AODA Alliance
Accessibility for Ontarians with Disabilities Act Alliance Update
United for a Barrier-Free Society for All People with Disabilities
Web: www.aodaalliance.org Email: aodafeedback@gmail.com Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/
Major Disability Organizations Unite to Voice Serious Fears About Supposedly “Draft” Ontario Protocol for Rationing Critical Medical Care – A Patient’s Disability Should Never Be Used as a Reason to Deny Medical Care
April 8, 2020
SUMMARY
In a powerful news release issued by the ARCH Disability Law Centre today, an open letter to the Ford Government was made public that is co-signed by dozens of disability organizations (including the AODA Alliance) and thousands of individuals. This open letter insists that if scarce medical treatments (like ventilators) must be rationed during the COVID-19 crisis, health care providers must never discriminate against a patient with disabilities by denying them needed medical care due to their disability, or due to the health care provider’s beliefs or stereotypes about the quality of life for a patient living with a disability.
The open letter raises serious concerns about a protocol for medical triage emanating from the Ontario Government, copies of which were obtained by some within the disability community. This is triggering real fear within the disability community. The ARCH news release, open letter, and list of organizational signatories are set out below.
In an important article on this topic in today’s Toronto Sun, also set out below, journalist Antonella Artuso reported that the Ford Government did not dispute the existence of the controversial protocol, but Health Minister Christine Elliot claimed it was only a draft. The article includes the following, referring to Health Minister Christine Elliot:
Elliott acknowledged the existence of the document Tuesday but said it still needs to go through final review by government cabinet.
“I know that there have been some concerns that have been expressed by people with certain disabilities, that they would be cut out of treatment if we got to that point,” Elliott said. “I would never allow that to happen. People with disabilities are treated in the same way as everyone else, as they should be.”
This type of document, one that provides guidance on who should get advanced life-saving care, would only come into effect if all else failed, she said.
Four the AODA Alliance‘s part, it is hard to believe that such a document would only be a draft if it is not marked as a draft, and if it is already in circulation. It is our experience that at all levels, the Ontario Government is typically preoccupied if not obsessed with such cautions and secrecy around their documents. We would expect this to be especially the case for something as serious and controversial as the protocol for medical triage.
It is good that the Minister said that she would not allow “people with certain disabilities” to be cut out of treatment. The Ford Government must immediately and very publicly retract the protocol, whether or not it is a draft. It must publicly issue a directive that this protocol is not to be followed by health care providers.
The Government must quickly clear up the mixed messages that are no doubt floating around. It’s not just physicians in emergency rooms that need this cleared up. This is similarly vital for nurses and other health care professionals in hospitals and in the community. It’s vital for emergency medical technicians when they arrive at a scene in the community where a emergency patient has called for help. It’s similarly vital for nursing home administrators who can play a role in calling for emergency medical help for their residents.
It is also good that Minister Elliot said that the provincial Cabinet would have to approve any such protocol regarding medical triage. We call on the provincial Cabinet ministers and the Premier to pledge that they will ensure that any such protocol does not discriminate based on disability or permit such discrimination to take place, whether by doctors, nurses, EMTs or other health care providers.
It is vital that the Ford Government now open up the process for making its decisions and developing policy in this area. It cannot remain behind close doors, with the grassroots disability community excluded. We’ve been offering to help the Ontario Government address the urgent needs of people with disabilities during the COVID-19 crisis. It’s time for the Government to take up our offers.
Back on May 15, 2018, when running for office, Doug Ford wrote the AODA Alliance to set out his party’s election pledges on disability accessibility and inclusion. Among other things, he said these words, which now require him and his senior ministers to include us in their efforts during the COVID-19 crisis:
“Your issues are close to the hearts of our Ontario PC Caucus and Candidates, which is why they will play an outstanding role in shaping policy for the Ontario PC Party to assist Ontarians in need.”
Just over a month ago, on February 28, 2020, at a carefully staged media event, the Ford Government pledged that it is leading by example on accessibility for people with disabilities. Now would be a good time and place for the Government to start to do so.
When the immediate crisis passes, there should be an open and independent investigation of how this draft protocol came to be and why the voices of the grassroots disability community have been left out of discussions that so critically affect them.
This medical triage protocol was a top item discussed yesterday when the AODA Alliance and the Ontario Autism Coalition held a grassroots online Virtual Public Forum on what Government needs to do to protect the urgent needs of people with disabilities during the COVID-19 crisis. We urge one and all to watch it and spread the word about it. Over 900 people have already watched it. It remains available at any time to be watched on Youtube, with captioning and American Sign Language interpretation. The April 7, 2020 news release jointly issued by the AODA Alliance and the Ontario Autism Coalition summarizes some key recommendations coming from that virtual public forum.
Our virtual public forum has already secured media coverage including interviews with AODA Alliance Chair David Lepofsky on April 7, 2020 on News Radio 570 in Kitchener, and earlier today on News Radio 1310 in Ottawa.
MORE DETAILS
Toronto Sun April 8, 2020
Originally posted at https://torontosun.com/news/provincial/disabled-to-be-denied-covid-19-care
Disabled to be denied COVID-19 care?
Antonella Artuso
A document that has left people with disabilities “scared” they’ll be denied an intensive care bed or ventilator during the COVID-19 pandemic is just a “draft,” Ontario Health Minister Christine Elliott says.
The Clinical Triage Protocol for Major Surge in COVID Pandemic – a copy obtained by the Toronto Sun dated March 28 is not stamped with the word “draft” – sets out guidelines for health-care professionals as a “last resort” when allocating life-saving resources during a shortage.
Advocates say the document makes unfair value judgments about the quality of lives lived by those in the disabled community in violation of their human rights, and has left many of them fearful that they won’t be entitled to the same level of care as everybody else.
“A person’s disability should absolutely never be used as a criterion for deciding whether they get critically needed health care,” David Lepofsky, chair of the AODA Alliance, said Tuesday. “And certainly a doctor’s or nurse’s or EMT’s subjective view of the quality of living with a disability – compared to the quality of the life of somebody living without a disability – should never be a factor in these decisions.”
Advocates for the disabled are planning to release an open letter to the Ontario government Wednesday in protest.
Elliott acknowledged the existence of the document Tuesday but said it still needs to go through final review by government cabinet.
“I know that there have been some concerns that have been expressed by people with certain disabilities, that they would be cut out of treatment if we got to that point,” Elliott said. “I would never allow that to happen. People with disabilities are treated in the same way as everyone else, as they should be.”
This type of document, one that provides guidance on who should get advanced life-saving care, would only come into effect if all else failed, she said.
Robert Lattanzio, executive director of ARCH Disability Law Centre, said the document provides three levels of triage for health-care providers based on demand and resources.
Using the “frailty scale,” the framework doesn’t just look at who would benefit most from the care, but also calls on health professionals to consider factors like the quality of life of those with a disability, he said.
“That is where we cross a line that we cannot cross,” he said.
Lattanzio said he’s not aware that the protocol is currently in place, but he’s hearing from members of the disabled community aware of it and “scared” that they won’t get the care they need if they go to hospital.
“There’s a heightened sense of fear in the midst of everything else that is going on,” Lattanzio said. “All of our lives are turned upside down but for our communities, for people with disabilities, they are in the fight for their lives.”
aartuso@postmedia.com
April 8, 2020 News Release from the ARCH Disability Law Centre
For Immediate Release
Open Letter from Major Disability Organizations Calling on the Ontario Government to Ensure Persons are not Deprioritized from Accessing Critical Care Because of their Disability
TORONTO, April 8, 2020 – An open letter to the Ontario Government from over 200 disability and community organizations and over 4,800 individuals raises grave concerns about the Clinical Triage Protocol for Major Surge in COVID Pandemic (Ontario Health), dated March 28, 2020, because it threatens to deprioritize access to critical care to some patients due in part to their disability – a clear violation of the Ontario Human Rights Code.
The open letter, a link to which is provided below, explains that according to the Triage Protocol, people living with certain disabilities, such as Parkinson Disease, may be ranked as a lower priority when deciding who receives critical care. Similarly, the Triage Protocol indicates that in some circumstances, people who receive supports for daily living, such as those with moderate-to-severe cognitive impairments and the clinically frail elderly, are less likely to receive critical care.
“A person’s disability must not be used as a reason to deprioritize a person’s need for critical care, even during difficult periods of medical care shortages,” said lawyer Robert Lattanzio, Executive Director of the ARCH Disability Law Centre, a co-signatory to the letter. “Doctors, nurses, EMTs or other health care providers must ensure that their decisions are not informed by discriminatory assumptions or stereotypes about the ‘quality of life’ of a person with a disability. Increasingly, people with disabilities are fearful that this is what they are about to face. They desperately need the Government to make it loud and clear that this will not be tolerated.”
“Health care providers need clear, fair and ethically-sound direction in line with our human rights protections on what to do should decisions about scarce medical resources have to be made,” said Lattanzio. “We urge the Government to immediately withdraw this triage protocol, consult with disability communities, and ensure that any revised protocol includes a clear statement reaffirming human rights protections including the right to disability related accommodations and supports, and that disability will not be a factor in determining priority for critical medical treatment.”
Yesterday, this was one of the important issues discussed at a ground-breaking online Virtual Public Forum on what governments must do to meet the urgent needs of people with disabilities during the COVID crisis, available at https://www.youtube.com/watch?v=gJ23it9ULjc
It is important to keep in mind that some people with disabilities bear the disproportionate risk of getting this disease, the greater risk of severe medical consequences from it, and moreover at a higher risk of being denied critical care when needed most.
To view the Open Letter go to archdisabilitylaw.ca
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Contact:
Robert Lattanzio, Executive Director
ARCH Disability Law Centre
Toll-free: 1-866-482-2724 extension 2233
Email: lattanr@lao.on.ca
April 8, 2020 Open Letter to the Ontario Government on the Medical Triage Protocol
OPEN LETTER: Ontario’s COVID-19 Triage Protocol
April 8, 2020
Hon. Doug Ford, Premier of Ontario
Legislative Building
Queen’s Park
Toronto, ON M7A 1A1
Hon. Christine Elliott, Deputy Premier and Minister of Health of Ontario
College Park 5th Floor,
777 Bay Street, Toronto, ON M7A 2J3
Hon. Raymond Sung Joon Cho, Minister of Seniors and Accessibility of Ontario
Ministry for Seniors and Accessibility
College Park, 5th Floor
777 Bay Street, Toronto, ON M5G 2C8
Dear Hon. Premier Ford, Hon. Deputy Premier and Minister Elliott, and Hon. Minister Cho:
Re: Ontario’s Clinical Triage Protocol
We, the undersigned, share grave concerns regarding Ontario Health’s Clinical Triage Protocol for Major Surge in COVID Pandemic, dated March 28, 2020, which has yet to be released to the public. As disability organizations, we write in particular to underscore the disproportionate and adverse impact that the Triage Protocol will have on people with disabilities, and to make recommendations for reform.
The COVID-19 pandemic is disproportionately impacting persons with disabilities: our communities are more vulnerable to the virus and are being severely impacted by the necessary emergency response measures, like physical distancing, which interferes with the supports they need for daily living or is not altogether possible.
The Triage Protocol must respect the human rights of all persons, including persons with disabilities. Consultation with human rights experts and the marginalized communities of persons who are going to be disproportionately impacted by the Triage Protocol, must be conducted. Even though it is an emergency situation, the COVID-19 pandemic cannot be used as justification for discrimination.
To this end, we make the following specific recommendations:
- Persons with disabilities cannot be deprioritized for critical care on the basis of their disability
According to the Triage Protocol, some people will not get critical care because of their disability. For example, the Triage Protocol identifies particular disabilities, such as cognitive disabilities and advanced neurodegenerative diseases including Parkinson Disease, and Amyotrophic Lateral Sclerosis. Persons with these disabilities may in some stages of their disability be deprioritized in determinations about who receives critical care.
It is imperative that decisions about who receives critical care should be made using objective clinical criteria directly associated with mortality risks of COVID-19, and must not be based on stereotypes or assumptions about a person’s disability, and longer term mortality rates that are not directly related to COVID-19. It should also be made clear that by virtue of someone’s disability, they will not be deemed a lower priority and passed over for another patient who does not have a disability.
The Triage Protocol must clearly state that clinical judgment must not be informed by bias, stereotypes, or ableism
The Triage Protocol explicitly states that clinical assessments cannot take into consideration a patient’s socioeconomic privilege or political rank. As the health-care system has a long-entrenched history of ableism, the Triage Protocol must also explicitly state that implicit disability-based bias, stereotypes and ableist assumptions cannot factor into clinical judgment or assessment when allocating critical care resources. It must also make clear that decisions cannot be made on the basis of human-rights protected characteristics and intersecting identities. We understand that clinical judgment is an important part of the Triage Protocol, but there must be necessary safeguards to ensure that particular marginalized groups are not adversely impacted.
Persons with disabilities cannot be deprioritized for critical care based on the supports they receive for daily living
According to the Triage Protocol, persons with disabilities who receive accommodations or supports from others for daily living are in some circumstances less likely to receive critical care. This means that the Triage Protocol has the effect of deeming the lives of persons who require assistance as being less worthy, or assumes that they have a lesser quality of life. These kinds of criteria are discriminatory and devalue the lives of persons with disabilities. The Protocol invites value-based judgments on the basis of disability-related accommodations, which are a basic human right.
The Triage Protocol must clearly ensure that persons with disabilities receive necessary disability-related accommodations
The Triage Protocol does not have a clear statement that persons will receive necessary disability-related accommodations in the implementation of the Triage Protocol. Accommodations, such as interpretation, support or other services to access medical services, are a basic tenet of human rights law. Disability-related accommodations ensure that persons with disabilities have equal opportunity to receive, understand, and benefit from critical care.
We understand and appreciate that health care workers are working hard to care for all Ontarians, and a practical framework is required to help them make very difficult decisions about who gets critical care with some level of efficiency. We therefore support the development of a policy that respects human rights and has a fair procedure of decision making. We ask that any such framework not violate the basic human rights of persons with disabilities. The rationing of scarce resources in the health care system during this health crisis cannot be used as justification for discrimination.
Sincerely,
This letter has been signed by 204 organizations and 4828 individuals, as follows:
Organizations
- ARCH Disability Law Centre
- Access Independent Living Services
- Accessibility for All
- ACCKWA – AIDS Committee of Cambridge, Kitchener, Waterloo & Area
- Advocacy Centre for the Elderly
- AIDS ACTION NOW!
- AIDS Committee of Windsor
- ALS Society of Canada
- Alzheimer Society Durham Region
- Alzheimer Society Lanark Leeds Grenville
- Alzheimer Society of Niagara Region
- Alzheimer Society of Perth County
- Alzheimer Society Timmins-Porcupine
- Alzheimer Society Waterloo Wellington
- AODA Alliance
- Arthritis Society
- Autism Ontario
- Balance for Blind Adults
- BarrierFree Saskatchewan
- BC Aboriginal Network on Disability Society
- Brockville and District Association for Community Involvement (BDACI)
- Bellwoods Centres for Community Living
- Black Coalition for AIDS Prevention
- Black Legal Action Centre
- Bob Rumball Canadian Centre of Excellence for the Deaf
- Brampton Caledon Community Living
- Breaking Down Barriers Independent Living Resource Centre
- Bridges to Belonging
- Brockville & Area Community Living Association
- Camp Bowen Society for the Independence of the Blind and Deafblind
- Canadian Association for Community Living
- Canadian Autism Spectrum Disorder Alliance
- Canadian Council on Rehabilitation and Work
- Canadian Down Syndrome Society
- Canadian Federation of the Blind of Ontario
- Canadian Hard of Hearing Association
- Canadian HIV/AIDS Legal Network
- Centre for Independent Living in Toronto (CILT)
- Chatham-Kent Legal Clinic
- Chinese & Southeast Asian Legal Clinic
- Christian Horizons
- Citizen Advocacy Ottawa
- Citizens With Disabilities – Ontario (CWDO)
- Community Living Ajax – Pickering and Whitby
- CNIB Foundation
- Cochrane Temiskaming Resource Centre
- Communication Disabilities Access Canada
- Community Autism Centre Inc.
- Community Living Ajax Pickering and Whitby
- Community Living Algoma
- Community Living Campbellford/ Brighton
- Community Living Central York
- Community Living Chatham-Kent
- Community Living Dundas County
- Community Living Essex County
- Community Living Guelph Wellington
- Community Living Kincardine & District
- Community Living Kingston & District
- Community Living North Bay
- Community Living North Grenville
- Community Living Ontario
- Community Living Prince Edward
- Community Living Quinte West
- Community Living Toronto
- Community Living Upper Ottawa Valley
- Community Living Welland-Pelham
- Community Living West Nipissing
- Community living Windsor
- Community Living York South
- Community Living-Central Huron
- Community Resistance Intimacy Project (CRIP)
- Council of Canadians with Disabilities (CCD)
- Council of Canadians, Peterborough and Kawarthas chapter
- DANI
- Deafblind Community Services
- DEEN Support Services
- Disability Alliance BC
- Disability Justice Network of Ontario (DJNO)
- DisAbled Women’s Network Canada (DAWN)
- Dissociative Society of Canada
- Down Syndrome Association of Peel
- Down Syndrome Association of Toronto
- Down Syndrome Caring Parents of Niagara
- Down Syndrome Niagara
- Downsview Community Legal Services
- Durham Association for Family Resources and Support
- Durham Family Network
- Easter Seals Ontario
- Elevate NWO
- Empower Simcoe
- Empowered Kids Ontario – Enfants Avenir Ontario
- ensemble
- Erich’s Cupboard
- Ethno Racialized Disability Coalition Ontario (ERDCO)
- Extend-A-Family
- Extend-A-Family Waterloo Region
- Facile Perth
- Families for a Secure Future
- Family Alliance Ontario
- Family Respite Services
- Family Support Network for Employment
- Family Support Network (Newmarket/Aurora)
- Family Support Network (Total Communication Environment)
- Fetal Alcohol Spectrum Disorder Group of Ottawa
- Good Things In Life
- Guelph Independent Living
- Guide Dog Users of Canada
- Hamilton & District Injured Workers Group
- Hamilton Community Legal Clinic
- Hamilton Family Network
- Hand Over Hand Community Organization
- HIV & AIDS Legal Clinic Ontario (HALCO)
- Hydrocephalus Canada
- Independent Living Centre of Waterloo Region
- Inclusive Design Research Centre, OCAD University
- Income Security Advocacy Centre (ISAC)
- Independent Living Canada
- Independent Living Centre London and Area
- Injured Workers Community Legal Clinic (IWC)
- Intensive TLC
- Joyce Scott Non Profit Homes Inc.
- Kawartha Sexual Assault Centre
- KMK Law
- KW AccessAbility
- KW habilitation
- Lake Country Community Legal Clinic
- L’Arche Canada
- L’Arche Daybreak
- L’Arche London
- L’Arche Sudbury
- Live & Learn Centre
- London Down Syndrome Association
- March of Dimes Canada
- Marsha Forest Centre
- Mary Centre of the Archdiocese of Toronto
- Member Family Support Network TCE
- Middlesex Community Living
- Millennial Womxn in Policy
- Montage Support Services
- MPN Ontario Patient Support Group
- Muscular Dystrophy Canada
- National Coalition of People who use Guide and Service Dogs
- National Educational Association of Disabled Students (NEADS)
- National Network for Mental Health (NNMH)
- Network of Women with Disabilities NOW
- New Vision Advocates
- No More Silence
- Older Women’s Network / Living in Place Campaign
- Ontario Association for Developmental Education
- Ontario Association of Independent Living Service Providers
- Ontario Association of the Deaf
- Ontario Autism Coalition
- Ontario Disability Coalition
- Ontario Federation for Cerebral Palsy
- Ontario Health Coalition
- Ontario Independent Facilitation Network
- Options Northwest Personal Support Services
- Ontario Parents of Visually Impaired Children – VIEWS for the Visually Impaired
- Ottawa Carleton Association for Persons with Developmental Disabilities
- Ottawa Independent Living Resource Centre
- A.D.D. Parents of Adults who have Developmental Disabilities
- PACE Independent Living
- Pacific Training Centre for the Blind
- Parkdale Community Legal Services
- Parkdale People’s Economy
- Participation Lodge Grey-Bruce
- Peterborough Community Legal Centre
- Peterborough Health Coalition
- PHSS-Medical & Complex Care in Community
- PooranLaw Professional Corporation
- Prisoners with HIV/AIDS Support Action Network
- Project 321 Peel Down Syndrome Association
- Project Autism
- PWA (Toronto People With AIDS Foundation)
- Realize
- RISE: Resource Centre for Independent Living
- Scleroderma Society of Ontario
- Shannon Law Office
- Students for Barrier-free Access
- Sudbury Community Legal Clinic
- Tangled Art + Disability
- The AIDS Committee of Durham Region
- The AIDS Network
- The Canadian Arthritis Patient Alliance
- The FASD E.L.M.O. Network
- The George Hull Centre for Children and Families
- The Legal Clinic (Perth, Sharbot Lake, Brockville)
- The Neighbourhood Group
- The Organization of Canadian Tamils With Disabilities (OCTD)
- The Participation House Project, Durham Region
- Toronto Family Network
- Toronto Yachad – The Canadian Jewish Council for Disabilities
- Total Communication Environment
- Traverse Independence
- Universities Allied for Essential Medicines (UAEM)
- Viability Employment Services
- Vibrant Health Care Alliance
- Vision Loss Rehabilitation Ontario
- Waterloo Regional Down Syndrome Society (WRDSS)
- Windsor-Essex Family Network
- Workers United Canada Council
- Working For Change
- York Region Lifetime Independent Facilitation
- YWCA Hamilton
The original letter sent to the above noted recipients included a full list of individual signatories.