Our Report to the Government of Canada: Part 1, Outlining the Problems in Current Policy

We are blogging our report and recommendations to the Government of Canada, by section. Below is our outline of the need for reform in federal autism policy.

Full report: A4A National Policy Report & Recommendations, 2019

Background: A pattern of segregation, perpetuated in policy
By and large, autistic/ IDD Canadians live segregated from the rest of society, as A4A outlined in its detailed Human Rights Report to the United Nations (2018).

We are first taken away from our families and peers when we are placed into full-time, segregated IBI (Intensive Behavioural Intervention) “therapies” as preschoolers. Then, because we don’t get to know our peers and they don’t get to know us, when we reach school age we are tracked into segregated classrooms. We eventually graduate from segregated education into segregated lives, in segregated housing and segregated “work” in sheltered workshops—or isolated alone, wanting to work but facing access barriers to employment.

In some ways, although Canada has “de-institutionalized” from the horrific world of 20th century residential care, autism service providers and policymakers still hold onto the stigmatising ideologies that keep us separate–and policymakers have not made the attitude shift that would embolden policy to ensure that we are truly integrated. These old ideologies include the belief that autistic people are a broken version of “normal” in need of conversion therapy which claims it can teach us to pretend to be non-autistic. In fact, the person who invented ABA, the primary therapy funded by most provincial/territorial governments in Canada, is the same man who invented a popular form of gay conversion therapy.

The Government of Canada and the provincial/territorial governments endorse and fund many of the segregationist policies we have referenced, such as early childhood IBI centres that segregate autistic children from peers; normalized “special” education in public schools; segregated housing; and isolating day programs. Most of our provincial/territorial governments also endorse sub-minimum wage labour of IDD individuals in sheltered workshops.

A few examples:

The Government of Canada Funds Segregated Housing. The Government of Canada and provincial/territorial governments continues to allocate the majority of IDD housing budget towards segregated facilities. In 2013/14, more than 90 percent of federal funding in this sector went for segregated housing and just 9 percent for independent supported living. Provincially, the numbers are similar; for example, in Ontario, 80 per cent of housing funds for autistic/IDD individuals is still allocated to segregated group homes.

These investments ignore evidence that autistic/Intellectually Disabled (IDD) people fare better with independent supported living (ISL) in the community, not segregated housing. This is because with ISL, the person has their own housing and supports they control to live in the community, as an integrated member of the broader society.

When we met with government reps last spring, they were excited to share with us the news of a new segregated housing project being built “for men living with autism.” It did not appear that independent supported living was even on their radar. The cultural disconnect is clear in the very language the government still uses, officially describing us as “people living with autism,” as though autism were a dachshund or a ferret. Many of us would like to live with a roommate of our choosing or alone; however the current system sets IDD folks up in group homes that are neither safe nor accessible from a communication and sensory perspective (see our Housing section).

The Government of Canada Advertises Segregationist Providers. The federal government also recently allocated more than $10 million to build a website that will list autism service providers and provide resources and rent subsidies for select autism “service” providers. The providers listed are mostly ABA providers or non-profit service agencies that operate with the segregation model. The project’s lead agencies did NO meaningful consultation with autistic people, nor did they reach out to any of Canada’s autistic self-advocacy groups nationally or locally. This “information superhighway” boondoggle is going nowhere fast–and $10 million could go a long way towards anti-poverty and education initiatives that truly assist us.

The Government of Canada Gives Contracts Multi-billion dollar Contracts without any Sign of a Tendering Process. The Government of Canada seems to have given the management of the above project to 2 autism charities (PAFN and The Miriam Foundation), without a tendering/bidding process or even an apparent RFP. We have asked and asked and asked the government to explain how these providers were chosen, to the point of sending them Yes or NO forms, and they refuse to answer. We can only conclude that this complete lack of transparency is de rigueur for  maintaining a dysfunctional and unfair approach to awarding contracts.

The Government of Canada has Made No Commitment to Inclusive Education for Disabled Children. Canada is behind many other nations on school inclusion of disabled students. In fact, according to the Ontario Human Rights Commission, the special education system here hasn’t changed meaningfully in more than 40 years. School exclusions and special ed referrals are commonplace, there is no accessible (universal) design in Canadian classrooms–not even a pilot program–and many families end up homeschooling just to give their autistic children an accessible education. When we have approached people in federal government, they claim these human rights issues are not the Government’s mandate because the “Autism file” is silo’d in the Public Health Agency of Canada… and claim that the silo-ing can’t be changed.

The Government of Canada is not Addressing the Problem of Abuse in Canadian Schools. While in other jurisdictions, restraint and seclusion are either banned or tracked for accountability, most school districts in Canada do not have universal measures for tracking the use of seclusion and restraint, which are endemic to the special education system (Please read our Human Rights Report for more information). There is also a clear lack of transparency within the special education classroom, which do not have cameras in classrooms and many of which do not even allow parents to enter the classroom space during the school day!  Without transparency, and with an approach that systematically excludes autistic students, Canadian public schools are set up for failing all students, with devastating impact on autistic students’ lives.

The Government of Canada is Supporting Agencies that Promote Unscientific Approaches. The only “solution” that funded autism agencies seem to propose for schools is to put more dollars into an unscientific behaviour therapy system that leads to negative long-term outcomes (see the sources cites here). While a few districts in Canada have piloted positive inclusion based programs such as SCERTS, most districts continue to argue that piling more Education Assistants into the classroom is the singular answer, because policymakers haven’t implemented even the most rudimentary inclusion plans to make classrooms accessible to neurodiverse students.

The Government of Canada Isn’t Dealing with or even Documenting our Poverty Crisis. Poverty is endemic for autistic people in Canada and this is because of four factors.

1. Some autistic people have been too traumatized by abusive behaviour therapies to even function in a workplace;
2. Many autistic people want to work but need flexibility in the interview process and the workspace/hours;
3. For those who cannot work for temporary or long stretches due to disability or other reasons, there are no adequate programs to support them during transitions between working and not working; and
4. Intellectually Disabled individuals are still being warehoused in sheltered workshops, working for pennies when they could be trained to work for a living wage or engaged in integrated, positive community projects.

The data vacuum on poverty is staggering. The Government of Canada has never measured poverty among the autistic and IDD population, nor undertaken any universal measures of our independence, fulfilment, housing or employment needs. The only measure the Government has done is determining an estimate of how many of us exist, through a bureaucratically unwieldy endeavor involving “environmental scans” for autistic people, titled the “National Autism Spectrum Disorder Surveillance System.”

The Government of Canada is Investing Millions in Programs without Independent Data. Without any meaningful data, the Government of Canada has invested hundreds of millions in autism-related projects and our provinces/territories have invested billions in “autism services.” In the vast majority of cases, these projects were merely presented for a bureaucratic rubber-stamp by the providers who profit from them, with providers using their own weak/biased data to justify the expenditures. In many projects there was no bidding process and often not even an RFP before millions were appropriated. The current system has no accountability, no sustainability and no measures of effectiveness, harm or redundancies.

It should be worrisome to every Canadian that this trend could continue, with many in government supporting the “National Autism Strategy” directed by CASDA, a provider-focused group that bases its proposed $50 million “autism” budget on a survey in which less than 5 percent of participants were autistic! To repeat: 90 percent of respondents to the “needs” survey being used to justify $50 million of government funding do not even have the disability the so-called strategy is claiming to serve.

In fact, CASDA’s plan is opposed by all autistic self-advocacy organizations, nationwide.

The Government of Canada Declines to Fund Grassroots Community Education, in Favour of Patronizing Projects that Don’t Work. Un- and underemployment is a massive issue in our community and autistics working in IT and a range of other sectors are being chosen by the private sector and non-profits to be mentors to other autistics—however the Government of Canada does not fund a single one of these programs, instead appropriating $600,000 on a “mentorship” program through an “autism centre” where the mentors are not themselves autistic. We don’t need well-meaning social work students to be our “mentors”. We need people in our own fields of interest, who are also neurodivergent to build an authentic relationship as equals… as in, a REAL mentorship program.

Canada has very few community education programs to keep autistic people safe and allow us access to necessary services, and none are funded by the federal government. For example, hundreds of thousands of autistic and other Canadians are unable to rely on speech alone to communicate; knowledge of communicating with AAC users is an essential skill for health providers. Yet 99% of Canadian medical students are not trained in speaking with someone who uses AAC. (For a definition of AAC, please see page 5). This means the majority of non-speaking autistics do not have access to adequate medical emergency and clinical care.

In addition, two-thirds of police and other emergency first responders have no training in communicating with autistic people. In fact, the only Canadian program for first responder education was rolled out by PAFN and Autism Speaks. Autism Speaks endorses the use of an  “autism identification wallet card” that autistic people are supposed to pull out to show to officers in a crisis situation. This is clearly unsafe and potentially deadly for autistics of Colour, if they were to reach into their pocket when confronted by officers. Further, Autism Speaks Canada’s attempt to develop a national “autism database” is neither practical nor efficacious when what is truly needed is autism-informed, trauma-informed training for all responders.

It would not be difficult to roll out community education programs– based on models elsewhere and utilizing the expertise of local autistic people– but the current government has not committed to it. Instead, efforts are piecemeal and mainly involve non-autistic people/agencies rolling out education programs that are not based on research and lack rigour. Grassroots programs remain unfunded because the bulk of funding is still being directed towards a “behaviour” project that doesn’t work.