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 But the clearinghouse platform of the project, which is at least two decades out of date, is a staggeringly poor use of $10 million, as autistic people across Canada suffer from poverty, unemployment, segregation and access barriers—none of which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.
Funding – or hush money?
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.