Parents struggling with CHEO's new autism fees

Representatives from eastern Ontario's children's hospital are trying to explain how the revamped provincial autism system will affect and cost parents, but they don't know the full picture yet.

CHEO held simultaneous information sessions at the east and west offices of its autism program to explainthe new fee structure for its spring and summer programs.

Julie Caissie, the director of the autism program at the hospital, said about 70 people registered for Thursday's sessions and many are stressed about the changes.

"The first reason being they're not sure they understand the process The second piece is not knowing if they'll have enough funds to cover a clinical therapy," Caissiesaid.

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Caissie said early intervention for young children could be very costly, requiring 25 to 30 hours a week of therapy.

The government is providing $20,000 per year for children under age six and $5,000 a year for children six to 18.

Parents hope for answers about autism services

5 years ago

Duration 1:05

Parents Patricia Lukogi and Michel Papineau spoke to CBC News about what the provincial changes might mean for their respective families.

Patricia Lukogi said her seven-year-old sonEliott Kayembeis non-verbal and needs advanced behavioural therapy.

"The program that I am interested in is almost $4,000," Lukogi said.

"It's very difficult, but with the needs of my son, I have no choice. We're waiting for the funds from the government and we're not sure that we're going to have them soon."

While Michel Papineau'ssaid his family is luckyhis nine-year-old daughter is high-functioning on the autism spectrum, he said the government funding doesn't go very far.

"That's an educational assessment and one 12-week session and the money has run out. It's kind of a hardship," Papineau said.

"It's one of the expenditures that you have to have, and you forego other things."

Both Lukogi and Papineau said their familieswant to stick with services at CHEO.

'Needs-based' funding to come

Caissie said the fees have been set so CHEO can recover its costs.

She said it is difficult for the hospital to answer some questions about the program because the province is in the process of developing itincluding setting the rules around additional 'needs based' funding.

"They have not decided how they're going to determine those needs and they are developing an advisory panel to address that," she said.

"CHEO does not have that information; that's a work in progress."

Caissie said it is too early to determine if the change in the program has led to an increase or decrease in people accessing services at CHEO.

CHEOhas a second set of public information sessions onMay 7at 1002 BeaverbrookRd.and 2280 St. Laurent Blvd.

Both sessions start at 6 p.m.