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Our Report to the Government of Canada: Introduction

We are blogging our Report and Recommendations to the Government of Canada, by section. Below is our introduction to the report.

Full report: A4A National Policy Report & Recommendations, 2019

Introduction
Our National Mandate:  End the systematic segregation of autistic people in Canada. Inclusion and dignity for all.

About Us
Autistics for Autistics is a Canadian autistic led-and-run self-advocacy group. We have experience in advising on policy provincially, with white papers that apply provincially and federally. We also engage in community education and outreach projects and host events for autistics, families & friends through our chapters in Ontario and New Brunswick.

We are an international affiliate of the Autistic Self Advocacy Network (ASAN), a provincial member of the Autistic Advocacy Coalition of Canada, and part of the broader disability rights movement internationally.

About Autistic Self-Advocacy
Autistic self-advocacy can be summed up in the phrase nothing about us without us. Like the rest of the disability rights movement, we reject the segregation and barriers that still exists in schools, employment, housing and public life.

The autistic self-advocacy movement is based on a few facts:

  • We will always be autistic.
  • We want to like and feel good about ourselves, not be told we’re broken, toxic and wrong.
  • With simple accommodations, we can be included in school, work and all society.

About the Report
Autistic people in Canada are living with an unmitigated crisis of poverty and disadvantage.

We face high rates of unemployment, precarious housing, and homelessness.

Many of us do not receive health care and other services because of communication access barriers.

We often face exclusions, stigma and abuse in schools.

Our suicide rates are nearly 9 times that of non-autistic people.

These are all major social problems and it isn’t “living with autism” that causes them. In large part, these crises are directly caused by Canadian social institutions’ lacking the awareness or political will to break out of a pathologizing, segregationist approach to autistic and intellectually disabled (IDD)  people.

When a disability is accepted and accommodated, the disabled population fares better in life and the entire society is lifted in the process. Autistic/IDD people deserve that chance in Canada. Canada deserves that chance. That is why we advocate a National Disability Strategy that would include autistics across policy portfolios, together with other disabilities, rather than the current mandate, which is to silo autism services in the Health Ministry.

In this paper, we outline the problems that need solving, as well as specific policy solutions around communication and accessibility in the areas of: early childhood; education; housing; employment; health care access; and community/social education. We also identify the broader policy project of moving from a segregation model for autistic/IDD services towards one of inclusion.

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.

Our Report to the Government of Canada: Part 2, The Issue of ABA Funding

We are blogging our report and recommendations to the Government of Canada, by section. Below is our discussion of ABA funding policy.

Full report: A4A National Policy Report & Recommendations, 2019

ABA: The system that takes and takes
It’s time for us to address the elephant in the room: most provinces are directing most or all of their autism funding to an autism therapy that isn’t scientific and that autistic people do not want: Applied Behaviour Analytics (ABA). There are many ethical and practical reasons to oppose provincial governments spending all their autism dollars on ABA, but we will focus on the most obvious: paying for thousands of kids to get an $80,000 per year therapy that has never even been studied with even one random control trial, and whose recipients actively campaign against, is not sustainable.

A prime example is Ontario’s failed approach of investing billions in ABA–wasting so much government money that there literally was none left for the programs that would make real change, such as:

  • School inclusion mandates using universal design;
  • Services such as speech language pathology, psychotherapy and OT;
  • Education about AAC to give non-verbal people access to school, workplaces and medical care;
  • Employment programs that work;
  • Affordable housing programs that respect disabled people and bring sustainable results;
  • Education for first responders;
  • and more.

If we look at the “success” of ABA in the 18 years since it was rolled out in Ontario, the statistics are grim. For an estimated $300 million per year in government-funded ABA, we in Ontario now have:

  • More school exclusions;
  • More mental health issues and higher rates of suicide;
  • Growing joblessness; and
  • Increased housing insecurity.

The failures of the ABA-dominated funding scheme are not surprising when you consider that ABA is a form of Radical Behaviourism, which has its roots in the thinking of BF Skinner, who studied animal subjects in the 1930s and 1940s, using electric shocks and other aversives to control animal behaviour. ABA’s founder, O. Ivor Lovaas, did not understand autism and the myths he perpetuated still power the ABA movement. Writing about his autistic patients, Lovaas stated:

“You have a person in the physical sense –they have hair, a nose, a mouth, but they are not people in the psychological sense. One way to look at the job [of autism therapy] is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

Sadly, in ABA literature we still often still see the idea that autism is a deviation to be fixed and a “real” child constructed through the therapy. As well, the profession of ABA doesn’t just ignore abusive practices among its own members–it endorses them. For example, the Judge Rotenberg Centre, an ABA-designed- and-run centre, has been using shock torture on autistic and IDD people, a practice which has now been banned by the FDA and is classified as torture by United Nations watchdogs. Yet the Association for Behavior Analysis International (ABAI) decided to feature the Judge Rotenberg Center (JRC) at their 2019 annual conference. As the Autistic Self-Advocacy Network writes:

“ABAI’s decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRC’s presentation at this conference specifically focuses on the ‘merits’ of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”

We can’t move forward without naming this schism: between ABA industry reps (who hire lobbying firms to build relationships with politicians) and ordinary autistic people and our families without any dollars, who are asking to be heard. Indeed, the only way to break from the old model of autism services is to become open to constituents like us, as well as independent data, with a  clear mind unfettered by entrenched financial and political relationships. It’s an uphill battle, in other words.

Successful, non-ABA programs are available at less cost that the “behaviour” industry (read our paper about them), but it requires a culture shift within policymaking towards integration and autistic acceptance–with an audit system that prevents the fiscal abuses that have been rife within autism services in Canada.

What has held this change back is threefold:

1. Lack of awareness among policymakers that systems of accountability are non-existent or failing;

2. Political relationships between politicians and local ABA/IBI centres; and

3. Lack of political will to push back against the ABA/IBI industry’s mandates (the current Ontario government being a notable exception to this).

There are families in Ontario who chose not to use ABA and opt for psychotherapy, developmental therapies (e.g., RDI, DIR Floortime) or programs like the SCERTS program, or science-based services that teach life-skills like Occupational Therapy (OT) and Speech Language Pathology (SLP). These families are mostly sidelined from funding and sometimes even stigmatized by schools—in most provinces, they are paying 100% out of pocket for non-ABA services that helped their children. Some families also home educate their children as the only way to avoid ABA-mandated EAs at school. Inclusion-based programs, which are thriving elsewhere, still remain largely invisible in our federal policy landscape.

When autistic people point out facts (above) or share ideas, we often feel like it’s unwelcome because it’s “not the way we’ve always done it.” But really, that’s exactly the point. It’s time for change.

 

Our Report to the Federal Government: Part 3, Summary of National Goals

We are blogging our report and recommendations to the Government of Canada, by section. Below is our summary of national goals.

Full report: A4A National Policy Report & Recommendations, 2019


The role of autistic self-advocates in policy reform

When it comes to autism policy, it does seem that some policymakers just can’t seem to see the forest for the trees. As systems thinkers, autistic people are uniquely positioned to discuss and map the forest–and we are doing that. In addition to system thinking, there are other advantages to working with us, such as: non-partisanship, lack of transactional economic political ties; honesty; and lived experience. We also have experience consulting with provincial governments and have built relationships with experts in other jurisdictions in the areas that need reform.

We are asking the government to consider an alternative to the current broken system: inclusion, a sustainable approach that values our dignity. It is time for governments to listen to us—not just “tell your life story,” but “what are your ideas?”–and to the inclusion experts who have implemented programs that work.

There are better ways. Our government needs to study other jurisdictions, listen to us and launch its own initiatives towards a reform of autism services that reflects an ethos of integration and finally puts to rest the ghosts of the residential institution era.And the Government of Canada must include autistic groups front and centre in this process.

Our vision, by 2022:

  • A Communication Charter of Rights for non-verbal and semi-verbal individuals, for fair access and accommodations in all aspects of Canadian life, including specific educational mandates for teachers, health care providers and first responders.
  • Community inclusion for autistic toddlers and preschoolers. Ban segregated IBI “behaviour mills.” Include autistic preschoolers in everyday life and the world of play with their peers.
  •  Inclusion in schools for autistic children. Meaningfully engage universal design experts to share best practices and models. Incentivize their use across Canada, with the goal of phasing out segregated classrooms.

 

  • Independent supported living (ISL) for autistic and/or IDD adults, with priority government funding to existing ISL projects and new ideas. A government commitment not to fund new segregated housing projects.
  • Employment access for autistic adults. Train employers on making their interview processes and workplaces accessible, based on models (e.g., Microsoft). Close all sheltered workshops. Focus on training or employing autistic people in all career fields and not just jobs that stereotypically employ autistic people (e.g., IT and banking).

 

  • Community education about autistic communication/AAC and accessibility, developed with autistic self-advocates as project leaders. Launch programs for: First Responders; medical professionals; teachers; transit workers; and others.
  • Independent financial audit and service evaluation of all autism-related services, charities, and programs that receive government funding. Root out the bad players and create better systems of sustainability and accountability.
  • An autistic “census”, either creating a category in the existing census or through community consultations to determine our needs. Government gathers its own data (not relying on provider “data”) to make informed funding decisions.

Our Report to the Government of Canada: Part 4, Communication Access/AAC

We are blogging our report and recommendations to the Government of Canada, by section. Below are our communication access policy recommendations.

Full report: A4A National Policy Report & Recommendations, 2019

Communication access/AAC
25-30% of autistic people are non-verbal or semi-verbal. This means that like some other disabled people, we need access to augmentative and alternative communication platforms, called AAC. AAC is any means of communication–aside from verbal speech–that allows someone to use language. AAC can include: pictures; gestures; sign language; visual aids; and speech-output devices like phones or iPads.

The average time it takes for an autistic child to receive this essential communication access is 2.5 years. That is 2.5 years too long! Government funding programs must begin to adequately fund the services and technologies that allow non-verbal autistic children to communicate–and their caregivers to properly communicate with them.

As one of our members notes: “When I found AAC it was like throwing a drowning person a lifeline. It has changed my life. I was able to get employment supports; they set me up with an employment support worker who helped me find and apply to jobs…I went from minimum wage, followed by unemployment, to a full time job where I am constantly getting praise for the quality of my work. I didn’t change. My skill set didn’t change. My work experience didn’t change. The way I look and act didn’t change. The only thing that changed was how I communicate. …I cannot stress enough how big a difference AAC has made for me.”

AAC: Recommendations
Please note: AAC is not a part of ABA and it needs to be funded independently of ABA.

  • A Communication Charter of Rights for non-verbal and semi-verbal individuals, for fair access and accommodations in all aspects of Canadian life, including specific educational mandates for teachers, health care providers and first responders.
  • AAC access for all who need it, without delay.
  • Base funding for new acquisitions on changing communication and developmental needs rather than an arbitrary “5-year” timeframe.
  • Remove federal HST from iPads prescribed as a dedicated communication device, to improve access.
  • Partner with medical schools to create an education module for health care practitioners (especially ER) on how to communicate with AAC users.
  • Education for employers on AAC and autistic communication, led by disability self-advocacy groups.
  • Universal AAC education for first responders across Canada, led by disability self-advocacy groups.
  • Universal AAC education for teachers and staff in Canadian schools, led by disability self-advocacy groups.