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

covid alert pic
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.

Resources

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

CKUT Interview: COVID, Neurodiversity and Disability Access (1 of 2)

2 metres apartCKUT Radio (Montreal) interviewed A4A members for their show Off the Hour: Avalanche. We talked about COVID, neurodiversity, access to health care and more.

You can listen by pressing Play on the audio file below. Transcript below, too.

In part 1, A4A co-founder Anne Borden King talks about plain language COVID resources, the problem with Autism Speaks, AAC, health care access and meeting the challenges of sheltering in place.

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

Audio:

Transcript as a PDF: April_CKUT_Interview_Borden_Transcript

Transcript (below)

Zosia: Hi and welcome to the show. I’m here with Anne from Autistics for Autistics Ontario. Anne, would you be able to describe the history of your organization?

Anne: Yes, it’s great to be here too…thank you for inviting me. Our organization was founded in November 2017 and it was co-founded– I’m one of the co-founders—as a way for autistic people to be able to speak for ourselves, so it’s an autistic self-advocacy organization. We do work in community education, political advocacy and community support and community building.

Zosia: You recently wrote a plain language guide on COVID-19. Would you mind describing it?

Anne: Yeah, sure. We came up with this idea to get something out there about COVID-19 in plain language, meaning that people can understand it… it’s not full of a lot of technical jargon. And also specifically for autistic people, talking about some of the things that we would specifically be concerned about.

So the guide starts out with talking about what COVID-19 is, explains why we’re sheltering in place or staying at home (as we are here in Ontario) and then it gives some resources for people who use AAC, which [are] alternative communication devices, for people who are non-speaking. It gives some resources for non-speaking people for navigating the medical system and what’s going on, and for having access to communication. And then it talks a little bit about coping, how to connect with people, how to cope what’s going on… and some advice for caregivers. And then a brief discussion about what might happen next because that’s a big question that a lot of people have.

Zosia: Could you describe why plain language is necessary in communications for COVID 19?

Anne: It’s really, really important and we don’t see much of it. I’m actually really surprised with COVID how little communication is coming out of the medical field that could be understood by the average person. A lot of it is really technical and you start looking at all these big words and long paragraphs and it feels very overwhelming and it’s hard to understand. It’s really important in the case of something where it’s about health and safety, to make sure it’s in plain language.

The challenge with plain language is that sometimes plain language guides – if they’re not written by actually disabled people– they can come across as kind of patronizing, right? and talking down to the person. So …people who are autistic, have Downs Syndrome or a variety of intellectual disabilities, [should] really driving these projects, be writing these projects or at the very least at least very heavily consulting and involved with these guides so that they really speak to people in a way that is comfortable.

Zosia: Have there been any other plain language guides circulating? And how does yours differ from those?

Anne: Yeah, there are some good ones. I will say, Harvard (Medical School) did plain language but then they kind of messed it up because they had it like by age group, like “for 5-7 year olds”… like that doesn’t really work, you know, cognition doesn’t break down like grades in school. However, Brandeis [University] did a really nice one. And that could be read by people of any age.

Another great one was written by Green Mountain Self Advocates, and that was actually written by people who are disabled, have intellectual or developmental disabilities, so that was written in a really accessible way. And then there’s our guide. These are the major ones.

And then there are guides by AAC-makers… CoughDrop has a guide, Assistiveware has a lot of good guides and information for people who use AAC to communicate.

Zosia: Do you believe that they methods that the government has used thus far to communicate vital information regarding COVID-19 have been sufficient?

Anne: I think they could do a better job with plain language, especially by consulting with people who understand plain language and know how to write using plain language, and who benefit from plain language.

Zosia: So governmental briefings on Coronavirus have only recently begun using accessibility measures; for example, sign language, the week of March 16. Why do you think the implementation of methods like this were considered later as opposes to quote “traditional” communication?

Anne: I think it’s that way so much of the time that disabled people are an afterthought. I don’t know why especially federally since they made this big statement about how they’re going to start including disability in everything they do, right from the start, so I was surprised at how long it took them because I knew that they have this new commitment, but I haven’t seen a lot of legs to that commitment, and I think there still is more work to be done to reach various disabled communities in the way they communicate.

Zosia: The Accessible Communities Canada Act in its current status primarily refers to federal physical bodies, such as government buildings. Do you feel that language should have been included in the creation of this act?

Anne: It really, really should have. And like any disability accommodation, it would benefit everyone—not just disabled people–if they had included that. The legislation also really didn’t have anything for autistic people and there was no consultation done with autistic people for that legislation, so there are a number of things missing there.

Zosia: Are there methods of communication that the government hasn’t yet implemented that the government would be able to better assist disabled people?

Anne: I think so. They need to communication more directly with disability self-advocacy groups and disability self-advocates and ask what our different communities and individuals need and then respond to that need. I don’t think having a bunch of quote-unquote experts who are non-disabled trying to just do guesswork on the fly in the background as an afterthought is going to be a good way do it. We’d like to see the government reaching out directly to groups like ours and asking us what’s missing and what we need.

And we can provide it, it is very simple for us to do that rather than having them kind of doing guesswork.

Zosia: Do you feel that the accessibility measures regarding communication have been adequately communicated by caregivers to the populations that require them? For example in the blog post you mention there are sound boards specific to COVID 19. Is this a feature that’s widely known to caregivers as a resource?

Anne: I think the companies that make these boards are trying to get the information out there, but I don’t think it’s entirely successful. It all depends on the quality of who’s caring for the person and where the person lives. If they’re living in a residential program where the [carers] are really not making an effort to know what’s going on and what’s available and really querying these things, I don’t think they’re going to find them. This is all happening really ad hoc, by private groups, groups like ours, in the case of AAC it might be a company that makes AAC, but if you don’t use that brand you might never hear about it.

Ideally you would have kind of a Master Post, a master list, that the government had, of accessibility resources and then they would distribute these resources to all of the residential programs and all of the schools, in terms of how they’re doing education now, and they would have a way to get it to parents as well through various agencies, but that’s not happening.

Zosia: And why do you feel that’s not happening?

Anne: I don’t think they have had a plan… I don’t know, I’m just speculating at this point but it doesn’t look like they had thought about these moving pieces when they were getting ready for something like a  pandemic. So they need to reach out and ask people in the disability community…. And I mean really [actually] disabled people.

In the case of autism, there is really a whole bunch of non-autistic people who claim to speak for us, groups like CASDA and some of these other …like Autism Speaks. If the Government is going and asking them, they’re going to the wrong people. Those people are not disabled and they don’t know what it’s like to be autistic and they don’t know what autistic people need. [The Government needs] to reach out directly to self-advocates to understand what’s needed.

Zosia: How does the level of recommendations vary when provided by someone such as a representative from Autism Speaks, who doesn’t have autism versus directly from a person with autism?

Anne: Well, we’re asking everyone in the broader disability community not to partner with or work with organizations like Autism Speaks or CASDA because they are…first of all, in the case of Autism Speaks there is the broader issue of the genetic research and some of the eugenics that they support…

But aside from that, they also really follow what’s known as the medical model of disability, where the disabled person is the “problem” and you “fix the child to make them fit” in a world that isn’t built for them. The social model of disability tells us, why don’t we make some changes to the world around us, so that it can fit us? And it’s just the same for autism as it is any disability, right?

I think that these big groups that tend to speak as though we’re broken puzzle pieces that need to be fixed, and “what kind of therapies can we get so we’re not so ‘weird’?” and whatever like, is really damaging to autistic people in many, many ways.

And it doesn’t make for successful outcomes, either. If the Government and policymakers are looking for successful outcomes, the only way you’re going to have that is if we look at autism from the social model of disability and start making changes to the environment. And the only people that can communicate what changes are needed, whether it’s in schools, or healthcare or anywhere else…the only people who are really going to be able to articulate what’s needed are actually autistic people.

Like for example, our group, Autistics for Autistics, goes to the University of Toronto medical school a couple times a year and give a talk to [medical] students on “How can you make your practice accessible” for people who use AAC, for people with sensory issues, communication differences, all of the types of challenges that we have faced when we try to seek health care. We know what the barriers are and we know that there are some really simple solutions. And when we go speak to the med students about how they can make their practice more accessible, they’re very receptive, they’re very open.

It’s really a simple matter of teaching them some really simple accessibility measures that will have an impact on hundreds of people throughout their career. But we’re the only ones doing it… it’s the autistic people who are doing it.

When you have a big organization like Autism Speaks or someone coming in [to med schools], they’re much more likely to talk about “How To Identify Autism” or make us seem like we’re sort of like, a germ in a petri dish rather than “hey, we’re people and it would really help if you would learn about this, it would help if you allow your patients to email for people who are not able to use the phone, things like that. And that all comes from the grassroots, from the disability rights community, not from these big organizations who claim to speak for us.

Zosia: And have these organizations spoken for or released anything in regards to COVID-19 and what are your thoughts on those?

Anne: I’ve been looking and.. now I haven’t seen anything from Autism Speaks because I kinda don’t like looking at what they do, um… because of the eugenics, but I have seen some organizations that have put out guides. Generally, [these groups] are putting out like “A Guide for Caregivers” and then it will be like this massive long document about “How to Talk to Your Child About COVID” um, so, already they’ve taken the subjectivity away from the actually autistic person. They’re not addressing autistic people, they’re addressing their carers, and that’s just symbolic of how they tend to do things.

And I just saw one today, I couldn’t believe it…someone sent it to me, I can’t remember who put it out…it was a Canadian group from the West [edit: It was put out by a Federal Government initiative by the Pacific Family Autism Network, PFAN] and they did this whole big thing, this whole big website… they probably had grant money for it [edit: the PFAN was handed $10 million in federal funds for the website], and they never once mentioned non-speaking, non-verbal autistic people.

They had it all set up for autistic people who could speak, but we know that like 30% of autistic people are either nonspeaking or partially speaking. It’s quite incredible that a big agency like that would just render all those people invisible in their document.

Zosia: And how has the community in Ontario been impacted by the crisis?

Anne: I think it’s been impacted depending on where you live and who you are. So for some people who are living on their own or with roommates, out on their own, they are facing in many, many cases… because poverty is a big problem in our community, facing a lot of economic insecurity and  a lot of worry what might happen to their job, a lot of worry about what’s going to happen with Ontario Works, or ODSP [The Ontario Disability Support Program] or some of the other programs that people are receiving… so there is anxiety and uncertainty and fear around the economic part of it.

Then there’s the social isolation which everyone has to deal with but which feels a little bit different, maybe for an autistic person than it would for a neurotypical person. I don’t want to generalize to all autistic people… I think there are some stereotypes out there that we all just want to sit home and pet our cat and we don’t really care that we have to stay home and we’re all “introverts” and that’s not really true, a lot of autistic people are really extroverted and I think anyone, whether you’re autistic or not, is missing the community, missing the routine. But I think from a sensory perspective it can be more difficult being inside, than it might be for someone else.

It can be particularly difficult for people who are living in a group home setting or in a family setting where they’re not happy or not comfortable, or that’s not welcoming to them. I really, really worry about people in those kind of situations where there may have been an opportunity to get out for work or out for school and now they’re home. So there’s that as well.

And then there’s the sense of not knowing what’s coming. Which is something that impacts everyone, but it can be especially frustrating and can really start to lead you down a path of reading and learning and understanding and getting super-duper into understanding COVID to the point where it’s like, “OK, I’ve learned everything possible about COVID, now I need to find ways to decompress. I need to find ways to connect with other people.”

So I guess to summarize: there are economic concerns, there are stress concerns depending on people’s living situations, and then there are sensory and coping concerns that do look and feel different than they do for a lot of neurotypical people.

Zosia: And how is the Government of Ontario dealing with this crisis?

Anne: I’m just giving my opinion as an individual. I was watching a press conference with [Ontario Premier] Doug Ford today and he was kind of being baited by a right wing media [journalist] to make negative comments about [Canadian Prime Minister] Trudeau and he deflected it and he praised Trudeau. And I was really happy to see that like, it does seem like the Government is taking its direction from public health experts, whether they’re federal or provincial so that was really comforting for me.

The fallout when this is all over, I don’t know, economically and socially what kind of impact it’s going to have on our community because so many in our community are already living very low income and on ODSP. That conversation isn’t really happening right now so it is really hard to tell, because it is a Tory government, what the future is going to be like in terms of [supports].

Zosia: And what are your opinions on the fact that the majority of disability support plans across Canada are below the poverty line but with the Bill that’s been proposed, [non-disabled] individuals would be receiving almost twice as much, for example, as recipients of ODSP. How does that proposal impact the level that we’ve set… essentially putting disabled people in poverty for no reason.

Anne: Well, it certainly points out the way that the existing system isn’t fair, the way that people are constantly living on the poverty line and trying to work a little bit, get penalized for that, people who want to live with their partner, or get married obviously are penalized right now under that system? This, for us as activists, is an opportunity for us to raise awareness, to compare the aid that’s being provided by the government [to non-disabled people] to what [disabled people] are getting. It’s a good opportunity to make people aware of the discrepancies and the second-class citizenship that comes from those discrepancies.

Zosia: How can non-disabled people be allies to disabled people during this pandemic?

Anne: I think non-disabled people can be allies to disabled people by giving us a place at the podium. It’s really really important in any kind of project that has to do with COVID at all that disabled people are right there, front and centre. Because we’re in a place right now in Ontario where we have a place for everyone at the hospital, but as we know down in the US they’re rationing care and as we know, sometimes the rationing programs exclude people that are disabled, and are discriminatory.

There’s a lot of worry and concern in Canada that that could happen here depending on the direction that things go with health care and this virus. So, some guarantees and some real commitment that disabled people are not left out in those kind of scenarios and that affirmation that our lives have value is really important. And visibility for autistic people and all disabled people –as much visibility as possible is really important right now. My concern is that disabled people will not be given life-saving medical care in the event that there is rationing and that it will be built into the triage policies at hospitals.

I think what everyone would like to see is an ironclad guarantee in general a positivity about disabled people coming from our government as a way to reassure people that it’s not going to happen here in the way that it has been happening in the US.

Zosia: If listeners wanted more information about your organization, what should they do?

Anne: We’re on Twitter @a4aontario and we’re also on Facebook at A4A: Public Page. Our website is a4aontario.com. That’s where you can find the Plain Language Guide to COVID with pictures, and we’re also going to make more plain language COVID guides as well as resources for sheltering in place and a master list of AAC resources.

Zosia: Ok, thank you Anne.

Anne: Great it was great talking to you!

Listen or read the transcript for Part 2 of the series. Zosia speaks with A4A executive committee member Darla and AAC, health access and more.

 

COVID-19 Resources for Autistic People

Autistics for Autistics Ontario and Autistics United Canada, both autistic-led advocacy groups, have put together a list of COVID-19 resources for autistic people, which we will continue to update!

Part 1 is resources specifically for autistic people, including AAC resources, coping guides & online hangouts!

Part 2 is general resources about COVID-19, including health care info in plain language & in multiple languages and financial aid info (Canada).

Part 1: Resources for Autistics

AAC Resources

Coping with the Changes – Guides

Coping with the Changes – Articles

Online Hangouts for Neurodivergent People!

  • Autistics United Canada is hosting online hangouts on Tuesdays and Saturdays, via computer web browser, phone app, or phone call.

Other online Meetups!

Other Things to Do When Staying Home / Sheltering in Place

For Parents & Caregivers

Financial Aid

PART 2: General COVID-19 Information

Part 2 is a PDF. Please link here: Covid info_resource list_plain language-multilingual (Canada)

 

Letter to Canada’s Auditor General about autism funding in Canada

Dear members and supporters:   We have written to Canada’s Auditor General asking for answers to some questions about how autism funding decisions are being made by Canadian governmental ministries and agencies.

We are asking the Auditor General directly because after 6 months of outstanding inquiries to the agency and ministry involved, those offices have not given us answers.

As well, the usual databases that list federal contracts and RFPs do not list most of these contracts or indicate whether any bidding processes or research was involved in the decision to choose the specific providers and programs.

Who is the Auditor General?
The Office of the Auditor General of Canada (OAG) “serves Parliament by providing it with information and expert advice on government programs and activities, gathered through audits” of financial activity by government agencies to make sure that things are being done fairly and openly.

Full letter: Our full letter to the OAG [names redacted] is here: Letter to the Auditor General, February 2020

Our questions: Below are the questions we submitted to the Auditor General of Canada.

AIDE Network
In October 2018, more than $10 million was announced for the Pacific Autism Family Network and the Miriam Foundation to develop the Autism-Intellectual-Developmental Disabilities National Resource and Exchange (AIDE) Network, a website that advertises the services of Canadian autism service providers.

  • How was the AIDE project tendered?
  • Where is the contract—why is it not online like other disability-related contracts?
  • How was any need for this project determined?
  • What demographic and best-practices research was this expenditure based upon, if any?
  • Since the primary beneficiaries of this program are the PAFN and related service agencies themselves, what data was collected or audits done (if any) to determine whether there could be secondary stakeholders/beneficiaries?
  • Was there research into the issue of redundancy (considering that similar databases exist); whether the similar existing databases were effective (how much and why or why not); and whether Canadians will access the AIDE database to find local services instead of using Google as they do now?

Other projects
The projects listed next were also funded with no apparent public record of RFPs or  tendering process, nor any record of research into their feasibility, reasonableness or sustainability.

Autism Nova Scotia’s Health Sexuality Research Program, $800,000; Autism Ontario’s Mental Health Matters Project, $524,431; Autism Resource Centre’s Building Block Program, $518,964; Jake’s House for Autistic “Children for The Legends Mentoring Program [sic]”, $600,000 (does not fund autistic mentoring); York University for The Autism Mental Health Promotion Project, $599,300 and; McGill University (Royal Institute for the Advancement of Learning) Caregiver Skills Training Program, $600,000.

  • Why were these projects funded without meaningful data about need or research into ROIs in other jurisdictions?
  • How does the level of due diligence for autism-related projects compare to that of other government funded disability-related expenditures?
  • If there are two sets of standards for due diligence, why is that?
  • What is the RFP and bidding process for these projects?
  • Why aren’t the bidding process, contracts and standards of measurement transparent for autism funding, as they are for other expenditures?

We hope to hear back from the Auditor General soon. We will update this post and our social media when we do.

Autistic Activists in Canada Take Action Against Anti-Vax Propaganda

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We are very proud of all the autistic activists in Canada who have taken action against the screenings of the film VAXXED 2!!

VAXXED 2 is a propaganda film that is earning millions for the antivax industry at the expense of autistic people. The film falsely links vaccines and autism and portrays autistic people as an epidemic and a burden.

Autistic advocates were the leaders of these pro-science actions. In some cases, advocates were able to get screenings stopped before the film showed; in others, we took to the streets to educate.

Actions

North Bay, ON: An A4A member in North Bay had the idea of calling the local Health Ministry office (MOH) to inform them of 3 screenings scheduled in the area. The MOH contacted the venues to inform them that due to the public health risks of the screening, the venues needed to cancel the screenings. All 3 screenings were canceled!!!

Toronto, ON: A direct action picket line was organized by some brave autistic activists in Toronto, when the film screened for two nights at a local theatre. Activists held signs with slogans such as “Vaccines Cause Adults” and “Autistic and Proud”. They handed out educational flyers to passers-by and had engaging conversations about public health and also about neurodiversity — all while trying to avoid the angry shouts of the attendees in line… and the pouring rain both nights. A true endurance test!

Halifax, NS: In Nova Scotia, Autistics United Chapter Leader Alex Kronstein spoke with media about the dangers of antivax rhetoric and its impact on autistic people. Advocates held a spirited protest at the screening of VAXXED 2, which took place at a local city-owned recreation centre that rented the space to VAXXED 2 for $345. One ally held a sign that read: “Halifax Rec: For $345 you lost my $516 gym membership. Get lost, anti-vaxxers. My best friend has autism and is perfect.” Thank you.

Moncton, NB: New Brunswick advocates contacted the New Brunswick Medical Society and the Mayor of Moncton, but neither office showed interest in the public health risks of screening antivax propaganda films during a resurgence of measles, mumps and rubella that is being caused by antivax propaganda, so the screenings went forward. Advocates showed up at the screenings and handed out educational flyers, holding signs, and talking with passers-by about the issues, receiving supportive high fives, honks and people shouting “Yes! We vaccinate!”

Victoria, BC: Advocates were able to get two scheduled screenings shut down after the venues were made aware that the so-called “education group” scheduled at their spaces was actually a screening of VAXXED 2.  At the two remaining venues, a group of protesters–plus a very sweet service dog–stood outside with their signs. One protester, whose parents did not vaccinate them as a child, held the sign: “Not vaccinated and still autistic.” The group received support from people throughout the neighbourhood.

“My Existence is Resistance”
Autistic activist Alex Kronstein of Nova Scotia, who held a sign that read “My Existence is Resistance” spoke to Global Media about the protests, summing up the reason why autistic people are at the forefront of protesting this film: “The whole idea that vaccines cause autism, it promotes a lot of stigma and hatred towards autistic people….If a publicly-owned rec facility is hosting a screening of this film, it’s harming public health and contributing to the stigma of autistic people.”

The vaccine that antivaxxers has been most focused on is the Measles Mumps Rubella vaccine (MMR), profiting from a baseless myth that the MMR vaccine causes autism. Experts estimate a sixfold increase in mumps diagnoses, with rising numbers of measles cases each day, including major outbreaks, and new cases of rubella now being reported.

The vaccine-autism myth was made stronger for more than a decade by the group Autism Speaks, which perpetuated the antivax myth through its literature and even its research projects until just 3 years ago when its messaging abruptly shifted. Autistic advocates have been at the forefront of resistance against antivax and public education about the importance of childhood vaccines.

Thank you
We are grateful to all the amazing autistic advocates across Canada who worked so hard on this. We did not allow the antivax industry to present their hate without being there to share the facts and say “No.” We were there to bear witness to the importance of vaccines, and to our own humanity.

Thanks also to our siblings in the UK at Autistic Inclusive Meets, who were the first to organize against VAXXED 2 screenings and inspired us in our own actions.

We will continue to update our social media about upcoming protests worldwide.

Read our fact sheet about VAXXED2 and antivax claims: VAXXED2 Fact Sheet

Donate to our Action Fund

Vancouver Protest on Feb 21st! Event Info