We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee.
Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard
One snowy day last March, a group of autistic Canadians walked up the steps at Queen’s Park in Toronto to meet with MPP Amy Fee, who graciously welcomed us into her office to talk about autism policy. In that moment, we realized that we were making history. It was the first time that the Government of Ontario had ever consulted with autistic people about autism policy.
It seems unbelievable, doesn’t it? After all, hundreds of millions of dollars have been spent on autism programs and services in our province: could it be possible that our provincial governments had never asked autistic people about autism policy? It’s true. Our former governments had only ever consulted with a select group of service providers and parents, never with autistic people.
We would like to thank our current government for correcting an inequity and consulting with autistic people about the policies that affect our lives. Not only are we key stakeholders, (obviously) but as end-users of services, we have a lot of insight into how existing programs are run and what can be done to reform the system towards a more effective and sustainable model of service, with new paths for care and a new ethos emerging: inclusion.
Precedent for Inclusion
While Ontario may be one of the first provinces in Canada to be moving towards inclusion, it is not the only one worldwide. In this report, we will show the example of the UK, Scotland, New Zealand, parts of Canada and parts of the US, who are all moving away from the old segregationist approach towards including autistic people as valued members of the broader society (See Appendix 3, If Not ABA, Then What?).
We know that when autistic–and all disabled people–are included, it lifts our entire society. As we explore in this report, universal/inclusive design is good for everyone. Also, inclusion is the right thing to do. (See Appendix 1, Letter from New Brunswick’s Former Education Minister, for an example of the power of inclusive design.)
A Note on Terminology: We are autistic. As such, you won’t be reading hurtful terms like “epidemic”, “tragedy”, “burden” or “pay now or pay later” in this report. We know that we are who we are and we like and value ourselves. We are not a problem to solve (or to shove out of the way): we are a part of society and we strive for inclusion and respect. We want to fully be a part of the broader society and we seek to find the best ways to make that happen.
Overcoming a Legacy of Segregation
The former government’s model for autism services was based on segregation of autistic people and the foundations of its funding model were monolithic. All autism services and funding were grouped under one Ministry (Children and Youth Services) and all funding was directed to one program ( ABA, which is built on a segregation model). All funding decisions were made with the input of one lobby (ABA providers), without input by end users or any other stakeholders.
Under the old model, autistic toddlers and preschoolers were streamed into full-time, segregated ABA/IBI schools while their peers were playing and getting to know one another at community centres and Early Years programs. By virtue of their geography and ideology, the IBI centres separate the autistic children and stigmatize them as broken versions of normal, not truly a part of their communities.
It is no surprise then that autistic children in Ontario have been starting school at a social disadvantage: they are not a part of their neighbourhood community (because they attended IBI centres, not their local community spaces). It should be no surprise that their peers (who don’t have experience playing with autistic kids) likewise lack the social skills to relate to them.
No one should be shocked that spending the day racing through mazes for M&Ms and “school readiness” such as cutting up business cards with scissors likewise does not prepare autistic children for the complex social world of a school in which everyone else has known each other for years and has culturally-specific ways of communicating unrelated to the therapist’s prescribed lexicon of “no-no” and “good boy”.
Without a social context or social bonds, nor the life skills that they could have developed through the normal free play and community activities of early childhood, many autistic students in Ontario primary schools are doomed to be out of place and adults (ever-eager to place them) too often stream them into special education classes and consign them to 13 years of segregation within school. Those students who do remain in the mainstream classroom are typically paired with an ABA aide (and only ABA aides are allowed in Ontario schools, per the former government’s PPM 140), with districts still seeing ABA as the solution –when in our view, it is really the heart of the problem.
Once school has finished, students in special education or those who experience institutionalized stigma within a mainstream class, are less likely to attain any type of post-secondary education and more likely to end up living in segregated group homes and unemployed or working in a segregated workplace. This outcome, also, is completely predictable. By contrast, students who are integrated into the mainstream in a meaningful way are more likely to thrive and achieve autonomous living with or without varying degrees of support.
So why has the IBI system maintained such dominance in public funding in Ontario, when it clearly leads to a life of segregation?
This has in part to do with our province’s legacy of residential institutions, but also with the marketing of the ABA system and the way politics was done in Ontario under previous administrations. ONTABA is quite simply the most powerful (and until recently, the only) lobby on this issue. Their marketing has hinged mainly on fear – frightening parents with the false claim that theirs is the “only evidence-based” method and providing phony reassurance to policymakers that all they need to do is “pay (tax dollars) now” to avoid having to “pay later” (at the polls).
We hope that, to whatever degree possible, new administrations can push back on this fear and open up our province for choices in service and better inclusion of autistic youth and adults.
Our Background and Resources
We recognize the strengths and limitations within our own knowledge as a group. We have no paid staff to prepare this report (nor any financial stake in the recommendations we are giving). Unlike ONTABA, who hired the Pathway group to lobby eight Liberal ministries in 2017, we obviously don’t have paid firms doing our lobbying and PR! We are autistic adults, who once were autistic children, and we just want to help make things better.
Our members comprise both verbal and nonverbal/semi-verbal communities, represent a broad range of ethnicities; racialized identities; disabilities; economic class; genders; sexualities; education levels; and level of support. Our group spans the full expanse of political and social views. As an organization, we are firmly non-partisan.
Beyond our immediate group, we also have partners such as our parent auxiliary who are very active and helped with this report. As an international affiliate of the Autistic Self-Advocacy Network, we also have their mentorship and example. And we called upon a broader group of experts on inclusion in schools, housing and employment to inform our policy paper.
Organization of Report
We have organized this report into three sections:
- School Inclusion
- Early Years
- Public Schools
- Transition to Adulthood
- Health Care Access
- OUTLINE OF THE PROBLEM AND POTENTIAL SOLUTIONS
- Schools: Making Inclusion Work
- Health Care: Access and Safety
- Employment Fairness and Economic Security
- Safe Housing and Housing Autonomy
We appreciate our government’s taking the time to read these sections and look forward to hearing your feedback.