UPDATED: Our Autism Policy Report to the Government of Canada

We’ve updated our Autism Policy Report & Recommendations to the Government of Canada. It contains description and critique of the Government’s current failed policies as well as recommendations, based on consultations with experts, for creating policy that is actually helpful.

The Full Report is important because it describes the pathway to the current failed policies. It is helpful to understand this path when forging an entirely new one. The full report also contains all the recommendations.

The List of Recommendations is provided for policymakers who don’t read long things.

The Full Report: A4A National Policy Report & Recommendations, 2021

The List of Recommendations: A4A National Autism Policy Recommendations 2021, Abridged

-AB

Government of Ontario: STOP promoting abusive autism “therapy” in schools

Ontario’s autistic-led advocacy group, Autistics for Autistics, strongly condemns the Government of Ontario for allocating $7.5 million to train provincial teachers in using a bogus autism “therapy” known as Applied Behaviour Analysis (ABA).

On behalf of the autistic children of Ontario, we ask the Government of Ontario to de-fund this wasteful and abusive program now.

 About ABA and Ontario education policy

  • Applied Behaviour Analysis (ABA) was founded by O. Ivor Lovaas, a behaviourist who also co-founded gay conversion therapy.
  • Much like gay conversion therapy, ABA is based on an “aversive” system to attempt to train children to comply with ABA providers (known as BCBAs). Aversives may range from denying play time to electroshocks.
  • A year of ABA can cost $30,000-$90,000 per child. In contrast, inclusion-based alternatives to ABA are affordable and sustainable.
  • ABA-based school programs have been sued for human rights abuses in Canada, including high-profile cases in Alberta and Ontario.
  • When surveyed, autistic people consistently oppose ABA. In a recent survey of 3,431 autistics, just 5% supported ABA. ABA is also rejected by many parents, teachers, autism experts and therapists.
  • Ontario’s association of ABA providers (ONTABA) hired the Pathway Group. The Bay Street lobbying firm targeted specific Members of Provincial Parliament who make budget decisions.
  • ONTABA opposes equitable funding for non-ABA supports such as Occupational Therapy, Speech Language Pathology, nor AAC technologies for non-speaking children. In fact, BCBAs have lobbied to get all of the funding for their own industry, including shutting other therapists out of Ontario schools.
  • While BCBAs argue that ABA is “the only way,” ABA is rarely used outside of the US and Canada. In the United Kingdom, ABA is not generally used nor funded because the Health Service doesn’t support services that are not evidence-based.

What the research says about ABA

Questions for policymakers

Ontario policymakers and educators need to ask themselves some hard questions

  1. When the very people being supposedly “served” by a therapy organize against it in such numbers and with such passion, is it ethical to provincially fund ABA?
  2. With no evidence of benefit, clear evidence of harm and parent demand for alternatives, is there any rational reason to invest in ABA?

Government of Ontario:Please reach out to autistic-led advocacy organizations so that we can connect you to better approaches to autism services and policy. Do what’s right. De-fund ABA now.

Ontario may change legal definition of “child” in legislation to include disabled adults: A4A responds

A4A was contacted by the Ministry of the Attorney General to give our view on a proposed legislative change of the definition of “child” that would include disabled adults, potentially over-riding the Substitute Decisions Act, which governs decision making for developmentally disabled adults in their decisions in housing, health care and more.

Below is our response:

Response to the proposed definition change of “child” in Ontario policy

As an autistic-led advocacy organization, Autistics for Autistics opposes the proposed change in the Province of Ontario’s definition of “child” so as to align with the federal definition of child in its Divorce Act, to include disabled adults.

Context

We present this response with the understanding that although autistic and/or developmentally disabled adults are not children, unfortunately many in Canadian society still hold that view. This includes policymakers at both the provincial and federal levels.

That regressive approach to policy has profound negative effects on the lives and safety of autistic and/or developmentally disabled adults in Canada, due to residential segregation (which is sadly a norm in Canadian policy); poverty; unemployment; and the denial of communication access rights (AAC) for many nonspeaking autistic adults.

The bulk of Canada’s federal and provincial disability-related legislation has been applied only to disabled adults without intellectual disability, meaning that:

  • developmentally disabled adults in Ontario and across Canada do not have their access rights protected (despite promises in legislation);
  • developmentally disabled adults are not able to choose their own support workers (as other disabled people are); and
  • there is no commitment to independent living in the community by either the Government of Canada or the Government of Ontario.
    • In fact, 80 per cent of housing in the I/DD sector is still allocated for residential
      institutional models
      (large institutions or group homes).

Proposed change to the definition of “child”

After surveying our members and reviewing case law in the US and Canada, we’ve identified two significant risks with the proposed definition change, outlined below.

Risk 1: The new definition could be used in court proceedings to infantilize an adult who may otherwise be a candidate for independent living and supported decision making.

This infantilization would have a devastating effect on disabled individuals’ capacity to live independently with supports if they are presented in court as a “child” rather than an adult with the needs and rights of all other adults.

  • All disabled adults – including those with developmental disabilities – should have the right to housing and supported decision making that is independent of their parents.
  • Some parents wish to retain control over their adult children’s finances and independence for a variety of reasons; many have good intentions, others are doing so for their own fiduciary gain.
  • Regardless of those parents’ intentions for limiting their adult offspring’s living options, it leads to a lack of basic freedoms as identified under the Charter and a grim future as the person ages through young adulthood, midlife and into their senior years.
  • Judges are not immune to bias. The use of the term “child” would reinforce any existing biases about developmentally disabled adults having unequal rights with other adults.
  • Robust policy is a form of insurance against bias in decisions; the current definitions provide an important degree of protection.

Risk 2: If the definition of child is changed as proposed, it would raise problematic issues for the interpretation of the Substitute Decisions Act –with the Children’s Law Reform Act being utilized where it is not appropriate.

  • Currently, the Substitute Decisions Act governs issues around decision making for developmentally disabled adults.
  • While there is room for improvement in the Substitute Decisions Act, it remains a critical tool for ensuring rights of developmentally disabled and other disabled Ontarians.
  • Without a rigorous Substitute Decision Act, decision-making bodies could easily relegate disabled adults to the status of children, limiting their rights and freedoms.
  • With decisions applying the new definition of “child,” individuals would more often be denied access to independent living and supported decision-making.
  • Those individuals able to access the resources to appeal a decision that deprived them of supported decision making would have less recourse if the Substitute Decision Act loses its rigour.

Policy Discussion

Autistics for Autistics supports independent living and supported decision making. We oppose the existing regressive approach to guardianship in Ontario, which need a complete overhaul. We advocate for provincial (and federal) politicians to study best practices in other countries and to reach out to groups such as ours when making policy–instead of their current approach of giving millions in discretionary funds to organizations that profit from segregation and abuse.

Our hope for the future is that our province will move towards recognizing newer models of housing independence such as the “money follows the person” model in various US jurisdictions and the wonderful work of currently underfunded organizations such as LiveWorkPlay in Ottawa.

Perhaps this is a moment where our province could lead the way towards Canada-wide reform by contemplating why, in 2021, it has considered labeling disabled adults as “children”. Perhaps policymakers could use this moment to learn and grow, studying best practices and consulting with autistic and/or developmentally disabled adults across the province about the kind of lives they want and deserve—independent lives in the community, reflecting the overarching values of our province and our democracy. This discussion is long overdue.

Please feel free to contact Autistics for Autistics to read our provincial and federal policy reports or to discuss any other issues.

Thank you.

Anne Borden King

Board member, representing the Board
Autistics for Autistics, Ontario

2020 was not a good year for ABA: A research review

by Anne Borden King
Autistics for Autistics, Canada

This paper looks at recent research reviews of ABA, outlining 4 themes.

  1. Research and retrospective reviews of ABA research show no evidence of benefit for ABA.
  2. Conflicts of interest are pervasive in ABA research, with more than 70% of research being done by persons with a financial stake in positive outcomes.
  3. ABA research design is flawed, with small sample sizes, absence of RCTs, detection bias and typically no assessment of risks or adverse events.
  4. There are many negative impacts to ABA, which are only recently being researched.
    .
    Read the full report, with citations, here: ABA Research Review 2020

 

Statement on TCDSB’s attempt to force a student to attend in-person classes

As a human rights organization focused on the needs of autistic, intellectually disabled and special education-tracked students, Autistics for Autistics condemns the decision by the Toronto Catholic District School Board to attempt to force Nekeba Cuff, a Grade 10 student, to risk his life by attending in-person classes at the height of the Covid-19 pandemic.

Nekeba, who recently lost his grandmother to COVID-19, should not be forced to attend in-person school during this pandemic. It is particularly cruel and unsafe to expect him to use transit to attend a school in another district. COVID-19 affects Black Torontonians disproportionately, according to data gathered by the city.

Toronto’s special education system, in which Nebeka has been a student, has long had a racism problem. This recent decision only highlights the approach of some educators to treat students like objects in their system, rather than as people with health considerations, families and the right to autonomous decisions about their safety.

We support the Cuff family in their upcoming human rights complaint and hope it sets a standard of care for all districts in this province, putting them all on notice to redress the structural racism in their systems.