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The goal to help children with autism at any cost

Written on May 4th, 2007

How one independent school is working to transform lives

Dawn Lunan says the world was a different place within a month of transferring her daughter from a public school to Kohai Educational Centre, a school for children with disabilities.

Her 10-year-old daughter Paige was never officially diagnosed but has several health problems and autistic tendencies.

Lunan explains that Paige is delayed; she took her first steps when she was four. Paige had multiple surgeries and has problems with her language and social skills. After placing her in a public school, Lunan decided to change to Kohai.

“After the first week (at Kohai), I picked her up and she cried in the back seat and said, ‘I love that school,’” says Lunan.

The downtown Toronto school welcomes children who have learning disabilities. Kohai is a member of the Ontario Federation of Independent Schools, which represents different types of independent schools in the province.

Barbara Brown, principal at Kohai, says that close to half of the students are diagnosed with autism.

“The spectrum has broadened a lot over the years, and we have more people who come with those sort of characteristics and difficulties,” she says.

Students at Kohai pay annual tuition between $22,000 and $37,000. For parents like Lunan, the tuition price impacts the entire family.

“If I think about it too much, it infuriates me,” says Lunan. “My feeling is pay now, or pay later, and society is going to pay later if we don’t pay now.”

Lunan changed from full-time to part-time work to help with her daughter’s medical appointments and daily needs. She is a financial adviser, and says the costs are huge.

“We have used up so many resources to make this happen,” Lunan says. She says she laughs at the idea of retirement and pensions. She has taken out blocks of her RRSP to get occupational therapists for Paige.

Parents who choose to enrol their children in independent schools like Kohai usually only receive funds through personal subsidies.

In February, the provincial government announced its plan for more special education reforms for students with autism.

The changes follow a report from the Autism Spectrum Disorders Reference Group, which was formed by the Ministry of Children and Youth Services and the Ministry of Education. Parents, researchers, experts and educators were included in the group.

The reforms include more resources and direction for school staff on effective teaching methods for students with autism, but they will not benefit anyone outside the public school system.

While Brown says the increase in funding from the government is a good sign, it would be better if it were applied differently.

Parents pay taxes towards education, and Brown says it would be best if their tax dollars were applied to be child-specific.

“That would be ideal,” she says. “It’s such a struggle trying to persuade the government that’s the case.”

Lunan agrees there should be a better system in place. She says she pays taxes for Paige to be in the public schools and would like to at least have those dollars.

Paige is eligible for Special Services at Home (SSAH), a government program to help purchase supports and services for a family member with a disability. While Lunan appreciates these funds, she says it is the only thing for which she qualifies.

John Vanasselt, the Ontario Alliance of Christian Schools (OACS) director of communications, agrees supports for children with special needs should support the child and not the system.

The OACS represents 79 independent schools and advocates for school choice.

“The dilemma is that they (the provincial government) seem to be supporting systems rather than students,” said Vanasselt in a previous interview.

Research supports treatment for children with autism that gives the child a task to perform. These autism treatments are called Applied Behaviour Analysis (ABA) or Intensive Behavioural Intervention (IBI). The best results are when the child starts young, and receives one-on-one work for 20 to 40 hours a week.

There are around 40 students at any time at Kohai, aged from four years old to adulthood. “We’re a pretty small centre, but we have a wide range of needs that we meet,” explains Brown.

“We never send a child home, or phone parents to say there’s a major problem,” says Brown. Parents will instead be informed as to what is going on, but the child will not be excluded or sent home for anti-social or aggressive behaviour.

“We’re in a position where we can adapt the curriculum to match what the child needs to learn,” she says.

Lunan says when Paige was in public school, she was told to make sure she wore Velcro shoes. But within months at Kohai, Paige learned how to tie her own shoes and excelled in other skills.

Brown explains that as they work with students, the entire family is transformed. “It’s more than the student you’re servicing, you’re working in the whole community,” she says. “So it’s rewarding work.”

The change Lunan saw in Paige’s first week at Kohai continued. She says Paige became more depressed while at the public school and her obsessive tendencies were heightened.

But when at Kohai, Paige seemed “more together,” with a smile on her face at the end of the day.