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‘They’re giving us bread crumbs,’ parent says of PC autism changes

According to PC government, autism program wait list of 23,000 will be cleared in 18 months, but local parents wonder if services will suffer
2019-02-20 Autism JO-001
Katie Maracle, right, and her son Ethan, 2. Maracle is concerned her son's therapy for his autism may not be covered now that the PC government has announced changes to funding for the Ontario Autism program. Jessica Owen/BarrieToday

ORILLIA — While sitting in her kitchen talking about her son Ethan’s recent autism diagnosis, Katie Maracle’s son flops over in his high chair and has a seizure.

“That was one. Are you OK?” Maracle asks two-year-old Ethan.

Ethan sits up, seemingly unfazed, and continues to play with his toy.

Maracle, who lives in Orillia, is one of many parents on-edge since the Ontario government announced proposed changes to the Ontario Autism Program at the beginning of February.

While the announcement to clear the wait list for autism services, which currently has 23,000 children, seems like it would be good news for parents whose children are in desperate need of services, Maracle is leery that the changes will do any good.

“On one hand, yes, getting rid of the wait list is definitely beneficial. But, prior to this change, parents were willing to wait because there was light at the end of the tunnel, and that light was, (the government) was going to pay for 100% of the therapy,” said Maracle. “Now, they’re just giving bread crumbs.

"Everyone is going to get a little bit of money, but nobody is going to be able to really benefit from it.”

According to a news release from Simcoe North MPP Jill Dunlop, with the proposed changes families may receive a childhood budget until their child turns 18. Supports will be targeted to lower and middle-income families.

The amount of the budget will depend on the length of time a child will be in the program. For example, a child entering the program at two years old would be eligible to receive up to $140,000, while a child entering the program at age seven would receive up to $55,000.

“There are over 2,400 families waiting for a diagnostic assessment and over 23,000 families waiting for behavioural services through the Ontario Autism Program and that demand keeps growing,” Dunlop said in the release.

“Our government is committed to helping families receive critical supports and services faster and not having children and youth wait for years before getting help," she added. "That is why we are doubling funding to diagnostic hubs over the next two years so that families can get a diagnosis sooner.”

Under the government’s proposed reforms, the wait list for funding will be cleared in 18 months.

“They’re promoting it as a fair and equal system, whereas really, it’s the opposite. I feel badly for the children who were in the system and were getting 100 per cent funding, and now they won’t. It’s very sad,” said Maracle.

Ethan was diagnosed with epilepsy at seven months old, and in January received an autism diagnosis.

“He has a dual diagnosis. Like many children with autism, there are usually co-occurring issues,” said Maracle.

“I knew since he was quite small that he had some of the signs of autism. Mainly, eye contact, he doesn’t play like a typical toddler would play. He’s very sensory, so any toy he has in his hand he’ll flap. He’s very social. At first, we thought he couldn’t be (autistic) because he’s very social, and he likes to be touched. He’s very outgoing even though he’s non-verbal,” she said.

“The thing about autism is that, there’s a spectrum, so every child is very different.”

While Ethan doesn’t show aggression, which can be a symptom of autism, he is heavily medicated due to his epilepsy which can make him drowsy and can lead to sleep problems.

“He has good days and bad days. His good days are extra good, and his bad days are very bad,” said Maracle.

Most of the time, Ethan wears a helmet to protect his head due to the frequency of atonic seizures he endures. Maracle estimates Ethan has about 12 seizures a day, but he can have as many as 20 or 30.

Maracle and her husband both work full time. While Maracle says they had some success putting Ethan in day care when he was younger, as he’s gotten older he’s had more difficulties due to teacher/child ratios being different once kids hit toddler age.

“The quality of care was not what we needed for him, especially with his seizures, he needs one-on-one care,” said Maracle.

Now, Ethan sees an occupational therapist, a speech therapist, a pediatrician, a neurologist, an osteopath and his local family doctor.

Maracle estimates that monthly, she and her husband are paying $200 to $300 on therapies. With Ethan’s new autism diagnosis of level 3 autism, which is the highest level of support required, he requires IBI therapy (intensive behavioural therapy). The therapy requires 30 to 40 hours per week of time, at a cost of $100,000 per year.

“We have found an excellent IBI therapist in Barrie. We’ve done the intake with her, now we’re just waiting for funding, which Ethan is on the wait list for,” said Maracle. “We’re not sure what’s going on now. We’re kind of in a state of flux.”

Maracle says the last phone call she had with Autism Ontario was to find out where Ethan is on the wait list.

“They couldn’t even give me a number. It sounded very disorganized right now.”

Erin Nightingale, chapter and programming manager at Autism Ontario’s Simcoe County branch confirms that the branch hasn’t received any additional information to the press releases provided to the general public on the changes that will be made.

“We haven’t been given a lot of information, as most agencies haven’t been,” said Nightingale. “I think the biggest challenge is there’s just not enough funding to support all the families in Ontario dealing with autism.”

According to Nightingale, the real benefits of IBI therapy are seen when that therapy starts prior to a child hitting 48 months of age.

“Right now there’s a real crisis because we’re seeing families receive a diagnosis well past the age of four. They’re waiting over a year to get a diagnosis because it’s not something that’s usually visible at birth,” she said.

“It’s heartbreaking when you hear from families because they don’t know what to do. They don’t have their own funding to pay out of pocket for private services.”

Nightingale said she hopes that any families struggling with an autism diagnosis for their child would reach out for help from her organization.

“I hope that families would reach out to us if they have questions. Unfortunately, we don’t have all the answers right now,” she said. “This is the second big overhaul to the Ontario Autism program. I think people just want consistency. That’s not fair for the families, the service providers... for anyone.”

Maracle agrees with Nightingale that early intervention is the most important element to helping a child with special needs, which is why this issue is so crucial.

“Children, at this age, are like a sponge,” she said. “This is the time to do that intensive therapy. If you wait, it’s harder for them to learn.”

Maracle will be meeting with MPP Dunlop on Friday to address concerns, and she’s hopeful that bringing her concerns and suggestions forward might affect change in some way. One of the suggestions Maracle hopes the government will consider is investing in education so more behavioural therapists can be trained to address the overwhelming need.

“I think they’re looking at this issue from the wrong direction. It’s really a supply-and-demand issue. There’s not enough service providers out there at an affordable rate for families,” said Maracle. “By clearing the wait list, that just makes it worse. There are all these families now off the wait list that will be looking for therapy, and not enough providers to go around. They’re creating a bigger problem.”

Going forward, Maracle and her husband are left with uncertainty. If the government is not able to help pick up the tab for Ethan’s treatment, Maracle says they won’t be able to afford it.

“It’s disheartening. We’re quite fearful of what will happen. With the changes to the autism program, it really limits his treatment,” she said.

For more information on Autism Ontario, click here.


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Jessica Owen

About the Author: Jessica Owen

Jessica Owen brings 15 years of experience to her role as reporter for Village Media, primarily covering Collingwood and education.
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