Accessibility for Ontarians with Disabilities Act Alliance Update United for a Barrier-Free Society for All People with Disabilities
Web: https://www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: https://www.facebook.com/aodaalliance/
June 7, 2021
Who watches the watchers? The AODA Alliance has had to do so, when it comes to monitoring media coverage or lack of coverage of the danger since the start of the COVID-19pandemic of disability discrimination in access to life-saving critical care in Ontario hospitals.
Since this danger was first revealed by disability advocates in early April 2020, we and others have been trying hard to get the media to cover this story. From the start, it has had all the hallmarks of a compelling news and public affairs story that is immediate, important and interesting. It has serious ramifications for millions of vulnerable people.
It is a life-and-death topic. It deals with secret Government policies and plans. It raises important human rights issues. Media scrutiny is an important way to hold public officials accountable.
For over a year, it has been an extremely uphill battle to get the media to cover this story. After months of effort, we managed to get some good local and national coverage in recent weeks. That shows how newsworthy it is. Yet the difficulties in even belatedly getting that coverage is itself worthy of attention and scrutiny.
The media often portrays itself as the public’s watchdog, but who watches the watchers? We offer an important illustration in this update.
As a powerful example, CBC’s flagship current affairs radio program The Current has refused to cover this story. That program has a great track record on diversity issues, such as those relating to women, Indigenous Peoples, racialized communities, and LGBT issues. It has chronically had a far worse record on covering disability issues. Its stated reasons for refusing to cover this story, documented below in an email from its executive producer to AODA Alliance Chair David Lepofsky, are transparently unpersuasive. One is left wondering what is really going on there. Read on.
In pointing to this example, we acknowledge with thanks that a number of news organizations have covered the issue of disability discrimination in Ontario’s critical care triage plans. Moreover, a number of journalists have tried to get their own media organizations to cover this issue, only to run into disturbing resistance. Moreover, some other CBC programs later did cover this story, though some gave it lesser or no examination.
This critical care triage issue remains a current story (pun intended). The Current should cover it, as should other news and public affairs programs that have not yet looked into it. Even with infection rates dropping in Ontario, there has still been no proper public accounting for the disability discrimination that has been embedded in Ontario hospitals and potentially in emergency ambulance services. With the pandemic’s surge in Manitoba, people with disabilities there now face the same dangers that Ontarians with disabilities have feared for months.
CBC at all levels needs to now carefully investigate and reflect upon its own troubling track record on covering disabilities issues, as it is serious failure to meet CBC’s commendable public commitment to diversity and equity in its coverage. This Update provides one stark and clear illustration of this broader failure. By this we don’t mean that CBC never covers disability issues. Rather, its attention to them pales in comparison to its coverage of other equity and diversity perspectives, as this Update’s example exemplifies.
To learn more about this issue, and to read the media coverage that we have managed to secure, check out the AODA Alliance’s health care page. You can also watch our newest captioned video on the critical care triage issue, which has been seen over 1,000 times in its first four weeks online.
1. The Current Is Certainly Not Current When It Comes to Disability Issues
Some two years ago, when the previous host of CBC’s program The Current was soon to retire, CBC held focus groups to get input into the future of The Current. AODA Alliance Chair David Lepofsky was invited to take part in one of those focus groups, to offer a disability perspective on the program. In preparation for that focus group, Lepofsky conducted a detailed review of months of broadcasts of The Current.
At this focus group (which looked at The Current from a wide range of perspectives), Lepofsky explained that this excellent CBC public affairs program does a great job of fulfilling CBC’s important public commitment to diversity in its coverage when it comes to some equity-seeking groups, such as racialized communities, Indigenous Peoples, women and the LGBTQ+ community. However, it has a poor record of far less attention to disability issues. Equity for some is in reality equity for none. No one disputed the observation that CBC’s The Current program has not given disability issues the kind of attention that it has repeatedly given other equity-seeking groups.
Sadly, nothing has significantly improved at The Current since that focus group two years ago, from the disability perspective. This is so even though we have sent the program any number of story ideas both before and after that focus group session.
The Current’s failure to address the disability issues in critical care triage during the COVID-19pandemic at any time over the past 15 months is a blistering illustration of this systemic failure. That program has commendably covered the pandemic from a multitude of perspectives. AODA Alliance Chair David Lepofsky sent The Current’s executive producer Raj Ahluwalia a detailed email on January 4, 2021, (set out below. It described this story idea, explained its importance, and offered to help the program look into it.
Raj Ahluwalia replied by email on January 5, 2021 (also set out below). He rejected the story as a topic for The Current. That rejection has never changed.
On January 8 and 18, 2021, AODA Alliance Chair David Lepofsky wrote him back (see below). He refuted The Current’s reasons for rejecting the story. Mr. Ahluwalia did not answer those emails. After this email exchange, The Current never reached out to the AODA Alliance to investigate the possibility of covering disability issues in critical care triage.
Raj Ahluwalia’s written reasons for rejecting this story are seriously flawed, both for reasons that David Lepofsky gave at the time, and in light of subsequent events. For example:
1. Mr. Ahluwalia told us that the critical care triage topic is not suited for the format of The Current. Yet Just 13 days later, on January 18, 2021, The Current devoted a segment of its program to the critical care triage issue. Moreover, as David Lepofsky pointed out to Mr. Ahluwalia, TVO’s The Agenda with Steve Paikin, a very similar TV public affairs program, devoted a 30-minute segment on January 13, 2021 to the disability issues in critical care triage. If it is suitable for The Agenda, it is hard to see why it would be unsuitable for The Current.
2. When The Current did discuss the critical care triage issue on its January 18, 2021 program, it did not include any disability experts or advocates. It only included physicians. The host Matt Galloway had a great record covering disability issues earlier when he had been the host of CBC’s Toronto radio program Metro Morning. However, in this edition of The Current, he asked no questions of the physicians he interviewed, that raised any of disability issues.
3. Mr. Ahluwalia wrote on January 5, 2021 that the disability critical care triage issue was not suitable because it was hypothetical i.e. No one had died from a critical care triage decision. Yet that reason did not stop The Current from interviewing physicians about critical care triage just 13 days later on its January 18, 2021 program. Moreover, as David Lepofsky pointed out to Mr. Ahluwalia, The Current has elsewhere covered hypothetical topics.
We point to this example not to single out this one senior, very experienced CBC executive. Rather, we point it out because it is the best, and possibly the only example where a refusal to cover this important disability issue is based on reasons that were put in writing for us. When the reasons given are so transparently unconvincing, one is left to wonder whether there were other reasons at play, even unconsciously.
We urge CBC at the highest levels to look into this, and to consider why it has failed to live up to its commitment to diversity in its coverage in the disability context, especially when it has done so much better at implementing its diversity goals for certain other equity seeking groups. We are encouraged that CBC weeks later gave more coverage on some other programs to the disability-related critical care triage issue. However, that coverage was the product of months and months of efforts by us and others to get CBC to cover it at all.
As stated earlier, equity for some is equity for none. Diversity for some, is diversity for none. Equality for some is equality for none. It merely replaces and old hierarchy with a new one. In the new one, just as in the old one, those left at or near the bottom, like people with disabilities, remain wrongly languishing at the bottom.
2. January 4, 2021 Email from AODA Alliance Chair David Lepofsky to CBC The Current Executive Producer Raj Ahluwalia
Happy new year Raj! In a nutshell, the story I’m proposing is summarized in the news release set out below. We can supply it to your program based on on-the-record and publicly-posted sources and multiple on-the-record people.
The issue is this: If the surging pandemic exceeds hospital capacity to provide life-saving critical care to all the patients who need it, who will be refused that care, and thus, who will die from a lack of health care? Who will decide who will be denied that care? What rules or standard will govern that life-and-death decision? Will there be any independent check is in place to protect patients, like an independent appeal process? Is there any foundation in law for any of this to take place in Ontario?
This is an important issue now. South of the border, NPR has done excellent investigative work revealing terrifying and appalling disability-based discrimination in access to critical care. Check out https://www.npr.org/2020/12/21/946292119/oregon-hospitals-didnt-have-shortages-so-why-were-disabled-people-denied-care People with disabilities are already fearful of going to hospital, even if no critical care triage is now going on, because they fear the danger of being de-prioritized now or in the near future.
We and other disability advocates have been waging an incredibly frustrating uphill battle on this issue for months. In the past weeks, it has gotten very little media coverage, including from CBC. We have no idea why. On the rare occasion that an opposition MPP or reporter probes the Ford Government on this issue, the Government scrambles, dodges or prevaricates. The whole record on this is available to you at www.aodaalliance.org/healthcare
People with disabilities are especially vulnerable here. They are disproportionately bearing the brunt of COVID-19 and are disproportionately dying from it. It would be a cruel irony indeed for them, of all people, to be exposed to the risk of disability-based discriminatory critical care triage. Happy to fill in the details any time. Please do not leave any voice mails on that number.
ACCESSIBILITY FOR ONTARIANS WITH DISABILITIES ACT ALLIANCE
NEWS RELEASE FOR IMMEDIATE RELEASE
Just-Revealed Previously Secret Recommendations for Rationing Critical Medical Care in Ontario that the Ford Government is Considering Are Frightening for People with Disabilities
December 21, 2020 Toronto: Could it soon be that if COVID-19 overwhelms Ontario hospitals, doctors could be told to decide to select some critical care patients to be taken off life-saving critical care that the patients are receiving, still need and want, on the ground that these services must be rationed and given to some other patients? Could a patient who objects to critical care being withdrawn from them be denied a right of appeal to an independent court or tribunal, even though their life is endangered? Could the health professionals making such decisions be insulated from any liability for their actions?
Despite excitement over new vaccines, frightening unreported new details have emerged that would allow all of this to happen, if the record-breaking surge in COVID-19 cases requires hospitals to ration or triage life-saving critical care services and beds. The Ford Government is considering a recommendation, made public on the AODA Alliance website, to direct doctors to remove life-saving critical care from some patients already in intensive care who don’t consent to this, if triage becomes necessary. This is even worse than rationing scarce unfilled critical care beds when more patients need them than there are available services.
Ford’s Government hasn’t shown it has legislative authority to take the drastic, highly-objectionable actions that it is considering, said David Lepofsky, Chair of the non-partisan AODA Alliance that allies with other disability advocates to protect patients with disabilities against discrimination if triage becomes necessary. Triage recommendations that Ford’s Government is considering just came to light in the past days, and only because disability advocates campaigned for three months to get the Government to reveal those secret recommendations.
In those newly revealed September 11, 2020 recommendations, the Government’s external advisory Bioethics Table commendably called on the Government to rescind the Government’s controversial earlier March 28, 2020 critical triage protocol that it had sent Ontario hospitals last spring, because that protocol discriminated against patients based on their disabilities a concern disability advocates have pressed since April. But last Thursday, at a rushed roundtable that the Ontario Human Rights Commission held with disability, racialized and Indigenous communities’ representatives, those community representatives said the newly revealed triage recommendations, while an improvement, also have numerous human rights problems, even though the recommendations say that human rights should be respected.
These new triage recommendations would give patients, whose lives are in jeopardy, no appeal beyond the health care system (e.g., to an independent tribunal or court). They would insulate health care professionals against liability for refusing or withdrawing life-saving critical care.
On October 29, 2020, the Government, under pressure from people with disabilities and seniors, belatedly rescinded its discriminatory March 28, 2020 triage protocol, but put nothing in place to fill the vacuum. The time when critical care triage may be needed is rapidly getting closer. Health Minister Christine Elliott hasn’t answered any of the six successive AODA Alliance letters to her extensively detailing our concerns.
At last Thursday’s roundtable, a Government representative spoke up for the first time, revealing more disturbing news. A member of the Ford Government’s internal Critical Care Command Table responded to feedback at the roundtable, saying that a new approach to triage, addressing human rights concerns raised at the roundtable (with which he seemed to find merit), would have to wait until after this pandemic is over.
That’s like saying we can be given an umbrella only after the rain has stopped. After months of the Government delaying, refusing to talk to us, and hiding behind its external advisory Bioethics Table for months, we cannot accept that it is now too late to ensure that critical care triage, if necessary, cannot be done without disability discrimination, said Lepofsky. We need the Ford Government to speak directly to us, and to obey the Ontario Human Rights Code and Charter of Rights.
Contact: AODA Alliance Chair David Lepofsky, [email protected] For more background on this issue, check out:
1. The Government’s external advisory Bioethics Table’s September 11, 2020 draft critical care triage protocol, finally revealed days ago.
2. The December 3, 2020 open letter to the Ford Government from 64 community organizations, calling for the Government to make public the secret report on critical care triage from the Government-appointed Bioethics Table.
3. The AODA Alliance’s unanswered September 25, 2020 letter, its November 2, 2020 letter, its November 9, 2020 letter, its December 7, 2020 letter, its December 15, 2020 letter and its December 17, 2020 letter to Health Minister Christine Elliott.
4. The August 30, 2020 AODA Alliance submission to the Ford Government’s Bioethics Table, and a captioned online video of the AODA Alliance’s August 31, 2020 oral presentation to the Bioethics Table on disability discrimination concerns in critical care triage.
5. The September 1, 2020 submission and July 20, 2020 submission by the ARCH Disability Law Centre to the Bioethics Table.
6. The November 5, 2020 captioned online speech by AODA Alliance Chair David Lepofsky on the disability rights concerns with Ontario’s critical care triage protocol.
7. The AODA Alliance website’s health care page, detailing its efforts to tear down barriers in the health care system facing patients with disabilities, and our COVID-19 page, detailing our efforts to address the needs of people with disabilities during the COVID-19 crisis.
3. January 5, 2021 Email from CBC The Current’s Executive Producer Raj Ahluwalia to AODA Alliance Chair David Lepofsky
Thanks for bringing it to my attention.
I’ve looked through some of what you’ve included here. And while I appreciate and understand your concerns and see that there may be a news story here but it doesn’t work for The Current.
Please allow me to explain.
The situation you describe is hypothetical. Unless there is an actual case of someone, disabled or not, who’s denied care in this manner, I have a hard time “seeing” where a story could editorially go.
I’m also not keen in comparing much from the U. S healthcare system with that of Canada’s. That’s not to say that we’re better than them, it’s just that the systems are so different that any comparisons are inaccurate.
As you may know our stories run anywhere from 12-to 20-minutues, usually through a series of interviews. And unless there were to be an actual case, as I mentioned, any real discussion of the issues you bring up won’t sustain that length of time on our program.
I will, however, keep your suggestions in mind should there be such a case.
4. January 8, 2021 Email from AODA Alliance Chair David Lepofsky to CBC The Current’s Executive Producer Raj Ahluwalia
Thank you for taking the time to explain why you do not consider the critical care triage story to be appropriate now for The Current. Exceptional as this may be, may I invite you to reconsider.
You said this story is hypothetical until triage of critical care actually takes place, leading a person to die from a refusal of critical care. Yet this issue is not hypothetical.
The top story on CBC national radio’s January 5, 2021 The World at 6 (within hours of your writing me) reported that in some Ontario cities, intensive care units are full and tents are being erected. The first line of that newscast reported that the health care system is stretched beyond capacity. It reported that urgent measures are being taken because the system reached the breaking point. Moreover, the US mainstream media is reporting that critical care triage is in fact happening in some US venues.
It is therefore not hypothetical that our society and health care system must ensure that it is ready to administer critical care triage in this pandemic, even if such triage has not taken place. It is not hypothetical that this is a difficult issue and that Ontario has no prior experience triaging life-saving critical care.
It is not hypothetical that the Ontario Government had a secret protocol prepared last spring for this very purpose. It is not hypothetical that the Government was eventually driven to rescind that protocol just weeks ago. It is not hypothetical that it was only rescinded after it was criticized as disability-discriminatory by disability advocates, by the Ontario Human Rights Commission and, eventually, by the very Bioethics Table that initially designed it.
It is not hypothetical that the Government has not announced a new protocol, and that it has been very secretive about this issue. The Government has not answered any of our letters this fall raising such concerns. It is similarly not hypothetical that some people with disabilities are afraid to seek out the health care system, for fear that they could end up being the victims of triage.
In any event, even if it were hypothetical, this should not be a reason to consider this story inappropriate for The Current. The Current has covered issues that are, by your terms, clearly hypothetical. On December 10, 2020, your program aired an item entitled: Trump Could Push Baseless Election Cheating Claims Well Past Inauguration, Says Journalist. Of course, that was an important topic to cover. However, by your definition of hypothetical, that story should not have run until after inauguration, and until Trump actually repeats his baseless claims at that time.
This story is well-suited for your program’s format, with which I, as a listener, am well familiar. Your program does not inflexibly always require an initial interview with a victim before an important issue is addressed. This meaty issue can fill your typical program time allocation with a great deal still left unaddressed. Ontario’s flagship provincial public affairs program, The Agenda with Steve Paikin aired a 26 minute item on the issue (with no disability advocates) back on April 14, 2020 that ran for a full 26minutes https://www.tvo.org/video/deciding-who-lives-ethics-in-a-pandemic
There is much more to say about the subject now, more than 8 months later. As one example, look at the coverage that has just gone online from one local Mississauga online publication, https://thepointer.com/article/2021-01-08/already-in-crisis-mode-ontario-hospitals-have-no-protocol-for-who-gets-priority-treatment-human-rights-advocates-say There are a number of people on different sides of this issue worth speaking to. We would be happy to assist your program in learning about those issues and seeking out people with whom to speak.
We regret that CBC news has, until now, not covered our issues that we have raised for months on this issue, despite numerous news releases, and tweets directed at CBC. As Canada’s public broadcaster, its failure to do so is troubling and puzzling.
We will continue to try to raise this with CBC news, but it remains a story that is extremely well-suited for The Current. Please let me know if you might reconsider, and if we can help.
5. January 18, 2021 Email from AODA Alliance Chair David Lepofsky to CBC The Current’s Executive Producer Raj Ahluwalia
It is good that The Current today included a discussion of the COVID-19 critical care triage issue, as this is an immediate and important story. The item included a discussion with two doctors expressing their views and concerns on this issue.
Could your program now consider including a discussion of this issue from the perspective of people with disabilities? That would provide a much-needed balanced look at it, especially since we have identified and documented serious disability human rights concerns with Ontario’s brand new secret triage protocol (one which we have posted on line). It is vital that this issue not be seen or treated as some preserve of doctors and bioethicists. People with disabilities are disproportionately bearing the hardships of COVID-19 and its harshest impact. They are at risk of the cruel irony of facing discriminatory deprioritization if they need critical care, once triage begins.
Two years ago, CBC invited me to take part in a focus group on the future of The Current. At that meeting, I detailed how The Current does an excellent job of addressing a spectrum of important issues on the issue of diversity from the perspective of a number of equality-seeking groups, for which it should be strongly commended. However, it is far weaker at covering important disability issues.
For you to get a good sense of how this story merits the disability perspective, and not just the medical/bioethics perspective, please check out the panel on which I participated last Wednesday on The Agenda with Steve Paikin, available at https://www.youtube.com/watch?v=qkq1NmaXLwk&feature=youtu.be
I’d be happy to do whatever I can to assist your program.
David Lepofsky CM, O. Ont
Chair Accessibility for Ontarians with Disabilities Act Alliance