Parents struggling with CHEO's new autism fees

Representatives from eastern Ontario's children's hospital are explaining how the revamped system will affect and cost parents, but some parts are still in the works.

Therapy program changes mean children's hospital forced to charge fees

Patricia Lukogi, right, is trying to understand how changes to Ontario's autism service delivery will affect her seven-year-old son Eliott Kayembe. (Matthew Kupfer/CBC)

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 explain the 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," Caissie said.

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

3 years ago
Duration 1:06
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 son Eliott Kayembe is 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's said his family is lucky his nine-year-old daughter is high-functioning on the autism spectrum, he said the government funding doesn't go very far.

Julie Caissie, director of CHEO's autism program, was meeting with parents at the hospital's autism services location on St. Laurent Boulevard. (Matthew Kupfer/CBC)

"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 families want 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 it — including 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."

Michel Papineau said he came to the CHEO information session to see how the Ontario government's changes would affect his daughter's access to services. (Matthew Kupfer/CBC)

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.

CHEO has a second set of public information sessions on May 7 at 1002 Beaverbrook Rd. and 2280 St. Laurent Blvd.

Both sessions start at 6 p.m.