“I’d like to see a focus on inclusion”: Parents respond to the new plans for autism policy in Ontario

There are tens of thousands of families across Ontario who never accessed the former Liberal government’s autism funding (OAP) even though they would have benefited greatly from financial assistance. There are three big reasons for this:

  1. Lack of funding for diagnostic services in the old plan (OAP);
  2. Huge waitlists for services under the OAP; and
  3. Only one type of service–an outmoded one—was available under the OAP.

Now we have a new government that has promised to start fixing these barriers to service. The Progressive Conservatives’ new plan:

  1. Doubles the number of diagnostic services available;
  2. Cuts the waitlist and serves an additional 23,000 families, focusing on families earning less than $55,000, who were underserved by the former plan;
  3. Allows families a choice of service providers, not just ABA.

We wanted to get a sense of how parents are feeling, so we spoke to some of the parents who reached out to us after our statement, as well as those we’ve known for some time.

We have a connection with parents because many of them, when they find out their child is autistic, decide they would like to connect with and learn from autistic people. As one mom wrote: “As a non-autistic parent to a wonderful autistic child, one who the world would consider ‘high needs’, who uses AAC and stims and has boundless energy and the most amazing laugh I am beyond grateful to the autistic advocacy community for teaching me how to be a better parent and advocate for my child.”

We learn so much too, every day, from the parents we interact with. Here is some of what we’ve learned about how they are thinking about the new plan.

Summary
Overall, the parents we spoke to felt optimistic about the proposed policy changes in Ontario.

  • Previously, they paid out of pocket for their children’s’ services and are hopeful for a new level of choice, because the former plan (OAP) only funded ABA.
  • Some were waitlisted for diagnosis under the OAP and are very glad to see the new plan’s increase in diagnostic services.
  • Some have a family income below $55,000 and appreciate the new plan’s sliding scale approach to services.
  • Most prefer direct funding, which is in the new plan.
  • Parents of nonspeaking children are hoping that AAC will be addressed in the new plan –unlike the OAP, which did not address AAC or communication choice.
  • Some have children who are young adults, and would like to see services for young adults (which the OAP did not support).
  • Parents have many questions about what will or won’t be funded under the new plan and concerns that their needs will still be unmet under the new plan.

Positives in the new plan
Parents saw several key positives in the proposed new plan, mainly flexibility, choice and equity.

Deanne, a mom of two autistic children, one non-speaking and one speaking, had this to say: “More funding for diagnosis is great news. Also, giving parents direct funding and flexibility with respect to how it can be used is a terrific development in my opinion.”

Monica, a mom of an autistic teen, appreciates that the new plan offers services to a range of children: “My son was always deemed too ‘high functioning’ to receive funding, but he needed OT. I ended up taking OT classes at U of T Scarborough and doing it [the OT] myself.” Monica got her son into speech-language therapy, social classes and Speech Arts, all of which were helpful but she was not able to receive government support for them under the old plan.

Christine, a mom of an autistic 11 year old said: “Under the OAP, we had to pay for his therapies because they weren’t ABA. Why? These therapies were totally amazing for my son, but the OAP seemed to think there was only one way to learn to brush your teeth. Maybe the new plan will allow families to choose what’s best for them.”

Cathy, a mom of a 23 year old non-speaking FC user says: “Our province needs to fund occupational therapy that meaningfully addresses sensory and motor differences. Why not fund pro-autism approaches? I’m really concerned for the long term well-being of the generation of autistic children whose parents advocated for funded ABA.”

Kelly, a mom of a 6-year-old autistic girl, wrote: “The old plan was designed for ABA providers to make money, period. When I had the opportunity to ask Michael Coteau, former Minister of Children and Youth Services, what consultation had occurred with autistic people in the development of the plan, and why it only funded ABA, his shock at the idea of consulting with autistic people pretty much said all it needed to. I personally support providing funding directly to parents, and hope it can be used for needs other than ABA.”

Mandy, a mom of an autistic high school senior, used a different approach than ABA and also never received funding. She is glad to see that there will be less funding for ABA and hopes there will be more for alternatives. She recalled early in her son’s life when the family tried ABA: “We were told that M was ‘attention-seeking’ when they were crying, climbing on us, and generally melting down. I did not fully believe what we were told but I was brought up being told to do as I was told so I listened to those who are authority figures. We were told to take away all of M’s special toys so that they could be used later as rewards. This backfired on the therapist because M just did nothing and sat on the couch depressed and didn’t play with anything else.  We gave the toys back. It was not fair to take them away like that.

“It always felt wrong to ignore when my son was very troubled but we followed the so-called experts… Now we follow the true experts.”

Saira, who moved here from a different province, noted: “What the province had available [under the OAP] wouldn’t be useful for my daughter. I have paid out of pocket for everything.” She is anxious to see what the new program has to offer.

All parents were eager to share what they had learned from their own reading, from the therapists they chose and through their conversations with autistic people and other families. (We will compile a resource list!) These conversations revealed the true ingenuity of parents who, when faced with a system that had shut them out, found their own way. Each are hopeful that the new policy opens the door for solutions that are flexible and fair. They are also hopeful that a new program can help families of newly-diagnosed children.

“It looks like this program is going to help more poor families,” wrote Christine. “I am well aware of how easy it is to get extras when you can pay someone to advocate, and it’s not fair.” Another mum, Amelia, agreed: “The funding piece is still evolving, I hope in a way it might provide financial assistance for therapy and services for those living on ODSP or those struggling with no income.”

Questions about the new plan
Parents want to see the new plan as it evolves and hope to be consulted. There were several concerns:

  • that the idea of service choice would not truly be realized;
  • That AAC would not be funded;
  • that a new program will not acknowledge the needs of older children; and
  • that the government would backtrack on diagnostic hubs.

“I would like to know the details of the new plan,” wrote Jennifer. “I know they’re offering choice, but what services? Will [the new plan] be posted online?”

Cathy wrote: “There are waitlists for Passport funding and I know there are people with the same needs as my son who have no [Passport] funding. We see the government decided to eliminate the ABA wait list. Will they do the same with the Passport List? Will it affect the services my son receives?

“My son would like to be supported to live on his own and not be dependent on family. I think he will gradually become a bit more independent over time but this process requires very specialized support. What kind of support will there be now through Passport?”

Jeff, who paid out of pocket for a non-ABA service, wrote: “We did RDI [a developmental therapy]. The person trained us in how to do it, so it was affordable and gave us a lot of skills. It was incredibly helpful. Will the government encourage these kind of programs?”

Parents also had questions about how the program will be rolled out, as well as concerns there could be last-minute change. Kelly noted: “I would hope that the promised investments in diagnostic hubs are carried out, as this is a huge issue (we waited well over a year to see a doctor who could provide a diagnosis). Right now the details of their plan are not widely understood.”

Ideas for the new plan
Parents, together with their children, bring a lot of experience to the table in terms of evaluating services and identifying service gaps. Here are just a few of their ideas for autism services in Ontario:

Communication/AAC
All parents agreed that Augmentative and Assistive technologies (AAC) for non-speaking autistics have been under-funded in Ontario and all favoured more exploration by government into a funded AAC program.

As Deanne said: “Providing financial resources to invest in assistive tech and respite instead of ABA is most welcome. It would be a greater focus on the Assistive Devices Program. This would include more funding and incentives for SLPs to focus in AAC as a specialty; hire more SLPs trained in AT assessment and support, cut waitlists; and broaden the criteria for qualifying for assistance and standardize how clinics operate. Your access to AAC should not depend on where you live.”

Christine wrote: “You can teach a kid AAC but you have to do more, so that they’re not isolated. Educate more people to be comfortable with AAC. That’s part of AAC education so that it’s truly accessible.”

Therapies: Flexibility
In addition to AAC, parents identified other programs they would like supported:

  • alternatives to ABA such as RDI and DIR Floortime;
  • OTs and speech therapists that are not ABA providers;
  • counseling services by trained psychotherapists with psychology training instead of ABA certification;
  • Non-ABA Occupational Therapy;
  • Art, music and social programs operating independently of ABA centres.

In general, parents felt their therapy investments were reasonable, that they paid off and that they should be funded. None of the therapies that parents advocated are intensive in terms of hours. “We were told to put him into full-time therapy,” said Christine. “It [the Centre] looked awful, like hamsters on a wheel. We walked away from that.”

Lani wrote: “Our SLP knew we didn’t have a huge budget so she taught us to do a lot of things outside of sessions. Teaching the parents seems more sensible than warehousing the kids all week.”

Monica and her husband did much of her son’s therapy on their own, taking classes and using all the information they could find. She said: “Covering [the cost of] courses, books and materials would have helped us a lot.”

Kelly commented: “We need an end to the idea that any child needs 40+ hours of any therapy per week. We need a medical community that stops telling parents that if their children don’t have extensive hours of early intervention therapy before age 3 you may as well give up on them (This is not an exaggeration – some version of this message is pretty much all that parents get upon receipt of a diagnosis)!”

Inclusion: Community Involvement
Parents supported the idea that the broader community can provide services, rather than just ABA centres. This provides the advantage of including children in the real community, rather than silo’ing them in the artificial environment of the ABA centre.

Parents sought more education for teachers of community programs for kids, such as library programs, community centres and camps. Jeff wrote: “I’d like my son to be able to go to a [City-run] March Break program and know that the teachers will welcome him.”

Christine wrote: “They ignored us at the [province-run early years drop-in] program near our house because our son didn’t speak. It was awful. We had to find another program on the other side of town. This meant we couldn’t join our neighbours at the drop-in.”

School supports, parent input
Parents want to be involved in school decisions but often felt sidelined by defensiveness from the schools. Kelly wrote: “Individualized education plans (IEPs) in schools, speech/language pathology services, and occupational therapy are all things I have encountered barriers to accessing so far. Once your child is in school, they force you onto the local board’s waiting list for any kind of services. I’m not even sure we’re actually on the list. I’ve also seen many people mention that schools seem resistant to formal IEPs. This needs to change!”

Prejudice also made it more difficult for families to navigate the system. As one woman wrote: “For my parents, navigating these terms and accommodations within the system was made harder due to them being immigrants. …My dad in particular was my sister (and mine’s) biggest advocate as he constantly fought to have my sister’s special education team to include her with neurotypical peers, arguing that just because she didn’t seem to communicate ‘normally’ it didn’t mean she wasn’t capable of learning. Unfortunately, his concerns were often brushed off, I suspect because of his heavy accent when speaking English.”

Parents want transparency and flexibility in the classrooms. Jeff said: “Why not let us bring in our own support workers? Right now the [teacher’s] unions don’t allow us to bring in a PSW, even if we pay for it.” Another parent pointed out that parents are not allowed into special education classrooms and, without transparency, abuse goes unchecked. “We need the government to step in. I should be allowed to go into my child’s classroom.”

Making classrooms more inclusive was a key point by all parents. Kelly wrote: “I would like to see an understanding of accommodations that can and should be set up in our school, medical, and other systems. Accommodations for disability generally benefit everyone!” Christine agreed. “This is happening in other places. And most of the accommodations for autistic kids end up being good for all the kids.”

Programs for Young Adults and Adults
Parents also identified prioritizing inclusion in post-secondary education and the world of work. Their children’s futures were very much on their minds. Jeff noted: “We’ve kind of got things covered for now, my concern is no programs for teens and young adults, which he soon will be.”

Kelly also wanted an approach that doesn’t just focus on young children: “On my wish list: A true understanding of the idea that autism doesn’t end at 5, or 18, or 35 – that it is a lifelong way of being, and thus adults require understanding, supports, and accommodations as well as children.”

Cathy discussed the need to educate institutions of higher education about non-speaking autistic students: “He started attending a math course at GBC last month and even a progressive school like that is completely unprepared for a non-speaking student. Our educational institutions don’t know how to be inclusive of non-speaking autistic students.”

Christine wondered about the traditional approach by government to autism services: “I don’t know why autism plans are put with the Ministry of Children and Youth Services. What about autistic adults? Maybe it should go under a new portfolio or under several portfolios.”

Consulting autistic people/Inclusion
Parents we spoke to felt like they learned a lot about relating with their child by talking to autistic people, in real life and through online support groups. As one mom wrote on our page: “I appreciate having the perspective from actual autistic people to help inform my decisions for my son and family.” Cheryl said: “Neurodiversity is always at the forefront for me and tapping into the experiences of those who truly do get being autistic and what it means for them, perhaps their children (if they are parents) and how they navigate their lives.”

Some hoped that the new public discussions around the autism plan will raise awareness about the need to consult autistic people. Kelly wrote: “I think the politicians honestly don’t even know for the most part that autistic self-advocates exist.”

Christine wrote: “Our son has an autistic mentor, she is absolutely wonderful. I’d love to see an investment in mentorship programs. We also like to go to meetup for autistic kids that are just about having fun together, not ‘social skills’ class. Autism Ontario has some sensory-friendly events and he has met friends there.” Cheryl agreed: “These have exposed our family to great open-ended learning and some connection to families like our own.”

Cathy had advice for parents: “As a parent and sister and friend to autistic people, I encourage parents of newly identified children to be good listeners. It’s the best thing you’ll ever do for your child.”

New approaches and autistic acceptance
Many parents want to see a better understanding of autism informing programs and services. They pointed out that what they are reading about autism, versus what they see in real life in our province’s approaches, have not been the same. “I’ve learned a lot from what other people are doing in other places around neurodiversity,” says Christine. “I feel like we’re stuck in the past here.”

Kelly wrote: “I would like to see a common understanding that behaviour is communication, and enough empathy to understand that behaviour we perceive as needing to be ‘managed’ is so often a result of lack of ability to communicate needs and/or real sensory processing difficulties. I would like to see a system with caregiving supports modeled on a social model of disability, and funding models that support a social model of disability.”

Val wrote: “I’ve done a lot of reading about inclusive and positive communication and conflict resolution skills. We use natural and logical consequences rather than punitive methods to instill self-‘discipline’ (literally ‘give life to learning’). I am proud to have made things better for my child so far.” Similarly, Jeff wrote: “Once I learned about autistic acceptance, it improved our relationship. He is happier, we are all happier.”

A respondent whose sister is autistic, wrote: “The more I read on it, the more it becomes clear that what autistic people need more are alternatives like speech therapy, occupational therapy, accommodations, etc. ABA to me, seems more as a solution that only works on the surface and produces ideal results for neurotypicals, but leaves autistic people struggling with lifelong scars.”

Conclusion
The families we spoke with are positive, creative and affirming of neurodiversity. They have a lot to offer for program ideas that bring about full inclusiveness in society.

We too feel that our culture needs to break free of the institutional models of autism services, where children are segregated, and instead involve the community in creating welcoming and inclusive spaces. This doesn’t cost a lot and it benefits everyone. Mainly, it requires a shift in thinking about autism and inclusion. We are hopeful that a new plan, as it evolves over time, will value inclusion and autistic acceptance.

Until now, politicians have been crafting policy reactively. It’s time to be proactive. We hope our policymakers will reach out to parents like the ones we spoke with, to develop a sustainable plan for autistic inclusion in Ontario.

Note: Some names have been changed to protect the privacy of respondents.