The provincial government has begun offering more details about the changes to the Ontario Autism Program coming April 1, but some parents says they’re still in the dark about what it will mean for their families.
This week, the province released the sliding-scale income test that will apply to families who receive funding, and it also offered partial information about what the funding will and won’t cover.
Meanwhile, Education Minister Lisa Thompson promised there will be additional support for autistic students in the school system, but has yet to offer details.
Laura Kirby-McIntosh, president of the Ontario Autism Coalition, said the confusion over the changes is throwing families into “utter chaos.”
“I’m deeply angry at the anxiety and stress that she’s causing for families with autism. The uncertainty, the sense of betrayal and the total destruction of trust — it’s keeping people up at night,” she told QP Briefing.
Kirby-McIntosh said she’s personally struggling to understand the government’s decision-making so far.
“I believe government is fundamentally about choices, and governments show through their actions and show through the programs that they create and the money they spend what they value and what they think is important. I don’t know what the Hell we ever did to this government to deserve the treatment that we are getting,” she said.
The overall program budget — $321 million a year going forward, according to Social Service Minister Lisa MacLeod — is more than she’ll see in her lifetime, but it’s a drop in the bucket in the context of $160 billion in government spending, she said. “I don’t know why they think they have to do this to our community, they’re not going to balance the budget on this.”
The decision to double-down on the program overhaul, despite the opposition to the change, is especially surprising seeing as some of the same MPPs had supported the autism community when it protested the Liberal government three years ago, she said.
“There are people who sit up there every day in that chamber who stood with us out on that lawn, and were all too happy to use our kids as photo ops,” she said, referring to protests the Ontario Autism Coalition held against the Liberal government’s first attempt to revamp the autism program, which were attended by then-opposition MPPs who are now part of the government. “That they’re sitting, looking at us in the face, and doing this now — it’s just infuriating.”
The income scale
On Tuesday, the Progressive Conservative government released a chart outlining the maximum funding that families will be eligible for based on their income and their child’s age, which the government refers to as the “childhood budget.”
It shows families with incomes of $55,000 or less would be eligible for 100 per cent of the maximum amount of funding, which would be $20,000 per year for children up to 5 years of age, and $5,000 for children aged 6 and older, to a maximum of $140,000.
A family earning between $82,000 and $85,000, for example, would be able to receive 85 per cent of the maximum childhood budget their child would be eligible for depending on the child’s age — $17,000 until age 6, and $4,250 thereafter.
Heather Rose, an Ottawa mom of two children, one of whom is severely autistic, tweeted about her disappointment after reviewing the income chart and calculating that her daughter Molly Walsh would be eligible to receive between $2,500 and $3,000 per year.
While she had come to expect an amount of funding around that figure, Rose said she is “just in shock that this is actually happening.”
$3000 for my non verbal daughter with severe autism.
I can't even breathe right now#onpoli #autismdoesntendatford https://t.co/GiTIQg5bOA— Heather (@heather_rose) February 26, 2019
“That was more of what I was feeling in the moment, it’s just a shock to the system that treatment for our child’s condition is contingent upon our salary,” Rose said. “It just doesn’t seem real to me that this can be the way it is in Ontario in Canada.”
She said the money they would receive is “not going to go very far when your child is in a program that costs closer to $100,000 a year.”
Mike Moffatt, an assistant professor with Western University’s Ivey Business School, listed in a blog post why he thinks the income testing is “awful.”
Moffatt has two children with autism — a 3-year-old son and a 7-year-old daughter. His son has been on the wait-list for a year-and-a-half, and Moffatt has been actively posting on social media about the changes to the program announced by the government.
“The starting point is ridiculously low. Imagine being a two-earner family with 3 kids, living in downtown Toronto, earning $56,000, and being told you’re ‘too rich’ to receive full funding for your child with autism,” Moffatt wrote as one reason.
Another problem he argued is that “the maximum amount of money under any scenario can never pay for intensive therapy, in part because the formula doesn’t take into account a child’s need.”
What the childhood budget doesn’t cover
Many parents have been vocal about how the funding isn’t enough to cover the cost of behavioural therapy — Applied Behaviour Analysis (ABA) or Intensive Behavioural Intervention (IBI).
In response, Social Services Minister Lisa MacLeod has stressed that the money can go to other needs, including family and caregiver training and respite services, technology aids and travel — but the full explanation of what is and isn’t covered won’t be available until sometime next month, even as the program launches April 1, according to the government.
However, the ministry confirmed to QP Briefing this week that the childhood budgets can’t be used for speech language therapy and occupational therapy.
According to Kirby-McIntosh, speech and occupational therapy for autistic children hasn’t traditionally been paid for by the province, except for a brief period. When the former Liberal government was revamping the program — after it removed kids older than 5 from the wait-list, it faced an intense backlash and then grandfathered them back in, offering families payments of $8,000 and $10,000 that could be used to pay for services, including speech and occupational therapy.
But, parents of children with autism outside of that specific cohort generally have to pay out of pocket, said Kirby-McIntosh. “Nothing under OHIP covers this and no private insurance company in Canada — although many in America do.”
While speech and occupational therapy can be very important to kids with autism, Kirby-McIntosh said she doesn’t think the solution is funding it through the OAP.
“If the government were to allow it to be paid for through OAP money, that would create an inequality between children with autism and children with other disabilities,” she said. “Why should my child be able to access speech therapy, but a child with a physical disability such as aphasia, can’t?”
What needs to happen, she said, is that occupational, physical and speech therapy should be fully covered by OHIP.
Meanwhile MacLeod has said the funding model allowed parents to have choice in what therapies their children receive, which she has said is particularly important to those who don’t oppose behavioural therapy for their children, as some do.
Kirby-McIntosh said there aren’t really any other therapy option when speech and OT are excluded.
While the Ontario Autism Coalition believes ABA therapy is the “gold standard” in autism treatment, and it’s generally considered evidence-based therapy, but not everyone agrees with that.
Some autistic adults are strongly opposed to it and the advocacy group Autistics for Autistics Ontario is supportive of a move away from autism policy that focuses on ABA therapy, said Anne Borden, a co-founder of Autistics for Autistics Ontario, a group MacLeod has cited in Question Period.
“We don’t think ABA is the solution,” said Borden. “We have a lot of members who are relatively young and recently have been through the system and didn’t feel like ABA was appropriate, some of them were really hurt by ABA.”
ABA isn’t an inclusive and affirmative approach toward autism and it’s marketed with a message of fear to parents that their children won’t learn to function unless they get full-time therapy, she said.
The therapeutic approach, which involves repetition, rewards and consequences, isn’t a good way of treating people and many people find it hurtful rather than helpful, Borden said.
Aside from behavioural therapy, adding occupational therapy and speech therapy are helpful for many autistic people, Borden said. Technological speaking aids for nonspeaking autistic people are especially important, she said, and the government has said technology aids will be covered by the funding under the new program.
Overall, Borden said she’s hopeful the government will continue to evolve its autism policies, particularly to take Ontarians’ whole lives into account, including adulthood, and to consult with people with autism as it does so.
School support
Thompson said Wednesday the government has been working on a pilot project focused on “improving school-based supports for students with (autism),” but hasn’t offered any details on what that will entail.
The education minister’s comments come as both parents and school board officials have expressed concerns that schools aren’t prepared to handle an influx of autistic students who need support, and will re-enter the system when their therapy provided under the current Ontario Autism Program ends this spring.
The program is set to change on April 1, and Thompson said that there would be more details on supports “in the weeks to come.”
She later told reporters that there would be some sort of additional supports for schools, but wouldn’t elaborate on what those might entail.
“We have an independent evaluator… taking a look at the data that was generated by our pilot project, and we’re going to be taking very seriously his recommendations with regards to what worked and what didn’t in the pilot project,” she said. “We’re working with our school boards, and this is a very sensitive situation, and we’re going to make sure that we get it right for the students.”
One of the parents expressing concern about a lack of support in schools is Stephanie Ridley, mother to 7-year-old Ewan, who is severely autistic. She said at Queen’s Park last week that she’s “terrified that the lack of therapy that will be available to him will put him into a regression, back to biting, scratching and making our family’s life very difficult on a daily basis,” she said, adding that in a few weeks his therapy service contract will end.
“It will be burdened on the school system that are ill-equipped to deal with Ewan’s autism needs,” she said.
Rose shared the concern.
“I can’t see how the education system can adapt to the flood of children with such a wide variety of needs and get them in a classroom,” she said.
Rose said that after spending a few years in intensive therapy, her daughter tried school last year, but that it was a “failed experiment.”
Although her daughter is non-verbal and couldn’t communicate about her experience at school, Rose thinks the issues related to the classroom being too loud, her daughter not knowing what was going on and a lack of supports.
It got to a point where it seemed as though her daughter would accumulate her stress from the day and then unleash her rage at home – throwing things down the stairs or breaking things.
Soon the phone calls started, with the school asking Rose and her husband to leave work in the middle of the day to go and pick up Molly.
“It was not a good situation,” Rose said, adding that they finally got her back into therapy in which she’s been making “incredible gains.”
However, Rose is worried that after their service contract ends in April, either her or her husband might need to leave their job to be at home with their daughter.
Rose said there is one school board in Ottawa that has classes for autistic children, and that she has sent an application in for her daughter for September. But even with that, there are a limited number of spots, Rose said.
And earlier this week, Kirby-McIntosh testified at a Queen’s Park committee and said she’s been kept up at night worrying that, with the government’s changes to the autism program, students with autism will re-enter the school system before their ready, and won’t have adequate support, and some will end up hurt.
She offered examples of what she fears will happen in Ontario schools this spring: A child will into a street after experiencing sensory overload at school, a child will be improperly restrained by someone with inadequate training, and education worker will be hurt.
“The physical and emotional trauma to the child will last a lifetime,” she said. “Somewhere in Ontario this spring, students without disabilities will be traumatized as they watch this unfold. They won’t understand what they’re seeing, nor will they under the system at play that will cause these events to take place.”
“I know in my heart that it will happen, and damn it, it doesn’t have to,” Kirby-McIntosh later told QP Briefing
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