Accessibility for Ontarians with Disabilities Act Alliance Update
United for a Barrier-Free Society for All People with Disabilities
Media Reports Show Yet More Problems Facing People with Disabilities During the COVID-19 crisis – The Need for Urgent Government Action Is Swiftly Ballooning
April 20, 2020
The COVID-19 crisis remains our top priority this week in our campaign for accessibility and inclusion for people with disabilities.
The fact that people with disabilities are facing additional hardships during the COVID-19 crisis leaps from the pages of media reports in this area. Here is a recent sampling of some of the coverage. This selection of news reports includes:
* An April 6, 2020 report by CTV London entitled “Some LTC drivers refuse passengers in wheelchairs” shows troubling barriers that can face public transit passengers with disabilities during the COVID-19 crisis.
* The April 11, 2020 Globe and Mail included an extensive article entitled: “Educators worry gap may grow for disadvantaged students stuck at home”. While it focused on the unmet needs of vulnerable and disadvantaged students during the move from classroom teaching to online learning, it barely mentioned the enormous disadvantage facing students with disabilities, numbering in the hundreds of thousands across Ontario.
* The April 13, 2020 Toronto Star included an article entitled: “Activists fear for safety of people with disabilities after funding for mobility and medical devices deemed non-essential”. It documented the serious harm that the Ford Government has done to people with disabilities by declaring the Assistive Devices Program for people with disabilities non-essential during the COVID-19 crisis.
* The April 15, 2020 Toronto Star included an excellent letter to the editor by accessibility advocate Ed Rice entitled: “Ford may be doing better, but he’s not helping the disabled”.
* The April 15, 2020 Windsor Star included an article entitled: “Parents worried disabled children would get low priority during COVID-19 surge”. It showed serious concerns within the disability community about the Ford Government’s secret protocol for rationing medical care during the COVID-19 crisis from the perspective of people with disabilities.
* The April 18, 2020 Toronto Star included an extensive report entitled: “People with severe disabilities feel especially vulnerable in COVID-19 shutdown”. It detailed yet more reasons why people with disabilities feel especially precarious during the COVID crisis.
* The April 19, 2020 CBC website posted a very thoughtful guest column by two professors with expertise in the disability field, entitled “Assessing the value of a life: COVID-19 triage orders mustn’t work against those with disabilities Governments need to affirm ethical and human rights obligations to persons with disabilities”. It raises serious concerns with the Ford Government’s secret protocol for rationing critical medical care during the COVID crisis.
* The April 19, 2020 Toronto Star included a detailed article entitled “‘Window is closing’ to protect disabled community from a COVID-19 outbreak”. It explores the vulnerability of people with disabilities living in nursing homes and disability living facilities due to the COVID out pandemic.
You can also check out the captioned video of AODA Alliance Chair David Lepofsky’s appearance on CTV’s national morning program “Your Morning” on April 10, 2020. He had a mere 3 minutes on the air to summarize all these issues!
With all these problems and many more facing people with disabilities, where is the Ford Government’s plan of action to address the urgent needs of over 2.6 million Ontarians with disabilities? We’ve been calling for this for weeks.
It is especially important for the media to give more attention to the added hardships imposed on people with disabilities during the COVID crisis. Because we are all shut in at home, we have no access to places like the Legislature to come together en masse to raise these concerns.
There have been 445 days since the Ford Government received the groundbreaking and blistering final report of the Independent Review of the implementation of the Accessibility for Ontarians with Disabilities Act by former Ontario Lieutenant Governor David Onley. The Government has still announced no good comprehensive plan of new action to implement that report. This is so even though the Government staged a media event on February 28, 2020 to promise that it would “lead by example” on accessibility and inclusion for people with disabilities.
There have now been 26 days since we wrote Ontario Premier Doug Ford on March 25, 2020 to urge specific action to address the urgent needs of Ontarians with disabilities during the COVID-19 crisis. He has not answered. His office has not contacted us. The plight facing Ontarians with disabilities during the COVID-19 crisis is made even worse by that delay. The news reports in this Update give just some illustrations of this.
For more background, check out and share with others:
* The widely viewed April 7, 2020 online Virtual Public Forum on what Government Must Do to Meet the Urgent Needs of People with Disabilities During the COVID crisis. It has American Sign Language interpretation and captioning. This event was jointly organized by the AODA Alliance and the Ontario Autism Coalition.
* The AODA Alliance’s April 14, 2020 Discussion Paper on Ensuring that Medical Triage or Rationing of Health Care Services During the COVID-19 Crisis Does Not Discriminate Against Patients with Disabilities.
* Action tips on how to help ensure that patients with disabilities don’t face discrimination in access to critical health care.
* The April 8, 2020 open letter to Premier Ford, organized by the ARCH Disability Law Centre, voicing concerns about the Ontario Government’s protocol for rationing medical care during the COVID crisis.
* The AODA Alliance’s March 25, 2020 letter to Premier Ford, which has gone unanswered.
Send us your feedback. Write us at [email protected] Stay healthy and safe!
CTV LONDON | News April 6, 2020
Some LTC drivers refuse passengers in wheelchairs
CTV News London
LONDON, ONT. — A dispute over COVID-19 concerns for London Transit Commission (LTC) drivers came to a head over the weekend after a number of drivers refused to allow people in wheelchairs to board buses, CTV News has learned.
One of those people was Penny Moore, who says when she tried to take the bus to go shopping she was refused – not by one, but by two different drivers on separate buses.
“The bus driver there opened the door and started yelling at me and said ‘Do you know about the new rules?’ And I said ‘What new rules?’ He said ‘We’re not taking disabled and we’re not strapping them in.’ I said ‘I have the right to get the necessity and food like everybody else.’”
Moore says she did manage to get on each bus eventually, both only with the help of kindly fellow passengers.
CTV News has learned of six work refusals over the weekend by LTC drivers concerned over COVID-19.
One of the cases was resolved, but five other cases involved the Ontario Ministry of Labour. It ruled that drivers cannot turn away passengers with wheelchairs, and they are required to strap them in.
Amalgamated Transit Union Local 741 President Andre Fournier says drivers are concerned about getting close to passengers because they don’t have personal protective equipment.
“Right now they’re going through hell. There’s a lot of anxiety, stress. They’re afraid they’re going to take the COVID-19 home with them. Of course we sympathize with, you know, with people with mobility issues. But for them to get in close and strap, they’re touching the people. They’re touching their equipment and it’s just scary.”
LTC Chair, Councillor Phil Squire, says he sympathizes with drivers, but everyone must be allowed to board the bus.
“If we denied that right we would be into a human rights dispute that we would surely lose.”
Squire adds that drivers have been provided with an instructional video on how to safely tie-down mobility devices like wheelchairs.
As for Moore, she says a little compassion would go a long way.
“If you know someone that’s disabled, someone that’s senior, someone that doesn’t have a vehicle to go anywhere to get something – ask them if they need something when they go out, and also treat everybody with respect. Even though I’m disabled, I’m still a person. I have feelings too.”
Globe and Mail April 11, 2020
Educators worry gap may grow for disadvantaged students stuck at home
By CAROLINE ALPHONSO
Globe and Mail, Apr. 11, 2020
Canada’s largest school board will be delivering internet-connected devices to about 29,000 households as educators across the country struggle to level the playing field for poorer families even as they worry that the gaps will widen during this pandemic.
As school closings stretch from weeks into months in a bidto stop the spread of COVID-19, new challenges are emerging in education around how to make sure children who may not have adequate resources at home are still learning.
The Toronto District School Board (TDSB), like others across the country, is equipping families over the coming week with WiFi-enabled devices and iPads or Chromebooks if they don’t have them at home, hoping this will help keep students engaged in their schoolwork.
Increasingly, however, education observers are realizing that even though teachers across the country can send work to their housebound students, hold video chats and telephone calls, even the very best educators will struggle to overcome the loss of one key element: the school building.
The bricks-and-mortar classroom is one of the biggest assets in narrowing the divide, and distance learning during this pandemic is widening inequities that may end up setting back some children from marginalized communities even further, education observers say.
John Malloy, the TDSB’s director of education, acknowledged that technology is only one aspect of distance learning. The home situations of students vary and many may not receive help from families with their schoolwork for a variety of reasons, including parents who are considered essential workers or who are struggling after losing their jobs. Other students may have special needs that require a high level of supports, or be English-language learners who need extra assistance. That struggle will be greater remotely,” Dr. Malloy said. “[I’ve told principals] please use all the creative strategies that you know and understand to be sure that we leave no student or their family behind. “Learning is important. But well-being has to take a priority and we can’t race the learning agenda and forget about the well-being agenda,” he added, saying that the school board is looking at how to have social workers, guidance counsellors and child and youth workers connect with students.
Some provinces, including Alberta and Ontario, have outlined how many hours of work teachers are to assign students a week based on their grade level.
In Ontario, for example, students in kindergarten to Grade 6 are to receive five hours of work a week. Saskatchewan, meanwhile, said that school divisions and teachers will implement a “supplemental curriculum program” for students who want to continue learning.
Beyhan Farhadi, who recently earned a PhD at the University of Toronto examining education inequity and e-learning, said expectations in some provinces put increased pressure on families and magnify existing inequities. She said she is concerned that some students could be penalized for not getting the work done.
“There is an assumption that students are going to be disciplined, they are going to be supported by parents and caregivers. Quite frankly, it’s ridiculous,” said Ms. Farhadi, who is also a teacher with the Toronto board.
She added: “We definitely shouldn’t put learning on pause.
[But] we can provide supports both in resources and one-onone for our most vulnerable students, if we centre them in our planning.”
One of the main concerns educators face is how far behind students, especially those from marginalized communities, will be in their learning when school resumes, despite their access to technology during the pandemic.
Karen Robson, an Ontario research chair in educational achievement and at-risk youth at McMaster University, said “there’s going to be a lot of catching up” for students who were already struggling.
“A lot of the income inequalities are going to be exacerbated by this,” she said. “There’s going to be parents at home who have access to technology, who work from home, who are on top on all of this, probably really keen to help their kids with this. … But that’s not the case everywhere. There’s going to be massive differences.”
Teri Mooring, president of the British Columbia Teachers’ Federation, said she is advising educators to go slow in restarting what she described as “emergency remote learning.”
Many families, she said, are dealing with food insecurity, shelter and health issues, and schooling may not be a priority.
“It’s a health crisis, not an education crisis,” she said.
Ms. Mooring said students may often forget some of what they learned over their summer break, and educators will be more mindful with this longer absence if school resumes in September.
“Will it be more accentuated in September? Perhaps,” Ms. Mooring said. “And teachers will know that because we’ve all been through this and will take measures to ensure that those gaps are reduced.”
Toronto Star April 13, 2020
Activists fear for safety of people with disabilities after funding for mobility and medical devices deemed non-essential
By Laurie Monsebraaten
Social Justice Reporter
Mon., April 13, 2020
Thousands of Ontarians with disabilities may end up in hospital — or not be able to return to the community safely — because the Ford government has temporarily shuttered a provincial program that helps pay the cost of specialized mobility and medical devices, disability activists say.
The Assistive Devices Program (ADP), which provides 75 per cent of the cost of critical equipment such as power wheelchairs, portable oxygen, prostheses and insulin pumps, was declared a non-essential workplace March 24 due to the COVID-19 crisis.
And yet equipment vendors, who continue to receive government funding, have been deemed essential and are still open, causing confusion among people with disabilities who struggle to pay for equipment without ADP approvals.
The situation highlights the urgency to “to modernize the ADP system and to move to more digital solutions to support eligibility reviews and funding approvals,” said Christine Brenchley, executive director of the Ontario Society of Occupational Therapists.
“It is unclear why some elements of application review processes cannot proceed with safe practices of social distancing as in other areas of essential service,” she wrote in a letter to ministry officials March 27, in which she raised concerns about the government’s decision to close ADP.
Barrie-area mother Heather Morgan, a disability activist who has a rare neuromuscular condition, said she has also been raising the alarm with ministry officials and her local MPP.
“Many people with disabilities in the community rely on specialized equipment to remain in their homes safely while they self-isolate,” said Morgan, whose 16-year-old daughter, Ten, has an acute form of the condition that makes it difficult for her to even sit up and has been bedridden for the last year.
After months of waiting, an error in Ten’s application for a motorized wheelchair was sorted out last month, just as the ADP program was closed, Morgan said.
“My daughter has already missed a year of school because of this, and now we don’t know when the funding will come through,” she said.
“But this isn’t just about my family,” Morgan said. “I have heard from someone who is taping their prosthetic leg together because they cannot get it fixed and can’t function without it. I have heard from someone whose elderly relative needs a rollator (a type of walker that helps prevent falls) and can’t access one but lives alone. On and on the stories go.”
A spokesperson for Health Minister Christine Elliott said the government is aware of the uncertainty around the ADP program.
“We’re currently evaluating options to provide greater continuity of services under the Assisted Devices Program during the COVID-19 pandemic,” Hayley Chazan said in an email.
In 2017-18, the health ministry spent about $514 million to provide mobility and medical devices for more than 400,000 Ontario residents, an increase of about 48 per cent in the last 10 years, according to a 2018 provincial auditor’s report. More than 8,000 devices are covered under the program.
Since the program closed, the ministry has continued to fund equipment vendors based on an average of their monthly billings for the past six months. But some vendors are reluctant to offer equipment without ADP funding approval, Morgan said.
Others have said they will provide equipment if clients pay the 25 per cent co-payment. But for her daughter’s motorized wheelchair, that amounts to $10,000, she said.
Many people rely on insurance to cover co-payments. But insurers won’t cover the cost without an ADP approval, she said. “So it is a Catch-22 situation.”
In her letter to the ministry, Brenchley expressed grave concerns about the province’s decision to close ADP services during the pandemic.
She said many hospital patients are unable to return home or move to long-term care without access to appropriate seating and mobility systems.
Closing ADP will delay timely discharges that are critical as hospitals prepare for a surge in COVID-19 patients, warned Brenchley, whose society represents the province’s 4,300 registered occupational therapists.
Those living in the community who need mobility equipment repairs, upgrades or new equipment will be put at increased risk of falls, pressure injuries and other loss of independence if they can’t access ADP financial support, she said in the letter.
Some people will end up in emergency departments and put increased demands on home care during a time when the health-care system is already struggling to fight the pandemic, she noted.
ADP is already experiencing a three-to-seven-month backlog, Brenchley said, adding the situation will only worsen if the program remains shuttered during the health crisis.
In an email Thursday, Brenchley said the ministry has been working to ensure “expedited” funding approval for patients being discharged from hospital who need seating and mobility equipment.
“While not perfect, the ministry has addressed a workaround for essential services,” she said. “At this time we’re monitoring impacts.”
Double amputee Aristotle Domingo, founder of the Amputee Coalition of Toronto, is not aware of any local members who were awaiting ADP funding approval when the office closed last month.
“What I can share, however, is the level of anxiety that we feel while we wait for an approval from ADP even on a regular day,” he said this week. “In the amputee community, getting approval for a prosthesis or wheelchair is a game changer.”
Without funding support, mobility is severely limited, resulting in “less than ideal healthy outcomes both physically and mentally,” he added.
Toronto star April 15, 2020
Letters to the Editor
Ford may be doing better, but he’s not helping the disabled
Wed., April 15, 2020timer1 min. read
Kudos to Doug Ford for his leadership during this COVID-19 crisis, Letter, April 10
This letter only tells part of the story. In the government’s reports on COVID-19, the principle of “caring for our most vulnerable” is stated as a priority. Let’s not forget the vulnerable. The government’s Assistive Devices Program (ADP) supplies all types of items that people with disabilities rely on for their life-sustaining needs, employment, quality of life and mobility devices. On March 24, the program was classified as “non-essential” and frozen until the crisis passes. This has caused months of delay for processing assistance applications. The government says it is caring for the most vulnerable. People with disabilities are also part of our society. Unfreeze the Assistive Devices Program now to help those who have been waiting many months.
Edward Rice, Toronto
Windsor Star April 15, 2020
Parents worried disabled children would get low priority during COVID-19 surge |
Megan Crawford’s parents are “really scared” her severe disabilities will get her deprioritized — denied a ventilator or other critical treatment — should she be hospitalized with COVID-19 during an overwhelming surge.
The source of their alarm is a Health Ontario document called the Clinical Triage Protocol for Major Surge in COVID Pandemic, which spells out the “last resort” decisions that must be made when the rising number of patients requiring care outnumbers the resources available.
Last week, 204 organizations representing people with disabilities — including several from Windsor-Essex — signed a letter to Premier Doug Ford, Deputy Premier and Minister of Health Christine Elliott and Minister for Seniors and Accessibility Raymond Sung Joon Cho expressing grave concerns over the protocol.
“According to the Triage Protocol, some people will not get critical care because of their disability,” says the letter, also signed by 4,828 individuals.
“The rationing of scarce resources in the health-care system during this health crisis cannot be used as justification for discrimination.”
The government has said the protocol is just a draft. “The triage protocols you refer to are still in development,” Ontario Health spokeswoman Adele Small said in an email this week. But advocates and families are wary and alarmed. Megan, 45, was born with multiple disabilities and lives in her own home with the help of support workers to provide a 24/7 personal care.
When Megan’s mother Marleen saw the protocols — which were not labelled “draft” — she was “really scared.” Though Megan is very healthy, all it takes is exposure to the virus to put her at risk. “If she needed extreme intervention, such as a ventilator, would she be considered one of those people not in line for a ventilator, despite the fact she’s healthy and she’s 45?” Marleen asked. “We’ve been fighting for years and years and years for Megan and people like her to be seen as equal citizens in the community.”
Nowadays, Megan is living a good, healthy life. She’s well taken care of and she’s making a contribution to the community, Marleen said. “I don’t think they should be making decisions on who should be eligible for equipment just based on their disability.”
The exclusion criteria in the triage protocol identifies people whose medical conditions indicate a low probability of surviving. But it also includes people with severe to moderate cognitive impairment, as well as people considered “severely frail” because they depend entirely on personal care. Many people with disabilities could fit into both those categories.
“I know so many people with what people would consider severe or moderate impairments who are living full lives based on their support services,” said Domenic D’Amore, director of Windsor-Essex Brokerage for Personal Supports, an agency that helps people with disabilities arrange funding, housing and support staff so they can live on their own. The way he reads the “frightening” protocol, if you need services to live your daily life, then you’re somehow lesser on the scale of human beings, he said.
“Why is that judged a lesser life and who gets to make that decision, and who should?” He’s just hoping the pandemic situation doesn’t gets so severe that these types of decisions need to be made.
In the event of a major surge, the document says all current patients receiving critical care should be reviewed and those who would be excluded according to the criteria for the first level (the most severe cases with a predicted mortality of 80 per cent or more) should be identified and informed of the situation if possible. The triaging has three levels, with Level 3 having a lower predicted mortality rate of 30 per cent or more.
Parents of children with disabilities are worried that when medical experts are trying to decide who gets access to a ventilator and who doesn’t, their children wouldn’t be deemed as important as people who can walk and talk. “And so they would become a lower priority,” said Michelle Friesen, a parent leader with Windsor-Essex Family Network whose daughter Lisa, 39, is totally dependent on support for everything, from eating to going to the washroom. Born with cerebral palsy, she is blind, developmentally disabled and doesn’t speak.
But just because someone lives in a wheelchair and needs total care doesn’t mean they have a low quality of life, said Friesen. And it doesn’t mean that someone should get to decide that their life isn’t as important. “We’re asking for basic human rights and people determining that they like their life the way it is, and that those value judgments don’t get made,” she said.
If Lisa was critically ill with COVID-19, her disability shouldn’t be the main factor in deciding if she should receive lifesaving treatment, Friesen said.
“She’s got quite a lively personality and she’s quite engaging and very beautiful. And she really enjoys life.”
Toronto Star April 18, 2020
By Laurie Monsebraaten
As public health officials scramble to tackle the spread of COVID-19 in long-term care homes and residential care facilities, people with severe physical disabilities living in the community are watching and worrying. The isolation many feel under normal circumstances has been heightened by social-distancing orders. Everyday health challenges now put them at significant risk of falling ill.
The Star spoke to several people with disabilities and their families to see how they are faring in the face of the pandemic:
‘I know they are deciding if people are going to live’ Michelle Kungl says she is not afraid of dying of COVID-19. “I’m just worried about knowing when to go to hospital,” said the 37-year-old Richmond Hill woman, who suffered a spinal cord injury at birth and is believed to be one of the oldest people in Canada living independently, while partially dependent on a ventilator.
“Before this, when I got sick I would know when to go to the hospital,” she said in a phone interview from her accessible, ground-floor apartment, which has on-site attendant care.
“But now, I know if I go there, I’m probably going to be around people who are much sicker than I am,” she said.“I know they are deciding if people are going to live …, so it might be healthier for me to stay home.” Critically ill COVID-19 patients are put on hospital ventilators when they can no longer get enough oxygen into their seriously infected lungs. But Kungl
has relied on a personal ventilator, hooked up to a tracheostomy tube in her neck, her entire life.
“My mother is much more scared than I am,” Kungl said. “But as you know, I’m never really nervous about much.”
The Star profiled Kungl’s remarkable life in 2017, from her years as a child forced to live in SickKids hospital in Toronto, because doctors couldn’t keep her alive at home, to her life as an adult living on her own, roaring around in her power wheelchair and driving to her full-time job in her accessible van.
If a vaccine for COVID-19 isn’t developed soon, Kungl, whose condition makes her highly susceptible to respiratory illnesses, says she’s “fairly sure” she is going to get the virus. Her mother Lyn Kungl, her daughter’s fiercest advocate, is not optimistic.
“Michelle will die of a respiratory issue due to her limited lung capacity,” she said in an interview from her cottage near Wasaga Beach, where she has been in isolation with her husband since mid-March when they returned from a trip to the Maldives. “The question is whether it will be because of COVID-19.”
Like most people who are still employed, Kungl has been working from home since the province declared a state of emergency March 17. It is lonely.
I miss the camaraderie of my office colleagues,” she said of her job as a credit-card fraud investigator for a bank. Working from home, however, has its advantages, Kungl noted. She can log overtime hours and not have to cancel evening appointments with attendant care workers, who now wear surgical masks in addition to gloves, when they clean her equipment, cook her meals and do light housekeeping.
Lyn, who speaks by phone to Kungl every day and comes into the city once a week to check on her Riverdale home, has offered to buy groceries for her daughter. But so far, Kungl, who guards her independence, insists on buying them, herself.
Her one concession is to allow “personal shoppers” to accompany her down the aisles to pick out her groceries, bring them to the check out and help her load them into her van to limit the things she has to touch.
Lyn cringes at the thought of Kungl in a grocery store during the health crisis. But she knows her daughter.
“Michelle likes to look after herself as best as she can, and she wants to be independent and advocate for herself,” Lyn said. “So am I going to stop her from going to Walmart? No, I’m not.” ‘My mother and I pray together over the phone’
Michelle MacGugan, 47, is very worried about catching COVID-19. “I can’t go out. I’ve had pneumonia five times,” says the Scarborough mother of three who became a quadriplegic 14 years ago when she broke her neck in an accident. “I try to think positive. But I’m scared. I’m very scared.”
MacGugan, an Indigenous woman from the Dene Tha’ First Nation in Alberta, has been living independently with the help of attendant care services for 11 years. She has no use of her arms and legs and limited use of one hand which she uses to move her power wheelchair and make calls on her cellphone.
She was in a state of crisis even before the global pandemic. In February, the erratic care she had been receiving through one of the attendant care agencies had almost ground to a halt. For about a month, MacGugan was not fed dinner most nights, and many mornings she waited in bed for hours, wondering if an attendant would arrive to get her up and feed her breakfast.
Her lawyer, Gabriel Reznick with ARCH Disability Law Centre, said MacGugan’s case is one of the worst he has seen and highlighted the need for more personal support workers and provincial funding, even before the pandemic. It also underscores the need for an independent complaints system for people with disabilities who receive attendant services in their homes, he said.
“It is important to understand the psychological and physical impact that the lack of services has had on her,” he said in an interview last month before a new attendant care agency took over April 1.
“Over the last few months, Michelle has been diagnosed with urinary tract infections, severe bed sores and bowel obstructions that have been linked by her doctor to the lack of care she has received,” said Reznick.
She has been approved for five government-subsidized attendant care visits a day to help her with the activities of daily life, including emptying her constantly overflowing catheter bag; bathing; and light housekeeping in her ground-floor apartment.
Despite the improved service since April 1, MacGugan has another urinary tract infection, due to her catheter bag not being emptied before it backs up into her bladder.
And she worries that if she can’t get attendant care workers to empty her catheter bag regularly, she may end up in a long-term-care facility where Premier
Doug Ford acknowledged this week COVID-19 is raging like a “wildfire.” In the meantime, MacGugan is self-isolating in her apartment and missing visits from friends and her daughter Myrah, 21, who lives nearby. With up to five different attendants coming into her apartment every day, MacGugan knows she is at risk of becoming infected with the coronavirus.
“But they all wear masks and gloves,” she said. “They are very good to me. The one at dinner time … she likes to talk to me, because she knows I am by myself. One of them picked up my pain medication at the drugstore for me.”
MacGugan speaks by phone to Myrah and to her 72-year-old mother in a seniors’ assisted living building in Edmonton where the rest of her extended family lives.
“I really feel isolated here some times,” MacGugan said. “I think about people who are passing on from this virus. My mother and I pray together over the phone.”
‘A lot families with complex kids have no support’
Disability activist Sherry Caldwell has been advocating for people with disabilities since the birth of her daughter Ashley, 15, who is non-verbal and uses a wheelchair for mobility and a feeding tube for liquids. Caldwell, who co-founded the Ontario Disability Coalition in 2017, believes the province’s new $600-million autism program discriminates against children with other disabilities who get very little direct funding and endure long waits for provincially funded programs.
She wants the government to include all children with physical and development disabilities in a single, inclusive program. Since COVID-19 swept the country, Caldwell has helped raise the alarm over the province’s decision to temporarily shutter a program that funds mobility and medical devices for children and adults with disabilities.
Her coalition signed an April 8 Open Letter from ARCH Disability Law Centre calling on the province to ensure people with physical and intellectual disabilities have equal access to emergency responders, hospitals and life-saving ventilators in the case of shortages. And Caldwell was among those who alerted government and the media when staff at Markham’s Participation House group home for adults with developmental disabilities walked off the job earlier this month.
Like most Canadians, Caldwell and her family have been self-isolating in their Richmond Hill home since mid-March to help slow the spread of COVID-19. Her husband, Ian, is working from home, and Caldwell has been helping her sons in Grade 5 and Grade 12 complete their studies. The couple’s third son remains in Ottawa where he attends university.
Caldwell, who has a part-time job at the LCBO, took a leave of absence in March to protect Ashley. She also asked the personal support workers who had been caring for Ashley before and after school every day to stop coming to their home during the pandemic. “They work in
other homes, and I just couldn’t risk having them bring the virus to our home,” Caldwell said.
A nurse who worked in Ashley’s school before everything closed in March continues to visit the Caldwell home two days a week to bathe, feed and provide other attendant care services to the teen.
“She knows Ashley and ours is the only house she comes to,” Caldwell said. “But I know not all families are fortunate enough to find someone they trust. “A lot families with complex kids have no support and are absolutely in tears, because their staff work in other homes and care facilities and it’s just not safe for them to be in their homes at this time.”
Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter:
CBC on Line April 19, 2020
(Note: There is no indication that CBC has broadcast this guest column in whole or in part on the air on radio or TV. It is posted on CBC’s website, on its Opinion page)
Assessing the value of a life: COVID-19 triage orders mustn’t work against those with disabilities
Governments need to affirm ethical and human rights obligations to persons with disabilities
This column is an opinion by Roxanne Mykitiuk and Trudo Lemmens. Mykitiuk is professor at Osgoode Hall Law School and director of the Disability Law Intensive Program at York University. Lemmens is professor at the Faculty of Law and the Dalla Lana School of Public Health at the University of Toronto.
With the rapid rise in infection rates due to COVID-19, provincial and territorial health care officials have been bracing themselves for situations of extreme shortage of the critical care beds, medical equipment and personnel necessary to treat the sickest of the sick in hospitals.
In a pandemic setting, triage is the allocation of treatment and scarce resources to patients according to a set of criteria or priorities in order to achieve a particular goal. The key goal is to make the most efficient use of available resources to maximize the number of survivors, and in times of extreme health care crisis it can also include the survival of essential health care personnel.
But who gets left behind? Persons with disabilities fear and distrust priority-setting in medicine – and you can understand why. History and often personal health care experiences of people with disabilities fuel these fears. They worry that priorities or the way access criteria are interpreted and applied, whether deliberately or through oversight, will put people with disabilities at or near the bottom of the priority list for care.
Many jurisdictions, including some Canadian provinces, are drafting clinical triage guidelines for decision-making in circumstances of extreme shortage, to avoid such decisions having to be made by individual physicians on the fly. The Canadian Medical Association has also issued a more general framework for provincial guidelines.
Triage guidelines identify various selection criteria, in particular for access to ventilator support, and a decision-making procedure most often involving triage committees.
Draft Ontario Guidelines and the CMA framework emphasize that clinical prognosis of mortality should guide triage decisions. They do not explicitly deprioritize people because of an existing disability — but they don’t just focus on whether patients will likely survive the acute illness for which they require a ventilator or other critical care resources. Guidelines that go beyond a prognosis of survival of the acute COVID-19 related event tend to disproportionately affect people with disabilities. They also facilitate “ableist” presumptions about survival chances or quality of life after ICU treatment seeping into clinical evaluations. The CMA framework suggests prioritizing people with a “reasonable life expectancy,” and among those with equal survival chances, those with more life years left. Elderly patients and many with disabilities thereby risk getting the short end of the stick.
The Ontario draft guidelines use a score system to categorize those with lower survival chances, including months after ICU treatment. Progressive cognitive impairment, neurodegenerative diseases such as Parkinson’s and ALS, and clinical frailty due to a progressive illness, are given scores that deprioritize people with those conditions as candidates for ventilation. The Ontario guidelines also recommend withdrawal of ventilator support of those at higher mortality risk, in order to prioritize those at lower risk, depending on the level of scarcity. For example, under the most serious shortage scenario, a 60-year-old patient with moderate Parkinson’s would be refused access to a ventilator or be withdrawn from it in favour of one without this condition. The guidelines emphasize that patients who would become ineligible should continue to receive non-critical and palliative care. They also rightly emphasize the importance of frank discussions about low survival chances, so that patient can decide to forego invasive ventilator treatment.
While decisions need to be made to prioritize the allocation of scarce resources to individuals more likely to benefit from treatment, people with disabilities must not have to battle discrimination when seeking life-sustaining treatment. Their lives are equally as valuable as those living without disabilities.
It is important that key ethical and human rights obligations towards people with disabilities, including duties to accommodate, be affirmed in clinical triage policies. People with disabilities must not be sacrificed based on faulty presumptions and stereotypes about living with disability. On the contrary, a duty to accommodate may require providing them with some level of extra care to ensure that they receive a fair chance of survival in critical care. Any triage decisions that reflect a devaluing of the lives of people with disabilities or which are based on “ableist” presumptions about quality of life or on long-term survival are discriminatory and violate provincial human rights norms. Disabilities that are unrelated to near-term survival cannot be criteria for prioritization decisions under COVID-19 triage guidelines.
The following precautions would help ensure the rights of persons with disabilities:
- Triage guidelines should explicitly emphasize the need to avoid discrimination, and to adhere to human rights standards. The presence of a disability, including a significant disability, is not a permissible basis for giving people lower priority for intensive care. Criteria unrelated to near-term survival cannot be used as a basis for priority-setting or resource-allocation decisions. Survival estimates should be restricted to survival of the event for which the specific critical care intervention, such as a ventilator, is required. Estimates beyond this risk opening the door to evaluative decisions about the value of a life with a disability.
- The fact that a person with a disability may require accommodations during treatment, including intensive care, or in order to perform activities of daily life outside of treatment, are not a permissible basis for giving that person a lower priority for life-saving care.
- It’s critical that all decisions about priority-setting must be informed by evidence-based clinical criteria, and not based on stereotypes or assumptions that people with disabilities experience a lower quality of life.
- Decisions should also not be based on stereotypical assumptions about the survival chances of people with disabilities. When guidelines refer to frailty scales that correlate with short-term survival in determining priorities, doctors should not assume that a specific diagnosis or disability is indicative of poor near-term survival. The duty to accommodate may in fact require making additional efforts to give people with disabilities an equal chance of survival.
- All guidelines about priority-setting must state that persons with disabilities who use ventilators in their daily living and who seek medical attention in hospitals due to COVID-19 symptoms will be permitted to keep and continue to use their personal ventilators, and will receive COVID-19 treatment.
Provinces and the CMA should be lauded for drafting triage policies to facilitate challenging pandemic decision-making. But they should do so with transparency and invite public input.
Above all, guidelines should live up to human rights standards. It always requires some effort to safeguard human rights, but it can take a pandemic to force our hand and lay bare the depth of our commitment.
Toronto Star April 19, 2020
Originally posted at https://www.thestar.com/news/canada/2020/04/18/window-is-closing-to-protect-disabled-community-from-a-covid-19-outbreak.html?utm_source=Twitter&utm_medium=SocialMedia&utm_campaign=National&utm_content=windowisclosing&utm_source=twitter&source=torontostar&utm_medium=SocialMedia&utm_campaign=&utm_campaign_id=&utm_content
‘Window is closing’ to protect disabled community from a COVID-19 outbreak
By Jennifer Yang
As the province scrambles to contain the COVID-19 crisis in long-term care homes, disability advocates fear their sector could be next in the pandemic’s path of destruction and the “window is closing” for decisive action that could spare them from similar tragedy.
In the long-term care industry, the ingredients for disaster were baked in from the start: A deadly and infectious virus, buildings full of vulnerable people, and a highly-mobile workforce for whom close contact is part of the job description. But these risk factors are also inherent in “congregate” living spaces for people with disabilities and advocates say there is an urgent need for coherent plans aimed at protecting these vulnerable people.
While there is still time to take proactive steps to prevent widespread tragedy across Ontario’s disabled community, “that window is closing,” says Lori Holloway, CEO of Bellwoods Centres for Community Living.
“We don’t want to be the next long-term care scenario, where we’re dealing with mass outbreaks,” says Holloway, whose organization operates six supportive housing sites in the GTA, and helps people with disabilities live independently. “It’s not the time to be critical but it is the time to say there’s a group here that we think has been forgotten.”
While congregate living facilities for people with disabilities tend to be smaller than long-term care homes — and most residents are not elderly — they do cluster people with health complications or underlying illnesses that put them at heightened risk of deadly infection.
People who are disabled, both living in congregate settings and at home, are also highly dependent on personal support workers (PSWs), an underpaid workforce that is largely forced to work multiple jobs at different locations. While the province has ordered workers at seniors’ homes to choose a single workplace to limit the virus’ spread, a similar directive — or specific commitments for supplying personal protective gear — has yet to come for PSWs in the disability sector.
Work is now underway on a residential staffing directive that will limit “staffing flexibility in order to control infection spread,” said Palmer Lockridge, a spokesperson for the Ministry of Children, Community and Social Services (MCCSS), in an email. But he adds that “our goal is to strike the right balance between strong infection control measures to protect individuals and staff, and adequate staffing flexibility to ensure continuity of service from people who are highly dependent on others for their health and safety in everyday living.”
Meanwhile, for some facilities shared by people with disabilities, COVID-19 has already crept in. To date, there have been 33 outbreaks reported by provincially-funded facilities for people with developmental disabilities, affecting 130 residents and staff, according to Lockridge. The threshold for declaring an outbreak is one confirmed case. “We are monitoring this situation and working closely with our partner agencies so that their immediate needs are being met,” he said.
“We will do everything we can to protect our most vulnerable citizens because we all know they are most at risk during this outbreak,” he said in an email. “We’re in constant contact with our agency partners to understand their needs as this situation evolves.”
Among the group homes where COVID-19 has already erupted is Markham’s Participation House, a home for people with developmental and physical disabilities where a massive outbreak has infected at least 37 of the home’s 42 residents. Two have died and a dozen staff members have also been infected.
“I am hopeful that Participation House is a wakeup call for every single home out there,” said Laura Meffen, whose 21-year-old daughter was among the infected residents at Participation House. “I am hopeful that the government is going to now understand the need.”
But addressing the needs of the disability community is perhaps even more complex than shoring up protections for long-term care facilities or retirement homes. The community is diverse, spanning a range of disabilities and age groups, and living arrangements are varied. There are congregate living facilities or group homes, where residents might share bedrooms or communal spaces, and independent living housing sites, like Bellwoods, where people are clustered but live in apartment-style units and receive daily supports from PSWs.
Many people with physical or intellectual disabilities are also cared for in the community by family members or employ their own PSWs — including approximately 150 in Ontario who are on ventilation.
Complicating matters is that responsibility for the disabled population is spread across different ministries. An organization like Bellwoods is a transfer payment agency through Ontario Health, the newly-created “super agency” for delivering health care in the province. But group homes like Participation House fall under the purview of MCCSS, which oversees the “developmental services sector.”
The MCCSS recently announced new measures for its sector, including emergency childcare for workers and enhanced COVID-19 testing. A new, $40-million relief fund will also help offset extra costs for additional staffing, personal protective gear, physical distancing initiatives, and transportation to minimize infection risks but it’s being dispersed across several high-needs residential facilities, including women’s shelters and youth homes.
In the absence of clear guidance or support aimed at the disabled community, many agencies and facilities have been working on the fly to figure out their own solutions. In the mad scramble for PPE, those in the disability sector are competing with not just the rest of the world but also better-resourced sectors in their own community.
“The entire health care system has had challenges around PPE but I do feel that our sector often gets left behind,” says Deborah Simon, CEO of the Ontario Community Support Association.
There is also a lack of direction for PSWs who work in the disabled community, where the need for these crucial workers is high but wages are low. The current pay gap between PSWs who work in long-term care versus home and community care is about $3.50 an hour, according to Simon.
While restricting PSWs from moving between different workplaces would help prevent further viral spread to vulnerable people, a concurrent worry is that doing so could trigger an exodus of workers from the disability sector, where their compensation is lowest but the work they do is sometimes a matter of life or death.
“We’re kind of holding our breath day to day to see if we do get work refusals or people asking to put their status on hold,” said Holloway, who employs about 300 PSWs, three quarters of whom are part-time employees. “We have clients who are in some cases non-communicative, on ventilators, on oxygen, on life-sustaining electrical powered equipment. They could be completely dependent on us for their activities of daily living.”
Without specific guidance for facilities like hers, Holloway is trying to follow COVID-19 protocols developed for long-term care facilities, but many of them are difficult to adhere to because her housing sites don’t follow a medical model.
For example, some protocols require an on-site medical doctor, which her organization doesn’t have, so she is now working with the Ontario Medical Association to try and cobble together a stop-gap solution.
Her housing model also means her residents are tenants, covered by the Landlord and Tenant Act. So if there were an outbreak in one of her buildings, a quarantine would be much more difficult to enforce. “I can’t necessarily put a supportive housing building on lockdown.”
Other types of congregate living facilities have also taken proactive steps, ahead of explicit direction or guidance from the province. At North Yorkers for Disabled Persons, executive director Cathy Samuelson has been “terrified” for her residents since first reading about the COVID-19 pandemic. Her facility has been on lockdown since March 10.
The 10 residents at North Yorkers, aged 24 to 65, have complex physical disabilities and are also non-speaking or speech-impaired; they need extensive daily assistance with everything from dressing and eating to bowel and bladder care. If any had to go to the hospital, they would need a facilitator to accompany them so that they could communicate. Some residents are also prone to respiratory issues, including one individual who was hospitalized for pneumonia for a week shortly before the pandemic hit.
“An outbreak here would be devastating for us,” Samuelson said.
At Community Living Central York, which operates 16 group homes for people with intellectual disabilities, they have also been racing to get ahead of the outbreak: scrabbling together PPE, cancelling day programs and raising the hourly pay for PSWs while also overhauling schedules so workers are only entering a single home.
But these steps are costly and the organization is making sacrifices in other areas to ensure these proactive steps are taken, said Suzanne Conner, vice-president of the board of directors.
“We don’t have a lot of direction on who’s going to help us from the government but we know it’s the right thing to do,” Conner says. “It is our duty as a society to protect those who are vulnerable and these guys are as vulnerable as it gets.”