Earlier this month, we received a letter from a PR firm (Manifest Communications) on behalf of the Canadian Autism Spectrum Disorder Association (CASDA), asking us to contact them for a PR exercise that CASDA is doing.
It read: “CASDA has engaged Manifest Communications to advise on a plan to align the community with the development process of a National Autism Strategy in the most efficient and effective way possible. We invite you to take part in consultations with Manifest.”
As an autistic-led disability advocacy organization, we understand clearly that a “communication exercise” with a PR firm is not legitimate consultation–and we are saying no to it.
Background. For several years, CASDA has been lobbying for a proposed “National Autism Strategy,” which is supported by Autism Speaks and several other non-profits and charities.
It appears those groups would like to take the lead nationally and get funding for directing autism services under a model that is based on no-bid, sole-source contracts with no meaningful accountability for evaluation of need or services rendered. To many autistic people in Canada, CASDA’s consortium groups are large and ineffective, focused on a “charity” style that objectifies autistic children, while offering no new approaches to disability.
CASDA and its consortium partners also show a clear resistance to competitive funding models that encourage innovation.
Taking Action Against Sole-source Autism Funding. The proposed National Autism Strategy would make it easier for no-bid contracting without audits or outside data and evaluations. As many of us know, this failed approach to policy is what landed the federal Liberal party in a scandal when they planned to appropriate millions to the WE charity to run a flawed student-internship program, which was then canceled when whistleblowers alerted MPs and the media.
We contacted MPs to discuss these projects and our concerns that the National Autism Strategy would further empower the government to allocate funding to autism non-profits with previously problematic sole-source projects. In addition to questions about contract ethics, CASDA’s consortium organizations do not appear to represent the needs and ideas of the broader autistic community. (See our Report, The $10 Million Website: How Canada’s Sole-source Contracting Betrays Autistic Canadians).
Serving notice. This letter will serve as our notice to the public as well as to Manifest Communications and its client, CASDA that our membership–which comprises thousands of autistic Canadians; parents of autistic children across the country; service providers; and supporters throughout the disability-rights community–firmly reject the proposed National Autism Strategy on 3 main grounds.
Funding Ethics Issues. The proposed National Autism Strategy is based on a system that we believe violates ethical standards for government contracts. That cannot be tweaked or fixed, but must simply be stopped before it goes any further. In our view, the NAS is based on undemocratic principles, in that the Liberal majority decided privately to “approve” the project without ever bringing it up for Parliamentary debate/vote.
Flaws in Service Delivery. The proposed NAS is based on the idea that autistic Canadians need a special “strategy” as though autistic people are akin to climate change or a ParticipACTION initiative. That approach cannot be remediated and should be replaced with robust policy that integrates autistic people into existing disability policy, where autistic people deserve to be included as part of Canada’s disabled community!
Segregation instead of Inclusion. While much of the rest of the world has begun to de-centre older, segregationist “charity” models of autism services, the National Autism Strategy simply perpetuates them. Canada needs to catch up with the Disability Rights movement and make a paradigm shift, built on studying best practices for data collection, need assessment, inclusive services and centering disabled people (rather than non-profit executives) in the development of policy.
Conclusion. In our view, the CASDA lobby has for many years operated on the segregation model of disability funding and services. For this and other reasons, CASDA cannot be the party to broker or “reform” the National Autism Strategy. The National Autism Strategy simply needs to be scrapped, immediately, as a bad idea past its time. Canadian policymakers also need a clear reckoning about how the NAS ever got so far and how the federal government can reform policy to prevent another such near-disaster.
Autistic-led groups in Canada want to be actively involved in consulting, not just present as tokens, to make sure that federal policies reflect our community needs. We ask that the federal government, without brokering by CASDA, reach out to our organization (as well as Autistics United Canada and other autistic self-advocacy groups) to find a better way forward for the inclusion and access rights of autistic/disabled people.
If you were shocked by the WE scandal, wait until you learn how Canada has been making its autism funding decisions. Millions of dollars have been allocated for “autism” programs without any competitive bidding process, nor any study to determine whether the service is needed, nor any independent standards and practices to measure efficacy or outcomes.
When autistic people—the population the government is claiming to serve—raised concerns about this, the government cut all autistic self-advocacy groups out completely from the policy discussion and refused to respond to our messages.
Large, sole-source contracts are the norm
Very large, sole-source contracts are the norm for the government’s “autism” projects under the auspices of the Public Health Agency of Canada.
A sole-source contract is when the government allocates funding directly to a specific supplier, without inviting/allowing other organizations to provide competing bids.
A search of all publicly-available databases of government contracts shows that the majority of federal autism-related projects have not been put to tender in years, and the largest projects of all did not even have RFPs or any record of tender, bidding or assessments. Most sole-source contracts do not even appear on the government’s funding transparency public databases.
Autism charities know this; they court the PHAC, as well as individual MPs and the Health Ministry with projects. Many have little to no evidence of need or benefit for autistic people. To add insult to injury, these projects earn them praise and renewals even though the programs are never assessed for efficacy.
The $10 million website
An example of this problem is the AIDE project, a sole-source contract for $10 million that the government granted to Pacific Autism Family Network and the Miriam Foundation in 2019 to make a website that is nothing more than a bit of general content, a provider list and links to online articles on autism that the government imagines Canadians are going to access instead of Googling for the info they need using keywords.
Recipients claim the project is worth its $10 million pricetag because Canadians will turn to the AIDE clearinghouse for “evidence-based” autism information instead of Googling. But the clearinghouse platform of the project, which is at least two decades out of date, is a staggeringly poor use of $10 million, as autistic people across Canada suffer from poverty, unemployment, segregation and access barriers—none of which are addressed by the project in any way.
The $10 million “Hub”
In that same package, another $10 million was given to the PAFN to use for mini-grants to itself, to the Miriam Foundation and 4 other non-profits that run and promote segregated ABA centres for children and segregated residential institutions for adults. This $10 million was to set up “information hubs” in existing autism service centres–and no other information about what the $10 million hubs are has been made available to the public.
We at A4A don’t know what the “Hubs” are either (a new configuration of the chairs? a more prominent pile of brochures?), but we can say with confidence that $10 million is an astronomical expenditure for this abstract concept…especially when our people are underhoused, unemployed, visiting food banks, abused in schools and experiencing oppression in sheltered workshops and in segregated, unregulated group homes and congregate long-term care.
A road paved with good intentions
Perhaps some people in these projects have good intentions, but good intentions do not make a needless project useful. The bitter truth is: autistic Canadians desperately needed $20 million and these agencies squandered it.
Our human rights are on the line—we suffer abuse, unemployment, stigma, underhousing, food insecurity, safety issues in group homes, access barriers and segregation, but instead of doing ANY needs assessments or data collection that could inform good policy, the government continues to outsource autism policy to outmoded non-profits that are not building solutions to any of these problems.
Perhaps the government thinks that offloading their job onto charities is a good idea because they think charities “know more” about a subject than they do. But they are vastly overestimating the organizations they have tapped for sole-source autism funding.
The truth is our government has the responsibility to research and manage programs, because our government has the infrastructure—whether it’s the census for data collection or regulators for oversight.
Autism charities have not done even the most basic research and data collection into needs assessment; they lack basic competency in this regard. Nor can a charity provide its own oversight into projects that benefit the charity; it is ludicrous for our government to assume they will.
We don’t want funding: we want answers
Under Canadian federal regulations, government programs related to disability are required to consult with the disabled group they serve. This is why the Ministry of Health and Public Health Agency of Canada told us that we could “get funding” for our projects when we first reached out and spoke to them in summer 2019. The hitch? Well, it felt to us that we would have to go along with the status quo and turn the other way when we saw what appeared to be ethical lapses in other autism appropriations.
When members of Autistics United Canada and A4A began to ask questions about sole-source contracts in a series of emails and phone calls, the PHAC stopped returning our emails and our calls. Completely. Now both of Canada’s national autistic self-advocacy groups are cut out of policy discussions–and any conversation.
We made it clear we do not want any money from the PHAC if we are being asked to be silent/dishonest about what appear to us to be unethical approaches to sole-source contracts. Fairness and democracy matter and it is time the government began to honour that in its awarding of contracts.
The proposed National Autism Strategy: Replicating a broken system
Autistic advocacy groups have been invited to participate in “dialogue” with the CASDA lobbying group about the Government of Canada’s proposed National Autism Strategy (NAS). We have said no—and in fact, all chapters of every autistic self-advocacy group in Canada oppose the NAS.
Why do all of Canada’s autistic-led advocacy groups reject the proposed National Autism Strategy ? Because the NAS is nothing new: it is more of the same failed policy under a new name. Through the proposed National Autism Strategy, the Government of Canada would hand off billions in “autism funding” to charities and non-profits through sole-source contracts, without vetting or meaningful oversight.
CASDA, a partner of the charity Autism Speaks, is the lead lobbyist for this proposal–and the parties involved in organizing the NAS are closely linked. For example, the Vice Chair of the Executive Board for CASDA is also the President of Autism Speaks Canada. Autism Speaks is a Capital Lead Partner at PAFN and a Collaborator of CASDA. The main MP promoting the NAS (Mike Lake) also works closely with Autism Speaks. The 3 groups are working with a handful of MPs and if the NAS passes, these organizations will establish dominance in autism funding decision-making.
The only strategy involved seems to be a strategy to further entrench specific charities and non-profits into the federal funding mandates.
Only 2.4% of respondents in “autism needs study” were autistic
CASDA’s national “needs study” was very small and only 2.4% of the participants in the survey were even autistic! The rest were mainly service providers, who very likely have an agenda about which “needs” they will choose to identify, namely, the need for more revenues to their own agencies.
Based on this so-called study, CASDA crafted a “Pillars” document with many graphics but seemingly no new ideas. For example, anyone with basic knowledge of the housing sector would know about the issues in congregate care and best practices in independent supported living and the “money follows the person” model. But there is not a glimmer of knowledge about any of this in the CASDA document.
This is especially disturbing considering that 80% of federal dollars in this sector (housing for I/DD and autistic people) is earmarked for SEGREGATED housing, not community living, despite robust evidence that community living benefits everyone more than segregation.
Are pork-barrel politic possibly involved? We do wonder, because the long-term care homes, residential institutions and group homes “bring jobs” to districts and benefit organizations that have relationships with MPPs and MPs who direct the policy.
Policy by charity gala?
When representatives of A4A met with a representative of the Health Ministry in spring of 2019, we gave her a copy of our own policy paper.
For the paper, we’d consulted with experts in the US and Canada about new approaches to education, employment and housing. We had all worked hard on that paper and our team included seasoned policy writers.
The Ministry representative set our paper to the side and told us we should contact CASDA because their Pillars document was “excellent” and then told us about a “wonderful” new home for “men living with autism” that was being built on the edge of her city.
This put us in the awkward position of choosing between thanking someone for segregation or being honest. In the end, we chose stunned silence. Or perhaps it chose us.
The Health Ministry never read our policy paper or responded. Neither did the office of the Disability Ministry when we also sent them our policy paper. We had actually felt some confidence in Qualtrough’s office because initially it did not support a National Autism Strategy and preferred integrating autism into existing disability policy (which is our position).
Then there was that disappointing day where we saw the social media photos of Minister Qualtrough at a benefit for the Pacific Family Autism Network. Days later, the other shoe dropped: she threw her support behind the National Autism Strategy. It seemed then to us that much of Canada’s autism policy may be being decided at charity galas, over golf games and at quick-and-quiet meetings where tens of millions in “services” are approved.
The government benefits from these sole-source contracts because it is handing off its own job to charities, as we saw with the failed WE contract. As with the (now-canceled) WE contract, hundreds of millions would be spent, managed by the beneficiary charities with no meaningful oversight into outcomes and not informed by best practices.
Extreme outsourcing—Canadians pay the price
We stand with LAST, Autistics United Canada and its 4 chapters nationally to say that we do not accept the legitimacy of the National Autism Strategy, nor the CASDA lobby. To us, the CASDA proposal represents “business as usual” in Canadian autism funding—and business as usual is a fundamentally undemocratic approach to policymaking, where massive funds are handed out to charities with no RFPs …following chit chat over ice wine at galas. The old boys’ club of autism funding doesn’t follow the Government’s own guidelines for transparency.
It has now been a year since we first emailed the government to ask: “How are you awarding autism contracts? Can we see the RFPs, since there are none on the government databases?” We are now awaiting results from our Access to Information requests from 5 months ago.
We have no doubt that CASDA will promise crumbs of funding to any individual autistic people who will play the role of yes-man for its initiative. But this does not encompass our self-advocacy community. A4A and Autistics United Canada both have thousands of active members and we work hard to represent the diversity of our community. We are organized advocacy groups doing education, policy work and advocacy throughout our communities.
The government should be directly engaging with our groups as it makes policy decisions.
It is heartbreaking for us, as disabled people, to see these problems in the federal government’s autism funding system. We know that there is so much that could be done to roll out programs that work, yet billions of tax dollars are squandered on outmoded “behaviourist” centres that segregate children, institutional housing that segregates adults and make-work projects that don’t benefit our families and communities.
As to the lobby group CASDA, we have concluded that their main goal is to secure funding for its partner groups such as Autism Speaks. It appears that NAS funding will be directed and distributed through Autism Speaks, a charity that has one of the lowest rankings among autistic people in the world due to its support of eugenics and its problematic use of donations, which mostly go towards eugenics and other “research” rather than supporting autistic people. In the words of tens of thousands of autistic advocates: “Autism Speaks is a hate group.” (Learn More Here.)
Conclusion: What you can do
The proposed National Autism Strategy is based on a funding model that contradicts the basic human rights of autistic Canadians. Its expenditures are awarded by sole contract, unbid processes, to the same tired assortment of players, with no accountability as to program success, let alone initial measures of need. It won’t be funding programs that help us; in fact, it will fund programs that actively harm us.
If you are involved with CASDA’s plan, please quit–and get involved in disability rights instead. You may feel like you have to work with CASDA or Autism Speaks because they’re the dominant players, but they won’t be for much longer. When the National Autism Strategy fails, its legacy will be of government ineptitude and undemocratic funding practices. It will be remembered as a policy that was directly opposed by every organization representing the group it claimed to serve.
If you want to help stop the NAS, please see our Action Kit to find out what you can do. Contact A4A or Autistics United Canada to learn how you can be involved in our community education and advocacy projects. Our groups do incredible outreach work across sectors…and none of it costs $10 million.
A true paradigm shift is needed in autism funding. Neither the NAS, nor CASDA or its directing agencies can deliver that. But disability rights groups are ready to provide guidance when the government is ready to reform that system and contact us. Nothing about us, without us.
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.
The 3 groups are working with a handful of MPs to establish dominance in autism funding decision-making.
They are deciding the future of autistic Canadians while excluding our national advocacy groups from the discussion.
Decisions are being made with little to no study of best practices elsewhere or meaningful consultation.
There is no oversight for effectiveness of money spent on of existing plans, despite hundreds of millions being spent.
80% of federal housing dollars in the autistic & I/DD sector go towards segregated housing.
In some provinces, 90% of all “autism funding” goes to ABA.
There are no meaningful federal jobs programs or workplace accessibility measures for autistic Canadians.
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 Foundationto 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.
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.
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.
About this Guide
This guide is about Covid-19 and some of the changes to our lives in Ontario. It also has AAC resources and other info.
Below is the text version. The version with pictures is at the “Full Guide” link, above.
This guide was created by autistic people, in Toronto.
Introduction A lot of things have changed in the past couple weeks.
There are a lot of new announcements.
Many places are closed.
People are staying home.
Everyone is washing their hands a LOT more.
Why are these things happening? Why are we making all these changes?
Because we are being heroes. We are all saving people’s lives, by protecting each other from the coronavirus, Covid-19.
These changes are not forever. It is just for now. Things will get back to normal again.
What is Covid-19? You probably heard about the new coronavirus, or Covid-19. It is a germ that makes some people very sick.
Covid-19 goes into people in different ways—for example if someone coughs near them, or if they touch something that had the virus on it, then touch their eyes or mouth.
Covid-19 is spreading around the world right now. It is in Canada now.
The reason things are closing, and people are staying home, is because of Covid-19. People don’t want to get sick or get other people sick.
We won’t be staying home forever. It is just for now. The scientists can’t say how long it will be yet. They want to find out too –and they will tell us as soon as they know.
Why are we staying home? When we stay home, we stop Covid-19 from spreading.
Scientists know how to stop Covid-19 from spreading. One way is by washing hands. Another way is by not shaking hands or high fiving. Another way is called “social distancing”.
There are different kinds of social distancing:
Sometimes it means not having big events, like hockey games and parades.
Sometimes it means not having other things, like school or work.
Sometimes it means staying home, away from people who are not your family (“sheltering in place”).
With social distancing, less people will get sick–and the doctors will be able to help everyone who has to go to the hospital.
When you do social distancing, you are helping doctors, hospitals and all people who are in the hospital. You are helping our whole city to be healthier and safer.
Up and down feelings about staying home Staying home can be really hard, especially at the beginning, because it feels like nothing is the same.
It is normal to feel upset and confused. As days go by, we usually get more used to things being different.
Sometimes it’s fun to be at home! What are some of the things you like to do when you’re at home? Make a list of things you’d like to do while at home.
Sometimes there are bad mornings, or bad days. People will say confusing things about Covid-19. Sometimes they will talk calmly about it, and other times they will sound upset and angry.
What do you do when you get upset, to calm down? Make a list of what you like when you’re upset, and a list of relaxing things you like to do to calm down. Have your parent or carer make the same list, for themselves.
AAC resources There is a new speech board with words, ideas, images & videos about Covid-19. It works for people that use the CoughDrop platform. You can get it online at coughdrop.com.
Other apps, like Proloquo2Go, may have their own symbols. Another place to get information is assistiveware.com. More AAC resources are being created and we will update soon with more information as new AAC resources come out!
Keeping connected Just because we need to do social distancing doesn’t mean we can’t connect with our friends and other people we are close to.
We can use texting, FaceTime, Skype, phone and more. There are lots of fun things to do like draw pictures together and guess what they are, play games or give each other tours of our houses! It can also be fun to make plans with your friend about what you will do when you see each other again.
Set a regular time each week or day to meet. This way, they will be there and can answer back when you have a text or phone call. Make a plan just like you do when you’re meeting up in person.
Taking a break from Covid talk People are talking about Covid-19 A LOT. Sometimes, it can feel like too much.
If someone is talking about Covid-19 and you need a break from that, you can tell them:
“I need a break from talking about this”
“No Covid right now”
“I need a break to relax”
Your parent or carer can also agree to a special time of day where they talk or watch news about Covid-19, and get a plan for you to do something different then. You can make that plan together.
What’s next? The doctors and scientists will tell us when it is safe to start opening up schools, restaurants and other places. They don’t know yet, but they will be keeping us updated.
When it is safe, we will all slowly go back to doing our favourite things that are not at home. Then we will look back on this and remember it, as something from the past.
We are in this together
We are all working together, being heroes together. We are protecting ourselves and the people we love–and people all across Ontario. Thank you for being a hero.
This Guide was written 100% by autistic people, who work at an organization where autistic people are in charge. Our group is called Autistics for Autistics Ontario (a4aontario.com. We hope you found our booklet helpful!
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 protocolin 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 offpatient 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.