Mother calls Ontario autism program rollout ‘unspeakably cruel,’ families react to consultations

Karen Bojti watches her son Charlie as he works on a math problem with his educator at his side at Under the Umbrella Tree Educational Services in North York.

“He has a lot of sensitivities, so we’re working on sensitivities to noises that are really tough, so the loud speaker, announcements, assemblies are tough for him,” explained Bojti.

Charlie has autism and attends a full-time therapy program.

With the Ontario government overhauling its autism plan, Charlie should be starting public school in the Fall, but his family is making sacrifices to keep him out.

“We will borrow the money to keep him in this program. We will likely have to sell our home, we will likely have to move in with my mom and make do,” said Bojti, who quit her full-time job four years ago to be able to bring her son to therapy.

“It would be like asking my son to swim in the ocean having never put on a bathing suit, having never tread water,” she said about the prospect of ending treatment and sending Charlie to school.

When the Ford government announced changes to the province’s autism program in February to clear a therapy wait list, many parents were outraged, but Bojti said she was not surprised.

“Not my first rodeo.”

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She first spoke out in 2016, when the previous Liberal government announced that kids over age 5, like Charlie, would be cut off from funding for intensive therapy.

The government ultimately rolled out a program without age cutoffs and a funding option to allow families to either receive funding to pay for private therapy or use government-funded services.

“Because I was involved in the first fight I was very aware of how much discussion went into the revamping. I was keenly aware of how traumatizing and cruel it was to thrust a quick decision onto families without notice, without proper consultation.”

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“To throw an anchor out and just toss kids away without a thought is unspeakably cruel,” she added.

The government announced on Tuesday, the day after the new changes to the autism program came into effect in the province and on World Autism Awareness Day, it will now consult parents of children with autism as of May 1.

“We have been given a great deal more flexibility to enhance this program, up to doubling the program, and right now we are going out and we are listening to people,” said Lisa MacLeod, minister of children, community and social services.

“We heard a kinder tone as opposed to like it or love it, take it or leave it, this is what’s happening,” said Bojti, adding, “We wish they had done this months ago.”

But Lolly Herman, director and founder of Under the Umbrella Tree Educational Services said, “We are no further ahead.”

She said she has many questions about the new program.

“We need to know everything, we need to know what funding can actually be used for, when families off the wait list will start receiving funds, how families are going to start receiving funds,” she said, adding “What I think everyone wanted to hear was that funding won’t be based on age, because what we really need is funding based on needs.”

Herman has been working in the field of Applied Behaviour Analysis (ABA) for more than twenty years. She is also a teacher, and a mother of three.

Herman recalled some difficult conversations with families of children with autism in her office over the last few weeks.

“Parents are feeling helpless, parents are depressed, parents are spinning, some families have told me that they feel worse today than they did when they received their child’s initial diagnosis.”

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Herman said she is encouraged by a “more positive open tone” by MacLeod and her willingness “to meet with families and professionals to talk about what the new OAP should look like.”

She was also relieved to see an “inter-ministerial approach” to servicing children on the autism spectrum.

But, Herman added, “the devil is in the details” and she said no new information was revealed.

WATCH: Ontario Autism Program changes pose challenges to families and agencies (March 20)

1:58 Ontario Autism Program changes pose challenges to families and agencies

As well, she noted families “don’t have a lot of hope that our government is going to get this right.”

Bottom line, Lolly Herman fears time is passing and without information from the province, she said she feels unable to support families.

“We are really in quick sand. We have six months. Six months to a child with complex needs is a moment in time.”

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As Charlie finished his math problem, he headed off for lunch, chatting with his educator about an upcoming field trip. Meantime, his mother reflected on what it has been like helping him to access the services he needs to thrive.

It is a process that requires time and the proper treatments, she explained.

“When you’re parenting somebody who is autistic, you have to get rid of expectations that you didn’t realize you had and then you have to rebuild what your kid is capable of doing and set them up to win,” said Bojti.

“If we just throw the kids into the mainstream without providing that for them we are throwing away a generation of children and that is tragic.”