Action Kit: STOP Autism Speaks from Controlling Canadian Autism Policy

Screen Shot 2019-11-30 at 12.40.12 PMSign the Petition here!

We are at a crisis moment in Canada. Autism Speaks, an organization that is broadly condemned by autistic people, is poised to be in control of much of Canada’s autism policy. This includes funding for health, housing, police education, and social services. They are doing this through a proposed national policy initiative called the National Autism Strategy.

Every autistic-led advocacy group in Canada opposes the National Autism Strategy.

Instead, we want government to include autistic people within its broader disability policies. This is crucial to our human rights.

Please Take Action: See “Act Now” at the bottom of this page.

10 Fast Facts

Autism Speaks is acting with and through two Canadian non-profits that it funds, CASDA and the Pacific Family Autism Network, to create the “National Autism Strategy.”

  1. The Vice Chair of the Executive Board for CASDA is also the President of Autism Speaks Canada.
  2. Autism Speaks is a Capital Lead Partner at PAFN and a Collaborator of CASDA.
  3. The 3 groups are working with a handful of MPs to establish dominance in autism funding decision-making.
  4. They are deciding the future of autistic Canadians while excluding our national advocacy groups from the discussion.
  5. Decisions are being made with little to no study of best practices elsewhere or meaningful consultation.
  6. There is no oversight for effectiveness of money spent on of existing plans, despite hundreds of millions being spent.
  7. 80% of federal housing dollars in the autistic & I/DD sector go towards segregated housing.
  8. In some provinces, 90% of all “autism funding” goes to ABA.
  9. There are no meaningful federal jobs programs or workplace accessibility measures for autistic Canadians.
  10. Our suicide rate is 12x higher than non-autistic people. This is because we are living segregated lives, most of us in poverty, with no federal acknowledgement of our communication and access rights.

Our lives are in the balance

Already, the Government has given $10 million to PAFN and the Miriam Foundation to make a website that will contain advertisements for segregated service (IBI/ABA) providers and for Autism Speaks and its partners. This is taxpayer-funded advertising for services (ABA) that the global autistic community has stated clearly cause us collective harm!

As well, there is no public record of any bidding process for this or other contracts. We asked the Public Health Agency of Canada to share records that should be on public reference pages (but are not) and they have been ignoring our requests for 10 months. Our Access to Information Act requests have been stalled in the queue for months.

The hope

If our government integrates autistic people into existing disability policy, we have the opportunity to be directly consulted (per federal mandates) to build programs for school, employment, assistance, services and the access equality we deserve as Canadians. We would also be able to make access claims, something we cannot do now when we are denied access in any aspect of public life.

Government of Canada: Autistic/IDD people are NOT objects of your “strategy”. Autistic-led groups must be the central voice and architects of a new policy paradigm that draws on best practices for access, inclusion and equity!

Our groups are already advising provincial governments, institutions of higher education, provincial employment agencies and hospitals. Likewise we can and should lead in the federal policy discussion on school inclusion, independent housing, employment, communication rights and other access matters. Canada’s federal government needs to end the shameful practice of “strategizing” about us and instead meaningfully involve our national self-advocacy groups in disability policy.

Act now

Here are some simple steps you can take to ensure your voice is heard and that the fundamental rights of autistics in Canada are protected.

Please sign our petition and send a letter/email

If you have access to send a letter in the mail please do that, as they will get read faster.
Thank you!

    1. Sign our Petition Here
    2. Send Letters

Send a letter to your MP
Sample Letter: MP_Letter_Autistic_Canadians
Find your MP’s Address

Send a letter to Canada’s Health Minister, Hon. Patty Hajdu
Sample Letter: Health_ Minister_Letter_Autistic_Canadians
Find Minister Hajdu’s Address

Send a letter to the Disability Minister
Sample Letter: Min_Qualtrough_Autistic_Canadians
Find Minister Qualtrough’s Address

Write to the Prime Minister
Sample Letter: PM_Letter_Autistic_Canadians
Find Prime Minister Trudeau’s Address

Write to disability organizations in your area
Sample Letter: Letter_Disability_Rights_Autistics

Other Resources to share on social media

Fact Sheet on Autism Speaks: Why We Oppose Autism Speaks

Statement: Canada’s Autistic Self-Advocacy Organizations Oppose the National Autism Strategy

The Petition

Letter to Public Health Ontario: Create uniform protocols for disabled patients’ communication access

Dear Public Health Ontario:

We are writing to ask Public Health Ontario to follow the lead of California and other jurisdictions by putting protocols in place to ensure safety for patients who require an assistive communication device (AAC) or a support person for communication when admitted to hospital or visiting a clinic.

The California Department of Public Health has recently put such a protocol in place, by way of an All Facilities Letter. The letter specifies:

“That health facilities may permit a support person to accompany a patient for whom a support person has been determined to be essential to the care of the patient (medically necessary), including patients with physical, intellectual, and/or developmental disabilities and patients with cognitive impairments.”

Preventing a Care Crisis
We need communication access guidelines for Ontario hospitals, now. Currently, every hospital has its own unique approach to whether a non-speaking disabled person will be able to access their communication device or support person.

This leads to crises that could be easily prevented. For example last week, staff at Toronto Grace Hospital shut off patient Tommy Jutcovich’s AAC device, which he uses to communicate, calling it a “surveillance tool.” Tommy, who cannot speak due to a neurodegenerative disorder, was not able to communicate with staff or engage in his daily prayers without his AAC.

At some hospitals, disabled adult’s crucial support workers have been turned away. This can escalate health and safety risks. As the Autistic Self-Advocacy Network writes, some patients “may have trouble communicating, understanding what is happening, or even being able to do basic things like eat or use the bathroom.” Yet there is no uniform standard to ensure this support during the COVID crisis in Ontario.

We recognize that some visitor limits are important to help prevent the spread of COVID-19, but we also know that there are proven best practices to maintain safety while admitting crucial support workers for autistic, intellectually disabled people, and those with other disabilities. 

A Uniform Guideline
Right now, each hospital in Ontario has a different AAC policy and each takes its own approach to whether and when to allow disabled people’s support persons entry. There are also no guarantees of whether a non-speaking patient will have access to their communication device (AAC), because the decision is up to the individual health providers working on that particular shift.

We are hopeful that the Government of Ontario will review best practices and quickly develop a guideline that builds on California’s model, to create a safer, more compassionate setting in every hospital across the province. Communication is a right and there are safe ways to ensure this right is protected.

Thank you.

Autistics for Autistics, Ontario

To our allies in the Canadian disability community: Please do not support Autism Speaks or the National Autism Strategy

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Open Letter to Canadian disability rights organizations:

As autistic people, we are honoured to be working with you for disability justice. Our partnerships, friendships and connections are precious to us. Thank you.

We are writing because it is important for you to know about a specific group that is actively working against autistic human rights. We are asking that you do not endorse or work with this group because, in our view, to do so is to threaten the well-being and safety of autistic people. That group, Autism Speaks, is an organization with a “eugenics” focus that is the driving force behind the proposed National Autism Strategy in Canada.

Autism Speaks, despite its name, does not speak for autistic people. When polled, 98% of autistic adults oppose Autism Speaks –and there is a massive global movement by autistic people and allies to stop Autism Speaks. In fact, regardless of the many differences among autistic advocates about politics and advocacy, there is one view we pretty much ALL agree on: that Autism Speaks is a hate group.

Some reasons:

Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born.

  •  Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it.
  • The DNA is extracted without the children’s permission.
  •  It is done with the purpose of identifying “autism genes” that will then be used in prenatal testing.
  •  If common genes are identified through this research, people will do prenatal testing and terminate pregnancies if they think there are “signs of autism”.
  • This project is active in Canada. Autism Speaks Canada has earmarked hundreds of thousands of dollars to its own arm of the project. A group of geneticists in Toronto has also been involved in collecting data for the database.
  • One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”.
  •  In addition to the basic eugenics of the MSSNG project, consider also the message that MSSNG sends to those of us who are right here, now: that our lives are not worth living and we would be better off to never have been born.
  • It also compromises the privacy rights of an entire disabled population as parents proxy-consent to their children’s DNA being stored and shared throughout their lifetimes.
  • In addition to MSSNG, Autism Speaks funds the Autism Tissue Program (Autism BrainNet), a network that distributes brain tissues donated by parents of deceased autistic children for “research into the causes of autism.”
  • Autism Speaks co-founder Susan Wright has publicly wished for a future in which autism is “a word for the history books.
  • In Iceland, the type of genetic testing that the MSSNG project does, is already being used for the mass-abortion of fetuses with Downs Syndrome.
  • As Ontario mom Deanne Shoyer recently wrote: “I’m not going to support any organization who wishes my sons could have been prevented.”

From its inception, Autism Speaks has built its fundraising enterprise on telling stories about autistic people that portray us as a burden on our families.

  • Their 2009 video “I Am Autism” is narrated by a disembodied gravelly-throated man with images of autistic children as though they are sub-human, saying:

“I am Autism. I know where you live and I live there too. And if you’re happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own personal gain. I will make it impossible for your family to attend any events without a struggle, without embarrassment, without pain. …You have no cure for me.”

  • In the US, the Autistic Self-Advocacy Organization recently cut ties with Sesame Street and the Ad Council for their partnership with Autism Speaks on its “100 Day Kit,” which: “encourages parents to blame family difficulties on their autistic child and to view autism as a terrible disease from which their child can ‘get better.’”
  • In Autism Speaks’ 2006 video Autism Every Day, its Executive Vice President Alison Singer described how she dreamed of driving her autistic daughter “off the George Washington Bridge”. The story was used to gain sympathy for the “tragedy” of autism – and gain donor dollars for the organization.
  • Autism Speaks merged with a sister organization, Cure Autism Now in 2006. Toegther they have dedicated many years and hundreds of thousands of dollars into researching the hypothesis of disgraced expert witness Andrew Wakefield that vaccines “cause” autism.
  •  In the view of many, Autism Speaks contributed directly to the anti-vaccination movement, with many parents of autistic children refusing to vaccinate their subsequent children. The belief behind it: “I’d rather my child suffer/die of measles than be autistic” impacted not only the individual children, but the entire disability community.
  • In 2016, co-founder Suzanne Wright released a public statement prior to a national summit referring to the “autism crisis” and equated having a child with autism to “not living.”
  • We don’t want a “cure”. We want to be accepted for who we are, and given access to all the rights that non-autistic people enjoy in our country.

Autism Speaks’ projects are built on the medical model of disability, which keeps us segregated and oppressed. 

  • Autism Speaks’ national march in Washington DC recently featured the Judge Rotenberg Center (JRC) at its Family Resource fair. The JRC has been sanctioned by the US government for using shock torture on residents at its facility.
    • The United Nations has condemned the JRC’s practices as torture, the U.S. Department of Justice’s civil rights division is investigating the JRC and the FDA has recently banned the JRC’s shock torture.
    • Yet the institution remains remorseless even though 6 residents have died directly or indirectly as a result of torture there.

Autism Speaks Canada is a major funder of CASDA, who collaborates with Autism Speaks on the proposed National Autism Strategy

We want you to know that if you partner with CASDA, you are also partnering with Autism Speaks–and in our view working against the ideals of disability justice. The issue of who controls autism policy in Canada is also about who controls our lives and/or whether we even get to live them. That’s why we’re reaching out, because this is extremely important for the future well-being of us all.

Thank you for taking the time to read this letter. If you have more questions, please contact us anytime. Thank you.

In solidarity:

-Autistics for Autistics Canada

PDF of the Letter: Open Letter to Canada’s Disability Rights Groups



CKUT Interview: AAC, COVID-19 and Disability Access (2 of 2)

3 geese apart signCKUT Radio (Montreal) interviewed A4A members about COVID, neurodiversity and access to health care, for its disability rights program The Avalanche.

In Part 2, A4A Executive Board member Darla talks about AAC and health care access the age of COVID.

Listen by clicking Play button below, or read the full transcript below (or in PDF).

Many thanks to show producer Zosia, to Avalanche and to everyone at CKUT for their in-depth coverage on COVID.

PDF of Transcript: CKUT_transcript_Darla_AAC_Access_COVID19


Zosia: Hello, welcome to the show. Would you be able to introduce yourself to the audience?

Darla: My name is Darla. I am an autistic self-advocate and AAC user from Ottawa, Canada. I work as an e-learning specialist and freelance editor and technical writer. I am also a member of the autistic self-advocacy group, A4A, and have been involved in some of our presentations to community groups.

Zosia: So, what is AAC?
Darla: AAC stands for augmentative and alternative communication, which is a very proverbial long mouthful of a phrase. AAC is essentially any method used to communicate which is not mouth speech.

Most often it is using either a specialized app or device, a board, or a book of symbols or letters. In high tech AAC, the user selects symbols corresponding to words or phrases, or types on a keyboard, and the program will read what we say out loud. In low tech forms, like a letter board or a book of symbols, the person will point or indicate via eye gaze which they mean and a communication partner will interpret them.

For example, I use two different apps for Apple devices, Proloquo2Go and Proloquo4Text, which are made by a Dutch company called AssistiveWare. Proloquo2Go uses symbols, so if I want to order a large black coffee I might touch the symbols for I, would, like, a, large, black, and coffee, and then I would have the device speak my message. But I mostly use Proloquo4Text, which is a text to speech app. It also lets me type and store messages and responses, so I can prepare what I will say at a meeting or appointment beforehand and play it when I need to. But everyone uses some form of AAC. Text or instant messaging, Facebook posts, even sending memes is a form of AAC.

Some people also use sign language, although there is some contention in calling it AAC as it is the primary language of the deaf community and thus is not an alternative.
Zosia: So what has been developed to aid those using AAC to communicate about COVID-19?

Darla: The level of support coming from the AAC community overall has been just fantastic. One company, CoughDrop, expanded their trial period to four months so that people who used the app on a device owned by a school or day program could remain connected with their support teams. AssistiveWare has started organizing video chats, some for families, some for adult users, to keep people connected and help maintain community. Nonprofits like Communication Disabilities Access Canada, and the International Society for AAC, ISAAC, have been putting out a lot of materials to assist there. Disabled self-advocacy groups have been doing some amazing work writing clear language explanations and suggestions of what to do and how to cope.

Zosia: Do you feel that the accessibility measures regarding language have been adequately shared to those needing them?
Darla: That is a really good question…and I am honestly not sure. The issue with any disability advocacy is that it always transmits well within a limited circle, but outside of those circles things get more complicated. With that said, groups like CDAC and ISAAC have done phenomenal jobs communicating with their members. So…I guess I hope that they are getting shared far enough, but I worry that there will always be communities–especially since many resources are just produced in English–which are not reached.

Zosia: And have Canada’s governments, or international bodies like the World Health Organization, released information for AAC or has it been primarily created by the community that uses it?

Darla: It’s been pretty much entirely coming from the AAC community. I don’t think I have seen anything from WHO or Health Canada or the like specifically speaking to AAC users.

Zosia: What are the benefits of these softwares being community-sourced and how can official information be beneficial?

Darla: Oh. Wow. Tough question. So, the benefit of working with the AAC community is the same as any software developer working with their user base. We help identify major issues and changes that would help us the most.

For instance, many of us need to make phone calls for things like medical appointments, but don’t always have someone else to make the call for us. So AssistiveWare recently added a feature to their apps which lets them interface with the phone function of iPads and iPhones so that what you type is heard by the person you are speaking with. This has been a game changer, especially during social distancing and isolation where we cannot visit friends or loved ones, let alone our doctors or therapists.

Zosia: What needs to be implemented to ensure proper care for those requiring AAC should they contract Coronavirus?

Darla: That is a scary question. First, all AAC devices and objects need to be cleaned thoroughly, as they are high touch, high contact items, meaning they can be vectors for the virus to spread. AAC users may require more communication support, as being sick and feverish makes communication harder. For me, for example, when I am sick I have a lot more trouble with motor planning, and I stim a lot more, so I will use a symbol app like Proloquo2Go because typing is harder.

We may also see otherwise abled people benefit from AAC use because they are intubated or unable to speak due to coughing. Everyone benefits from wider AAC access during these situations.

But COVID is also a real threat to the AAC community because so many people with communication disabilities are often in other high risk groups. They may have other conditions which weaken their immune systems, or have a greater tendency towards respiratory illness or infection, or a greater difficulty with maintaining hand hygiene due to physical or developmental disability.

Zosia: Do hospitals already have AAC software available should people needing the technology be hospitalized due to COVID-19 symptoms?

Darla: Honestly, the state of AAC in hospitals has been very haphazard. There is not a lot of education about AAC use, especially from individuals who are independent or not visibly physically disabled.

There is a huge issue in the medical community where care providers speak to support workers or parents instead of the disabled patient. There have also been cases where people’s devices have been taken away from them for various reasons that amounted to ignorance of what a device is for or what a person is capable of for communication.

There is very little direct training on AAC use, and if it comes from any department it generally comes from the speech language pathologists, and hospitals generally will not be providing the software. At best they might have some printed-off symbol or letter boards, but even that is very up in the air. This is especially bad for patients who are admitted for mental health issues, as they are very likely to have their device removed, especially if they have a record of any speech ability. Given that many autistic people who use AAC may also have mental health problems, this is a huge issue.

Zosia: What are other accessibility concerns during this pandemic for non-verbal or minimally-verbal people?

Darla: The biggest accessibility concern, and fear, is this: If I go into the hospital full of unfamiliar people, will they respect my communication? Will I be allowed to keep my device? Will my competence be presumed or will they infantilize me and treat me like a child? Will I be allowed to make medical decisions for myself? Another issue is that describing my body and what is going on inside it is very difficult for me, and for many others. If I suspect I have COVID, will a doctor or nurse take that seriously? Will I be able to speak with someone over the phone who will understand my device?

These concerns are very real, and a lot of people are grappling with them, but I am unsure how best to deal with them. One thing I do recommend is that AAC users and/or those supporting them come up with a plan for hospitalization. Have a fully written-up list documenting disability, medications, necessary equipment, how to best communicate with us, etc. I have seen some great resources for this from groups like CDAC, and I have a lot of stuff programmed into my device should I be hospitalized to help there also.

Zosia: Do you feel that the government has done enough to protect disabled lives during this pandemic?

Darla: In Canada, I think there is more awareness of it, but people are also seeing what is happening in places like Italy and America, where hospitals are publicly stating that they essentially do not value the lives of disabled people as much of those of abled. Hospitals in America are saying that they will confiscate medically necessary ventilators from disabled people who are hospitalized, even if it’s not related to COVID-19 and the person has a good chance of surviving. This is going to reduce the trust that the disabled community places in hospitals.

There is also the issue that while many Canadians are receiving financial help, financial supports for disabled Canadians have not gone up in years, and yet disabled people who cannot work are still expected to pay increasing rent and inflated prices as food and medical supply costs continue to rise. I worry what may happen in Canada, and I would like to see our government speak out clearly in support of its disabled citizens. Disabled lives are already undervalued by the medical system, and we must act to ensure that disabled children and adults are not sacrificed in the name of expediency.

I am not in ODSP [Ontario Disability Support Program] but my friends who are on it are definitely feeling a lot of distress right now over it. However, I don’t think we will see much change there, as the Ford government in Ontario, and Kenney in Alberta, have been pretty clear that they don’t think disabled people deserve much or deserve to live well. I would hope that we would see payments increase, but I don’t have a lot of confidence there.

Zosia: So what can governments do to better protect disabled lives during the COVID-19 crisis?

Darla: Aside from making a clear statement to the value of disabled lives, governments need to put more money into the welfare systems that support so many disabled people who are not able to work. There need to be more supports around shopping, such as stores having specific times for disabled and elderly people to shop.

There also needs to be an understanding and flexibility in disability policy because disability does not fit well into a single uniform box, people have different needs and so disability policy needs to be wide and flexible.

Zosia: How can listeners learn more about AAC?

Darla: I would recommend checking out groups like Communication Disabilities Access Canada, the International Society for AAC, and advocacy groups like Communication First, A4A Ontario, and the Autistic Self-Advocacy Network.

Zosia: And how can listeners support your work?

Darla: I don’t have any specific projects I am working on right now to promote. But I urge all listeners to remain indoors, only go out for necessities, and to maintain social distancing. Please, take precautions, wash your hands, keep your contact with other people limited.

This will last for a while, but then it will be over…but only if we work hard to flatten the curve and minimize the spread now. I know it is hard, but there are many people, many of my friends, whose lives depend on bringing this virus under control.

Zosia: It was really nice talking to you.

Darla: You too. Have a great night and stay safe.

Read/listen to Part 1: A4A co-founder Anne Borden King interviewed about plain language COVID resources and autistic access to health care in Canada.

Intellectually disabled Canadians are dying in residential institutions: What’s happening & what can be done

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Image Description: Red sign with white letters that say: “COVID-19 ALERT”


by Autistics for Autistics Ontario

This week Ontarians learned the shocking news that 37 out of 42 residents at Participation House, a residential institution for intellectually/developmentally disabled (IDD) Ontarians, have tested positive for COVID 19. At least 12 staff have also tested positive, and at least 80 staff stopped working. Participation House is now scrambling to find care workers, with the help of the Province.

One resident of Participation House, Patty Baird, who had Down Syndrome, became ill with COVID-19 last week. Her family had visited her on Monday and quickly saw how much Patty was suffering. “The agony — she was screaming in agony,” recalled Patty’s sister in law.  “She was in so much pain.” It was only after Patty’s family reported this to staff at Participation House that the residential institution had her transferred to hospital, according to Global News. Patty died on Wednesday, April 15th. She is the second Participation House resident to die from the virus, preceded by 58-year-old resident, Martin Frogley.

In Ontario, 114 long-term care facilities are now dealing with COVID-19 outbreaks, including at least 11 dedicated institutional housing for intellectually and developmentally disabled (IDD) individuals. Nationally, more than 600 residential institutions are having COVID outbreaks.

But this is not just a provincial problem, it is national in scope. And it is not merely lack of pandemic preparedness that has led to the outbreaks, it is the very nature of segregated, congregate housing itself, with its transient workforce, lack of oversight, and structural deficits that lead to mass-illness outbreaks and a host of other medical, social and emotional-health risks for residents. And now, more deaths.

It didn’t have to be this way.

Residential institutions “the norm” for IDD Ontarians

In Ontario 9,600 people are in residential institutions, including 2,900 developmentally disabled adults (and some youth) who are in long-term care homes (LTC).

Long-term care homes are intended to be only for the elderly since the province closed down residential institutions a decade ago, but a lack of political will to make the real changes essential to de-institutionalization means that IDD people continue to be placed in seniors’ homes, hospitals or in other large segregated facilities.

“People get forced into them because of a lack of resources, then the government says they ‘chose’ the facility,” says Patricia Spindel, an expert in Community Health and Developmental Services.

Carl, a man who works in this sector but did not want his name used says:  “Parents want independence for their children, a place to live after they [the parents] die. And institutional living is often presented to them as the only choice.”

In response to pressure in 2015, Ontario’s Minister of Health committed $810 million to relocate some people out of large institutions. However, it only moved them into what Carl calls “small i institutions,” group homes and other segregated residences. “It’s like the government doesn’t understand other options than group homes, which are really just a smaller-scale version of the institution,” he says. “[Residents] still room together and don’t choose their roommate. The fridges are locked. They can’t come and go. They can’t make any choices. They don’t have freedom.”

Research shows that integrated housing–where IDD people live in their own apartments in their community, instead of segregated institutions–leads to better quality of life and outcomes. Yet less than 20% of federal housing funds for IDD people is allocated to programs for integrated housing. In addition, the Government of Canada has not acknowledged that IDD people should have a say in their personal support workers, a right that is acknowledged for people with other disabilities.

“The disability rights movement has had successes, but in Canada very few of those successes have been for people with intellectual or developmental disabilities,” says Anne Borden King of A4A.

Institutions and group homes: Unregulated, uninspected

Right now, more than 600 LTC homes have reported COVID outbreaks–a number that is growing–and there is also an increase in smaller group home outbreaks. Factors cited include a lack of oversight and inspection of the facilities, and no uniform standards of care to adequately prevent the spread of illness.

A shocking report by the CBC found that last year, only 9 out of 626 homes in Ontario actually received resident quality inspections (RQIs), an essential safeguard in the form of unannounced inspections and follow up.

“The Ontario homes that have had multiple deaths from COVID-19 were not among the few that had resident quality inspections last year” reports the CBC.

There are no figures for smaller group homes, where there is no governmental database for collecting information about deaths, injury or even crime. Jennifer, who works in the independent living sector and spoke on the condition of anonymity says, “I think a big part of this story is that COVID is helping us understand that we don’t know much about these ‘mini institutions’ or who is in them or who runs them.”

When it comes to group homes “it’s a wild west,” says King. “When we drafted reports to the provincial and federal governments last year, we asked experts to show us the universal guidelines for vetting staff, for inspections… but there were no such guidelines. A  lot of these places are privately run, even as they use public funds. And there is no broad oversight.”

Because each home or provider has their own policy, there are also no uniform protocols for disease control during the COVID crisis. Some homes have ended visitation and canceled event or taken other action, but few have plans in place for preventing the spread of COVID or what to do when someone gets sick. This has led many to speculate that the unfolding disaster in LTCs could have been prevented with better preparedness.

Health and safety risks go beyond COVID as well. King cited A4A’s reports to the United Nations Health rapporteur and to the Province of Ontario which reported incidents in Ontario group homes where staff were not vetted, including one staffer who had been previously convicted of assault on a resident only to be rehired and commit another assault against a resident, for which he is serving jail time. In another institution, a staffer stalked and attempted to murder a resident in the woods on its grounds, for which he is now serving 20 years in prison. This institution, which is currently the subject of a class action lawsuit on human rights grounds, continues to house youth under the age of 18.

“We’re making a mistake if we think that bringing in more staff is going to stop the crisis with our institutions,” says King. “It’s like putting a Band-Aid on a gushing wound.”

“No priority for integrated housing”  

The shameful fact is, 10 years after most provinces and territories officially closed their large residential institutions for IDD people, Canada never really began the true transition for its IDD residents—from institutional living to integrated lives within the community.

In Canada today, more than 80% of federal housing dollars for housing for IDD Canadians still goes towards segregated housing units, including the building of new residential  institutions. Social workers often present segregated housing to people and their families as the “best” approach for the future. But in reality, it’s not the best opportunity—it is simply the only one.

Contrast this to the US, where from 1977 to 2010, the proportion of IDD Americans in large residential institutions fell from 35.8% to 4.2%. While the US has not had a perfect trajectory for this transition, Canada’s has been at nearly a standstill, with no known government commitment to it.

In the US, a federally-funded program entitled “Money Follows the Person” (which allows for money currently being paid to institutions to follow people into the community) has been funded through November 2020. So far it has helped 91,000 people move out of institutions and into their own homes. An additional 800,000+ Americans are now living in community settings with home- and community-based services and supports.

Money Follows the Person is also giving states another tool to move people with disabilities out of dangerous congregate settings during the COVID crisis.

Why hasn’t any of this happened here in Canada?

Evidence for integrated housing

Integrated housing for IDD people means that a person has their own home, such as cohabiting or living solo with supports in an apartment building that houses both non-disabled and disabled residents. Studies show this approach leads to better quality of life and life outcomes. With this model, people can choose their own roommates, pick their own personal support staff and make supported decisions about their daily life.

According to the Autistic Self-Advocacy Network, which studied both segregated (institution/group home) and integrated housing in the US: “Research shows that this trend has resulted in better life outcomes for people with disabilities. Compared with people who live in larger congregate settings or institutions, people with disabilities who live in small community settings have a higher overall quality of life, more friends, more opportunities to make choices about their lives, more opportunities to develop and maintain skills, and higher satisfaction with their living arrangements.”

So why hasn’t Canada begun to move away from segregated housing to the kind of integration that’s taken root outside of Canada? “I think the answer may be pretty simple,” says King. “It may be that they’re funding projects for segregated houses because that’s just the way they’ve always done things. And in some ways, confronting that dynamic is the biggest challenge of all.”

Looking ahead

As the week comes to an end, former Ontario MP Jane Philpott has issued an appeal for RNs and other health providers to step in to provide support at Participation House:

“We need great RNs, RPNs and PSWs immediately,” she tweeted. “In the last 4 days as I get to know the residents of Participation House they have captured my heart. We can’t let them down. They are beautiful people who need the very best of care at this challenging time.”

Participation House–and so many other institutions like it–are in a long-term crisis. It would be a mistake to think that once we bring more service workers in for now, we’ve solved the health and safety problem at residential institutions. The fact is, IDD Canadians should not be living in residential institutions and nursing homes at all. Canada needs to catch up with best practices and better ways. Integrated housing is possible and the Money Follows the Person model works.

Our government can’t just keep promising to “fix” residential institutions for IDD people: it needs to abolish them.

What should the federal government do?

The Government of Canada should commit to a total reform of its policy on housing for intellectually and developmentally disabled people.

This reform should be driven by experts in integrated housing, in partnership with self-advocacy organizations and based on the Money Follows the Person model.

This change can not be achieved if our government merely engages the same nonprofit entities it always does, those who profit from segregated housing. The Government of Canada needs to engage new ideas, new groups and new people to make these changes possible.

What can we all do now?

There are things that we can all do to help, right now.

  • Please contact your federal Member of Parliament by phone or mail. (Do not email: some MPs do not read constituent emails).
    • If you’re comfortable speaking on the phone, ask for a phone meeting with them or an aide.
    • Tell them that you are concerned about COVID and other diseases spreading in institutions and group homes for IDD people.
    • Ask why the government still spends 80% of its IDD housing funds on segregated housing for intellectually disabled people, instead of integrated housing (having one’s own home in the community near friends and family).
    • Tell them that studies show integrated housing works best for intellectually/developmentally disabled people. Explain that it is being done in the US and Europe.
    • Please share our contact information with them.
    • Please ask them to forward your concerns to the Ministry of Disability.


Info on how to find your MP

Contact Information for the Ministry of Disability (Hon. Carla Qualtrough) 

A4A’s Reports to the UN, Govt of Canada and Govt of Ontario