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, who has epilepsy. He 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 waitlist 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 waitlist 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 per cent of the therapy,” said Maracle. “Now, they’re just giving breadcrumbs. 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,” said Dunlop in the release. “We are doubling funding to diagnostic hubs over the next two years so that families can get a diagnosis sooner.”
In addition, the Progressive Conservatives’ plan will introduce an independent agency with the aim of assisting families with their funding management and planning.
The plan has received mixed reactions from the public, and even one PC staffer who is a father of a child with autism, resigned earlier this month over his frustration with the changes.
Parents of children with autism in Bradford West Gwillimbury are also concerned about the overhaul of the autism program.
Bradford resident Julie Ann Lingan is a mother of twins, a boy and a girl. Her son Marcus was diagnosed with autism 15 months ago and has been on the waitlist since.
He is receiving Intensive Behavioral Intervention (IBI) therapy for 10 hours a week in both occupational and speech therapy privately.
She said she and her husband are working very hard to provide the needs for their son.
“This diagnosis has affected our whole family in different ways. I lost the time for my husband, my daughter, and myself. My husband’s mindset was all about providing for the family in anticipation for what is to come. With this new OAP (Ontario Autism Program), it makes me extremely worried what the future brings to our family,” she explained.
Najia Naqvi, a Bradford resident who also has a son with autism, is very upset about the new program plan.
Her three year old son Jon was diagnosed with autism at 22 months of age and has been on a waiting list to receive government-funded services for the past two years. He is currently receiving therapy privately, but Naqvi can only afford three hours of the 20 to 25 hours he needs.
“We are middle-class working parents and cannot afford such an expensive therapy without government funding. PC government has left two options for us: either we give up our hopes and live with whatever we get from the government, or move out to another province,” she said.
Under the government’s proposed reforms, the wait list for funding will be cleared in 18 months.
York-Simcoe MPP Caroline Mulroney told BradfordToday the Ontario government is committed to providing “critical supports and services” to families, including the 23,000 “left to languish on waitlists.”
“Families should not need to wait years for help. Our government is addressing these problems with a reform that that provides all families with resources so they can access the services they need most and when they need them,” she said in a statement.
“As a mother, I empathize with every family in Ontario whose lives are affected by Autism Spectrum Disorder. I have heard and appreciate concerns in our communities, and I will continue to meet and engage with families in York-Simcoe on the challenges they face on a day-to-day basis.”
But for Naqvi, the waitlist is not what she is most concerned about.
“I don’t think the elimination of the waitlist will help the parents in any case. Every child on spectrum is different from each other and so are their needs,” she explained. “Most kids on the autism spectrum at least need minimum 20 hours of therapy (a week) and the more severe they are on spectrum, the more hours they need.
“In our case, we have been waiting for our son’s therapy for the last two years with the hope that once therapy will start, he will be fully taken care of by the government. But after two years of waiting we are devastated to say that he will not get enough therapy hours he deserves.”
Jon will be starting kindergarten in September, and Naqvi said she is worried he will not get the attention he needs in the classroom.
In a statement, the Ministry of Children, Community and Social Services said “autism service providers are encouraged to continue to collaborate with educators to support children to build the skills they need to be ready for school, to transition to school and participate fully in school.”
School boards must develop an Individual Education Plan for students identified as “an exceptional pupil,” and they can do the same for special education students who have not been identified as exceptional, the statement read.
“The ministry will continue to work in collaboration with the Ministry of Education to provide transition supports to children and youth with autism through the Connections for Students program.”
Back in Orillia, Maracle she knew her son Ethan had signs of autism from a young age.
“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.”
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,” she said.
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 said they had some success putting Ethan in daycare 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. It costs $100,000 per year for 30 to 40 hours per week of time.
“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 waitlist for,” said Maracle. “We’re not sure what’s going on now. We’re kind of in a state of flux.”
Maracle said the last phone call she had with the Ontario Autism Program was to find out where Ethan is on the waitlist.
“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 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 says 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.”
For more information on Autism Ontario, click here.
The third annual Autism Awareness flag raising in Bradford West Gwillimbury will also take place March 31 from 1-2 p.m. at the BWG Courthouse.
With files from Jessica Owen
