by A4A, Ontario’s first autistic self-advocacy organization
The news of the past week in Ontario has been somewhat surreal for autistic people. Every morning we have opened our browsers to see a trail of articles featuring parents speaking out against the new government for scrapping the former government’s Ontario Autism Plan (OAP). Parent after parent were interviewed, sometimes accompanied by photos with their children (who were never interviewed) and a standard headline associating the policy changes with sadness and tragedy.
But as autistic self-advocates, we feel neither sad nor tragic about the changes. In truth, we feel a sense of relief now that the OAP is finally gone.
This might surprise some of you reading this. That may be because all you saw in most media was a narrow group of parents.
So, would you like to hear what we think?
Looking Forward to a Better Policy
We feel optimistic about the changes. We are glad that there will now be a greater share of funding for low-income families and that the government has doubled funding for diagnostic hubs. These are both very positive changes!
We also see that there is the potential for more choice in service providers, instead of just Applied Behavioural Analysis (ABA) as under the former plan. Did you know that, when polled, autistic people consistently oppose ABA, at a rate of about 97-98%? Within our Ontario membership, the numbers are the same. While we understand that ABA funding will continue, we are confident that fairness will now prevail in allowing families the choice of other options.
We are hopeful that a new policy may actually acknowledge the needs of autistic adults. Shockingly, the former government’s plan did not mention or allocate even one dollar of funding for adult services. We had a great deal of concern about this at the time the policy was being crafted, but we were shut out of consultations because our concerns didn’t fit the narrow agenda of the former government’s policymakers.
We are also feeling ready. When the original OAP was being developed, A4A had not yet unified as an advocacy group and important national groups such as Autistics United Canada were never consulted. We have now established capacity and built partnerships with private sector and not-for-profit groups, as well as relationships with provincial and federal officials.
These partnerships have been a wonderful opportunity to get down to work with partners and effect change, together. We hope to bring some of that spirit into consulting with the new government on adult community needs. We have just reached out to them and hope to hear back soon.
A New Plan
We have a wish list for autism policy in Ontario. Not surprisingly, it looks quite different than that of the parents rallying at Queen’s Park. There has been only one item on their wish list: ABA. It is absent from ours. We advocate a nuanced approach where solutions can be forged through partnerships across the community and by studying best practices in other jurisdictions.
We see at least three key elements that were missing from the OAP, which led to it being an unsustainable plan:
- Meaningful data about our population (not “data” prepared by a lobby group);
- Consultation with autistics, as the persons being served by the policy; and
- Concern for autistic people across the lifespan.
In our view, an ideal autism services plan in Ontario would:
- Communication. Educate service providers, teachers, employers and physicians about alternative and augmentative communication (AAC) to make education, employment and other settings more accessible to non-speaking autistics. This training would increase employability, improve health care access and help non-speaking autistics to be included in society.
- Accessibility. Leverage the power of inclusive (universal) design. Inclusive design makes life better for everyone. It is an inexpensive way to bring about immense changes in the classroom and other settings, reducing negative incidents and improving student and job retention. By looking at best practices elsewhere, the government can create a model for inclusive design that is portable to a variety of settings.
- Special education reform. Collect data on special education and Individual Education Plans (IEPs), including number of school exclusions and the use of restraint and isolation. There has been a total lack of accountability in our school districts about this, making it impossible to quantify. But several reports we have cited shed light on what is happening. Our new government could work with partners to build a professional-development plan for teachers, as well as accountability structures.
- Consultation. Ask autistic people about our economic, housing situations and employment status. By understanding economic factors in our community, the government can better develop programs to improve quality-of-life, with broader economic impact on our province.
- Jobs. Build partnerships with the private sector around jobs. There is innovation and a spirit of cooperativeness in various sectors around jobs for autistics, and no government to date has adequately leveraged it. Many of our members are seeking opportunity, but are either underemployed or unemployed. Partnerships between private and public sector, with meaningful input from disability and autistic groups, would create an environment where more of us could find jobs and get out of poverty.
- Housing. Identify partners in the community who can collaborate on housing and other initiatives. Not-for-profits working with IDD and disabled communities on issues like housing were shut out by OAP drafters, who only chose to pursue ABA. We have had amazing conversations with some of these groups, most of whom operate outside of the autism services industry and offer a much-needed, fresh perspective on change.
- Assessments. Find technology solutions to the lack of access to diagnostic services and therapy for individuals of all ages in remote areas. We know that the new government is committed to this and we would love to be able to assist in getting these technologies up and running. As well, technology can be leveraged in all communities to benefit all. This is well overdue!
- Equal access to services. A continued commitment to equal service for autistic people regardless of economic status. As the new government identified, there is no reason why a wealthy family who can afford a private assessment of “extreme need” should receive money while a low-income family lacks any access to assessment and services. We do not support the idea of “high-low” functioning labels. As the DSM now notes, autism is a spectrum, with a dynamic range of service needs and capacities much more diffuse than “high” versus “low”.
- Choice in services for families. Make a range of services available for families. The former government’s plan created a monopoly, where providers ended up creating “problems” and “solutions” in order to keep growing and prices ran out of control due to a lack of competition. Everybody lost (except the ABA industry). As the new government knows through its consultations, families want services other than ABA.
- Education for First Responders. There are already a number of first responder education programs in other jurisdictions that could be modified to our province to reduce violent incidents and keep people safe. This is an important issue affecting autistics and the entire IDD community that could be addressed through a program without much associated cost.
- Facts, not rhetoric. The former government’s “Pay now or pay later” approach was a rhetorical tool, attaching fear to a massive expenditure to scare funders into signing. It was not based on real data. It was also hurtful to the “pay laters”… the thousands of adult autistics in Ontario who were shamefully assigned the label of system-burden, rather than persons with thoughts, feelings, ideas and something to offer. We are hopeful that the new government will work from a place of facts, not rhetoric.
So there are some of our thoughts and ideas about the future of autism funding in Ontario! There is a lot more to discuss. Policy must be crafted with consultations with a broad base of autistics in Ontario. Our population need to be front and centre in consulting on the policies that impact our lives. We went through the system as children and have much insight into that as well.
The end of the OAP and changes to the funding/services system in our province signals not just an ending, but a beginning. We are hopeful to have a say this time, as new policies are developed.