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From autism to ADHD, parents are spending thousands on specialized programs to help their kids

Afshan Tafler with her son, Aydan.

Janis Lempera

Afshan Tafler has left no stone unturned in a bid to get help for her son, who has pervasive developmental disorder and who also shows signs of giftedness. The Toronto-based whole-life coach enrolled him in a private school with smaller class sizes and an on-site occupational therapist. She also pays an additional $10,000 a year – above the school’s $23,000 tuition – for an even smaller, personalized program within the school that tailors the curriculum to his learning style.

Then there are the specialized gymnastics lessons which cost $75 a week, the tutoring ($150 for two one-hour weekly sessions) and a $75 session a week with a psychologist who specializes in special-needs children. In the past, she has paid for physical therapy, play therapy, yoga and music programs, and speech therapy.

She’s now enrolled him in a neurofeedback program, which involves tracking brain activity thorough sensors to try to identify neurological weaknesses and use visual cues to help the brain function better.

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“I’m looking at the symptoms and trying to bridge the gap with therapies and development skills where they are lacking,” Ms. Tafler says. “But the expenses add up.”

Many Canadian parents feel the public- and private-school systems simply can’t support their kids with special needs and are seeking out more specialized programs to help their children. But many programs aren’t covered under provincial or private-benefits plans, leaving parents out-of-pocket for thousands of dollars.

Canadian parents paid an average of $1,120 to enroll their children in extracurricular, community and sports activities during the last school year, according to a 2017 Ipsos poll. These figures don’t specifically factor in special-needs spending, which isn’t tracked in Canada. However, with one-on-one counselling and services being more expensive, experts say these figures are often two to three times higher for children with special needs.

That’s certainly the case for Monica Juchno, who has a daughter that’s gifted and has Aspergers, a high-functioning form of autism. Ms. Juchno, who lives in Toronto, has in the past enrolled her daughter in socialization courses at $400 a session, as well as piano lessons and gymnastics. She also recently signed her up for an elite math program aimed at advanced students that costs $2,300 a year.

“The math at school was very easy and she was ready for more challenging material,” Ms. Juchno says. “The program covers math the school doesn’t give them. But it’s sad that we have to go somewhere else to get it.”

In addition to being underchallenged, many kids with ADHD (attention deficit hyperactivity disorder) or learning disabilities simply get lost in large classrooms, says Aviva Golberg, Toronto-based director of Works of Wonder, an in-home program that uses applied behaviour analysis (ABA) to help kids with autism, ADHD, or developmental disorders. Many languish on long waiting lists for school-led psychological and educational evaluations and other programs.

“For kids who are gifted or have ADHD, they are struggling in the classroom,” she says, even in cases where the school board has identified a problem through a psychoeducational assessment and set up an individualized learning plan. “For a teacher who has 33 kids, there’s only one person at the front of the class trying to help all those kids,” she says. “And [the school boards] keep cutting back on funding for special needs.”

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Finding ways to save

With funding dropping, parents step in. It’s why Ron Malis, a Toronto-based financial adviser, is all for using as many provincially-funded programs as possible. Seventy per cent of Mr. Malis’s clients are parents of kids with disabilities. “They are spending a significant amount of money on therapy, private schools and specialized child care,” he says, adding that programs such as ABA therapy can cost $5,000 a month.

But Mr. Malis feels that many are unaware of the support services available provincially. “You have to understand what is available in terms of support,” he says. In Ontario, for example, there is the Ontario Autism Program, which has provided funding for certain therapies.

Although she paid for many programs out of pocket, Ms. Juchno has also taken advantage of the various provincially funded programs. She has employed the services of a speech pathologist paid for by OHIP. She also applied for a disability tax credit, which she receives annually.

Kids with mental and physical disabilities can qualify for the credit, which requires a physician submitting an application on a patient’s behalf. Mr. Malis suggests having a frank conversation with the child’s physician to ensure the impairment is well-articulated in the application. “It’s not only if you have somebody in a wheelchair,” Mr. Malis says. “Kids with autism and ADHD can also qualify if their impairment is significant,” he says.

Ontario is not the only province with subsidies for special-needs kids. In British Columbia, lower-income parents of a child with special needs (under $55,000 in annual family income) can apply for an additional $150 a month toward the cost of child care under the province’s child-care subsidy. In Alberta, the Family Support for Children with Disabilities Program provides services to help families promote their child’s healthy development and participation in activities at home and in the community.

Mr. Malis says a continuing review of the suitability of the specialized programs is also important because the quality of programs varies dramatically. “I sometimes wonder if parents are throwing money at programs where they are getting diminishing returns,” he says.

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And the review should include some introspection. “Guilt is a big driver of this,” Mr. Malis says. “Are you sending your child to programs as a substitute for your involvement?” If yes, then scaling back on some programs may save money – and allow parents to step up.

But for Ms. Tafler, who hasn’t explored disability tax credits, the payoff from the many specialized programs she has in place for her son is a calmer, happier child who is learning on his own terms. “They’re very special kids,” she says of kids with special needs. “If you can downgrade the anxiety, help that child feel safe, then the child’s brain opens up and wants to learn.”

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