Denney also said Adam is now going onto week three of having to miss work because he cannot leave. She is a single mother, so this is having a financial impact on the family as well.

Read more:
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She said this is not the first time the elevator has broken. She and her son moved into the building in 2005, but issues with the elevator arose in the last two years.

“It’s gone down many times, sometimes that’s days at a time,” said Denney.

She said the elevator broke on New Year’s Day in 2020 and stayed broken for nine days. Adam missed holiday dinners and a hockey games he sometimes coaches.

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Submitted by Tracy Denney.


Submitted by Tracy Denney

“We have been actively looking for a wheelchair-accessible apartment, and the problem is in the HRM, there’s no affordable, accessible housing. So we’re pretty well stuck.”

In the last 15 days, Denney said she’s made countless of phone calls to the owners of the building, operated by Doric Management, as well as the company in charge of fixing the elevator.

“I’m sort of just getting the run around because the elevator place doesn’t really tell me what’s going on.”

Having already unsuccessfully contacted medical services and the fire department in hopes of getting help, Denney said she’s exhausted her options.


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Advocates call for reversal of funding cuts for books for people with disabilities


Advocates call for reversal of funding cuts for books for people with disabilities

On Tuesday, Denney filed a complaint with the Residential Tenancies Program, also known as the tenancy board.

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“We’re just at our wit’s end. We don’t know what to do,” she said.

Doric Management declined an interview with Global News. In an email statement, the agency said the lengthy repair is out of their hands.

“Our repair company is working to complete the repairs on a timely basis. We regret the inconvenience that this is causing our tenants,” the statement read.

The company said it is aware of the issues an out-of-order elevator has caused tenants with mobility issues.

“The elevator is an amenity which helps many of our tenants on a daily basis. Any time it is out of commission for needed repairs it’s inconvenient and we recognize that,” the statement added.

“At the same time, repairs and maintenance are required for the continued safe operation of the elevator. We need to make sure the elevator is operating safely, and this sometimes means it is unavailable during repairs.”


An ‘out-of-order’ sign is seen at the 16 Caxton Close apartment building in Halifax.


Submitted by Tracy Denney

In response to a safety concern, Doric Management said: “Absolutely safety is a concern. This is why we need to maintain and repair the elevator to ensure it in safe working order.”

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Read more:
Nova Scotia tenant advocacy group calls for landlord licensing bylaw

As of Wednesday evening, the elevator was still out of order.

Denney said able-bodied people are just not aware of how difficult this is for her son.

“It would be like me removing the stairs and telling everybody ‘you have to stay in your apartment.’ I know that’s not something that would happen, but to him, that’s what’s happening,” Denney said.

“His way of exit and entry is gone.”

Denney says she knows she may be annoying to the property managers, but she is Adam’s only advocate.

“I’ll do anything to make sure he’s able to get in and out,” Denney said.

The Department of Service Nova Scotia stold Global News in an email that it “(does) not comment on complaints due to privacy of the individuals involved.”

“The Human Rights Commission may be able to provide information on the rights of persons with a disability,” the email read.

As for the complaint, the department said “a residential tenancies officer can offer to mediate the dispute or a hearing will be held and a decision made within 14 days.”

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Tracy and Adam Denney are scheduled to attend a Residential Tenancy hearing by phone on April 7.




© 2021 Global News, a division of Corus Entertainment Inc.





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March of Dimes hosts virtual kitchen party fundraiser


It’s a new twist on a social gathering in a world of social distancing.

On Saturday, Nov. 7, March of Dimes Canada is hosting a virtual kitchen party to support Canadians living with disabilities during the second wave of COVID-19.

The Conquer the Curve Kitchen Cèilidh will invite participants to prepare dinner from home with step-by-step help from RCR executive chef Brooklyn Hillier. Then, while dining on their freshly cooked meal, watch a 45-minute virtual concert courtesy of folk musician JP Cormier.

“We’re really excited; this is our first virtual event in Halifax,” says Donna Williamson, regional manager at March of Dimes in Atlantic Canada.

Tickets for the Conquer the Curve Kitchen Cèilidh event can be purchased through the March of Dimes website. The $100 ticket includes dinner ingredients enough for two people to make Hillier’s confit of chicken pappardelle and a craft beer selection from Garrison Brewery.  There is also a $20 ticket option that provides a list of the ingredients needed for the dish in case participants are outside of Halifax but still want to partake in the event.

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Participants receive a Zoom invite via email and instructions on how to pick up their meal kit at Garrison Brewery while following COVID-19 safety protocols.

March of Dimes Canada is a community-based rehabilitation advocacy charity for people with physical disabilities. At the beginning of the COVID-19 pandemic, the organization launched an emergency campaign, Conquer the Curve, to raise awareness about the challenges faced by people with disabilities.

According to the latest data from Statistics Canada, one in four Canadians – about 25 per cent of the population – has a disability.

Read more:
‘I need help’ — Coronavirus highlights disparities among Canadians with disabilities

“Right now, we’re all feeling isolated and lonely, cut off from our friends and family,” Williamson says. “This is what people with disabilities feel every day — even more so during the pandemic.”

According to the March of Dimes website, people living with disabilities are among the most vulnerable to COVID-19, with isolation and proper access to necessities remaining a critical issue.

Valorie Crooks, a professor of health geography at Simon Fraser University, says people with disabilities are experiencing “ongoing systemic challenges in accessing and experiencing preventative care” and expects higher rates of COVID-19 among this group.

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Read more:
People with disabilities, autism carry a heavier pandemic burden, advocates say

Funds raised from events like the Conquer the Curve Kitchen Cèilidh ensure vital programs can continue to keep those living with disabilities connected and supported while they self-isolate during the second wave of COVID-19.

“Whether it’s through virtual programming or telephone-based services — so that we can really help support (them) during this pandemic and unprecedented times,” Williamson says.

For more information on the Conquer the Curve Kitchen Cèilidh and to purchase tickets, click here.




© 2020 Global News, a division of Corus Entertainment Inc.





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Fewer veterans have applied for disability during COVID-19, sparking accessibility concerns – National


The federal government is being criticized for not doing enough to help disabled veterans as new figures appear to confirm fears COVID-19 is making it more difficult for them to apply for assistance.

The figures from Veterans Affairs Canada show about 8,000 veterans applied for disability benefits during the first three full months of the pandemic, which was about half the normal number.

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The sharp drop in the number of applications helped the department make a dent in the backlog of more than 40,000 requests for federal assistance waiting to be processed.

Yet the department also acknowledges at least part of the decline is likely because the pandemic made it harder for veterans to get the necessary information to apply, such as doctor’s assessments.

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That is exactly what Brian Forbes, chairman of the National Council of Veterans Associations, has been warning about since the spring.

Forbes, whose organization represents more than 60 veterans groups in Canada, says he is frustrated because the government has not moved to address the problem despite knowing about it for months, and that now is the time to act.


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Veterans will be granted free parking year round in Vancouver


Veterans will be granted free parking year round in Vancouver – Oct 22, 2020




© 2020 The Canadian Press






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Toronto restaurant discriminated against woman who uses mobility aids, tribunal rules – Toronto


TORONTO — A Toronto restaurant discriminated against a woman who uses mobility devices and “publicly humiliated” her by refusing to let her use its bathroom four years ago, the Human Rights Tribunal of Ontario has ruled.

In a decision issued this week, the tribunal says Haily Butler-Henderson “experienced adverse treatment” when she was repeatedly refused access to a downstairs washroom at the Pentagram Bar and Grill on Aug. 19, 2016.

The tribunal says a server also physically blocked Butler-Henderson’s path and loudly proclaimed to other patrons that the then-23-year-old was accepting the risk and liability associated with going down the stairs.

Read more:
Toronto woman launches human rights complaint over washroom access issue

“Instead of asking the applicant if she needed any accommodation or assistance to use the facilities, the server made a spectacle of the applicant in front of its other patrons which was discriminatory,” adjudicator Romona Gananathan wrote.

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“She was eventually allowed to use the facilities but only with conditions.”

The tribunal ordered Pentagram, which did not participate in the proceedings, to pay Butler-Henderson $10,000 in compensation for injury to dignity, feelings and self-respect.

The restaurant’s current management and staff must also undergo training on their obligations under the Human Rights Code of Ontario, and post signs related to those responsibilities on the premises.

Butler-Henderson welcomed the ruling on social media, saying it “sets a huge precedent for disabled people in the future.”

Her lawyer, Lorin MacDonald, said the ruling will “serve restaurateurs to take notice.”

“While it was distressing to have the restaurant owners completely ignore the human rights application and to wait so long for validation of the discrimination, the decision is important for two reasons: it is now a matter of public record, and it initiated and continues a worldwide discussion around the broader issue of access to public restrooms,” MacDonald said in a statement.

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As economy recovers, some Toronto restaurants to end tipping

In her complaint, Butler-Henderson, who has spina bifida and uses forearm crutches as a mobility aid, said the incident took place as she was waiting for friends at a nearby coffee shop.

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Lineups for the washroom there were too long so she went down the block to Pentagram and asked for permission to use the facilities, she said.

Butler-Henderson said the server specifically cited her use of crutches as a reason to deny her access to the washroom, stressing the restaurant would be held liable if she were to fall.

At one point, she said, the server physically barred her from going down the stairs. Eventually, staff relented and allowed her to use the washroom, but Butler-Henderson said the incident was humiliating and infringed on a basic human right.

The human rights complaint argues people with disabilities have the right to assume a certain amount of risk for themselves.

Butler-Henderson said it was not the server’s place to assess her ability to navigate the stairwell on the basis that she has a disability and relies on a mobility aid.




© 2020 The Canadian Press





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People with disabilities, autism carry a heavier pandemic burden, advocates say – National


People with intellectual disabilities and autism are dying of COVID-19 at higher rates than other people in at least two states in the U.S., according to new data collected by NPR.

In Pennsylvania, people with intellectual disabilities and autism are dying at a rate twice as high as other people who contract the virus. In New York, they’re dying at 2.5 times the rate of others.

One in four Canadians — about 25 per cent of the population — has a disability, according to the latest data from Statistics Canada, and experts worry the numbers are similar when it comes to COVID-19 deaths in Canada.

READ MORE: Disability advocates say B.C. woman’s death shows need for clearer COVID-19 policy

“We know that … when you look at the response (to COVID-19) and the (exclusion) of certain populations … people with disabilities is one of those populations,” said Meenu Sikand, executive lead of equity, diversity and inclusion at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

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While there isn’t any Canadian data available yet, it would make sense that people with disabilities and autism are disproportionately affected by the virus, according to Valorie Crooks, a professor of health geography at Simon Fraser University who currently holds the Canada Research Chair in Health Service Geographies.

“This is a population that we know experience ongoing systemic challenges in accessing and experiencing preventative care,” Crooks said.

“If we had a group of people that we know have typically been on the margins of having access to preventative margins of healthcare, including how that intersects with the social care system, I think it’s quite logical to expect that this would be a group of people … that has higher rates of COVID-19.”






Recognizing the unique challenges COVID-19 presents to people with disabilities


Recognizing the unique challenges COVID-19 presents to people with disabilities

Even before the COVID-19 outbreak, people with disabilities were facing “significant” challenges every day, March of Dimes Canada president Len Baker previously told Global News. March of Dimes is an organization which provides services for people with disabilities in Canada.

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“Those historic barriers become exacerbated during a time such as this pandemic,” he said.

“Now, not only do they have to address the issues that they need to be able to complete their goals and feel connected to the community, but with social distancing and the isolation that the pandemic brings, it causes us concern that many individuals are going to feel even a greater sense of isolation and loneliness during this time,” he said.

U.S. data

Pennsylvania and New York state are two of the only states collecting data about people with intellectual disabilities and autism as it relates to COVID-19 deaths.

In Pennsylvania, the numbers are tallied by the Office of Developmental Programs of the Pennsylvania Department of Human Services.

As of June 2, the data showed 801 confirmed cases and 113 deaths among people with intellectual disabilities and autism. This includes anyone who receives state support while living in group homes, state institutions or their own homes.

READ MORE: Federal panel aims to ensure Canadians with disabilities included in coronavirus response

In New York, NPR calculated the data based on numbers collected by the New York State Office for People with Developmental Disabilities.

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As of early June, 2,289 people who receive services from this office were tested for the novel coronavirus and 368 had died.

In Canada, advocates are frustrated with the lack of data collection.






Warning ignored from B.C. disability advocate about essential hospital visitors


Warning ignored from B.C. disability advocate about essential hospital visitors

As someone who works with people with disabilities and autism on the front lines, Sikand knows the disabled community is being disproportionately affected by COVID-19 — but Canada isn’t collecting any national data to back this up and drive policy.

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Without the data to support her claims, there is less pressure on the government to make a change.

“It’s already three months ⁠— almost four ⁠— into the pandemic response, and we missed all those opportunities,” Sikand said.

“The government was moving forward with a (plan), trying to make sure that it includes different communities … but our community has been left out of this conversation because there’s no real data.”

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‘Ableist lens’

The lived experience of a person with a disability or autism is extremely unique to that person, Sikand said, and the current policies regarding COVID-19 don’t take this into account.

“I think … social distancing and visitation policies were created using an ableist lens,” Sikand said.

She uses the example of Ariis Knight, a 40-year-old woman with cerebral palsy who died alone in a B.C. hospital in April.

READ MORE: Autism and isolation — How coronavirus is affecting kids on the spectrum and their parents

Knight communicated with her family and support workers through her eyes and facial expressions. She was admitted to Peace Arch Hospital in White Rock on April 15 with symptoms of congestion, fever and vomiting but did not have COVID-19.

Her support staff were not permitted access due to restrictions put in place during the pandemic. Not long after being admitted, Knight was put on end-of-life care and died days later.

“She was cut off from the people who understood how she communicated … her support system was not considered,” Sikand said.

“People with disabilities are marginalized because (policy) decisions are being made by people who don’t have disability.”

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Inclusive emergency planning

Advocates say people with disabilities are often left out of emergency planning in Canada.

David Lepofsky, who chairs the Accessibility for Ontarians with Disabilities Act Alliance, likened the situation to a fire raging inside of an apartment building complex. People inside are alerted by a fire alarm and speaker that tells them to exit by taking designated stairs illuminated by clearly indicated markers.

A person who is deaf wouldn’t hear the fire alarm. A person in a wheelchair would be trapped inside. And those designated markers would do nothing for someone who can’t see. Unless they receive support, Lepofsky said anyone with disabilities living in the building would likely not survive.

READ MORE: ‘I need help’ — Coronavirus highlights disparities among Canadians with disabilities

Similarly, he said the government has applied a mostly one-size-fits-all approach to COVID-19 measures that offer little support to the country’s disabled.

“It’s because of their disability and it’s because no one planned for them in the emergency,” he previously told Global News.

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Often, Canadians with more severe disabilities will get placed in long-term care facilities, where health officials said more than 79 per cent of COVID-19-related deaths occur. Lepofsky said that poses a danger to those with disabilities as well.

Marielle Hossack, press secretary to the minister of employment, workforce development and disability inclusion, said in a statement to Global News that the federal government has increased human resources for support services for Canadians with disabilities over the phone and online.

The federal government has also established the COVID-19 Disability Advisory Group, which is comprised of experts in disability inclusion that provide advice on “real-time live experiences of persons with disabilities.”






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Hossack wrote that the group discusses disability-specific issues, challenges and systemic gaps as well as strategies, measures and steps to be taken.

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But some advocates don’t think that’s enough.

“A lot of the measures that have been made to prepare for this pandemic have been done to think about the greatest number of people,” Karine Myrgianie Jean-François, director of operations at DisAbled Women’s Network Canada, previously told Global News.

READ MORE: B.C. woman with disability dies alone in hospital due to COVID-19 visitor restrictions

“(This) often means that we forget about people who are more marginalized and people who have a disability.”

Jean-François said that includes the Canada Emergency Response Benefit (CERB).

Currently, 70 per cent of Canadians eligible for the disability tax credit will receive the enhanced GST/HST benefit based on their income levels due to COVID-19, but that may not add up to much for Canadians with disabilities who may also need to hire food deliveries or in-house care, or those who would be deemed ineligible for the aid because they’re unable to work.

The money “doesn’t go as far as it used to,” she said.

“We’re not all equal under COVID-19.”

Possible solutions

Sikand wants to see the COVID-19 Disability Advisory Group actually consult with people with disabilities and autism.

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“I’m a person with disability myself. (So far), I don’t know the impact of that committee on my quality of life and the response from the government,” Sikand said.

“Nothing about us without us.”






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She also thinks policy needs to be created through the lenses of both disability and race.

“The disabled racialized community are even further on that marginalized side,” she said. “Unless we have them included in the planning process going forward, people will be harmed.”

Crooks agrees ⁠— change needs to be “community-driven and user-defined.”

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“Changes can be difficult to implement overnight, and (they) require support,” Crooks said. “That’s why our most important first step is to actually look at what’s happening and to talk to people who are affected.

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“We need to actually hear solutions coming from all these people who are part of the care networks of individuals, including individuals themselves.”

Sikand says it’s urgent that these changes take place now before something like another COVID-19 outbreak happens again.

“We know this is not the first or the last pandemic we’ll see,” she said.

Questions about COVID-19? Here are some things you need to know:

Symptoms can include fever, cough and difficulty breathing — very similar to a cold or flu. Some people can develop a more severe illness. People most at risk of this include older adults and people with severe chronic medical conditions like heart, lung or kidney disease. If you develop symptoms, contact public health authorities.

To prevent the virus from spreading, experts recommend frequent handwashing and coughing into your sleeve. They also recommend minimizing contact with others, staying home as much as possible and maintaining a distance of two metres from other people if you go out. In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.

In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.

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For full COVID-19 coverage from Global News, click here.

⁠— With files from Global News’ Emerald Bensadoun and the Canadian Press

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