In just over a month, Kim Parker’s severely autistic son will be cut off from the programming that’s been teaching him essential skills.
The change is part of the province’s autism programming reform announced recently.
This week, parents of children with autism met with Timmins MPP Gilles Bisson to talk about how detrimental the changes will be.
“This announcement by the Ford government, quite frankly, leaves parents with nothing. The services that are currently being offered by agencies in our community will be terminated and these parents will be on their own to go find services privately. What’s worse is the amount of money that they’re going to get to go find those services is completely decreased,” said Bisson.
As of April 1, Parker, who has two severely autistic boys, has been told the intensive behavioural intervention (IBI) services they’ve been accessing for three years are being removed.
“It’s horrifying to think about because this program teaches my child basic, essential life skills; eating, getting dressed, bathing, brushing their teeth. Little things that everybody can do easily, these children cannot, and this is all coming to a halt,” she said.
Since starting the services, she said they’ve gone from being non-verbal and eating baby food to eating chunks of food and having some words.
“I don’t even know where to go from here, this is like a shock to many of us parents and that’s why we’re here speaking out, asking please, don’t do this. This is not OK for any child that just wants basic, essential human rights to function every day,” she said.
Tyler Stone, who is the father of two severely autistic children, quit his job to take care of his kids while they waited for services to open up.
“Currently we’re just in the planning for danger stage because basically our two children were on the waitlist, the waitlist that they (the government) were excited to clear,” he said.
With IBI costing $60,000 to $80,000 a year per child, he’s worried about the cost of accessing services.
Those costs, he said, are in addition to basic living needs such as rent, mortgage, food, and transportation.
He said because it’s not logistically possible for families to afford, he is considering going to school to provide IBI therapy for his kids.
Melanie Bucar’s 10-year-old son has high-functioning autism and has been on a number of waitlists over the last four years.
“These new cuts that are coming into place will wipe him off all of his waitlists, but unfortunately for us we have reached the cap of what we’re allowed as a household income so we’re going to get no funding for services,” Bucar said.
“Everything is going to be out of pocket now for us and that includes trying to figure out who we can get services from. Before we were on waitlists and we had a sense of where we’re going and who could assist us, but now that the waitlists are finished and are being wiped clean we have very limited amount of people in the city who could assist us.”
She said there needs to be more in the north.
“As a parent, I’m not understanding why because this is a neurological disorder, why this isn’t covered by OHIP. It’s a legitimate diagnosis from a medical practitioner, it should be covered.
Bisson is working with dozens of families, and noted that autism services have been a long-standing issue for parents across Ontario.
“If you don’t push back and you don’t put a human face to this, we’re never gonna know. And all I know is after my time in politics, you’ll be surprised what you can push back sometimes with the proper efforts and I think the parents are key here. They’re the ones everyday who live with their child, who understand the situation, and only they can tell the story,” he said.
He sees this move as an indicator of where the government is going with the healthcare system, which is creating a two-tier system.
“Right now if you get autism services, it’s completely paid by the province. After this is all done, you will only get so much, the rest of it’s going to come out of your pocket,” he said. “If they’re prepared to do that to children, the most vulnerable kids in our society, imagine what they’re going to do to the rest of us.”