The ARCH Disability Law Centre Sends the Ford Government An Excellent Analysis of the Government’s Seriously Flawed March 28, 2020 Medical Triage Protocol – Why Hasn’t The Government Already Held Its Promised and Overdue Public Consultation on Replacing That Problem-Ridden Protocol?


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

The ARCH Disability Law Centre Sends the Ford Government An Excellent Analysis of the Government’s Seriously Flawed March 28, 2020 Medical Triage Protocol – Why Hasn’t The Government Already Held Its Promised and Overdue Public Consultation on Replacing That Problem-Ridden Protocol?

May 14, 2020

          SUMMARY

Yesterday, the ARCH Disability Law Centre sent the Ford Government a letter that provides an excellent analysis of the serious disability rights violations in the Government’s widely-condemned March 28, 2020 medical triage protocol. We set it out below and applaud it. It can also be downloaded with all its footnotes from ARCH’s website. ARCH has also posted online a plain language guide to its May 13, 2020 letter to the Government on this topic.

With all the many disability concerns during the COVID-19 crisis that we have been rushing to address, what is this one all about, you ask? When the COVID-19 crisis was first exploding, the Ford Government was understandably worried that there was a risk that more people might get COVID-19 than our hospitals could handle. From the experience in some other countries, there was and is a risk that critical care medical services, like ventilators, might have to be rationed, if there were not enough ventilators for all the patients that need them.

As a result, the March 28, 2020 medical triage protocol was written and circulated within the medical and health care community. It was not made public. The disability community was not consulted in its preparation. It is our understanding that those preparing it only consulted physicians and bio-ethics experts. We have seen no indication that either the doctors or bioethicists they consulted had any knowledge or expertise in disability rights or basic human rights.

It is fortunate that within days, a copy of that secret protocol was leaked to some in the disability community. As a result, over 200 community organizations, including many disability organizations (such as the AODA Alliance) rapidly organized to sign the April 8, 2020 open letter to the Ontario Government, spearheaded by ARCH. That open letter identified grave concerns that this secret medical triage protocol would discriminate against some patients because of their disability.

The day before the public release of that open letter, this issue was first publicly revealed by Robert Lattanzio, ARCH’s executive director, when he spoke at the widely-viewed April 7, 2020 virtual town hall on COVID-19 and people with disabilities, that was organized by the AODA Alliance and the Ontario Autism Coalition.

One week later, fully one month ago today, one of the Ford Government’s lead authors of the secret March 28, 2020 medical triage protocol, Dr. James Downar, said it was a top priority for the Government to consult the public on this medical protocol. He spoke on the April 14, 2020 edition of TVO’s “The Agenda with Steve Paikin”.

The Government later reiterated a commitment to public consultation on this topic in an April 21, 2020 announcement. That Government announcement walked back the March 28, 2020 medical triage protocol, but without explicitly rescinding it and directing that it not be followed or used. The Government claimed the protocol was only a draft. That claim has no credibility, since the document was not marked draft when it was circulated to the medical community and health care system.

Despite those Government commitments, no public consultation has been held. We are waiting for it to start. It is commendable that since then, the Ontario Human Rights Commission took it on itself to reach out for input from some experts from within the disability community last week (including the AODA Alliance). It did so to assist the Commission in preparing for its input to that public consultation, whenever the Government might get it going.

We emphasize the following, building on the ARCH letter’s excellent points:

  1. ARCH’s May 13, 2020 letter to the Ford Government reaches this deeply-troubling conclusion about the Government’s secret March 28, 2020 medical triage protocol:

“In its current version, the Triage Protocol is in conflict with the rights of persons with disabilities pursuant to the Ontario Human Rights Code, the Charter of Rights and Freedoms (the Charter), and the United Nations’ Convention on the Rights of Persons with Disabilities.”

It is inexcusable that the Ontario Government could so seriously run afoul of such basic rights for vulnerable people with disabilities in the midst of a crisis. For it to do so when the Premier of Ontario has pledged to protect the vulnerable during this crisis is even more the case. This amply deserves front page headline coverage.

  1. How did this happen? We are eager to know if the Government got legal advice before that protocol was allowed to go in circulation within the medical community and the health care system. Had it not been leaked to the disability community, triggering the shared advocacy efforts from the grassroots, serious human rights violations could have gone undetected and unchecked.

The Government should commit that before it is adopted, any new medical triage protocol will be thoroughly vetted and approved by lawyers with expertise in human and constitutional rights, such as the Constitutional Law Branch at Ontario’s Ministry of the Attorney General. If they were not consulted in advance of the March 28, 2020 medical triage protocol being placed in circulation in the medical community, there has been a serious and deeply-troubling break-down in longstanding Government legal safeguards. This is all the more troubling when it relates to discrimination because of disability in relation to life-saving medical care.

The Government should also reiterate the commitment of Health Minister Christine Elliott that no medical triage protocol will be adopted without Cabinet approval.

  1. The Government must publicly, immediately, clearly and unequivocally rescind and retract the March 28, 2020 medical triage protocol. AODA Alliance Chair David Lepofsky and CILT executive director Wendy Porch addressed this during their May 8, 2020 interview on TVO’s “The Agenda with Steve Paikin”. The longer the Government fails to clearly rescind this the March 28, 2020 medical triage protocol and direct that it must not be followed, the more confusion it creates for doctors, nurses and others working in the health care system. Moreover, the longer the Government fails to clearly rescind this document and announce that it must not be followed, the longer some people with disabilities will understandably fear going to a hospital, if they are sick and need hospital care.
  1. By now, the Government or those it has engaged to help with the medical triage protocol no doubt have developed some sort of a revised draft medical triage protocol. As we have urged in the past, the Government should immediately make that draft public, in whatever state it is now, for input by the public including the grassroots disability community.
  1. The Government should now commit that the revised medical triage protocol will include all the key ingredients that the AODA Alliance outlined in its 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. Since we made it public one month ago, and widely publicized it on social media, we have received no feedback claiming that our proposals are incorrect or inappropriate.
  1. The long-overdue public consultation in this area must be entirely open, public and transparent. We have had far too much secrecy from the Government and those it engaged to develop this protocol. More secrecy will engender more public suspicion and distrust. Openness is a vital key to much-needed public confidence.
  1. The Government must act quickly to get this overdue public consultation going and to finalize a new medical triage protocol. It is good that Ontario has not yet reached the point of needing to resort to that protocol, because our hospitals have thankfully not been overrun with COVID-19 cases. However, we are certainly not out of the woods. With the Ontario Government moving to re-open the economy and gradually loosen restrictions on the public, the risk of a second or third wave of COVID-19 is a realistic possibility.

We fear that the Government’s political strategy in this area had been to wait for the “curve to flatten”, as it did, and then to offer a protracted public consultation in the hopes that this medical triage protocol issue and the Government’s initial serious mishandling of it would fade away and be forgotten. It has not faded away. It required and still requires prompt action. The continued governmental foot-dragging must end now.

For more background on this, we invite you to watch David Lepofsky’s and Wendy Porch’s May 8, 2020 interview on “The Agenda with Steve Paikin” and encourage others to watch it. In under a week, it has already gotten over 1,600 views on Youtube, in addition to the people who watched it on old-fashion TV or on podcasts. The link to this interview that we invite you to circulate is https://youtu.be/KmMlTrNbud8

Check out the AODA Alliance’s COVID-19 web page for all the news on our efforts to ensure that the urgent needs of people with disabilities are addressed during the COVID-19crisis.

There have been 469 days since the Ford Government got the ground-breaking 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 announced no comprehensive plan of new action to implement that report. That makes worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 50 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. The Premier’s office has not contacted us. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is worsened by that delay.

Send us your feedback! Write us at [email protected]. Please stay safe!

          MORE DETAILS

 The May 13, 2020 Letter from the ARCH Disability Law Centre to the Ford Government on the Medical Triage Protocol

ARCH Disability Law Centre

Sent via email to [email protected] and [email protected]

May 13, 2020

Hon. Christine Elliott, Deputy Premier and Minister of Health

College Park, 5th Floor

777 Bay Street

Toronto, ON M7A 2J3

Mr. Matthew Anderson

Chief Executive Officer

Ontario Health

Dear Hon. Minister Elliott and Mr. Anderson:

Re:       Ontario’s Clinical Triage Protocol for Major Surge in COVID Pandemic

 

We write further to the Open Letter dated April 8, 2020 and which was delivered to Premier Doug Ford, Minister of Health, Christine Elliott, and Minister of Accessibility, Raymond Cho. As you will recall, the Open Letter raised grave concerns regarding the Ontario Clinical Triage Protocol for Major Surge in COVID Pandemic[1] (the “Triage Protocol”), authored by Ontario Health, dated March 28, 2020 but never publicly released.

On April 21, 2020, ARCH Disability Law Centre, amongst other recipients, received a response from the Ontario Government. The Government’s letter, undated, stated that the Ministry of Health directed Ontario Health to consult with the Ontario Human Rights Commission (OHRC), as well as key human rights and community experts. In response, ARCH delivered a letter to Ontario Health on April 22, 2020 requesting additional information regarding any consultations, and requesting that a clear statement be made rescinding the March 28, 2020 draft Triage Protocol. ARCH continues to await a response from Ontario Health.

While ARCH welcomes the Government’s direction to Ontario Health to consult, little has been made public about the consultations, including the format of consultations, the timeline surrounding consultations, the groups – aside from the OHRC – that will be consulted, and when a finalized version of the Triage Protocol can be expected.

A further concern is that, despite stating that the current version of the Triage Protocol is a draft, the Government has taken no action to clearly withdraw the draft to ensure that it is not implemented should the medical system become overburdened whilst Ontario Health conducts consultations.

Notwithstanding the Government’s assertion that the Triage Protocol is undergoing consultation, ARCH is not aware of any such consultation nor has ARCH received any revised draft. ARCH strongly encourages input from communities of persons with disabilities through a formal and inclusive consultation process, and that any revised version of the Triage Protocol be made widely available to allow for a more fulsome and effective consultation. In the meantime, because time is of the utmost essence in the present circumstances, ARCH is taking this opportunity to provide its own submissions on the issues that must be addressed and resolved in any (newly) drafted Triage Protocol.

To note, ARCH recognizes that health care workers need a pragmatic and practical approach to assist them in making extremely difficult decisions in allocating critical care resources during this pandemic. However, as a collection of United Nations experts have made clear, “The scarcity of resources … should never be a justification to discriminate against certain groups of patients[2]. It is imperative that any critical care protocol developed by the Ontario Government, or any of its agencies, be founded upon human rights laws and principles, including the recognition that every person has an equal right to life-saving intervention and the right to be free of discriminatory denial of health care, including persons with disabilities.[3]

In its current version, the Triage Protocol is in conflict with the rights of persons with disabilities pursuant to the Ontario Human Rights Code,[4] the Charter of Rights and Freedoms (the Charter),[5] and the United Nations’ Convention on the Rights of Persons with Disabilities.[6] For the purposes of this brief, the discussion that follows focuses primarily on the Charter violations. The analysis then turns to the administrative and implementation considerations the Government must put in place to ensure that any critical care protocol does not infringe upon the rights of persons with disabilities. To conclude this brief, ARCH makes several recommendations that we urge the Ministry of Health, Ontario Health and any other organization that may be involved in drafting, to consider when re-drafting the Triage Protocol.

The Triage Protocol Violates the Charter

Any critical care protocol or health care scheme the Government chooses to put into place must comply with the Charter.[7] The Triage Protocol, and the tools it relies on to determine a patient’s prioritization in receiving critical care, must be considered through this lens.

In particular, the Triage Protocol states that allocation of critical care resources is dependent, in part, on the basis of the 9-point Clinical Frailty Scale (CFS).[8] The points range from Very Fit (score of 1) to Terminally Ill (score of 9), by taking into account disability-related factors such as activity levels[9] and the requirement for assistance in completing activities, as well as the use of mobility devices by some persons with disabilities, the ability to walk with assistance, and/or the use of a support person for personal care or finances. As will be demonstrated below, the inclusion of the CFS in the Triage Protocol violates the rights of persons with disabilities, pursuant to sections 15, 7, and 12 of the Charter.

Further, the Triage Protocol specifically identifies at least four different categories of disabilities, including cognitive disabilities and “advanced or moderate” neurodegenerative diseases including Parkinson Disease, Amyotrophic Lateral Sclerosis, and Metastatic Malignant Disease. Persons with these disabilities may in some stages of their disability be deprioritized from receiving critical care.

These tools, on their face and/or in application, do not comply with the Charter.

Section 15 of the Charter: Right to the Equal Protection and Equal Benefit of the Law without Discrimination

 

The Triage Protocol violates the right of persons with disabilities to be equal before and under the law, and to have equal protection and equal benefit of the law without discrimination, contrary to section 15 of the Charter. The “animating norm” of section 15 is substantive equality,[10] which responds to the reality that “persistent systemic disadvantages have operated to limit the opportunities available to members of certain groups in society and seeks to prevent conduct that perpetuates those disadvantages.”[11]

In addition to identifying specific disabilities for the deprioritization for critical care, the Triage Protocol draws a clear distinction for critical care on the basis of a CFS score. Persons who score higher on the CFS will be deprioritized from receiving critical care. Persons with disabilities are more likely to score higher on the CFS score, because of their general disability-related care needs and reduced activity levels. Meanwhile, a person without a disability is less likely to receive a high CFS score – it is only persons with disabilities who will fall within this scope. In this way, the CFS draws a clear distinction between persons with disabilities and abled-bodied persons.

It is widely recognized that healthcare systems tend to be structurally and systemically ableist.[12] Historically, and due to this, persons with disabilities have been denied equal access to health care[13] on the basis of stereotypes and the erroneous notion that disability is a flaw inherent in the individual.[14] The crux of the issue is in the often subconscious devaluing of the lives of persons with disabilities by medical practitioners.[15] This subconscious devaluing stems from the tendency of ableist quality of life presumptions to seep into medical practitioners’ decision-making process. These inequities persist today, and the pandemic has significantly exacerbated these disparities and erected further barriers; this includes the Triage Protocol which creates a decision-making framework built upon an ableist approach to disability. This is despite the fact that persons with disabilities may be particularly vulnerable[16] to COVID-19.

Interestingly, the Triage Protocol purports to be guided by the principal of fairness.[17] However, without contemplating substantive equality, the principle of fairness in the Triage Protocol is illusory at best. In this circumstance, fairness is understood as the treatment of all patients on an equal and fair basis by using clinically-relevant criteria to allocate resources. The Triage Protocol, however, fails to understand the difference between formal and substantive equality, and fails to appreciate the lived experience of persons with disabilities in their interactions with the medical system.

The inclusion of the guiding principles in the Triage Protocol leads to the very errors warned against by the Special Rapporteur on the Rights of Persons with Disabilities. As the Special Rapporteur stated, the health care sector has a tendency to reduce ethical debates “to an application of rules to situations in an oversimplified and legalistic manner, without a critical reflection of the role of human rights in bioethics and the power dynamics under which decisions are made.”[18] The inclusion of the guiding principles in the Triage Protocol, including the principle of fairness, is formalistic and fails to consider all the ways in which fairness is eroded by the treatment of persons with disabilities within the healthcare system.

Many persons with disabilities will be deprioritized and at risk of being denied access to critical care simply because the CFS deems them “severely frail” on the basis of their use of a mobility device, having a support person assisting them with activities of daily living, or having one of the disabilities identified by the Triage Protocol. These characteristics are not, as a rule, relevant to the person’s health status nor their overall mortality in the face of COVID-19. These same persons may very well be viable candidates for critical care despite the fact that they need assistance for daily living and personal care and/or use a wheelchair.

Persons with disabilities are not one homogenous group and the grouping of persons with disabilities into pre-determined categories of disability pre-empts and denies individual assessment to determine their need for critical care. For example, the Triage Protocol groups persons with cognitive disabilities[19] into one group, ignoring the fact that persons with cognitive disabilities can include persons labelled with intellectual disabilities, persons with developmental disabilities, persons with dementia, persons with acquired brain injuries, persons with fetal alcohol syndrome, etc. This kind of decision-making lends itself to the reliance upon labels, which can be laden with stereotypes and value judgments as to the quality of the patient’s life. This has the detrimental impact of denying a patient of individual assessment, which is necessary to ascertain their individual needs.[20]

In this respect, the Triage Protocol clearly has the effect of reinforcing, perpetuating, or exacerbating the disadvantage experienced by persons with disabilities. By deprioritizing persons from receiving care, the Triage Protocol, relying on the CFS, disconcertingly mimics the historical treatment of persons with disabilities in the medical system of isolation and exclusion, and being subject to ableist norms and value judgments about their quality of life. These criteria rely on damaging assumptions about persons who require assistance with aspects of daily living as having a lesser quality of life. This devalues the lives of persons with disabilities.

It is imperative that decisions about who receives critical care should be made using objective, individualized clinical criteria directly associated with mortality risks of COVID-19. Decisions must not be based on stereotypes or assumptions about a person’s disability, the value of quality of their life due to their disability, or longer term mortality rates that are not directly related to COVID-19.

Section 7 of the Charter: Right to Life and Security of the Person

 

The inclusion of the CFS in the Triage Protocol and the identification of specific categories of disabilities violates the rights of persons with disabilities to life and security of the person in a manner not in accordance with the principles of fundamental justice, contrary to section 7 of the Charter.

The effect of the Triage Protocol violates the rights of persons with disabilities to life. Persons who use mobility devices,[21] those who use support persons for daily living tasks and personal care,[22] those who walk with assistance,[23] or those who have a disability that is expressly identified, are more likely to be deprioritized from receiving critical care and are more likely to experience negative health outcomes, up to and including death.

Persons with disabilities who use mobility devices or walk with assistance include those who were born with disabilities or acquired them at a young age, such as persons with cerebral palsy, congenital amputations or who have survived childhood cancers. Persons who need assistance for daily living tasks can include persons labelled with intellectual disabilities who are able to live in the community with assistance from support workers. The use of the CFS inappropriately labels persons with these characteristics as “frail” which then deems them less likely to receive critical care when they most need it.

In identifying specific disabilities, the Triage Protocol invites the application of labels and value judgments to the quality of life of persons with disabilities. Instead of objective and individualized assessment, these labels and value judgements then become the starting point for assessing a patient’s likely morbidity.

The inclusion of the CFS and the identification of specific disabilities also violates persons with disabilities’ right to security of the person, contrary to section 7. In particular, knowing that they may be deprioritized or denied access to critical care has caused persons with disabilities psychological distress, and creates a disincentive to seek medical care, putting their security and their community at risk. Persons with disabilities are already experiencing the disproportionate effects of the COVID-19 virus,[24] and are more susceptible to the virus depending on the nature of their disability. The Triage Protocol means they must now endure the very real scenario that they may be denied critical care resources, at least in part, because they use a mobility device, require assistance with daily living tasks or require the assistance of a mobility device to walk.

This use of the CFS is overbroad, arbitrary and not in accordance with the principles of fundamental justice. This is especially true considering the purposes for which the CFS was designed and developed: for physicians to use in treating elderly patients.[25] It is accepted that the CFS has not been widely validated in populations younger than 65 years of age or for persons with disabilities.[26] Moreover, the CFS does not distinguish between frailty and disability, making it wholly inappropriate to apply to a subset of the population that has long-term disabilities, some of which may be progressive in nature.

In fact, several jurisdictions have already recognized the error in including the CFS in their Triage Protocols and have remedied their error by removing the CFS from any COVID-19 protocols and committed to an individualized assessment of each patient. We direct the Government’s attention, for example, to the United Kingdom,[27] where the use of the CFS has been challenged and the government has conceded the problematic nature of the CFS for the purposes of allocating critical care resources.[28] The Government and Ontario Health are encouraged to heed these lessons learned in other jurisdictions.

Section 12 of the Charter: Right Not to be Subjected to any Cruel and Unusual Treatment

The Triage Protocol violates persons with disabilities’ right to be free from cruel and unusual treatment, contrary to section 12 of the Charter. The CFS and the identification of specific disabilities intentionally targets an already vulnerable, disadvantaged and marginalized group in society that is more than likely to have been, or will be, impacted by the very virus to which this Protocol responds. This is demonstrative of treatment that is cruel and unusual.

The Triage Protocol draws a distinction between persons with disabilities and persons without disabilities for the purposes of allocating critical care resources in a manner that outrages the standards of decency. Again, we point to the disability-related need for assistance to walk as a marker of “frailty” according to the CFS. This is problematic and neglects the human-rights approach and understanding of disability. The effect of the inclusion of the CFS and identifying specific disabilities is to create a two-tiered access to critical care: one for persons with disabilities and one for persons without disabilities.

It is well established that persons with disabilities are entitled to access health care on an equal basis; this violation of the right to equal access, and by extension to ensure that the human dignity of persons with disabilities is not degraded, cannot be justified in light of the fact that society is currently battling a pandemic.

There is little doubt that the treatment of persons with disabilities, in accordance with this Triage Protocol, would be unacceptable to a large segment of the population, violates public standards of decency and propriety and, overall, shocks the general conscience. In short, the approach adopted by the Triage Protocol deprioritizes persons with disabilities and prioritizes persons without. In effect, this leads to cruel and unusual treatment of persons with disabilities because they have a disability.

The current version of the Triage Protocol is drafted in a manner as to call for a clinical assessment of the chance of survival that is comparative rather than individualized. The removal of critical care from a person with a disability who has a reasonable chance of survival in order to provide it to another patient who, by virtue of not having a disability, is deemed to have a better chance of survival[29] also amounts to cruel and unusual treatment. It is clear that the Triage Protocol does not explicitly state that persons with disabilities will be deprioritized or removed from receiving critical care in order for a person without a disability to receive it. However, the cumulative effect of including the CFS, the identification of specific disabilities in the exclusion chart, and the subconscious value-judgments inherent in the health care system that permeate the decisions made pursuant to the Triage Protocol, lead to a eugenic-adjacent approach to the pandemic. This is a clear violation of section 12 of the Charter.

Administrative and Implementation Precautions

The Government must take a number of active measures to ensure that persons with disabilities are not deprioritized in receiving critical care and to ensure that ableism is not perpetuated in emergency and critical care response measures. Without these active steps, the issues that stem from the current Triage Protocol will continue to have devastating consequential effects on persons with disabilities.

It is imperative that the Government is accountable and transparent throughout the development and implementation of the Triage Protocol. The Triage Protocol must include oversight and accountability mechanisms that are effective and timely to ensure that systemic safeguards are in place and operational throughout any period of implementation.

The current Triage Protocol was drafted without any known and public consultation undertaken by the Ministry of Health or by Ontario Health with communities and/or organizations of persons with disabilities who will be disproportionately impacted by the Triage Protocol.

It is beyond a shadow of a doubt that persons with disabilities are disproportionately impacted by COVID-19 and it is equally certain that the current Triage Protocol disproportionately impacts persons from various disability communities. As such, any direction by the Ontario Ministry of Health to Ontario Health to consult with key groups must include consultations with persons with disabilities specifically identified in the Triage Protocol. Any consultation conducted without affected persons with disabilities is ineffective and is more than likely to result in another Triage Protocol that infringes upon the rights of persons with disabilities, rights that are protected provincially, federally and internationally.

The Canadian Human Rights Tribunal has recognized the ways in which greater consultation with persons with disabilities may prevent similar discriminatory practices from occurring again in the future.[30] The Ministry of Health and Ontario Health are encouraged to heed this finding and embark on as broad as a consultation as possible by inviting persons with disabilities identified in the Triage Protocol to a seat at the consultation table.

Furthermore, under the CRPD, engagement with persons with disabilities is required in the development of law and policy, unless there is no disproportionate effect on them.[31] The preamble explains that “persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them”.[32]

In addition, article 4(3) elaborates that in the development of legislation and polices that affect persons with disabilities, State parties “shall closely consult with and actively involve” them through “representative organizations”.[33] This participation is also informed by the concept of intersectionality, to capture the lived experience of persons with disabilities who may experience particular impacts because of a combination of identities.

Recommendations

In light of the concerns raised above, ARCH makes the following recommendations to the Ministry of Health, Ontario Health and any affiliated authors of the Triage Protocol:

  • Remove any reliance on the Clinical Frailty Scale to make decisions about critical care allocation from the Triage Protocol as it is in violation of the Charter;
  • Remove any reference to specific disabilities as exclusion criteria from the Triage Protocol for the purposes of critical care allocation as it is in violation of the Charter;
  • In order to address the inherent inequities and ableism in the health care system, and the discriminatory effects of the Triage Protocol, it is imperative that the Triage Protocol include a clear statement of non-discrimination on the basis of disability;
  • In order to address the inherent inequities and ableism in the health care system, and the discriminatory effects of the Triage Protocol, it is imperative that the Triage Protocol include a clear statement of the duty to accommodate persons with disabilities in the delivery of critical healthcare services;
  • Develop oversight and accountability mechanisms through consultation with persons with disabilities. These may include any and all of the following or additional measures as appropriately adapted: systemic measures such as a timely and ongoing process to review and re-evaluate the implementation of the Triage Protocol to address any disproportionate impacts on persons with disabilities, the creation of an oversight committee that includes persons with disabilities, the collection of disability-specific and socio-demographic data and the public release of that data; and individual accountability measures such as a timely and effective process for immediate review of decisions with due process protections (such as reasons for decisions), the provision of advocacy support, and the provision of rights advice to individuals and their families of all available recourses; and
  • Any consultation undertaken by the Government, by Ontario Health, or any other Government ministry or agency for the purposes of drafting a critical care protocol in response to a health crisis must ensure that persons, or representative groups of persons, who will be disproportionately impacted by said protocol are consulted.

Sincerely,

ARCH DISABILITY LAW CENTRE

 

 

Robert Lattanzio

Executive Director

 

Cc:       Raymond Cho, Minister of Accessibility

Todd Smith, Minister of Children, Community and Social Services

Renu Mandhane, Ontario Human Rights Commissioner

[1] Ontario Clinical Triage Protocol for Major Surge in COVID Pandemic, March 28, 2020 [Triage Protocol].

[2] No exceptions with COVID-19: “Everyone has the right to life-saving interventions” – UN experts say, Press Release, March 26, 2020. Available: https://www.ohchr.org/EN/NewsEvents/Pages/NewsSearch.aspx?MID=SR_Disabilities

[3] Convention on the Rights of Persons with Disabilities, 30 March 2007, 2515 UNTS 3 at 70, Can TS 2010 No 8 (entered into force 3 May 2008, ratified by Canada 11 March 2010), at Article 25 [CRPD].

[4] RSO 1990, c H.19 [Code]

[5] The Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), 1982, c 11 [Charter].

[6] CRPD, supra note 3.

[7] Canadian Doctors for Refugee Care v Canada (Attorney General), 2014 FC 651 para 506; see also generally, Eldridge v British Columbia (Attorney General), 1997 CanLII 327 (SCC) [Eldridge].

[8] Triage Protocol, supra note 1 at 6.

[9] Score 4 on the Clinical Frailty Scale, for example, deems someone who feels tired during the day as being vulnerable; persons with disabilities such as lupus and muscular dystrophy fall within this CFS category since one of the manifestations of their disability is fatigue.

[10] See Withler v Canada, 2011 SCC 12 and Andrews v Law Society of British Columbia, [1989] 1 SCR 143.

[11] Kahkewistahaw First Nation v Taypotat, 2015 SCC 30 at para 17.

[12] Katie Savin & Laura Guidry-Grimes, Confronting Disability Discrimination During the Pandemic, April 2, 2020 available: https://www.thehastingscenter.org/confronting-disability-discrimination-during-the-pandemic/.

[13] Eldridge, supra note 7.

[14] Eldridge, ibid at para 56.

[15] United Nations General Assembly, Report of the Special Rapporteur on the rights of persons with

Disabilities, A/HRC/43/41, 17 December 2019, available: https://undocs.org/en/A/HRC/43/41 [“Report of the Special Rapporteur”].

[16] Savin & Guidry-Grimes, supra note 12.

[17] Triage Protocol, supra note 1 at 3.

[18] Report of the Special Rapporteur, supra note 15, at 6.

[19] The Triage Protocol uses “cognitive impairments,” which is not human rights language. For the purposes of this document, however, and to ensure clarity, the term “cognitive disabilities” is used throughout.

[20] See, for example: British Columbia (Superintendent of Motor Vehicles) v British Columbia (Council of Human Rights), 1999 CanLII 646 (SCC) and British Columbia (Public Service Employee Relations Commission) v BCGSEU, 1999 CanLII 652 (SCC).

[21] Scoring a 7 on the CFS, see Triage Protocol, supra note 1, at 10.

[22] Scoring a 5, 6, or 7 on the CFS, see Triage Protocol, ibid.

[23] Scoring a 6 on the CFS, see Triage Protocol, ibid.

[24] CBC News, COVID-19 death toll at Ontario long-term care homes nears 1,000, hospitalizations on the rise, May 3, 2020 available: https://www.cbc.ca/news/canada/toronto/ontario-sunday-covid-19-police-memorial-death-total-1.5553859

[25] Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I, Mitnitski A. A global clinical measure of fitness and frailty in elderly people. CMAJ. 2005 Aug 30;173(5):489-95; also see: https://www.dal.ca/sites/gmr/our-tools/clinical-frailty-scale.html

[26] National Health Service, Specialised Clinical Frailty Network, Frailty and Covid-19, available: https://www.scfn.org.uk/clinical-frailty-scale

[27] Hodge, Jones & Allen, News Release, NICE Amends COVID-19 Critical Care Guideline After Judicial Review Challenge, March 31, 2020 available: https://www.hja.net/press-releases/nice-amends-covid-19-critical-care-guideline-after-judicial-review-challenge/

[28] The Government’s attention is also directed to the states of Alabama, Tennessee and Washington in the United States for similar legal challenges to the identification of specific disabilities to be excluded or deprioritized from receiving critical care. Available: https://adap.ua.edu/uploads/5/7/8/9/57892141/al-ocr-complaint_3.24.20.pdf and http://thearc.org/wp-content/uploads/2020/03/2020-03-27-TN-OCR-Complaint-re-Healthcare-Rationing-Guidelines.pdf

[29] See for example, Triage Protocol, supra note 1, a 6, Exclusion Criteria Chart section (J), Triage Levels 1, 2 and 3.

[30] Hughes v Elections Canada, 2010 CHRT 4 at para 79.

[31] United Nations Committee on the Rights of Persons with Disabilities, General comment No 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention, 9 November 2018, CRPD/C/GC/7, available: https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD/C/GC/7&Lang=en at para 19 [General Comment No 7].

[32] CRPD, supra note 3, Preamble.

[33] CRPD, ibid, Art 4(3).



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Premier Ford Pledged to Protect the Most Vulnerable During the COVID-19 Crisis — Watch Online and Widely Circulate the May 8, 2020 Interview on TVO’s “The Agenda with Steve Paikin” Showing How Premier Ford is Repeatedly Failing to Protect Vulnerable Ontarians with Disabilities


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Premier Ford Pledged to Protect the Most Vulnerable During the COVID-19 Crisis — Watch Online and Widely Circulate the May 8, 2020 Interview on TVO’s “The Agenda with Steve Paikin” Showing How Premier Ford is Repeatedly Failing to Protect Vulnerable Ontarians with Disabilities

May 11, 2020

          SUMMARY

You can now watch the 20-minute interview on the May 8, 2020 episode of TVO’s “The Agenda with Steve Paikin” any time on YouTube. In just over a day after it aired, it had already gotten over 1,000 views and lots of positive feedback.

Ontario Premier Doug Ford pledged that his Government would protect the most vulnerable during the COVID-19 crisis. During this interview, AODA Alliance Chair David Lepofsky and the executive director of the Centre for Independent Living in Toronto (CILT) Wendy Porch explain in vivid detail how the Ford Government has repeatedly failed to protect the most vulnerable, namely the 2.6 million Ontarians with disabilities.

This video is now an important tool in our advocacy efforts for people with disabilities. You can quickly and easily use this interview to help us try to improve this situation. The public link to the interview is https://youtu.be/KmMlTrNbud8

Please take one or more of these steps today and get others to do so too!

* Share this link with your family and friends. Urge them to watch the interview and to share it with others they know.

* Post this interview link on your social media, like Twitter, Facebook and Instagram. Encourage your social media friends and followers to watch the interview and to share the link with their social media friends and followers. If you have done this already, do it again! Each social media reminder and blitz helps!

* If you are connected with a disability organization or group, or any religious or other community group, get them to post this link on their website and social media pages. Urge them to press the Ford Government to address the urgent needs of Ontarians with disabilities in its emergency COVID-19 planning.

* Email your Member of the Ontario Legislature. Send them this link. Demand that the Government address the urgent needs of Ontarians with disabilities during its emergency COVID-19 planning.

* Call the Premier’s office at 416-325-1941. Tell whoever answers your call that the Premier must address the urgent needs of Ontarians with disabilities in the Government’s emergency COVID-19 planning.

* Let your local media know about specific barriers and hardships that you know any people with disabilities are facing during the COVID-19crisis. During the interview on The Agenda with Steve Paikin, David Lepofsky and Wendy Porch only had time to talk about some of those serious hardships.

The media responds most readily to specific incidents that you bring to them. These can be shown to be part of a much bigger picture of recurring provincial failures to address our urgent needs. You can send your local media the link to the interview on The Agenda with Steve Paikin to show how much of a recurring issue this is for Ontarians with disabilities, and indeed, for people with disabilities across the country during COVID-19. Let the media know that they can contact us for more general background and comment. We are always standing by at [email protected]

Below we set out just one illustration of this. A family brought to the media the wrenching story of an Ontario hospital refusing to allow a patient with serious communication disabilities to use a vital communication aid for more than one hour a day, and the failure of the Ford Government to fix this barrier. We alerted you to that report in the May 6, 2020 AODA Alliance Update. We also reached out to the reporter to provide more background for a follow-up story that that reporter had decided to write. Below you can find the May 9, 2020 follow-up story in the May 9, 2020 Toronto Sun.

If a reporter wants more background, urge them to check out:

* The May 4, 2020 virtual Town Hall that the AODA Alliance and Ontario Autism Coalition held to share practical tips for teachers and parents on how to meet the urgent needs of students with disabilities  during the COVID-19crisis. In just one week since we held that event, it has gotten over 1,000 views.

* The earlier April 7, 2020 virtual Town Hall, also organized by the AODA Alliance and the Ontario Autism Coalition, which more broadly address the urgent needs of people with disabilities during the COVID-19 crisis.

* The April 30, 2020 letter from the AODA Alliance to Ontario Education Minister Stephen Lecce, which sets out a list of concrete and constructive requests for action that the AODA Alliance presented to Ontario’s Ministry of Education.

* The AODA Alliance’s education web page, that documents its efforts over the past decade to advocate for Ontario’s education system to become fully accessible to students with disabilities

* The AODA Alliance’s COVID-19 web page, setting out our efforts to advocate for governments to meet the urgent needs of people with disabilities during the COVID-19 crisis.

Believe it or not, there have been 466 days since the Ford Government got the ground-breaking 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 announced no comprehensive plan of new action to implement that report. That makes even worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 47 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. The Premier’s office has not contacted us. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is worsened by that delay.

Send us your feedback! Write us at [email protected]. Please stay safe!

          MORE DETAILS

Toronto Sun May 9, 2020

Originally posted at https://torontosun.com/news/local-news/levy-people-who-cant-communicate-treated-terribly-during-covid-19?utm_medium=Social&utm_source=Twitter#Echobox=1589067224

LEVY: People who can’t communicate treated terribly during COVID-19

Sue-Ann Levy

Tommy Jutcovich, a 69-year-old former educator with multiple systems atrophy, has been told by Toronto Grace Health Centre officials he can’t use his tablet — his sole means of communication — consistently throughout the day for fear it will act as a “surveillance” tool.

In British Columbia, a 40-year-old woman with cerebral palsy, Ariis Knight, died alone April 18 in a Vancouver hospital because her family was not permitted inside and she could not communicate without a family member or a caregiver. She didn’t have COVID-19.

Closer to home, my father-in law, who passed away a week ago (not from the novel coronavirus), was forced to enter hospital completely alone during the pandemic restrictions.

He was there for days without his caregiver, who would have ensured the less-than-compassionate doctors and nurses who saw him understood his medication and food needs. Despite several pleas from his daughters that the caregiver could be tested for COVID-19 and properly protected, the hospital adamantly refused to relent.

These are some of the heartbreaking stories of COVID-19, which have shone a light on the lack of proper practices by hospitals, long-term care and group homes to deal with people who are either unable to, or have trouble speaking for themselves, says a disabilities advocate.

Barbara Collier, executive director of Communications Disabilities Access Canada, says there have been very few policies for years and years to accommodate people with communications disabilities in the health-care system.

Without “explicit” guidelines, hospitals are taking it upon themselves to make decisions — often draconian and inflexible ones, I say.

“It’s the vulnerable groups that are completely marginalized and disempowered again because of this,” Collier said Saturday.

Tommy Jutcovich, 69, is bedridden in Toronto Grace hospital but staff are no longer allowing him unlimited use of his iPad — his lifeline to the outside world during the COVID-19 pandemic — because it is considered a “surveillance tool.” SUPPLIED PHOTO/FAMILY Supplied photo / Family

“This is happening in every hospital across Canada for years and years and we didn’t have good policies in place to ensure people could effectively communicate.”

There are at least 500,000 people with speech and language disabilities in Canada — including those on the autism spectrum or suffering from cerebral palsy, strokes, Parkinson’s disease, early dementia, MS, Lou Gehrig’s disease and people such as Tommy Jutcovich, who has multiple systems atrophy, Collier said.

She said most people have a “fair idea” of the duty to accommodate those with disabilities when it means getting into a building or opening a door, or with those who are deaf or have visual impairments.

The “missing piece” is how accommodation is handled (or mishandled) for those who have a speech and language disability — those with little or no speech, or who have difficultly comprehending information before providing informed consent.

Collier says the hospital “no visitor policy” is denying patients access to support people who can assist them with communication.

“There are many people who haven’t fared well in a health-care setting if they don’t have somebody who can interpret their speech or provide access to their visual display or iPad,” she said.

“The support people are not visitors, they’re essential.”

She said caregivers or support people could easily be “gowned-up” to protect their safety against this vicious virus.

She says those with disabilities should have the right to a range of communication aids available to them in hospital or in long-term care homes.

Collier adds that speech language pathologists should also be stationed around the hospital to help those with communication issues so they understand their treatment and are truly able to give informed consent.

She said the Toronto-based ARCH Disability Law Centre just released a COVID-19 tool kit that helps those with disabilities advocate to have their support person or communications assistant with them while in hospital — in other words to have an exemption from the hospital ban.

[email protected]



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Watch TVO’s “The Agenda with Steve Paikin” Tonight at 8 or 11 PM for an Interview on the Impact of the COVID-19 Crisis on People with Disabilities – and More News on the COVID-19 and Disability Front


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Watch TVO’s “The Agenda with Steve Paikin” Tonight at 8 or 11 PM for an Interview on the Impact of the COVID-19 Crisis on People with Disabilities – and More News on the COVID-19 and Disability Front

May 8, 2020

          SUMMARY

 1. TVO’s “The Agenda with Steve Paikin” Again Focuses Attention on Disability Issues Tonight

We invite you to watch TVO’s flagship current affairs program “The Agenda with Steve Paikin” tonight at 8 or 11 pm Eastern time for a 20-minute interview on the impact of the COVID-19 crisis on people with disabilities. The guests are AODA Alliance Chair David Lepofsky and Wendy Porch, the Executive Director of the Centre for Independent Living in Toronto (CILT). Ms. Porch was one of the 10 excellent experts who spoke at the first virtual Town Hall on COVID-19 and people with disabilities that the AODA Alliance and Ontario Autism Coalition held on April 7, 2020.

This program will air on good old-fashioned TV (for those who use it). It will also stream tonight at 8 pm on the Twitter feed and Facebook page of The Agenda with Steve Paikin.

We thank The Agenda with Steve Paikin for again focusing attention on our accessibility campaign. Topics addressed in this interview include such things as the disproportionate impact of COVID-19 on people with disabilities, the additional barriers and hardships facing people with disabilities during this crisis in our health care and education systems, the troubling March 28, 2020 provincial medical triage protocol that the Ford Government has failed to categorically rescind and replace, and the pressing need for the Ford Government to quickly create a comprehensive plan to address the urgent needs of people with disabilities as part of its COVID-19 emergency planning. We wish to especially commend The Agenda and Steve Paikin for its and his unremitting journalistic integrity, exemplified by affording us a fair and open opportunity in this interview to speak to accessibility concerns with TVO’s online educational resources.

We encourage you to:

* Spread the word to your friends and family and encourage them to watch this interview.

* Spread the word far and wide about this interview on Twitter, Facebook and other social media. You might wish to retweet the tweets that we will be circulating on this topic. Follow us on Twitter: @aodaalliance. On Facebook: www.facebook.com/AODAAlliance/

* Urge your member of the Ontario Legislature to watch this interview.

Typically, within a day or two after TVO airs this program, it gets posted on Youtube. Good captioning usually gets added then or a short time thereafter. When this gets posted on Youtube, we will share that link in an AODA Alliance Update and on social media for you to use and share with others.

* Urge your local media to cover this issue too. Bring them stories about specific additional hardships that people with disabilities are shouldering during the COVID-19 crisis. Invite them to reach out to us at the AODA Alliance for a comment on the need for the Ford Government to effectively plan to meet the urgent needs of people with disabilities as part of its COVID-19 emergency planning.

 2. Two Glimmers of Some Preliminary Progress on the Education Front

If you have not already watched it, join the hundreds of others who have already watched our May 4, 2020 virtual Town Hall on meeting the urgent learning needs of students with disabilities during the COVID-19 crisis while schools are closed and learning has moved online. We have asked the Ford Government to post a link to that event on its “Learn at Home” website, and to circulate it to all school boards. We await word on what the Government has done or will do to share this important resource with frontline teachers and parents who are trying to cope with the additional disability barriers that students with disabilities face due to the move to online schooling.

Eight weeks into this COVID-19 crisis, here are glimmers of some preliminary progress: First, in yesterday’s May 7, 2020 AODA Alliance Update, we reported to you on our efforts to get TVO to fix the accessibility problems with its online educational content for K-12 students. This is especially important, since the Ford Government points to TVO as its partner in delivering online education during the COVID-19 crisis.

Within hours of writing TVO again about this yesterday, we received a response from TVO’s vice president of digital content, inviting a conversation with us. We are taking TVO up on this offer and will keep you posted.

Second, we are pleased to let you know that the Ford Government has resumed the work of at least some Standards Development Committees. On May 5 and 6, 2020, the K-12 Education Standards Development Committee held productive online virtual meetings. As part of this, Education Minister Stephen Lecce and Accessibility Minister Raymond Cho, as well as three of the relevant Parliamentary Assistants, took part in a one-hour portion of the May 6, 2020 meeting of that AODA Standards Development Committee.

Committee members were given time to share information on the impact of the COVID-19 crisis on students with disabilities and to recommend needed actions. Given the time available, a five-minute time limit was understandably set for each speaker.

AODA Alliance Chair David Lepofsky, as a member of that committee, had five minutes to speak. He emphasized that the Ministry of Education has left it to each school board to reinvent the wheel, figuring out how to serve their students with disabilities. That is extremely inefficient and wasteful. He emphasized the need instead for a provincial plan to meet the urgent needs of students with disabilities. He urged the Government to organize more virtual town halls like we and the Ontario Autism Coalition did on May 4, 2020, to gather good ideas from the frontline teachers and parents, and to share them across all school boards. He reiterated our repeated offers to help the Government. He asked Education Minister Lecce for a chance for the two to speak. Minister Lecce said he was open to a dialogue with AODA Alliance Chair David Lepofsky.

We commend the Government for arranging that Standards Development Committee meeting. We have been pressing for it since as far back as March 25, 2020, when we wrote the Premier.

Third, we are encouraged by the fact that the K-12 Education Standards Development Committee has now set up a sub-committee to address the issue of COVID-19 and the education system. AODA Alliance Chair David Lepofsky will be a member of that sub-committee. We wish that this had happened much sooner, given that it was fully eight weeks ago that the Ford Government announced school closures.

Finally, in the wake of these events, AODA Alliance Chair David Lepofsky has had some exchanges with the Deputy Minister of Education and will be following up on this to press our concerns. For more background, check out:

* The April 30, 2020 letter from the AODA Alliance to Ontario Education Minister Stephen Lecce, which sets out a list of concrete and constructive requests for action that the AODA Alliance presented to Ontario’s Ministry of Education.

* The AODA Alliance’s education web page, that documents its efforts over the past decade to advocate for Ontario’s education system to become fully accessible to students with disabilities

* The AODA Alliance’s COVID-19 web page, setting out our efforts to advocate for governments to meet the urgent needs of people with disabilities during the COVID-19 crisis.

 3. Two More Important Media Reports on COVID-19 and People with Disabilities

We set out below two recent news media reports that address the impact of COVID-19 on people with disabilities, namely:

* A May 6, 2020 report on the Global News website by reporter Emerald Bensadoun on a range of hardships falling on people with disabilities during the COVID-19 crisis. In this article, the Ministry of Education is quoted as giving this response to our concerns about the lack of an effective provincial plan for meeting the urgent learning needs of students with disabilities during the COVID-19 crisis:

“When asked about this, the Ontario Ministry of Education said in a statement to Global News that Education Minister Stephen Lecce had convened two “urgent” discussions with the Minister’s Advisory Council on Special Education where they discussed how best to support students and families during this period and has consulted the K-12 Standards Development Committee struck by the Ministry for Seniors and Accessibility. They said all resources were reviewed for accessibility based on the standards of the Accessibility for Ontarians with Disabilities Act (2005), but that school boards were ultimately responsible for making decisions on the use of digital learning resources and collaboration tools to support students’ learning online.

‘The Ministry has provided clear direction to school boards on how to support students with special education and mental health needs during school closures,’ they said.”

We respond as follows: A cursory review of the online resources that the Ford Government has shared for learning at home reveals a range of accessibility problems. We question how carefully the Government ever checked these for accessibility. The Government’s obligation is not only to obey the weaker AODA accessibility standards but the stronger accessibility requirements in the Ontario Human Rights Code and the Canadian Charter of Rights and Freedoms.

It is good that the Minister of Education earlier Consulted his Minister’s Advisory Committee on Special Education, but that committee has had a substantial number of vacancies. There is no indication what advice the Government received from that committee or to what extent, if any, the Government acted on that advice.

* A May 7, 2020 Canadian Press article by reporter Michelle McQuigge, appearing on the CityTV News website. In the face of reported serious problems for patients in hospital with communication disabilities, the article reported in part as follows, as a response from the Ford Government:

“The Ontario Ministry of Health confirmed it can only issue guidance to hospitals, which are described as corporations with autonomy to set their own policies.

Current directives from provincial public health officials urge health-care providers to limit visitors to just four narrow categories, none of which address the communication needs of disabled patients.

But a spokeswoman said the ministry will be ‘reviewing the current directives and guidance that have been issued to the health system’ as the province continues to monitor the COVID-19 outbreak.”

We comment that the provincial government has lead responsibility here. The Health Ministry suggests its hands are somewhat tied in what it can direct Ontario hospitals to do. This disregards the reality of what is going on during the COVID-19 crisis. The Ontario Government has ample capacity to direct hospitals and is doing this right now with other facets of the COVID-19 crisis. It is wrong for the Ford Government’s Health Ministry to selectively duck its responsibility when it comes to the vital needs of highly vulnerable hospital patients with communication disabilities.

 4. The Ford Government’s Foot-Dragging Continues

There have now been a disturbing 463 days since the Ford Government received the ground-breaking 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 announced no comprehensive plan of new action to implement that report. That makes even worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 44 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. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is worsened by that delay.

Send us your feedback! Write us at [email protected]. Please stay safe!

          MORE DETAILS

 Global News Online May 6, 2020

Originally posted at https://globalnews.ca/news/6906216/coronavirus-canadians-disabilities/

‘I need help’: Coronavirus highlights disparities among Canadians with disabilities – National

BY EMERALD BENSADOUN- GLOBAL NEWS

Prior to the novel coronavirus pandemic, 27-year-old Marissa Blake was rarely ever home. Now, Blake, who lives in Toronto supportive housing and needs assistance to walk, can only have one visitor a week for three hours and can’t see her friends in-person. An appointment to discuss surgery on her legs was cancelled, and her sleep and care schedule are in flux because her personal support workers keep changing.

“It’s difficult,” she said. “I feel like I’m in jail.” Disability advocates say B.C.’s woman’s death shows need for clearer COVID-19 policy Her exercise program with March of Dimes Canada, a rehabilitation foundation for disabled persons, was cancelled, and Blake said she’s been less physically active than usual.

“It’s been really making me tight, really making me feel like I’m fighting with my body,” she said. “I can’t just get up and walk. I need help.”

But for Blake, isolation and exclusion are having the largest impact. “The biggest thing for me is support,” she said.

“I miss my friends. I miss interacting with people. Because when you look at a computer, it’s great but it’s not the same as seeing them face-to-face.”

One in four Canadians — about 25 per cent of the population — has a disability, according to the latest data from Statistics Canada. Despite this, advocates say they are often left out of emergency planning.

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

A person who is deaf wouldn’t hear the fire alarm. A person in a wheelchair would be trapped inside. And those designated markers will do nothing for someone who can’t see. Unless they receive support, Lepofsky said anyone with disabilities living in the building will likely not survive. Similarly, he said the government has applied a mostly one-size-fits-all approach to

COVID-19 measures that offer little support the country’s disabled.

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

Often, Canadians with more severe disabilities will get placed in long-term care facilities, where health officials said over 79 per cent of COVID-19-related deaths occur. Lepofsky said that poses a danger to those with disabilities, as well. He said comparable problems arise in Ontario’s virtual elementary and secondary education system, called Learn At Home. The program isn’t user-friendly for students with disabilities who may be deaf, blind or unable to use a mouse, said Lepofsky. Despite making up upwards of one-in-six of the student population, he said much of the program was made with only able-bodied students in mind.

When asked about this, the Ontario Ministry of Education said in a statement to Global News that Education Minister Stephen Lecce had convened two “urgent” discussions with the Minister’s Advisory Council on Special Education where they discussed how best to support students and families during this period and has consulted the K-12 Standards Development Committee struck by the Ministry for Seniors and Accessibility. They said all resources were reviewed for accessibility based on the standards of the Accessibility for Ontarians with Disabilities Act (2005), but that school boards were ultimately responsible for making decisions on the use of digital learning resources and collaboration tools to support students’ learning online.

“The Ministry has provided clear direction to school boards on how to support students with special education and mental health needs during school closures,” they said.

March of Dimes Canada president Len Baker said even before the existence of COVID-19 that people with disabilities were facing “significant” challenges every day, including already-existing barriers like attitudinal ones about disability.

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

Baker said around 50,000 students with disabilities rely on the organization for opportunities to read, learn skills, get out in the community, to participate and connect with others. But since the pandemic started, he said they’ve had to revamp their services to be available virtually or over the phone.

Marielle Hossack, press secretary to the minister of employment, workforce development and disability inclusion, said in a statement to Global News the federal government has increased human resources for support services for Canadians with disabilities over the phone and online, and is looking into implementing ALS and LSQ into current and future emergency responses.

The federal government has also established the COVID-19 Disability Advisory Group, which is comprised of experts in disability inclusion, that provide advice on “real-time live experiences of persons with disabilities.” Hossack wrote the group discusses disability-specific issues, challenges and systemic gaps as well as strategies, measures and steps to be taken.

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

Karine Myrgianie Jean-François, director of operations at DisAbled Women’s Network Canada, told Global News that despite making up such a large percentage

of the population, many are not getting support services typically provided by provincial health departments or social services. This is due to a lot of factors, she said — because there’s a lack of protective equipment, because people are getting sick, because it’s too dangerous. For children with disabilities, Jean-François said the pandemic means they’re often relying on their parents for mental and physical support they would have received at school.

“A lot of the measures that have been made to prepare for this pandemic have been done to think about the greatest number of people, which often means that we forget about people who are more marginalized and people who have a disability are included in that,” she said.

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

The money “doesn’t go as far as it used to,” she said. When factored to include the rising cost of living, Jean-François said most Canadians with disabilities — many of whom are already living at or near the poverty line — end up barely scraping by. “We’re not all equal under COVID-19,” she said. “We need to be looking at… who stands up to make sure that people get what they need, and how to make sure that they’re supported in what they’re doing both financially but also mentally, because it’s really hard work to support people who were left alone.”

 City TV News Online May 7, 2020

Originally posted at https://toronto.citynews.ca/2020/05/07/pandemic-highlights-existing-barriers-for-those-with-communication-disabilities/

Pandemic highlights existing barriers for those with communication disabilities

BY MICHELLE MCQUIGGE, THE CANADIAN PRESS

The COVID-19 pandemic has highlighted long-standing barriers preventing Canadians with communication disabilities from fully accessing the health-care system, according to advocates across the country who are calling for governments to address the issue.

Organizations and individuals point to recent cases in which disabled patients were denied access to crucial communication supports while in hospital, leaving them unable to interact with loved ones or medical professionals.

They say the two incidents — one of which involved the death of a 40-year-old woman — highlight the inconsistent approach to such issues in hospitals across Canada and should prompt governments to set uniform standards to protect disabled patients.

Heidi Janz, an Edmonton-based professor at the University of Alberta who has cerebral palsy and uses a wheelchair, said the precautions put in place to limit the spread of COVID-19 have exacerbated the struggles people relying on alternative means of communication face on a daily basis.

“It terrifies me — on an advocacy level, but also on a personal level,” Janz said in an interview conducted with the support of an aide who echoed her words. “I have experience with the kind of inability to communicate with a medical team and the fear that comes with that.”

The two recent cases, which Janz said hint at “a disaster waiting to happen,” played out in different parts of the country and involved patients who were hospitalized for reasons not related to COVID-19.

The family members of both patients either could not be reached or did not respond to request for comment, but advocacy groups familiar with the cases note the similarities.

In one instance, a 40-year-old woman in British Columbia with cerebral palsy died alone in hospital last month. Pandemic-protection policies at the facility barred support workers who usually assisted her in communicating from entering the premises.

In another case, a Toronto man who used an iPad to stay in touch with his relatives saw his use of the device unexpectedly limited to one hour a day. Multiple local media reports cited hospital officials alleging the iPad could be used as a surveillance tool.

Janz and other Canadians with communication disabilities said these cases are horrifying but not surprising.

Janz said she refuses to go to an emergency room without someone there to help her convey her wishes to medical staff, noting health-care workers often make assumptions about her capacity to weigh in on her own care based on her disability.

Anne Borden, co-founder of the autism self-advocacy organization Autistics for Autistics, said people who rely on communication devices face similar barriers.

Medical staff are not always aware of the need to recognize augmentative and alternative communication — tools that supplement or take the place of speech. She said non-verbal patients frequently have their need for assistive technology questioned or ignored, or watch in frustration as medical staff address remarks to a support person rather than directly to the patient.

The issues are compounded, she said, for those living in poverty and without access to technology and other supports.

Both Janz and Borden feel Canadian governments should emulate the state of California, which recently broadened its restricted list of visitors allowed inside during the pandemic to include support people for patients with physical, intellectual and developmental disabilities.

“Communication is a human right,” Borden said. “What we want is an acknowledgment that that is also true for disabled people, and it should be across the board.”

Advocates said there are currently no uniform standards to follow in Canada, leaving hospitals free to develop their own policies.

Barbara Collier, executive director of Communication Disabilities Access Canada, said that has to change. She said health-care facilities across the country should be given direction on everything from establishing a patient’s communication needs during intake to policies around support workers, adding these long-standing gaps take on additional urgency as the COVID-19 pandemic continues to unfold.

“This should have been in place years ago,” she said.

The federal ministry responsible for disability inclusion did not immediately respond to request for comment.

The Public Health Agency of Canada released a document on Thursday addressing various aspects of the COVID-19 pandemic and their impact on disabled Canadians. It said health-care providers should be “ensuring that restrictions account for people with disabilities’ needs and allow essential support staff, sighted guides, interpreters and/or family members to be with them.”

The Ontario Ministry of Health confirmed it can only issue guidance to hospitals, which are described as corporations with autonomy to set their own policies.

Current directives from provincial public health officials urge health-care providers to limit visitors to just four narrow categories, none of which address the communication needs of disabled patients.

But a spokeswoman said the ministry will be “reviewing the current directives and guidance that have been issued to the health system” as the province continues to monitor the COVID-19 outbreak.





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Even More Media Coverage of Disability COVID Issues — and – Pressing Need for the Ford Government to Ensure that Hospital Patients with Communication Disabilities Face No Barriers to Using Technology that Lets Them Effectively Communicate


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Even More Media Coverage of Disability COVID Issues — and – Pressing Need for the Ford Government to Ensure that Hospital Patients with Communication Disabilities Face No Barriers to Using Technology that Lets Them Effectively Communicate

May 6, 2020

SUMMARY

Here are three more important media reports that focus directly or indirectly on disability issues during the COVID-19 crisis. All are set out below.

The first is a good CBC Radio news report on the need for the City of Toronto to include the accessibility needs of people with disabilities if it starts erecting barriers and signs on or around sidewalks to channel pedestrian traffic and people in line for stores during COVID-19 social distancing. The second is an interview on the May 5, 2020 CBC Radio Toronto Metro Morning program. It focused on our May 4, 2020 virtual Town Hall on meeting the urgent needs of students with disabilities during the COVID-19 crisis.

The third story did not involve the AODA Alliance at all. We comment on important broad disability issues it raises.

Premier Ford has pledged to protect the most vulnerable during the COVID-19 crisis. There is a pressing need for the Ford Government to now publicly direct all hospitals and health care providers to ensure that they do not create any barriers that impede people with communication disabilities from being free to use the technology they need to be able to effectively communicate. In the middle of this COVID-19 crisis, patients with disabilities cannot wait for the months and months that it will take for the promised Health Care Accessibility Standard, now under development, to be enacted. They should not have to try to fight accessibility barriers one at a time under human rights laws.

A May 1, 2020 Toronto Sun article, set out below, reports that a Toronto area hospital is not allowing a patient with a significant communication disability to use his computer tablet while he is in hospital, except for one hour a day. He reportedly needs to use the tablet as a communication aid.

The family reportedly went to the media after they could not get the hospital to let him use the tablet when he wished. We do not have the capacity to investigate such situations, and cannot comment on the accuracy of the specific details in the Toronto Sun’s report.

This article raises very serious issues. It has very serious implications for patients with disabilities, if the facts set out in it are accurate. It further illustrates why the Ontario Government must immediately launch and implement an effective and comprehensive plan to ensure that the urgent needs of people with disabilities are met during the COVID-19 crisis, including patients with disabilities.

In the widely-watched April 7, 2020 first Virtual Town Hall on COVID-19 and disability organized by the AODA Alliance and the Ontario Autism Coalition, Ms. Barbara Collier of Communication Disabilities Access Canada, a widely-respected expert on communication disabilities, emphasized the vital importance of ensuring that people with communication disabilities can effectively communicate, especially while they are in hospital. This builds on what the Supreme Court of Canada said in 1997 when it addressed the fundamental importance of hospitals accommodating the communication needs of deaf patients to effectively communicate while in hospital in Eldridge v. BC.

The Ontario Government has committed to develop a Health Care Accessibility Standard under the Accessibility for Ontarians with Disabilities Act to tear down barriers in our health care system facing patients with disabilities. The AODA Alliance’s February 25, 2020 Framework detailed what that Health Care Accessibility Standard should include. Among other things, it emphasized the importance of ensuring effective communication supports for people with communication disabilities including when they are in hospitals.

According to the Toronto Sun report, the hospital said that it was disallowing the use of the tablet “…because it was being used to conduct “surveillance” of his care.” Yet hospital patients and visitors routinely are free to use tablets, smart phones and laptop computers while in a hospital, without having to get anyone’s permission or approval. None are banned from using them for the reason that they could be used to conduct “surveillance” of a patient’s care.

The Toronto Sun reported that the hospital said the hospital staff have a reasonable expectation of privacy and should have a safe and secure working environment. It is hard to see what threat a patient with a severe and immobilizing disability would pose to the safety or security of hospital staff, with or without a tablet in hand.

We need the long-overdue strong Health Care Accessibility Standard more than ever, so that all patients can be free from discrimination because of disability. Hospitals have a duty to accommodate patients with disabilities. They can only refuse to do so if they can prove that accommodation of that patient would cause the hospital undue hardship.

During the COVID-19 crisis, when hospital visitors are restricted, this imposes special hardships on various patients with disabilities, including those with communication disabilities. At our April 7, 2020 virtual Town Hall event, Barbara Collier gave strategies that the Ontario Government should implement across Ontario to address such needs. Since then, no one from the Ministry of Health has tried to contact the AODA Alliance to follow up on those strategies or any other health-related COVID-19 issues.

For more background, check out the following:

* The May 4, 2020 virtual Town Hall on meeting the urgent learning needs of students with disabilities during the COVID-19 crisis, organized by the AODA Alliance and the Ontario Autism Coalition.

* The April 7, 2020 virtual Town Hall organized by the AODA Alliance and the Ontario Autism Coalition on more generally meeting the urgent needs of all people with disabilities during the COVID-19 crisis.

* The April 30, 2020 letter from the AODA Alliance to Ontario Education Minister Stephen Lecce, which sets out a list of concrete and constructive requests for action that the AODA Alliance presented to Ontario’s Ministry of Education.

* The AODA Alliance’s education web page, that documents its efforts over the past decade to advocate for Ontario’s education system to become fully accessible to students with disabilities

* The AODA Alliance’s health care web page, which documents our years of effort to get the Ontario Government to enact a strong and effective AODA Health Care Accessibility Standard.

* The AODA Alliance’s COVID-19 web page, setting out our efforts to advocate for governments to meet the urgent needs of people with disabilities during the COVID-19 crisis.

There have been 460 days since the Ford Government received the ground-breaking 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 announced no comprehensive plan of new action to implement that report. That makes even worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 41 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. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is worsened by that delay.

MORE DETAILS

CBC News May 3, 2020

Originally posted at https://www.cbc.ca/news/canada/toronto/accessibility-curbto-program-disability-rights-david-lepofsky-1.5554034

City urged to think about people with disabilities in CurbTO plan to create space on sidewalks

With files from Kelda Yuen

An advocate is urging the City of Toronto to make sure its plan to ease sidewalk crowding takes into consideration the needs of people with disabilities amid COVID-19.

David Lepofsky, chair of the Accessibility for Ontarians with Disabilities Act Alliance, said the new CurbTO program, in which the city will make room for pedestrians and delivery drivers through the creation of “curb lane pedestrian zones” and “temporary parking pickup zones,” is a good one. The alliance is a consumer advocacy group.

Through the program, the city is aiming to enable people on city sidewalks and drivers picking up and dropping goods off to engage in physical distancing to slow the spread of the virus.

But the program will actually make things worse for people with disabilities if city planners fail to think about accessibility for all people, Lepofsky told CBC Toronto on Sunday.

“The real question that I would ask is: What are they doing to ensure that, in altering this part of the built environment, that the alteration will increase and not decrease accessibility?

“In other words, the idea of creating more space for social distancing is obviously important and good. And the fact that they are looking at that is, regardless of disability, good.”

“If they don’t plan for its accessibility, they will likely screw up its accessibility. That’s what we find over and over. Accessibility doesn’t happen by accident. Inaccessibility happens by accident.”

Under the program, the city will make room at “hot spots” or “pinch points” where it is challenging for people to practise physical distancing because of lineups or congestion outside essential businesses.

These areas include sidewalks outside grocery stores, pharmacies, restaurants and community agencies that offer pickup, takeout and delivery services, the city has said.

The city said it will initially target hotspots along 10 busy retail main streets for curb lane installations before the program is expanded to more than 100 locations across Toronto.

Lepofsky said the program raises several issues around accessibility.

For example, if people in a lineup outside a drug store are rerouted onto a curb lane, then it would be difficult for a person using a mobility device, such as wheelchair, scooter or walker, to enter that fenced-off lineup because it would involve stepping down onto the road.

“If they build accessibility in by making sure that the route has level access to get down into the street and so on, that could be an improvement,” he said.

And if, as an additional example, the city sets up a sign outside a drug store indicating where pedestrians should line up, that sign itself could become an obstacle for people who are blind or who have vision loss.

“What kind of prompting will there be to let me know where to go to line up? If they stick a sign on the road or on the sidewalk, which they might want to do, they have now created a new obstacle I could whack into,” he said.

“What are they are going to do to plan for safe navigation?”

Mayor John Tory told reporters at a recent daily news briefing that staff will use signs and barriers to create additional space. ‘Each location will have unique conditions that will be assessed carefully by Toronto Public Health and Transportation Services staff to develop the most appropriate solution.’ (Michael Charles Cole/CBC)

In its April 27 news release in which it unveiled the program, the city did not address these concerns. The city has yet to respond to questions posed by CBC Toronto.

“Each location will have unique conditions that will be assessed carefully by Toronto Public Health and Transportation Services staff to develop the most appropriate solution,” Tory said.

“In some cases, city staff may be able to suggest line-up configurations to the business operator that alleviates crowding concerns. In other cases, a temporary curb lane closure may be the most effective response.”

“Curb lane pedestrian zones” are defined as areas in which pedestrians trying to move past lineups outside essential businesses will have more space.

“Temporary parking pick-up zones” are defined as areas in which drivers delivering food and medicine will be allowed to park for up to 10 minutes near an essential business where they are picking up or dropping off goods.

These zones could be created in areas that are now restricted parking zones.

A downtown councillor, meanwhile, has enlisted the support of residents to propose locations that the city could fix when it expands the program.

Count. Joe Cressy, who represents Ward 10 Spading-Fort York, said he is recommending 18 new additional spaces in his ward for “immediate improvements” under the CurbTO program where room could be created to allow people to distance physically during the outbreak.

“Notwithstanding the overarching advice to, where possible, stay at home, we know that in many neighbourhoods, especially in downtown Toronto, there are immediate spaces where it’s not possible to walk on the sidewalk without coming into contact with lots of people,” Cressy said.

His office has worked with local residents, community organizations, businesses and institutions to identify where there are issues around crowding, he said.

“We know that in this dense, crowded city of ours, the overarching message to stay at home works for some, but depending on how busy and crowded the sidewalks are, it doesn’t work for everyone, and that’s why we’re proposing these changes.”

Cressy said to make streets safe and accessible for all requires a “fundamental” redesign of city streets.

He said of CurbTO: “We need to include an accessibility focus around that.”

CBC Radio 1 Metro Morning May 5, 2020

Note: the host conducting the interview was David Common.

Radio Host: So, learning from home as we’ve been discussing for weeks now can be really tough for any student, and certainly for many families. For students with disabilities, whether that’s physical, mental, or sensory, the disruptions to the school year have been especially hard, there hasn’t been much direction from school boards or for school boards, about working with special needs students during the pandemic. Well that’s why a group of concerned parents and Disability Advocates held a virtual Town Hall yesterday. The goal was to share ideas of what parents, teachers and school boards can do to help students with disabilities. David Lepofsky co hosted that session, he is chair of Accessibility for Ontarians with Disabilities Act Alliance. Lolly Herman teaches children with autism. She is a certified teacher and a behavior analyst who founded Under the Umbrella Tree educational services, she’s got three kids of her own. Both Lolly and David join us now. Good morning to both of you.

Guests: Good morning, David

Radio Host: I like to start with you, David, and just ask you about this virtual Town Hall you hosted yesterday. What was your goal?

David Lepofsky: Well we’ve got upwards of a third of a million students with disabilities in Ontario schools, and their teachers, their parents, and the kids are facing enormous additional barriers of hardships because of the move to online learning. And we wanted to get ideas, action tips, practical action tips to the frontline teachers and parents. There are teachers and parents who can innovate and come up with creative ideas, but the province, the provincial government has dropped the ball by not reaching out to those frontline folks, finding out what they’ve innovated and sharing them to all school boards around the province so everybody can benefit from them. We came up with the idea of our virtual Town Hall, to try to fill the gap and frankly to embarrass the province, into doing its job by picking up where we left off, and continuing that process.

Radio Host: Do you feel like in the rush to get some sort of distance learning program out that students with disabilities were simply left behind?

David Lepofsky: Well, unfortunately our Ministry of Education or provincial government tend to operate our education system first and foremost on the idea that it’s for kids without disabilities, then kids with disabilities become kind of an afterthought. Oh, what do we do for them? kind of thing. We recognize that the province had an enormous challenge, as did the school boards, moving to onsite online learning and we got to cut them some slack but we’ve now been into this for weeks. And yesterday we revealed, very serious issues. There are grassroots strategies for fixing it but the province has to step up to the plate. Let me give you one example, the provinces announced that TVO Ontario is its major partner in helping deliver online education. Well, one of our speakers yesterday, an expert in digital accessibility, found out within minutes of checking out the online resources that TV Ontario has posted, that they have significant accessibility problems for students or teachers or parents with various disabilities who have to use adaptive technology to interact with those kind of websites.

Radio host: I just want to bring Lolly into the conversation because she teaches children with autism and I wonder Lolly, what are some specific examples of how kids with autism and their parents are struggling right now?

Lolly Herman: Yeah. So, when we made the decision to close our clinic and move to online services I really worried about what our families would do without the therapies and intensive intervention that they had been receiving prior to this outbreak. And so, sort of not offering services not an option, going online and transferring our therapy and all our services online was certainly scary but it needed to be done. And I’m proud to say that we are in our eighth week of telehealth services, and it is going very well. Families help children with disabilities as specifically, the ones I work with, many of them have a diagnosis of autism, are struggling with not only changes in sleep patterns, an increase in, well, some of my kids when they can’t express themselves, when they can’t for what they need, sometimes they act out, and the ways that they act can be to hurt themselves or to hurt their parents, or to refuse eating the few foods that they were eating prior to this pandemic. A change in routine can be devastating and is often devastating to these children and their families going you know not having the child go to bed till 3 or 4 am every night is quite difficult. And so knowing that our kiddos thrive on routine, we did everything we could to get online and continue to support our families. I can say that, like, all of us I’m a mom of three. And, you know, getting online was not so fun for me and my three kids, three kids in the TDSB and all three of their, their online learning looks different. So it took a little bit of time to set that up. But for our families, you know, a lot of them just sort of wanted to wait this out hoping it wasn’t going to take so long saying you know we’re just goanna wait to get back to the clinic. And my response to that was okay, but I really want to make sure that your kids know that we’re still here, you know, give me a few minutes. Let me see them. Let’s just FaceTime, you know, let’s use our chosen method or virtual platform. Let’s get online and I think that parents, when they saw how their child connected to their therapists to their teacher, to myself I immediately felt comfort. I know myself as director, when I made the decision to close down, I felt like I, you know, had put all the weight on my shoulders and it was a massive decision. The moment I got online and saw my colleagues I immediately felt a sense of relief. There’s something special in these times where we are all social distancing and self isolating, to get online and to see the people that you see every day the people that care for you, the people that love you, the people that teach you, and you feel part of something positive. And so I think that one of the greatest strides we’ve made aside from moving our curriculum and online is by making the massive push to make sure that everything we do for our kids for our families for our staff are face to face. I mean we’ve started doing Wednesday PJ and story night for my kids and myself we get into our pajamas and our families log on and I read our clients stories, right before bed, you know we have morning coffee with me with just our parents in the morning. So we have time to connect. I think that anything that we can do to bring our community and keep our community together and engaged makes us all feel like this isn’t the new norm, we will get back to where we need to be and the more that we can keep our children, engaged and retained and being, you know, engaged with their teaching team, the better off we will be when we get back out into society and continue working with our kids.

Radio Host: Certainly I understand what you say, particularly around the importance of routine and the consequences without it. David, I know you have written to the Education Minister Stephen Lecce. What do you need the province to do now to better support students with disabilities?

David Lepofsky: Well the province has basically left it to over 70 school boards, to principals and teachers, to each have to figure these things out on their own. What we did yesterday was we brought together five experts like Lolly to give practical tips, addressing certain disabilities. We couldn’t address them all.

Radio Host: We’ve only got about a minute, David, so if you could give me some of those tips that would be helpful.

David Lepofsky: So for example if you’re going to use an online platform, you need an accessible platform for students and parents and teachers with disabilities. Zoom is by far the most accessible platform yet some school boards are either not promoting it, or in fact are refusing to allow it. That’s ridiculous. We are getting tips on. Sorry, just one other tip, Lolly gave a pile of them in the millions, you folks will have a link on your website. We invite your listeners to go and watch the different action tips we gave in the areas of educating kids with blindness or kids who are deaf or kids with autism or kids with behavior issues. One of the great ideas was setting up an area in your house that’s going to be the learning area it’s kind of a school at home, so kids who have behavior issues need to learn to focus, have one area that they could orient themselves to. That’s the learning area, very practical things that people find are working but we need the province to reach out directly to grassroots teachers on the frontlines and parents, collect their ideas. Don’t create a website that’s just a blizzard of a million links leaving it to everyone to have to click on a million links to find a good idea. Come up with really nicely packaged lists of action tips and share them with families, share them with teachers. That’s what we started doing yesterday and we invited the province to pick up, take it over and do it themselves, we will help them.

David and Lolly unfortunately we’re goanna have to leave it there but thanks very much for raising what is very clearly an important issue for a great many. Thanks a lot.

Guests: Thanks so much

Radio Host: That’s Lolly Herman who works with children with autism, she’s a behavior analyst and founder of Under the Umbrella Tree Educational Services, a parent herself. And David Lepofsky is Chair of the Accessibility for Ontarians with Disabilities Alliance.

Toronto Sun May 1, 2020

Originally posted at https://torontosun.com/news/local-news/levy-hospital-bans-disabled-patient-from-using-ipad-calling-it-surveillance-tool

LEVY: Hospital bans disabled patient from using iPad calling it ‘surveillance tool’

Sue-Ann Levy

Tommy Jutcovich, 69, is bedridden in Toronto Grace hospital but staff are no longer allowing him to use his iPad — his lifeline to the outside world during the COVID-19 pandemic — because it considered a “surveillance tool.” Supplied photo

Tommy Jutcovich is bedridden in Toronto Grace hospital — unable to walk, talk, eat or use his hands — and his only lifeline to the outside world was taken away from him.

The 69-year-old much beloved retired Toronto District School board principal was diagnosed with multiple systems atrophy eight years ago — a rare disease that presents similar to ALS — and is only able to communicate by either blinking one eye or through his computer tablet.

But his daughter, Adalia Schweitzer, said Friday that his tablet has literally been shut off by hospital staff over allegations it is being used to conduct “surveillance” of his care and is not providing a “safe and secure environment” for the nurses and other employees who service his needs.

After spending four months in the ICU at North York General Hospital, she said her dad was transferred to Toronto Grace a week ago — against the wishes of the family — to make room at NYGH for COVID-19 patients.

When her mom was no longer able to be by his side at NYGH due to the escalating pandemic, they came up with the idea of the tablet.

Through an app, her mom was able to program the tablet from home to assist with his daily readings from the Torah, allow him to watch the news and listen to podcasts.

They’d also do daily video conferencing with all members of the family, who live in different countries and time zones.

NYGH had no problem with his use of the tablet, Schweitzer said.

She said her father was admitted with his tablet on Thursday and he was using it until the patient care manager informed the family three days later that it was an “issue of privacy” and he would only be permitted to access his tablet one hour a day — at a time acceptable to hospital staff and subject to their availability.

Schweitzer feels because he was in a new hospital situation, the nurses didn’t “appreciate” that her mom was trying to advocate for his care needs and advise them of his “very strict” medication schedule.

She said the other day, while he was doing his Torah prayers, a hospital staff member actually came in to his private room and “just shut it off.”

When the family tried to work out a compromise, lawyers got into the mix and Thursday night the family received a letter indicating the hospital does not permit monitors that “allow the continuous surveillance and recording of what is occurring within the hospital.”

The lawyer’s letter also stated that hospital employees have a “reasonable expectation of privacy in the workplace” and the hospital must provide employees and professional staff with a “safe and secure work environment.”

Schweitzer said all staff have to do is put the tablet on “mute” or “turn it off” when they come in to his private room to take care of her father.

“No one’s stopping them from turning off his tablet or turning it around when they are doing his care,” she said. “They’re calling it a monitor … we’re calling it his lifeline.”

Lt.-Col. John Murray, board chair of Toronto Grace health centre, said in an e-mailed statement they are committed to “providing exceptional and compassionate care” but the Personal Health Information Protection Act prohibits the use of a monitor that can be “controlled remotely” from outside a public hospital.

When I suggested what they were doing is tantamount to elder abuse, Murray said “nothing could be further from the truth” and that they are doing “everything possible” to ensure loved ones remain connected to their families.

Ontario Health Minister Christine Elliott’s spokesman Hayley Chazan said she’s not able to comment on the specifics because hospitals operate autonomously. However, she did say she expects Ontario hospitals to “act reasonably” to support patients during this unprecedented crisis.

Schweitzer said the entire family is “heartbroken.”

“My dad was always a passionate advocate for causes he believed in … and now he can’t speak up for himself,” she said. “(What the hospital is doing) is not acceptable.”



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Yesterday’s Virtual Town Hall Reveals Serious Hardships Facing Hundreds of Thousands of Ontario Students with Disabilities During COVID-19 Crisis and Makes Practical Recommendations for Urgent Action – But Will the Ford Government Do What’s Needed?


ACCESSIBILITY FOR ONTARIANS WITH DISABILITIES ACT ALLIANCE

ONTARIO AUTISM COALITION

 

News Release   For Immediate Release

Yesterday’s Virtual Town Hall Reveals Serious Hardships Facing Hundreds of Thousands of Ontario Students with Disabilities During COVID-19 Crisis and Makes Practical Recommendations for Urgent Action — But Will the Ford Government Do What’s Needed?

May 5, 2020 Toronto: A ground-breaking virtual Town Hall held online yesterday afternoon revealed that a third of a million students with disabilities in Ontario disproportionately suffer hardships due to the shift to distance education. (Video of the Town Hall is now archived on Youtube at https://www.youtube.com/watch?v=phdtibf5DbM At this event, organized by grassroots disability advocates, experts gave teachers, principals and parents of students with disabilities dozens of practical tips for overcoming the many disability barriers that online schooling creates. Anchored by Ontario Autism Coalition president Laura Kirby-McIntosh (herself a teacher) and AODA Alliance chair David Lepofsky (an Osgoode Hall Law School visiting professor), this virtual public forum shone a spotlight on the critical learning needs of at least one third of a million students with disabilities in Ontario (1 of every 6 students in Ontario-funded schools). The Town Hall addressed disability barriers such as:

  • The Ford Government partnered with TV Ontario to provide online school content, but TVO’s online content has substantial disability accessibility problems that impede a range of students, teachers and parents with disabilities. The Government must get its own TV station to fix this now.
  • Zoom is the most accessible online platform for students, parents and teachers with disabilities, such as those who have vision loss or dyslexia. However, the government left school boards floundering to figure out which to use, and at least one board doesn’t allow the use of Zoom at all.
  • Students with autism or other behaviour-related disabilities can face major challenges with the total disruption of predictable schedules on which they heavily relied.

“This grassroots effort was just a first step to fill a huge gap which the Ford Government has left. Time did not permit speakers to cover every disability and each recurring barrier that students with disabilities face during school closures,” said co-anchor David Lepofsky. “As volunteers, we pulled this Town Hall together in under a week. The Government should use its staff and resources to quickly hold sequel events to address other strategies and action tips we did not have time to cover.”

“It was wrong for the Ford Government to burden every school board during this crisis to have to reinvent the wheel for students with disabilities,” said co-anchor Laura Kirby-McIntosh. “The Ford Government should now step up to the plate. It should quickly find out what solutions are being devised by teachers and parents of students with disabilities on the front lines, and share these with all school boards and parents of students with disabilities during the COVID crisis.”

The Media are welcome to use excerpts from the virtual public forum in their coverage. Technical issues with captioning during the first few minutes will be repaired soon.

For further information, contact:

David Lepofsky, Chair, AODA Alliance, [email protected] Twitter: @aodaalliance

Laura Kirby-McIntosh President Ontario Autism Coalition [email protected]

416-315-7939 www.ontarioautismcoalition.com Twitter @OntAutism

Background Resources

The April 30, 2020 letter from the AODA Alliance to Ontario Education Minister Stephen Lecce, which sets out a list of concrete and constructive requests for action that the AODA Alliance presented to Ontario’s Ministry of Education.

  • The AODA Alliance’s education web page, that documents its efforts over the past decade to advocate for Ontario’s education system to become fully accessible to students with disabilities
  • The AODA Alliance’s COVID-19 web page, setting out our efforts to advocate for governments to meet the urgent needs of people with disabilities during the COVID-19 crisis.
  • The Ontario Autism Coalition‘s web site, to learn about its ongoing advocacy efforts.
  • The earlier widely-watched April 7, 2020 virtual public forum by the AODA Alliance and Ontario Autism Coalition on the overall impact of the COVID-19 crisis on 2.6 million Ontarians with disabilities.

Speakers at the April 7, 2020 Virtual Public Forum:

  1. Co-anchor: Laura Kirby-McIntosh, President, Ontario Autism Coalition and teacher
  2. Co-anchor: David Lepofsky, AODA Alliance chair and Osgoode Hall Law visiting professor
  3. York University Faculty of Education’s Professor Pamela Millet, an expert in meeting the learning needs of students who are deaf or hard of hearing.
  4. Lolly Herman, founder and Executive Director of the Umbrella Tree Educational Services, an expert in meeting the learning needs of students with autism.
  5. Marty Schultz, cofounder of ObjectiveEd, which builds distance learning digital curriculum and educational games for pre-K to 12th grade students with vision impairments, used by teachers worldwide, an expert in education of students with vision loss.
  6. Lisa Glover, a TDSB itinerant Child and Youth Worker, is an expert in addressing behavioural challenges experienced by some students with disabilities .
  7. Karen McCall, Adjunct Faculty at Mohawk College’s Accessible Media Production Program and owner of Karlen Communications, an expert on making digital documents and other digital content accessible to people with disabilities.
  8. Jeff Butler, acting Assistant Deputy Minister of Student Support and Field Services at the Ontario Ministry of Education, the Ontario Government’s senior official responsible for special education.



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Ontario’s Ministry of Education Must Now Meet the Urgent Needs of A Third of a Million Students with Disabilities During the COVID-19 Crisis – A Captioned Online Virtual Town Hall Today at 3 PM Lets Experts Give Practical Action Tips for Teachers and Parents While Schools Remain Closed


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Ontario’s Ministry of Education Must Now Meet the Urgent Needs of A Third of a Million Students with Disabilities During the COVID-19 Crisis – A Captioned Online Virtual Town Hall Today at 3 PM Lets Experts Give Practical Action Tips for Teachers and Parents While Schools Remain Closed

May 4, 2020

Some hardships of COVID-19 fall disproportionately on students with disabilities. What can teachers, principals, parents, schools and the Ontario Government do to make sure Ontario’s students with disabilities can effectively continue their education at home while schools are closed? What can teachers and parents of students with disabilities do right now to break through the barriers that distance and online learning can create for students with disabilities?

We’ll tackle these questions today from 3 to 4 pm Eastern at a captioned Virtual Town Hall on meeting the urgent learning needs of students with disabilities during the COVID-19 crisis. Log in to https://www.youtube.com/c/OntarioAutismCoalition

Nothing will stream at that link until the moment we start our Virtual Town Hall. If you click that link just before we start streaming, you may get our stream automatically coming to you we start, or you may have to monitor for a new link to click when we start. That will depend on your settings. Just keep at it till you start receiving our event. Within hours after this event, we will circulate a new link to this event once it is archived on Youtube and permanently available for all to revisit.

The rapid move to online learning for 2 million students in schools created enormous challenges for all students, teachers and parents. Much bigger hardships face a third of a million Ontario students with disabilities, if not more, and for their parents and teaching staff. These are at least one out of every six students in Ontario-funded schools.

Before COVID, Ontario’s education system had far too many disability barriers, impeding many students with disabilities. The move to online learning created even more hardships for them, and their teachers.

Our virtual Town Hall will help you, whether you are in Ontario, elsewhere in Canada, or anywhere around the world. It will be helpful for teachers, principals, parents, students, school boards and Government officials. This is the second such virtual town hall organized by the grassroots AODA Alliance together with the Ontario Autism Coalition. Our widely-viewed earlier April 7, 2020 virtual public forum looked at the full spectrum of COVID-19 crisis problems facing people with disabilities from health care to long-term care. At today’s event, we’re zeroing in on education for students with disabilities. Co-anchors for this event are AODA Alliance Chair David Lepofsky, a visiting professor at the Osgoode Hall Law School, and Laura Kirby-McIntosh, president of the OAC. Both have strong track records in tenacious disability advocacy for students with disabilities in Ontario’s education system. Their discussion will be fueled by feedback accumulating over the past days via email and social media. The hashtag #DisabilityUrgent was created for disability issues in the COVID-19 crisis. Feedback can also be sent to [email protected]

The media is free to broadcast any clips from this town hall. We hope this virtual town hall will help pressure the Ford Government to take new action. We are delighted that its lead public official responsible for special education, Assistant Deputy Minister of Education Jeff Butler, has agreed to speak at this event. Five other experts will offer practical tips for teachers and parents of students with disabilities, for just some of the barriers they are now facing. We regret that in this one event, we cannot address every disability and every barrier. We call on the Ford Government to take up this idea and run with it, using our virtual Town Hall as an illustration of what is needed.

For more background:

The April 30, 2020 letter from the AODA Alliance to Ontario Education Minister Stephen Lecce, which sets out a list of concrete and constructive requests for action that the AODA Alliance presented to Ontario’s Ministry of Education.

* The AODA Alliance’s education web page, that documents its efforts over the past decade to advocate for Ontario’s education system to become fully accessible to students with disabilities

* The AODA Alliance’s COVID-19 web page, setting out our efforts to advocate for governments to meet the urgent needs of people with disabilities during the COVID-19 crisis.

* The Ontario Autism Coalition‘s web site, to learn about its ongoing advocacy efforts.



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Still More Media Reports Reveal Disproportionate Harm to Ontarians with Disabilities Due to the Ontario Government’s Failure to Effectively Plan for Urgent Disability Needs in its COVID-19 Emergency Efforts – and – Federal Government Announces Disability COVID-19 Advisory Panel, So We Offer Our Advice


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Still More Media Reports Reveal Disproportionate Harm to Ontarians with Disabilities Due to the Ontario Government’s Failure to Effectively Plan for Urgent Disability Needs in its COVID-19 Emergency Efforts – and – Federal Government Announces Disability COVID-19 Advisory Panel, So We Offer Our Advice

April 23, 2020

          SUMMARY

Here are yet more helpful media reports that illustrate how people with disabilities are disproportionately suffering the consequences of the Ontario Government’s failure to effectively include the urgent needs of people with disabilities in its emergency COVID-19 planning. Our ongoing advocacy efforts are showing some signs of success, but the battle remains an uphill one. We remain tenacious as we join in that battle!

Below you will find:

* An excellent April 22, 2020 City TV news report by reporter Pam Seatle, on the Ford Government’s failure to effectively plan for the COVID-19 needs of Ontarians with disabilities.

* A great April 22, 2020 report on CBC Radio Kitchener Waterloo by reporter Paula Duhatschek on the cruel impact on one individual with disabilities of the Ford Government’s unjustified and inexplicable closure of the Adaptive Devices Program during the COVID-19 crisis as a supposedly non-essential program. We commend the individual who brought that issue to CBC.

* An earlier superb April 11, 2020 Canadian Press report by reporter Michelle McQuigge that appeared in a number of media outlets including the Globe and Mail, on the Federal Government’s announcement of a federal advisory panel on the impact of COVID-19 on people with disabilities.

We also set out below the Federal Government’s actual April 10, 2020 announcement of its federal disability advisory panel on the impact of COVID-19 on people with disabilities. We commend the Federal Government for Accessibility Minister Carla Qualtrough’s acknowledging:

“We recognize that some groups of Canadians are significantly and disproportionately impacted by this pandemic, in particular Canadians with disabilities. For some persons with disabilities, underlying medical conditions put them at greater risk of serious complications related to COVID-19. Others face discrimination and barriers in accessing information, social services, and health care. For others, the need for self-isolation and physical distancing create additional challenges.”

We first learned of the Federal Government’s plans in this regard at the same time as did the public – when it was publicly announced. It is good that the Federal Government has recognized the disproportionate impact of COVID-19 on people with disabilities. However, as we noted in the April 11, 2020 Canadian Press article by reporter Michelle McQuigge, 95% of the problems people with disabilities face in this crisis are within provincial responsibility, and are not the responsibility of the Federal Government.

It is very important for the Federal and provincial governments to also directly reach out to, hear from and follow the advice of anyone with the best front-line experience with the impact of COVID-19 on the grassroots disability community. That would include, for example, the ten experts that were interviewed on the April 7, 2020 virtual public forum on COVID-19 and people with disabilities organized by the AODA Alliance and the Ontario Autism Coalition.

In the federal sphere, we offer these recommendations:

* The Federal Government pledged in the fall 2019 federal election that it would apply a disability lens to all its decisions. Beyond creating a new advisory panel, it is important for the Federal Government to let us and the entire public know what it is doing and has done since this crisis began to apply that disability lens to all its decisions in the COVID-19 crisis.

* The new federal disability advisory group should itself watch the April 7, 2020 virtual public forum on COVID-19 and disability, and advocate for the recommendations made there.

* The Federal Government should immediately make public the work of its new federal disability advisory group, when it is meeting, what it is recommending, and what actions the Federal Government is taking as a result to protect people with disabilities during this crisis. Openness and transparency by our governments is especially important during a crisis like this one.

We are not recommending that the Ford Government create a similar advisory panel. It would take the Government too long to set it up, and risk being a distraction. Instead, the Ford Government should immediately reach out to the grassroots disability community to learn about the hardships they are facing during this crisis. The Ford Government should also recognize, as has the Federal Government, the disproportionate impact of COVID-19 on people with disabilities. As we have been urging for weeks, the Ford Government should quickly develop and make public a comprehensive plan of action to meet the urgent needs of people with disabilities as part of its emergency COVID-19 planning.

Our non-partisan campaign is substantially fortified when individuals bring to the media their personal stories about the hardships and barriers they are facing during the COVID-19 crisis due to their disability. The AODA Alliance remains ready and willing to provide broader comments to the media on these issues, as we do in the stories set out below. To help you with this, you can get more background, check out and widely share:

* The guest column by AODA Alliance Chair David Lepofsky in the April 20, 2020 online Toronto Star, which summarizes our major COVID disability issues in one place.

* 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.

* 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.

There have been an inexcusable 448 days since the Ford Government received the groundbreaking 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 announced no comprehensive plan of new action to implement that report. That makes worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 29 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. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is worsened by that delay.

We are sending you more AODA Alliance Updates than usual because of the influx of important news that is important to people with disabilities during the COVID-19 crisis. We are doing our best to stay on top of the rapidly changing events, and to effectively advocate for efforts so that people with disabilities are equally served by government emergency COVID-19 planning.

          MORE DETAILS

City News April 22, 2020

Originally posted at https://toronto.citynews.ca/2020/04/22/advocates-say-coronavirus-planning-leaves-out-people-with-disabilities/

Advocates say coronavirus planning leaves out people with disabilities

BY PAM SEATLE AND DILSHAD BURMANPOSTED APR 22, 2020

Summary

Disabilities advocates say their community has been overlooked in the government’s COVID-19 planning

NDP Leader Andrea Horwath is calling on the province to provide in-home testing for people with disabilities

No plans have been announced but Minister of Health Christine Elliott says those with disabilities will be accommodated

As the country continues to wage battle against the novel coronavirus, vulnerable populations have been highlighted repeatedly — including seniors, those with compromised immune systems, and more recently, those living in low-income neighbourhoods.

While there is no doubt all of those groups are particularly susceptible to COVID-19, disabilities advocates say their community is also a large and highly vulnerable group that has been entirely overlooked by the government in many areas.

“People with disabilities in Ontario number at 2.5 million. [They] are facing, really, a triple whammy during this COVID crisis, beyond what everybody else is facing,” says David Lepofsky, chair of the Accessibility for Ontarians with Disabilities Act Alliance (AODA).

Lepofsky says the problem includes the following issues:

  • People with disabilities are disproportionately prone to contracting COVID-19 and also likely to suffer it’s most severe medical impacts
  • A combination of government neglect and failure to plan is making them even more prone to getting COVID-19 than they already are
  • If they do get the disease and have to visit a hospital, they face serious existing accessibility barriers in the healthcare system

“The solution is as clear as it is obvious as it is missing. We need the Premier and the Government of Ontario to say ‘we gotta plan. We gotta include in our emergency planning for COVID, specific plans to meet the urgent needs of people with disabilities, who are among the most vulnerable’,” says Lepofsky.

NDP Leader Andrea Horwath is also calling on the Ford government to address the needs of Ontarians with disabilities.

“They are worried and concerned that they’ve been left behind,” says Horwath.

She says there is no plan to ensure that people with disabilities will get tested if they begin to show symptoms of COVID-19 and there are concerns in the community that they will not have access to testing like everybody else.

“We’ve asked the government to put in place a plan to have testing available for those folks — that would include ensuring that they can get tested at home,” says Horwath, adding that this would help mitigate the issues of barriers to transit and navigating public spaces for those with mobility issues.

“Let’s not leave these folks out. Let’s do some proactive testing, let’s get to people in their homes and let’s give them the peace of mind that others are able to get by having mobility and being able to go out to testing centres and get that testing done.”

However, testing and care are not the only ways in which Lepofsky says people with disabilities are falling through the cracks.

He adds that thousands of children with disabilities are being left behind as the government implements online learning — which is not accessible to many such students. Plus, he says people with disabilities who live independently at home but still need assistance, are being overlooked as well.

Wendy Porch, the head of the Centre for Independent Living in Toronto, manages a program for about a thousand Ontarians who live independently but need assistance with daily tasks such as eating, getting washed and dressed.

She agrees with Lepofsky and says the people she works with have been ignored.

“The folks that we work with have not been considered a priority in any of the priority populations that we’ve seen defined,” she says. “There has been no particular guidance that’s been released around people with disabilities living at home.”

In addition, she says when the issue is raised with authorities, they are told they’re “just not there yet.”

“There’s no attention paid to this population at this point,” says Porch.

Making matters arguably worse is that those who care for people with disabilities at home are not receiving any government assistance with personal protective equipment (PPE), despite being essential workers with close physical contact with clients.

“Our program … is not a medically oriented program, but the people who receive these supports at home, they see the same personal support workers that work in long-term care facilities and they’re certainly at risk. But because they’re at home, it seems as though they’ve fallen through the cracks,” she says. “Because we were named as an essential service, if we could be included in the kind of supply chain relationships that exist between the Ministry of Health and some of these suppliers [of PPE], that would go a long way towards solving this problem for our folks.”

In addition to these worries, Lepofsky says one of his biggest concerns is what he calls the province’s “secret plans” on how patients will be prioritized should critical equipment such as respirators fall into short supply. He says the government’s plans to ration critical medical care if such a situation were to arise leaves out those with disabilities.

In an open letter, the province responded to such concerns saying all will be treated equally.

“We believe that a human life cannot be valued differently. As such, Ontario Health has been asked to consult with the Ontario Human Rights Commission, as well as human rights and key community experts, to make certain that any medical protocols that may be required during this outbreak do not disproportionately affect vulnerable groups, including people with disabilities, older persons, Indigenous communities and racialized people,” they said

Health Minister Christine Elliott was asked about the issue at the province’s daily briefing on Wednesday. She said the government is willing to accommodate everybody.

“If people need to be tested, we can take the testing to them, especially people with disabilities who maybe have significant mobility challenges,” she said. “We want to make sure, if they need to be tested, that they will be tested and if they need care that they will receive the care that they need, including hospital admissions or if they’re doing self-isolation — making sure that they have the supplies and equipment and assistance that they need.”

At this time, the province has not yet put forth a definitive plan for at-home testing and care.

CBC News Kitchener Waterloo April 22, 2020

Originally posted at https://www.cbc.ca/news/canada/kitchener-waterloo/man-stuck-hours-daily-on-floor-while-province-closes-assistive-devices-office-1.5540041

Man stuck hours daily on floor while province closes Assistive Devices office

Michael Wilson says wheelchair broke while awaiting a replacement, then COVID-19 hit

Paula Duhatschek

A Kitchener man has spent nearly a month stuck in his apartment after his wheelchair fell apart and a replacement has been delayed.

Meanwhile, the province has shuttered its Assisted Devices Program office, which helps people access funds to pay for their wheelchairs and other mobility devices.

Michael Wilson, who has cerebral palsy and uses a wheelchair to get around, receives a replacement every five years, paid for through the province’s program.

This year, he says he was due for a new wheelchair but that the process was delayed after the province initially rejected his application and he had to file an appeal.

Wilson was still using his old wheelchair on March 24 when he left his apartment to stock up on essentials. The motor and wheel fell off mid-trip, he says. Without a functional wheelchair, Wilson been unable to venture out for grocery or banking trips, and has mostly been eating delivery pizza. He also can’t comfortably change positions or move himself around his apartment.

“It’s awkward,” he said.

Office not processing applications

Although the province pays most of the cost of devices provided through the Assisted Devices Program, it’s up to individual vendors to supply them.  Corrinne Cave, who is with a local home care company working with Wilson, said she couldn’t comment on individual cases for privacy reasons. But she says her business’s operations have been complicated by the fact that the program office was closed due to COVID-19 and is no longer answering the phone or processing new funding applications.

“We’re trying to figure out a balance on how to get these [devices] to people who do need it” while also considering what costs they can absorb, she said.

France Gélinas, NDP health critic and Nickel Belt MPP, told CBC News that vendors and people with disabilities have been left in a tough position following the closure of the office. She says the program itself has long been due for an upgrade, so that people who need new wheelchairs and other devices can get them based on need rather than “arbitrary” rules.

For the time being, Gelinas says the office should at least have someone around to pick up the phone.  “Right now, to not even be able to talk to them … I don’t understand it,” Gelinas told CBC News.

“It is disrespectful, it is causing a lot of real hardship to people who often have severe disabilities, depend on those wheelchairs, to anything else to live their lives, and now they’re stuck.”

Pandemic creates urgency

Ontario disability advocate David Lepofsky agrees. He says assistive devices are even more important during the COVID-19 pandemic, now people have been told to physically distance and can’t ask their friends and neighbours for extra help.

“The first thing [the province] should do is immediately re-open the assistive devices program and declare it essential,” said Lepofsky. “The second thing they should do is … essentially do a short-term surge to try to clear the backlog that will have now been created.”

Province ‘evaluating options’

A spokesperson for Health Minister Christine Elliott said the province couldn’t comment on individual cases. She said vendors will still receive payments based on historical invoices and can dispense and repair devices for clients who are eligible. “We’re currently evaluating options to provide greater continuity of services under the assisted devices program during the COVID-19 pandemic,” the statement said.

He says they should replace wheelchairs more frequently, before safety becomes an issue. He thinks the program should also be more cautious about rejecting applications and requiring appeals for needed devices like wheelchairs, especially when it comes to situations like his.

As of Monday, Wilson was still without a wheelchair. But after CBC News contacted the vendor and province about his story, Wilson was told his wheelchair would be delivered Wednesday. When it arrives, he says, he looks forward to finishing up the errands he started back in March.

The Globe and Mail April 11, 2020

Originally posted at https://www.theglobeandmail.com/canada/article-federal-government-names-group-to-ensure-disabled-canadians-included-2/

Federal government names group to ensure disabled Canadians included in COVID-19 response MICHELLE MCQUIGGE

THE CANADIAN PRESS

Employment, Workforce Development and Disability Inclusion Minister Carla Qualtrough speaks during a news conference in Ottawa, Thursday March 26, 2020.

Qualtrough did not elaborate on specific systemic barriers in place, but members of Canada’s disabled community have been sounding alarms since the beginning of the outbreak. THE CANADIAN PRESS figure

The COVID-19 pandemic takes a particularly heavy toll on Canadians with disabilities and more efforts are needed to ensure they’re included in national efforts to respond to the crisis, the minister overseeing accessibility issues said Friday as she appointed an advisory group to take on the task.

Disability Inclusion Minister Carla Qualtrough said disabled residents have been sounding alarms about a host of concerns related to the outbreak, which has already killed at least 550 Canadians and sickened a minimum of 22,000 others. In a statement announcing the advisory group, Qualtrough said greater efforts are needed to ensure disabled voices are heard during a troubling time.

“For some persons with disabilities, underlying medical conditions put them at greater risk of serious complications related to COVID-19,” Ms. Qualtrough said in the statement. “Others face discrimination and barriers in accessing information, social services and health care. For others, the need for self-isolation and physical distancing create additional challenges.

“As we continue to address the COVID-19 outbreak, our priority will remain helping persons with disabilities maintain their health, safety, and dignity.”

Ms. Qualtrough did not elaborate on specific systemic barriers in place, but members of Canada’s disabled community have been sounding alarms since the beginning of the outbreak.

Early public-health messages and briefings at all levels of government often failed to include accessibility measures, such as sign language interpreters for the deaf or simplified messaging for those with intellectual disabilities.

Since then, more concerns have been raised about access to overtaxed health-care resources, the availability of educational supports for disabled students, and the greater vulnerability of those living in confined settings such as prisons, homeless shelters and long-term care institutions. At one assisted living facility in Markham, Ont., the executive director confirmed an outbreak had infected 10 of 42 residents and two staff members. Shelley Brillinger said news of the outbreak prompted the rest of the staff at Participation House to walk off the job, leaving residents without the care they need.

“Our residents are the most vulnerable in society,” she said. “… They don’t have a voice, and my message would be it’s our responsibility to speak up for those who can’t speak for themselves and ensure that they have the care that they deserve.”

The 11-member advisory group, consisting of academics and organization leaders spanning a range of physical and intellectual disabilities, has been tasked

with apprising the government of the barriers their communities face and ensuring their needs are adequately addressed.

Committee member Bonnie Brayton, executive director of the DisAbled Women’s Network Canada, said the issues before the group are matters of equality and fundamental access to human rights.

She said the proliferation of the novel coronavirus has laid bear many systemic issues that dogged the community for decades, but have taken on increased urgency as the disease continues to spread.

“What the COVID-19 pandemic has shown us is that the question of equality rights for people with disabilities apparently is still on the table in the legal system, in the health system, and I think in the soul of Canadians,” Ms. Brayton said in a telephone interview. “It’s the last piece of our really becoming the country we need to become in terms of human rights.”

Other advocates welcomed the federal governments’ recognition of the need for action, but expressed reservations about the impact such a move could have. David Lepofsky, founder of the Accessibility for Ontarians with Disabilities Act Alliance and a long-time crusader for accessibility rights, said federal governments do not have jurisdiction over most of the programs with the greatest impact on the lives of disabled residents.

“Only provincial governments can take 95 per cent of the action people with disabilities desperately need to avert the disproportionate hardships that the COVID-19 crisis inflicts on them, including the horrifying risk that their disability could be used as a reason to deny them medical services during rationing,” he said. “We’re disproportionately vulnerable to get this disease, to suffer its harshest impacts and then to slam into serious barriers in our health care system.”

Robert Lattanzio, Executive Director of the Arch Disability Law Centre, shared Mr. Lepofsky’s concern. He said there is currently no uniform approach to disability inclusion during the COVID-19 crisis. While he applauded the federal government for acknowledging as much, he expressed hope that the advisory group would continually seek input from those without seats at the government table. “The disproportionate impact of this pandemic on persons with disabilities is undisputed, but it is playing out very differently across different provinces, territories, cities, and towns,” Mr. Lattanzio said. “We need voices from people with disabilities who are on the ground and who understand the complexity and nuances of what is actually happening.”

April 10, 2020 Announcement by Federal Accessibility Minister Carla Qualtrough

Originally posted at https://www.canada.ca/en/employment-social-development/news/2020/04/statement-by-minister-qualtrough-on-canadas-disability-inclusive-approach-to-its-covid-19-pandemic-response.html

Statement by Minister Qualtrough on Canada’s Disability-Inclusive approach to its COVID-19 pandemic response

From: Employment and Social Development Canada

April 10, 2020       Gatineau, Quebec       Employment and Social Development Canada

The Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion, today issued the following statement:

“From the onset of the outbreak of COVID-19, the Government of Canada has taken significant steps to curb the spread of this virus and to reduce its impacts on the health of Canadians and our economy.

We recognize that some groups of Canadians are significantly and disproportionately impacted by this pandemic, in particular Canadians with disabilities. For some persons with disabilities, underlying medical conditions put them at greater risk of serious complications related to COVID-19. Others face discrimination and barriers in accessing information, social services, and health care. For others, the need for self-isolation and physical distancing create additional challenges.

As we continue to address the COVID-19 outbreak, our priority will remain helping persons with disabilities maintain their health, safety, and dignity. This includes through more formal communication channels and touch points with the disability community.

To this end, we are establishing the COVID-19 Disability Advisory Group, comprised of experts in disability inclusion. This Group will provide advice on the real-time lived experiences of persons with disabilities during this crisis; disability-specific issues, challenges and systemic gaps; and strategies, measures and steps to be taken. Areas of particular focus will be equality of access to health care and supports; access to information and communications, mental health and social isolation; and employment and income supports.

From the onset, our Government has worked hard to ensure that the interests and needs of persons with a disability are being taken into consideration in our decisions and measures adopted in response to COVID-19. We have put a disability lens on decision-making and have been consulting national disability organizations and other stakeholders. We are also working with other levels of government. We are making strides on accessibility of public announcements and Government of Canada communications.

But we know that there is much more to do.

We have heard the concerns expressed by individuals and organizations for persons with disabilities, as well as their recommendations for ensuring a disability-inclusive approach to this pandemic.

Rest assured that as we support Canadians through this crisis, our Government is unequivocal in our commitment to the rights of every citizen and the value of every life, including the right to equal access to medical treatment and care. This is in keeping with our Government’s commitment to “nothing without us”, and in line with the principles and objectives of the United Nations Convention on the Rights of Persons with Disabilities and the Accessible Canada Act.”

April 10, 2020 Federal Government Backgrounder

Originally posted at https://www.canada.ca/en/employment-social-development/news/2020/04/backgrounder–covid-19-disability-advisory-group.html

Canada.ca Employment and Social Development Canada

Backgrounder : COVID-19 Disability Advisory Group

From: Employment and Social Development Canada

Backgrounder

During this time of public health and economic crisis, in the spirit of “Nothing Without Us” and the Accessible Canada Act, and in recognition of Canada’s domestic and international human rights obligations, the Government of Canada is committed to ensuring that it considers, respects and incorporates the interests and needs of persons with disabilities into its decision-making and pandemic response.

Persons with disabilities face unique and heightened challenges and vulnerabilities in a time of pandemic, including equality of access to health care and supports, access to information and communications, mental health and social isolation and employment and income supports. Additional vigilance is also required to protect the human rights of persons with disabilities during these times. This necessitates a disability inclusive approach to Government decision-making and action.

The Government of Canada is taking immediate, significant and decisive action by announcing the establishment of the COVID-19 Disability Advisory Group (CDAG). The CDAG will advise the Minister on the real-time lived experiences of persons with disabilities during this crisis on disability-specific issues, challenges and systemic gaps and on strategies, measures and steps to be taken.

Co-chaired by Minister Qualtrough, the Advisory Group will be comprised of individual experts from the disability community:

Co-Chair: Al Etmanski, is a writer, community organizer and social entrepreneur. He was welcomed into the world of disability in 1978 when his daughter was born. He led the closure of institutions, segregated schools, and sheltered workshops in BC, founded Canada’s first Family Support Institute, and initiated the precedent setting right-to-treatment court case for Stephen Dawson. In 1989, he co-founded Planned Lifetime Advocacy Network (PLAN) with his wife Vickie Cammack. PLAN lobbied into existence the Registered Disability Savings Plan. Mr. Etmanski sparked a national conversation about ‘belonging,’ and was instrumental in establishing a grass roots alternative to legal guardianship and expanding the legal definition of capacity. His last book, Impact: 6 Patterns to Spread Your Social Innovation is a national bestseller. His forthcoming book is The Power of Disability: 10 Lessons for Surviving, Thriving and Changing the World. He blogs at aletmanski.com.

Bill Adair, Executive Director, Spinal Cord Injury Canada. Mr. Adair offers a depth of provincial and national experience in the spinal cord rehabilitation field. As a former Ontario government employee, national task force leader and Director of the National Patient Services Program with the Canadian Cancer Society, he has nearly three decades of expertise in non-profit management and strategic leadership. Prior to joining Spinal Cord Injury Ontario, he was Director of the National Patient Services Program with the Canadian Cancer Society for 13 years. His involvement in providing services to people with disabilities includes serving as the Director of the International Year for Disabled Persons, the Executive Director of a national task force that designed a system to coordinate cancer control efforts throughout Canada, and the Founding Executive Director of Wellspring.

Neil Belanger, Executive Director of the British Columbia Aboriginal Network on Disability Society (BCANDS). Mr. Belanger has over 30 years of experience working within in Canada’s Indigenous and non-Indigenous disability and health sectors. Since 2013, BCANDS has been the recipient of eight provincial, national and international awards, the most recent being the Zero Project International Award presented to the Society in Vienna, in February 2019. He also serves in a variety of disability related advisory roles, some of which include: Canada Post’s Accessibility Advisory Committee; Minister’s Advisory Forum on Poverty Reduction; Minister’s Council on Employment and Accessibility; Minister’s Registered Disability Savings Plan Action Group and Board Member with Inclusion BC. He is a member of the Lax Se el (Frog Clan) of the Gitxsan First Nation and resides in Victoria with his wife and two children.

Diane Bergeron, President, CNIB Guide Dogs and Vice President, International Affairs.As President of CNIB Guide Dogs, Ms. Bergeron brings lived experience to the position. As a guide dog handler for more than 35 years, she raises her voice to challenge stigma and support equal rights. In addition, as vice president of International Affairs for the CNIB Foundation, she is actively engaged in regional, national and international initiatives that enable people impacted by blindness to live the lives they choose. Before joining CNIB, Ms. Bergeron held senior roles with the Government of Alberta and the City of Edmonton.

Bonnie Brayton, A recognized leader in both the feminist and disability movements, Ms. Brayton has been the National Executive Director of the DisAbled Women’s Network (DAWN) of Canada since May 2007. In this role, she has proven herself as a formidable advocate for women with disabilities here in Canada and internationally. During her tenure with DAWN Canada, Ms. Brayton has worked diligently to highlight key issues that impact the lives of women and girls with disabilities. Since 2016, Ms. Brayton has served as a member of the Federal Department of Women and Gender Equality (WAGE, formerly known as Status of Women Canada), Minister’s Advisory Council on Gender-Based Violence. She also presents regularly to Parliamentary and Senate Committees, at public consultations and has represented women and girls with disabilities in both Canadian and International spheres.

Krista Carr, Executive Vice-President, Canadian Association for Community Living (CACL). Ms. Carr was previously the Executive Director of the New Brunswick Association for Community Living (NBACL). She had been working with the NBACL for 21 years, the last 16 as Executive Director. She also holds a Bachelor of Business Administration in Marketing from the University of New Brunswick.

Maureen Haan: Ms. Haan has been the President & CEO of the Canadian Council on Rehabilitation and Work (CCRW) since 2012. CCRW is the only national organization with the sole vision of equitable and meaningful employment for people with disabilities, in operation for over 40 years. Under her leadership, CCRW has seen an increase in direct program service throughout Canada, as well as a more transparent, stream-lining of understanding the business case of hiring a person with a disability. She has been very active in the cross-disability sector, currently focusing on employment issues. Ms. Haan has been involved with numerous committees and groups that increase awareness of and access for the disability sector and the Deaf community, including involvement with civil society on the United Nations Convention on the Rights of Persons with Disabilities; and co-development and leadership of the pan-Canadian Strategy on Disability and Work.

Hélène Hébert, President, Réseau québécois pour l’inclusion sociale des personnes sourdes et malentendantes (REQIS). Ms. Hébert is the president of Reqis, a provincial organization defending the collective rights and promoting the interests of deaf and hard of hearing individuals. Its mission is also to contribute to the development and influence of its members through networking and knowledge exchange. She is also a member of VoirDire, a bi-monthly publication serving the deaf population of Quebec since 1983.

Dr. Heidi Janz, University of Alberta, Assistant Adjunct Professor with the John Dossetor Health Ethics Centre. Dr. Janz specializes in the field of Disability Ethics and has been affiliated with the John Dossetor Health Ethics Centre since 2006. She was previously the Curriculum Coordinator for an emerging Certificate Program in Disability Ethics in the Faculty of Rehabilitation Medicine at the University of Alberta. In her “other life,” Dr. Janz is a writer and playwright. Dr. Janz is also Chair of the End-of-life ethics committee for the Council of Canadians with Disabilities (CCD).

Rabia Khedr, CEO, Disability Empowerment Equality Network Support Services and Executive Director, Muslim Council of Peel. Rabia is a community leader who helps others with issues of fairness and justice that affect persons with disabilities, women and diverse communities. She was recently the Commissioner for the Ontario Human Rights Commission. Ms. Khedr created the Canadian Alliance on Race and Disability, which represents persons with disabilities and organizations at local, provincial and national meetings. She is also a member of the Mississauga Accessibility Advisory Committee. She is a motivational speaker and documentary commentator and has been awarded many awards, including a Queen Elizabeth II Diamond Jubilee Medal.

Dr. Michael Prince, Lansdowne Professor of Social Policy at the University of Victoria. He teaches courses on public sector governance and public policy analysis in the School of Public Administration and the School of Public Health and Social Policy. As a policy consultant, Dr. Prince has been an advisor to various federal, provincial, territorial, and municipal government agencies; four Royal commissions; and, to a number of parliamentary committees federally and provincially. An active volunteer, Dr. Prince has been a board member of a community health clinic, a legal aid society, a hospital society and hospital foundation, the BC Association for Community Living, and the social policy committee of the Council of Canadians with Disabilities.



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Ontario’s New Democratic Party and the Ontario Human Rights Commission Press the Ford Government to Take Substantially More Action to Address Ontarians with Disabilities’ Urgent Needs During the COVID-19 Crisis


Accessibility for Ontarians with Disabilities Act Alliance Update

United for a Barrier-Free Society for All People with Disabilities

Web: www.aodaalliance.org Email: [email protected] Twitter: @aodaalliance Facebook: www.facebook.com/aodaalliance/

Ontario’s New Democratic Party and the Ontario Human Rights Commission Press the Ford Government to Take Substantially More Action to Address Ontarians with Disabilities’ Urgent Needs During the COVID-19 Crisis

April 22, 2020

          SUMMARY

Here are even more calls for the Ford Government to take substantially more action to address the urgent needs of Ontarians with disabilities during the COVID-19 crisis. Below we set out four important recent documents showing this crisis. The first three are from the Ontario New Democratic Party, and the fourth is from the Ontario Human Rights Commission:

  1. On April 22, 2020, an NDP news release called on the Ford Government to include in a long-overdue emergency plan for people with disabilities a number of important measures, including mobile testing for people with disabilities who need to be tested for COVID-19.
  1. On April 17, 2020, NDP leader Andrea Horwath and NDP disabilities critic Joel Harden wrote to the Ford Government, combining to echo the AODA Alliance’s call for the Ford Government to create a focused plan to address the urgent needs of Ontarians with disabilities as part of its COVID-19 emergency planning. The NDP also echoed our call for the Government to consult the grassroots disability community on this. As their letter shows, the NDP was inspired to take this action by the April 7, 2020 online Virtual Public Forum on the impact of COVID-19 on people with disabilities that was jointly organized by the AODA Alliance and the Ontario Autism Coalition. In the two weeks since that virtual public forum, it has been viewed over 2,000 times. It remains available to be viewed online, with captions and American Sign Language interpretation.
  1. In the April 6, 2020 letter from NDP health critic France Gelinas to Ontario’s Health Minister Christine Elliott, the NDP urged the Government to re-open the shuttered Assistive Devices Program (ADP) and to treat it as an essential service for people with disabilities. The Government’s failure to do so is symptomatic of its larger and recurring failure to effectively address the urgent needs of Ontarians with disabilities during this crisis.
  1. In the April 6, 2020 letter from Ontario Human Rights Commissioner Renu Mandhane to Health Minister Christine Elliott, the Commission raised important human rights concerns with the Government’s controversial and secret March 28, 2020 medical triage protocol. Yesterday, as detailed in the AODA Alliance’s April 21, 2020 news release, the Government has walked back that protocol and agreed to consult human rights and community experts on it. We have not yet heard whether the Ford Government will include the AODA Alliance among those it will consult.

We thank and commend the NDP and the Ontario Human Rights Commission for these efforts. For more background, check out and widely share:

* The guest column by AODA Alliance Chair David Lepofsky in the April 20, 2020 online Toronto Star, which summarizes our major COVID disability issues in one place.

* 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.

* 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.

There have now been 447 days since the Ford Government received the groundbreaking 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 comprehensive plan of new action to implement that report. That is making worse the problems facing Ontarians with disabilities during the COVID-19 crisis.

There have been 28 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. The ordeal facing Ontarians with disabilities during the COVID-19 crisis is made even worse by that delay.

          MORE DETAILS

April 22, 2020 News Release from the Ontario New Democratic Party

Government must make in-home testing available for people with disabilities: NDP

Province needs a plan to meet the needs of 2.6 million Ontarians with disabilities

QUEEN’S PARK — The Official Opposition is calling for the Ford government to make COVID-19 testing available at home for people with disabilities who face barriers trying to travel to testing sites.

“There are 2.6 million Ontarians living with disabilities, yet Doug Ford has not announced any plans to support them during the pandemic — despite the fact that many people with disabilities are among the most susceptible to COVID-19, and often face barriers in accessing testing and treatment,” said Andrea Horwath, Leader of the Official Opposition.

“Access to testing must not discriminate based on ability,” said Joel Harden, NDP critic for Accessibility and People with Disabilities. “If we are truly all in this together, that means making sure every Ontarian who should get a test can get one.”

Harden said that for people like John Mossa, the testing system simply excludes them. Mossa has a mobility disability, and fragile health with limited lung function. When he came down with cold-like symptoms, including a cough, he felt he needed a test — but would have needed a PSW to go along with him to a hospital or assessment centre, and worried about exposing his weak system to transit staff and others along the way. Ultimately, medical professionals advised him not to get a test, because the risks were too great and supports too few.

“People with disabilities, their families, and their caregivers cannot be an afterthought in the government’s response to COVID-19,” said Harden. “We need urgent action to ensure that their needs are met during this pandemic.”

Home-based tests for people with disabilities should be delivered by workers wearing full personal protective equipment, noted Harden.

Horwath and Harden wrote to Doug Ford calling for his government to adopt a plan in consultation with experts and grassroots disability community leaders. The plan should include, but not be limited to:

  • Adopting a clinical triage protocol that respects the human rights of people with disabilities
  • Ensuring that attendant care workers who help people with disabilities in their own homes have access to personal protective equipment
  • Resources and clear guidelines to support 330,000 special education students with e-learning
  • Provide remote and distance supports to assist the families of people with developmental or intellectual disabilities living with them, to provide respite for family members during mandatory periods of isolation at home
  • Declaring the Assistive Devices Program an essential service so that no one is deprived of critical mobility or medical aides

Media contact: Jodie Shupac, 416-806-9147

Quotes

 

John Mossa, Toronto:

“There should be COVID testing in the home of people with disabilities, especially if they are symptomatic, to prevent community spread and properly treat their illness. It is an accessibility accommodation the government should provide to vulnerable Ontarians – in keeping with the AODA.”

April 17, 2020 Letter to Premier Doug Ford from the Ontario New Democratic Party

April 17, 2020

Premier Doug Ford

Room 281

Legislative Building, Queen’s Park

Toronto, ON M7A 1A1

Dear Premier,

We write to you having convened an urgent discussion with disability rights groups and leaders within this important sector. We are urging your government to adopt a comprehensive plan in consultation with them that ensures people with disabilities’ needs are met during this pandemic.

There are 2.6 million people with disabilities in Ontario, and their concerns are not being properly addressed in our province’s response to COVID-19. The same is true for their paid and unpaid caregivers. These are among the most vulnerable people to the spread of the virus.

Ontario has not announced a disability strategy for COVID-19, and the government has not responded to repeated appeals by grassroots disability rights groups. These groups have identified a number of concerns with respect to the government’s response, including but not limited to:

  • Attendant care for Ontarians with disabilities is also precarious given the lack of access to personal protective equipment. Social distancing is impossible between care workers and their disabled clients, so the lack of access to PPE presents a real threat to the spread of COVID-19.
  • Over 330,000 children with disabilities are currently attempting to learn from home with little or no strategy or support from the Ministry of Education. We cannot assume that all families and students can easily adjust to online learning, particularly when the format itself can be a barrier.
  • Ontario’s Assistive Devices Program was not declared an essential service under COVID-19, and has effectively ceased functioning. This has left thousands of disabled Ontarians without access to the crucial supports they need.

Last week, the AODA Alliance and the Ontario Autism Coalition convened a virtual town hall that brought together a variety of experts and disability rights organizations. They presented a number of recommendations that would help key departments, including health and education, in the fight against the virus. We urge your office to reach out to them without delay so these ministries get the best advice possible.

Ontario has a legal obligation to ensure no new barriers are created for people with disabilities, and that requires ensuring their voices are heard as our COVID-19 response continues.

In the end, Ontario will be judged by how we care for the most vulnerable among us during COVID-19. We urge you to consult experts and grassroots leaders from the disability community, and take immediate action given what you hear.

Sincerely,

Andrea Horwath                                                        Joel Harden

Leader of the Official Opposition                              MPP for Ottawa-Centre

Cc: Minister Raymond Cho, Minister for Seniors and Accessibility

April 6, 2020 Letter from Ontario NDP to the Ontario Health Minister

Hon. Christine Elliott                                                             April 6, 2020

Ministry of Health and Long-Term Care

5th Floor, 777 Bay Street

Toronto, Ontario M7A 2J3

Minister Elliott,

I understand the need to keep employees safe and take the advice of Public Health during this pandemic. Your office has shared with me that the ADP is closed. I am concerned with the impact the closure of the Assistive Devices Program office is having on families across Ontario. I would like to share a few examples with you.

In London, a palliative cancer care patient was taken home by her husband in order to decrease the occupancy rate and free up a bed at the hospital. Dave Houghton tried to re-apply to ADP to restore his wife’s grant for ostomy supplies and possibly rent/purchase a chair lift. The LHIN agreed to provide the ostomy supplies this month but supplies for next month are in limbo. Approval of funding for the needed chair lift, remains in limbo too as the ADP is closed.

In Windsor, a family needed an enteral feeding pump for the first time. They rented this from an ADP vendor. They tried to apply to ADP for funding to purchase a pump outright – but the Office is closed. The LHIN paid to rent the pump for April but no one knows where funding will come from for May, since the ADP is closed.

In Barrie, 16-year old Ten Morgan needs a power wheelchair. She has an undiagnosed muscular condition that leaves her flat in bed most of the time. She is unable to hold herself upright. Her second-hand wheelchair was sized for a 7-year old so she cannot attend school as a result. Her family applied for a power wheelchair to ADP over one year ago, but a response was not received before the Office closed.

These situations create hardship for families in this stressful time. The services of the Assistive Devices Program are needed now, during the pandemic, as hospitals try to free up as many beds as possible. I know ADP has made financial arrangements so vendors are not too affected. Similar arrangements are needed for patients. Families with loved ones living with serious medical conditions have enough to deal with and they should not be left scrambling to find funding for medically necessary supplies and mobility devices because the ADP is closed.

Minister, I hope you will find a way to make the services of the ADP accessible to the families who need them.

Regards,

France Gelinas

Official Opposition Health Critic

MPP, Nickel Belt

April 9 2020 Letter to the Ontario Minister of Health from the Ontario Human Rights Commission

April 9, 2020

The Honourable Christine Elliott

Minister of Health

College Park, 5th Floor

777 Bay Street

Toronto, Ontario

M7A 2J3

[email protected]

Dear Minister Elliott:

RE: Potential human rights issues in the Ministry of Health’s COVID-19 response

I hope this finds you and your team safe and healthy. On behalf of the Ontario Human Rights Commission (OHRC), thank you for your ongoing efforts to address the COVID-19 pandemic.

The OHRC is ready and willing to assist the government to proactively consider, assess and address human rights concerns related to the COVID-19 pandemic. As you may know, last week, the OHRC released policy guidance to help Ontario adopt a human rights-based approach to pandemic management.

I am writing today to encourage the Ministry of Health (MOH) to engage with the OHRC on COVID-19 responses that raise potential human rights issues, including but not limited to:

  1. MOH’s development of a “clinical triage protocol”
  2. Collection and public reporting of human rights-based data related to COVID-19.
  1. Clinical triage protocol

The media has recently reported that Ontario is developing a clinical triage protocol to address limited critical care capacity in anticipation of a potential major surge in COVID-19 cases. Disability rights groups have contacted the OHRC because they are concerned that such a protocol could have a disproportionate and discriminatory effect on Ontarians with disabilities.

Development of such protocols is obviously complex, raising many difficult ethical and moral questions. However, it is vitally important that any process to develop clinical triage protocols include, not only medical professionals and ethicists, but also human rights experts and representatives from vulnerable groups that may be disproportionately affected by its operation, including people with disabilities, older persons, Indigenous and racialized people, etc.

 

Consistent with the its Actions consistent with a human rights-based approach to managing the COVID-19 pandemic, the OHRC strongly recommends that MOH establish a mechanism to ensure human rights oversight and accountability before finalizing any clinical triage protocol.

To this end, the OHRC would be pleased to support MOH by providing input on the protocol, either informally or as part of the ethics table established for the government’s coordinated COVID-19 response.

  1. Human rights-based pandemic data

The OHRC is also concerned that the COVID-19 pandemic may have a disproportionate and potentially discriminatory effect on Code-protected groups. As such, MOH must collect and publicly report on human rights data to properly assess and address these impacts.

It is clear that some vulnerable groups may have a more difficult time following public health guidance around isolation and physical distancing, which may increase their risk of contracting COVID-19. These vulnerable groups include people with disabilities and addictions, Indigenous and racialized people, women and children facing domestic violence, people who do not have access to stable housing, amongst others. At the same time, people from vulnerable groups may be over-represented in essential service professions (cleaners, cashiers, construction workers etc.) and tend to be recipients of essential services themselves.

The immediate risk to vulnerable groups is amplified when one considers pre-existing health inequalities and poor health outcomes within these communities, especially and including Indigenous communities. In the United States, for example, media reports indicate that Black Americans comprise 70% of reported COVID-19 deaths in Chicago while making up only 29% of the population. In Louisiana, where Black Americans make up one-third of the population, the media reports that they represent 70% of COVID-19-related deaths.

Unfortunately, unlike many jurisdictions outside Canada, MOH’s public data on COVID-19 is not disaggregated on human rights grounds and cannot be used to identify any disparate impacts on vulnerable groups. This is a serious problem and should be immediately remedied to ensure that Ontario’s short-term and long-term response to the pandemic is effective and equitable.

The OHRC has extensive experience advising governments and other public bodies on the collective and reporting of human rights-based data, and would be pleased to assist MOH in developing the necessary protocols in the context of COVID-19.

Please do not hesitate to contact me to discuss these issues further.

Sincerely,

Original Signed by

Renu Mandhane, B.A., J.D., LL.M.

Chief Commissioner

cc:        Hon. Doug Downey, Attorney General

Roberto Lattanzio, Executive Director, ARCH Disability Law Centre

David Lepofsky, Chair, AODA Alliance

OHRC Commissioners



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Disability Community Wins Interim Step Forward – Ford Government Backs Down on Its Controversial Secret Protocol for Rationing Critical Medical Care During the COVID Crisis and Agrees to Consult Human Rights and Community Experts


ACCESSIBILITY FOR ONTARIANS WITH DISABILITIES ACT ALLIANCE

NEWS RELEASE – FOR IMMEDIATE RELEASE

Disability Community Wins Interim Step Forward – Ford Government Backs Down on Its Controversial Secret Protocol for Rationing Critical Medical Care During the COVID Crisis and Agrees to Consult Human Rights and Community Experts

April 21, 2020 Toronto: Today, after mounting pressure from Ontarians with disabilities and others, the Ford Government appears to have backed down on its controversial secret protocol for rationing critical medical care during the COVID crisis, and has at last openly agreed to consult with human rights and community experts. We urge The Government to confirm that it will include the AODA Alliance and others from the grassroots disability community among those it will consult. (Letter from the Ford Government set out below)

Within the disability community there has been wrenching worry and mounting public pressure, because the Ford Government had in circulation a secret document that spells out how scarce medical care would be rationed or triaged if, for example, there were not enough ventilators for all the COVID patients needing them. For example:

* On April 8, 2020, the ARCH Disability Law Centre made public an open letter to the Ford Government, signed by over 200 community organizations (including the AODA Alliance). That open letter raised grave concerns that the Ford Government’s secret COVID medical rationing or triage protocol threatened to discriminate against some patients with disabilities.

* On April 18, 2020, CBC posted online a guest column by two respected law professors raising human rights concerns.

* On April 20, 2020, the Toronto Star posted online a      guest column by AODA Alliance Chair David Lepofsky raising these concerns, among others.

In an open letter made public earlier today from Ontario’s Ministers of Health, Seniors/Accessibility and Community and Social Services, set out below, the Ford Government appears to have backed down and distanced itself from its controversial secret protocol. It is especially important that the Government committed as follows:

“We believe that a human life cannot be valued differently. As such, Ontario Health has been asked to consult with the Ontario Human Rights Commission, as well as human rights and key community experts, to make certain that any medical protocols that may be required during this outbreak do not disproportionately affect vulnerable groups, including people with disabilities, older persons, Indigenous communities and racialized people.”

“This is an important relief and a helpful step forward, but only an interim relief. It is one for which we should not have had to tenaciously fight, while isolated in our homes struggling with this COVID crisis, said David Lepofsky, chair of the non-partisan AODA Alliance which has been working alongside many others to get this medical triage protocol rescinded. “This is but one illustration of the pressing and enormous need for the Ford Government to work with the grassroots disability community on strategies to stop this COVID crisis from disproportionately harming Ontarians with disabilities.”

Despite this step in the right direction, there are also concerns with the Government’s statement:

* As an effort to distance itself from this controversial triage protocol, The Government claims this triage protocol was only a draft, even though the document was not labelled “draft”, as draft Government documents always are. The Ford Government must explicitly rescind the March 28, 2020 triage protocol already in circulation, and direct that it is not to be followed.

* The Ford Government also tries to distance itself from its controversial triage protocol by claiming it was developed by Ontario Health. Yet Ontario Health is an agency of the Ontario Government to which the Ford Government has given a substantially expanded mandate. , the Ford Government appoints its board of directors and funds it. In a system of democratic responsible government, the buck stops with the Government and the Premier, especially on such matters of life and death.

* The Government states that in creating this controversial triage protocol, Ontario Health “worked with critical care experts and bioethicists to develop a clinical triage protocol to support frontline physicians…” This in effect concedes that Ontario Health did not include the voices of the grassroots disability community, against whom the protocol threatened discrimination in access to life-saving critical medical services. We question whether the Government got legal advice in this area that so obviously touches on human and constitutional rights. There needs at the right time to be a serious look into how this unacceptable protocol was allowed to happen, even if it were only a draft.

* This open letter does not reaffirm the important commitment of Ontario Health Minister Christine Elliott, reported in the April 8, 2020 Toronto Sun, that any such protocol must be approved by Ontario’s Cabinet. Instead, this open letter leaves the strong impression that this is now all being left to Ontario Health (from which the Government is evidently trying to distance itself). It is vital that no such life and death matter be left to such a Crown agency as Ontario Health, with our elected leaders distancing themselves from responsibility for it. It is vital that Premier Ford clear this up by reaffirming that no COVID medical triage or rationing protocol will be adopted for Ontario until and unless it is approved by Ontario’s Cabinet.

We are eager to directly work with the Government on this issue. To that end, last week, we made public a helpful Discussion Paper on ways to prevent discrimination against patients with disabilities in access to critical health care during the COVID crisis.

If there is a revised draft of this medical triage protocol already prepared or in the works, the Government should immediately make it public so that we all can study it and offer swift feedback on it. It has not yet done so.

Contact: AODA Alliance Chair David Lepofsky, [email protected]

Twitter: @aodaalliance

April 21, 2020 Open Letter from Ontario Minister of Health, Minister of Seniors and Accessibility, and Minister of Children, Community and Social Services

From the very outset of the COVID-19 outbreak, we have been driven by a clear commitment to protect the health and wellbeing of all Ontarians. This has included taking decisive action to stop the spread of this virus and ensuring the province’s readiness to respond to a wide range of new outbreak scenarios.

The government’s immediate priority since the very beginning of this outbreak has been to significantly expand both acute and critical care capacity in our province’s hospitals, including the number of ventilators.

As part of this response, Ontario Health, an arms-length Crown agency, has worked with critical care experts and bioethicists to develop a clinical triage protocol to support frontline physicians in the event the system is faced with the near-impossible circumstances that require the allocation of severely constrained critical care resources caused by a major surge. To be clear, this protocol is a draft document developed by Ontario Health. It has not been approved or authorized by our government.

We believe that a human life cannot be valued differently. As such, Ontario Health has been asked to consult with the Ontario Human Rights Commission, as well as human rights and key community experts, to make certain that any medical protocols that may be required during this outbreak do not disproportionately affect vulnerable groups, including people with disabilities, older persons, Indigenous communities and racialized people.

If hospitals are indeed faced with near-impossible circumstances, those critical decisions must be left with those highly-trained medical professionals providing care on our front lines. They are best positioned to make those difficult decisions, on an individual basis.

We would like to once again thank you for your ongoing and considerable efforts in supporting Ontario’s continued response to COVID-19. Together, we will stop the spread of this virus and protect the health of all Ontarians, including and especially our most vulnerable.

Sincerely,

Christine Elliott

Deputy Premier

and Minister of Health

Todd Smith

Minister of Children, Community

and Social Services

Raymond Cho

Minister for Seniors

and Accessibility



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