When fighting back against the government failed, Paul Ceretti decided to take matters into his own hands.
The 48-year-old Hamilton single father of five has twin daughters who are autistic. He is the founder of the Autistic Assistance Program, which provides behaviour therapy and education to children with autism whose government programming has ended.
Both of Ceretti’s twin daughters require special education called Applied Behaviour Analysis, which is specifically designed for children with autism to help them learn everything from how to tie their shoes to how to ask for something they need.
The province provides funding for eligible children to receive this education through the Direct Funding Option program, but children are assessed every six months, Ceretti explained.
"They created this system of benchmarks, which is the criteria that says whether your kid can stay in the program or not," he said.
When the girls were six years old and receiving in-home programming through Hamilton-based Behaviour Institute, the girls were assessed. Mackenzie was allowed to continue receiving funding for treatment. Delanie was cut off. The assessment officer had decided she hadn’t met the necessary benchmarks to prove she was benefitting from the costly program.
Suddenly, only one therapist was visiting the house.
"I remember the first day that only one therapist came. Delanie actually took me by the hand and pulled me up to her therapy room. She was confused," Ceretti said.
"I said, ‘no, no work today,’ and she started to cry. It broke my heart."
He spent the next three years fighting against the decision through a judicial review and two appeals. He was turned down every time.
'I couldn’t imagine my girls going into an institution and being cared for by others, not being able to take care of themselves. I can’t do that.' —Paul Ceretti
Finally, in 2010, he decided it was up to him to get his daughter the treatment she needed.
He contacted McMaster University and asked to recruit psychology students to volunteer to receive training and work with the girls. The response was overwhelming.
"The first day, 34 volunteers showed up. I was hoping for three or four," Ceretti said. "Within two weeks, Delanie was back in full-time sessions at home therapy."
The Autism Assistance Program was born.
Autism is a spectral disorder, which means each child has unique needs and abilities.
Applied behaviour analysis customizes a program to each child to help them reach their full potential and become functioning members of society.
Ceretti’s daughter Delanie was previously non-verbal and extremely aggressive. Through ABA therapy, she can now speak, although it is limited, and her aggression has dropped dramatically.
Ceretti believes a lot of her lashing out was because she was frustrated at not being able to communicate her needs. Now, she can do so effectively, both verbally and through writing.
But because the therapy is so intensive, it’s also expensive. It costs approximately $60,000 per child per year to receive the treatment.
The Autism Assistance Program, now a registered non-profit organization, provides an alternative option at about $9,000 per child per year and the organization is hoping to get that number down to $7,000. Because the therapists are volunteer students, the only cost comes from the specialized training they receive through the Behaviour Institute.
Jessika Lenchyshyn, 23, was one of the first students to volunteer with Ceretti. She now works as co-director of the program while studying for a Master’s in neuroscience at McMaster University. Lenchyshyn said the program is valuable to students as well, giving them hands-on experience
"They get the ability to apply their textbook knowledge to real-world scenarios — and not only that, but also to see that your textbook knowledge always reflects what the child is," she said.
But due to a lack of funding, the program only currently works with four children, including Ceretti’s own.
"We have kids who need funding. A lot of families can’t afford this without sponsorship," Lenchyshyn said.
"We have tons of volunteers ready to go and we have tons of families ready to go and we just have one thing, one little black box between them: it’s money."
Starting June 1, the Autism Assistance Program will be launching a fundraising campaign aimed at businesses and members of the community. They’ll build a grid of puzzle pieces — the official autism symbol — featuring advertisements for sponsors, which they’ll bring around to events throughout the summer.
They aim to raise enough money for three more children to enroll in the program for one year. Two local groups, City Kidz and Corner Comforts, have already dedicated their support.
Ceretti has seen the program work first-hand with his own daughters and he wants other families to have the same opportunities.
"The quality of life is so improved," Ceretti said.
"I couldn’t imagine my girls going into an institution and being cared for by others, not being able to take care of themselves. I can’t do that."