There is great concern about access to life-saving medical treatment for disabled people during the COVID pandemic, especially if so many people become very ill at once that there are not enough hospital beds and ventilators. But well before we have reached this point of crisis, two specific things are happening.
- Even before triage decisions need to be made, disabled people are being put at great risk, simply because their needs are misunderstood.
- The wrong people are being asked to make decisions about the value of life.
In simple language, we need to fight back, right away, against the devaluation of disabled people, and we need to ensure that simple and common-sense accommodations are offered to disabled people, so that they don’t die.
We are providing the information available to us at this time, some of which particularly relates to Ontario, Canada. This is a long inventory, with a lot of links.
We would ask that those who receive this – anywhere – please share it and respond by adding your insights and strategies.
So, first of all, protecting the lives of disabled children and adults involves ensuring equitable access to medical care – especially for those who require accompaniment, advocacy and accommodation for communication.
Natalie Spagnuolo and Michael Orsini have written about the harmful impact of physical/social distancing on those in institutional and other segregated settings here.
Virus protocols now dictate that no one can accompany patients during medical treatment. This does not just apply to treatment related to the virus, but also to routine medical procedures.
Some people require an ally or advocate to accompany them during medical procedures – sometimes 24/7, and especially to provide communication assistance, physical support and advocacy.
This is a disability-related accommodation – necessary for the life and safety of the individual – and thus is protected by Human Rights legislation.
We need to ensure that people who require this accommodation can be accompanied.
The World Health Organization’s Disability Considerations during the COVID-19 Outbreak also has many useful recommendations for disabled people and their households, as well as governments, health care workers, disability service providers and communities. This includes the recommendation to:
“Deliver sufficient support for people with disability with more complex needs, particularly if quarantined or isolated. When needed, coordinate care between health and social services, families, and caregivers.”
The COVID policy statement from the Ontario Human Rights Commission recognizes the obligation to:
“Ensure that public health and emergency measures consider accessibility and other needs of people with disabilities who face heightened susceptibility to contracting COVID-19 and may face extra challenges to obtaining services and supplies, and accessing food and other basic needs because of restrictive measures.”
Further, the Ontario Human Rights Commission statement about required actions includes the requirement to:
“Provide adequate health care, and ensure continuity of care-giving support relied on by older people and people with disabilities and others living in residential institutions.”
To defend the rights of disabled people, a collective of Canadian organizations sent recommendations to the Canadian government on March 24, 2020.
Ten of the recommendations relate to issues that are the responsibility of the Canadian government. Another ten recommendations relate to Canada’s provincial and territorial governments.
We want to call attention especially to this one:
“Ensure that hospitals make an exception to any blanket prohibition of visitors when a person with a disability requires assistance with vital services like communication, caregiving, or supported decision making.”
This is not what is happening at hospitals in the province. Please share this widely! If disabled people do not have physical and communication supports, they are at incredible risk.
We may need to convince health care providers that it is in everyone’s best interest to override generic COVID protocols so that someone may accompany patients who require assistance with communication and other support during medical treatment and hospitalization.
Those who accompany a disabled person can be screened and protected, just as other necessary health care providers are.
By assisting medical staff, they may create a safer environment for everyone, and reduce trauma and medical errors.
A U.S. resource about communication accommodation might save lives.
- explains your communication rights;
- provides tips on advocating for them, and
- has an accommodation request form you can bring to the hospital.
The ideas here can inspire better communication about communication, and strengthen advocacy about advocacy.
The references provided are to American law, but WE hope someone can adapt this resource for Canadian use.
Then, we need to carefully examine who is making decisions about the value of life.
Though it has not been released publicly, a document entitled Ontario Health’s Clinical Triage Protocol for Major Surge in COVID Pandemic – dated March 28, 2020 – was obtained by the Toronto Star.
All Ontarians, but especially people with disabilities, need to be very concerned about this document.
This Triage Protocol was developed by Dr. James Downer, “the former chair of the physicians advisory committee for Dying with Dignity, a Canadian euthanasia lobby group,” according to media reports and the Euthanasia Prevention Coalition.
ARCH Disability Law and its partners have drafted a response to Ontario’s Triage Protocol that will be sent to the Premier, Minister of Health and Minister of Seniors and Accessibility. Please share this widely, and ask organizations and individuals to endorse the letter (via that link) before it is sent on April 7th.
The ARCH response to Ontario’s COVID Triage Protocol includes the following four extremely important recommendations about protecting the lives of disabled people and ensuring access to medical care:
- Persons with disabilities cannot be deprioritized for critical care on the basis of their disability
- The Triage Protocol must clearly state that clinical judgment must not be informed by bias, stereotypes, or ableism
- Persons with disabilities cannot be deprioritized for critical care based on the supports they receive for daily living
- The Triage Protocol must clearly ensure that persons with disabilities receive necessary disability-related accommodations
Please read all of the details of those recommendations.
We would like to call particular attention to a key problem that must be corrected:
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.
Again, whether for routine medical issues, or for disabled people directly impacted by this virus, accommodations need to be in place. An incredibly scary logic has governed disabled people’s lives (and deaths) throughout recent history: when accommodations are taken away from them, they become much more vulnerable, much more likely to be constructed as expendable. Preparing for a health crisis by removing these accommodations pre-ordains extremely negative outcomes, and in fact begins to justify them.
A rights-based response to COVID-19 involves safeguarding lives and avoiding undue pressure for “Do Not Resuscitate” (DNR) orders. A March 27, 2020 Journal of the American Medical Association article about advance care planning seems slanted towards “avoiding nonbeneficial or unwanted high-intensity care” where life support decisions relate to others’ perceptions about “quality of life” and assumptions about “prolonged nursing home stay.”
During the pandemic, health services are often being provided through internet and telephone contacts. In a recent press release, the Euthanasia Prevention Coalition is concerned that laws might change to permit doctors to prescribe lethal drugs without examining patients.
On April 2, 2020 Globe and Mail columnist Andre Picard wrote: “if you have a loved one in long-term care and you realize that, if they fall ill with COVID-19, they may have a one in three chance in dying, it’s pretty clear what you should do. If you can, get them out while you still have a chance.” He said chances of contracting the virus are much higher in the institutions he called “seniors’ homes”, which he said “are much like cruise ships, except without the luxury. He called them “petri dishes” for the virus.
We know that many younger disabled people are forced to live in Ontario institutions intended for seniors. The related problems were documented and recommendations for change were made by the Ontario Ombudsman in 2016.
There is likely to be increased pressure to move disabled people to such institutions, to fill the many vacancies that will be available after the pandemic subsides.
So, this is an important time for any of us to communicate our advanced care directives. That may be done through establishment of a Personal Directive, through which we can specify now the health care decisions we may not be able to communicate on our own in the future. Here is an example that can be used in Nova Scotia – which could be adapted for use in Ontario. We can name someone to have Power of Attorney for Personal Care and write down our wishes to direct them. It would be helpful to share examples of clearly and strongly worded advanced care directives.
It would help to prepare a record of health concerns, medications and contact people to give to hospitals. But treatment might be more respectful and lives might be saved if we can also share an introduction in terms of strengths, interests, friends, communication strategies, etc. – through words and pictures that convey the ways a person participates and contributes.
We know that, first of all, even before triage decisions need to be made, disabled people are being put at great risk, simply because their needs are misunderstood. Extend accommodations now. Communicate accommodation needs as clearly as possible now.
Secondly, the wrong people are being asked to make decisions about the value of life. As disability advocate Alice Wong recently wrote, eugenics is not a relic from the past, so we need to be paying careful attention to medical protocols and procedures now: “Disabled people are not acceptable collateral damage in this pandemic… Time and ventilators are scarce, but we have the creativity, moral courage, and collective power to shape a world that has space for all of us.”