Our Report to the Government of Canada. Conclusion: Reforming How Autism Policy is Made

We are blogging our report and recommendations to the Government of Canada, by section. Below is our policy reform overview and conclusion to the report.

Full report: A4A National Policy Report & Recommendations, 2019

Reforming how autism policy is made
As end-users of services, autistic people are the major stakeholders in all autism policy. We must be consulted nationally. Our government also must consult with inclusion experts and other disability organizations within and outside of Canada to understand new models that value inclusion.

We are asking the Government to craft policy that is informed by real inclusion experts, globally, who are making access happen.

Oversight in Autism Services
It is crucial to have adequate oversight of funded “autism service” organizations and charities to detect conflicts of interest, misuse of funds, sweetheart deals, pork barrel and service monopolies–as well as to assess the relevance, utility and fiscal responsibility of the programs our government is funding.

Unfortunately, some organizations have profited from attaching the words “autism” or “children” to their brand as a way to avoid the type of scrutiny we expect of other businesses. Let’s put a stop to it.

We are asking for financial audits of every autism service organization receiving government funding, as well as reviews of how previous federal funding was undertaken, both for transparency and to learn from past mistakes (e.g., where bidding/RFPs were wrongly bypassed and project decisions made based on weak industry data).

Start using good data
It’s ….a problem when governments give hundreds of millions of dollars to “autism service” projects without robust demographic data about the needs of the targeted population. It’s also a reflection of an antiquated, patronizing approach where non-disabled people make decisions that impact our lives based on tiny selected samples and random theories about how our minds work. That approach doesn’t solve problems; in fact, it only profits when the problems aren’t solved.

Let’s solve problems instead. Have the government collect its own data, using multiple databases (or a broad platform like a Census) to collect demographic information and determine gaps in service, areas of need and the (in)efficacy of existing approaches–as they develop new and creative approaches that are also built around data… the data being case studies and pilots from other jurisdictions who have had successes using new and novel approaches.

De-silo autism services: Create a National Disability Strategy
Federal autism policy is currently administratively siloed in the Health Ministry, kept apart from other disability policy. When we asked about this, we were told “that’s the way it has to be.” Not sure what that means, but it is a very poor decision that should be reversed.

Canada deserves robust accessibility legislation that includes autistic people. We are asking the government to begin to include autistic Canadians in its disability policies, across portfolios–and to do a serious audit of autism service providers and how they have gained government contracts–in order to reform that system. We are also asking the government to meet with autistic self-advocacy groups to hear our ideas and discuss our resources and policy recommendations.

By keeping autism policy silo’d away from other disabilities, policymakers have created a false impression that autistic people’s fundamental needs are different from other disabled people. They’re not.

We all need access, human rights, dignity and self-determination in housing, employment, education and health care. Many specific issues, such as communication rights and access for non-verbal people, also apply across disabilities. Autistic self-advocacy groups, universally, identify with the broader disability self-advocacy movement. National policy should reflect that.
Opposing the CASDA Blueprint
We are disappointed to see that a non-autistic coalition called the Canadian Autism Spectrum Disorder Association (CASDA) is calling on policymakers to support its blueprint for a “National Autism Strategy” and that some politicians have endorsed this blueprint.

CASDA’s plan is opposed by ALL autistic self-advocacy organizations nationally, including all provincial/territorial chapters of Autistics for Autistics, as well as all provincial/territorial chapters of Autistics United Canada and in Ontario by London Autistics Standing Together. Also, the parent-led advocacy groups Autistic Advocacy Ontario and the Ontario Disability Coalition support our statement against CASDA’s Blueprint, along with other individuals and groups within the autistic community and disability rights movement in Canada.

A National Autism Strategy led by CASDA would maintain the current broken system of autism services in Canada, where providers oversee wasteful projects that reflect outdated approaches, are not based on robust data and do not meaningfully engage the community.

In fact, CASDA’s multi-million dollar “strategy” is based on a “needs” survey in which autistic people made up less than 5 per cent of survey participants!! CASDA’s strategy meets the needs of service organizations to stay afloat; nothing more.

A working strategy for autism policy would involve critically examining the failures of the current service model; integrating autism as a disability within all disability policy; and consulting with disability self-advocacy groups.

Outside regulation for ABA
We have grave concerns over the suggestion that BCBAs strike a “self-regulatory body” to keep an eye on other BCBAs. This is equivalent to the foxes guarding the henhouse, in our view. 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.”

Any new regulatory bodies for ABA should be completely independent and arms-length from the industry, with no members of the industry represented in any advisory or decision-making capacity. Like other autism pseudoscience, ABA needs to be strictly reviewed by our government through an independent oversight body to regulate and stop abusive practices.

Recommendations: Policymaking

  • A National Disability Strategy. Federal government meets with disability self-advocacy groups, including autistic-led groups, to plan the National Disability Strategy with self-advocates as lead advisors, using independently collects data and studied best practices in other jurisdictions.
  • Undo the former governments’ silo-ing of “autism services” into a single portfolio. Integrate the needs and interests of autistic people into multiple, relevant portfolios.
  • Follow the lead of Scotland, who has made it law that autistic people be consulted when the Government crafts autism policy, in perpetuity.
  • Financial auditing and oversight of all organizations offering “autism services” to prevent price-gouging, monopoly, pseudoscience and unsustainable service models.
  • Do not endorse the establishment of a “self-regulating body” of BCBAs.

We all know that autistic people deserve better than the policies Canada has been delivering. We know that we don’t have to live segregated lives. Just because Canada has “always done things this way” doesn’t mean it has to. There are better ways and best practices elsewhere that our federal government can learn from. By setting inclusion as the standard, the norm, our government can begin to move Canadian autism services into the 21st century.

We are asking the Government of Canada to start now.