Reduced funding affecting education for children on autism spectrum
Starting in April, government funding for families with children on the autism spectrum will change. The provincial government has announced a shift to lump-sum payments for therapies, as opposed to the current system of subsidies and waiting lists.
Parents in need say the change is making a bad situation worse.
Two local mothers with autistic children share their experiences and their fears.
Stephanie Baxter’s seven-year-old son Jayden was diagnosed with autism, ADHD, and OCD at the age of two. The family was one of thousands put on a waiting list for IBI — Intensive Behavioural Intervention — one of the only treatments proven to help children with autism learn basic skills like making eye contact, speaking, and eventually reading and writing.
The family waited for years with no therapy and no indication of when it might be available, and then, around Jayden’s fifth birthday, they got a phone call telling them his name was no longer on the waiting list. Another mother (who prefers to remain anonymous; we’ll call her Mrs. Smith) whose autistic son is in Jayden’s class describes the same scenario, and tells of the social media hashtag “autism doesn’t end at five.”
Both mothers agree the situation was terrible — and the new changes will only make things worse.
Therapy was available briefly for Smith, and the family saw significant and measurable progress with it — but the government-funded resource was cut off on the boy’s fifth birthday.
A minimum of 25 hours per week of therapy is recommended for children on the higher end of the autistic spectrum, and costs $55 per hour. The policy change removed tens of thousands of names from waiting lists and will now provide annual sums to families to pay for supports and resources. But the recommended amount of therapy would cost more than $70,000 per year, and the new policy will limit funding to families to a maximum of $20,000 per year for kids five and under, and $5,000 per year for children from the ages of six to 18.
Concerns about the cost and availability of treatments plague both women, but they’re even more concerned about their sons’ day-to-day life at school.
Both boys have been professionally assessed and deemed to require a full-time, dedicated educational assistant (EA). Sadly, neither has had that experience, and the consequences have been dramatic.
Safety is one issue among many.
When the policy changes take place, children on the autism spectrum will be flung out of therapy and into the school system, and neither part of that equation is prepared for the fallout. “There is a tsunami headed for the school system,” says Ontario Autism Coalition president — and teacher — Laura Kirby-McIntosh, speaking at a recent press conference to denounce the policy changes.
“Somewhere out there there’s a kid that’s going to get off the school property, that’s going to get seriously hurt or worse. Somewhere there’s going to be a kid that’s going to be restrained for too long and is going to be seriously hurt. There’s an education worker who’s going to set off a kid who goes into a massive meltdown and someone’s going to get really hurt,” she says.
There is currently one EA in the boys’ Grade 1 classroom at Crossroads Public School. She is responsible for the three children on the spectrum in the class. And she leaves at lunchtime, to be replaced in the afternoon by a different EA, who is “bouncing back and forth between two classes, responsible for five students, giving them the sensory breaks, movement breaks, and the one-on-one time they need,” says Baxter.
Both boys are “runners:” when they feel overwhelmed, they leave the class. This is one of the reasons they each require their own dedicated EA. One day, Baxter received a call from the school. “The principal called me at work to ask me to come and pick up Jayden,” she says. “She said he was running away and hiding. ‘We couldn’t find him for a while. We need you to come and get him because we can’t watch him,’” she describes the principal as saying. “I pulled into the parking lot and a staff member brought Jayden out — he was smiling and happy. Because he’d had the sensory break, and some one-on-one time with someone in a quiet setting. This is exactly why he needs an EA,” she says. “He needs help and I can’t keep leaving work every week to take my kid out of school.” The frustrated parent continues, “I feel really bad for the teacher, because she’s an expert in the field but can’t provide what she knows is necessary.”
On that same day, Smith’s son had also run from the classroom. He was found several minutes later at the external gates of the school, spotted by a teacher looking out a window. “He was going home to get his toy truck,” says the boy’s alarmed mother. “He has this internal GPS in his head and would have just gone all the way home.” Home is several blocks of busy roads away from the school.
Schools everywhere are already struggling with this issue. Last year, a survey of more than 2,300 EAs found that fewer than eight per cent were working with only one student, while 60 per cent surveyed were working with five or more. “This is not just going to affect families with autistic children — it will affect all families with children in school,” says Smith.
With an influx of children with autism in classrooms and no sign of EAs being added to match it, there will be exponentially more disruption. “The perception is that it’s a private, personal issue, but it will affect all of us,” says Smith. “You kind of hit a wall where you don’t know what to do.”
Baxter, a working mother of three with a very busy husband, has a suggestion. “One solution would be travelling therapists going around the region to schools,” she says. “They could work with kids together in a group setting, learning proper behaviour, but not being forced to do it with children who are quote unquote normal.”
Baxter sums it up simply: “This is my child and he’s going to cause us problems and headaches, but he’s my child and I will always love him.”