February 4, 2002

PARENTS DEMAND IMPROVED SERVICES FOR AUTISTIC CHILDREN

Little Nadia's forehead is covered in bumps and bruises. And they weren't inflicted accidentally. Like many children who suffer from a neurological disorder known as autism, the 2-year-old Toronto toddler has no way to communicate. She repeatedly bangs her head against the wall in frustration.

Two years ago, the province allotted $19 million for treatment to help children like Nadia improve their speech and social skills. Last spring, it more than doubled that amount to $39 million. Today, Nadia's family is among many wondering why, with all that money, the waiting list for treatment in Toronto can be several years long, and when the child reaches age 6, that funding is abruptly cut off.

"I've been told she's number 580 on a list of 600 and two years is a typical wait," says Nadia's mother, Marianna Ofner-Agostini.

"That's time we just can't afford to take … We'll just have to re-mortgage our house to pay for it ourselves ... it's senseless and frustrating."

Ofner-Agostini and others are demanding that Ontario's Intensive Early Intervention Program for Children with Autism provide faster service and continue that service beyond age 6.

Autism is a neurological disorder that affects several thousand children in Ontario. Autistic children typically have difficulty with speech and are often unable to learn even simple tasks.

The therapy in use in Ontario is known as applied behaviour analysis. Pioneered in the United States by Dr. lvar Lovaas more than 30 years ago, it involves intensive sessions in which a therapist repeatedly reinforces appropriate behaviour, language and social skill with the child. Autistic children generally need two or three years of such therapy, which costs between $45,000 and $80,000 a year.

Clovis and Sherron Grant filed a complaint with Ontario's ombudsman last week after being told that they could not expect to get treatment for their 5-year-old son Isaiah because their service provider, the Toronto Preschool Autism Service, told them that it can't get any money from the government. Isaiah has spent 13 months on the waiting list. His parents say they were told he is number 339 of 600.

"We have lost hope for our child receiving the early intervention that has been talked about so many times by your government ... we feel deceived and let down by your department," the Scarborough couple wrote in a recent letter to John Baird, the minister of community and social services.

Last Thursday, Norrah Whitney, who is the mother of a 6-year-old autistic boy, filed a written request with provincial auditor Erik Peters to audit the autism program to determine whether the taxpayer's money is being spent wisely. Whitney also filed a similar request with the ombudsman.

Whitney has already filed a complaint of discrimination on her son's behalf with the Ontario Human Rights Commission. In her complaint, Whitney states that the government has violated her son's rights by failing to provide him with a medically necessary treatment.

When he was 5, Whitney's son, Luke Burrows, was given 30 hours a week of intensive one-on-one behaviour therapy under the government-funded program He learned words, then phrases. And he began feeling comfortable socializing. Now that he is 6, however, that funding will not continue.

"He's not ready to go to school," says Whitney, a single mother who works part-time. "He needs to keep up this treatment in order to develop his speech and social skills."

In an interview with The Star, Baird said that Ontario is doing more than any government in Canada for autistic children.

"I don't pretend that we are going to be able to meet every need, but we've gone from spending nothing three years ago to $19 million two years ago and then we doubled that funding...I can't think of any other program where we doubled funding in one year", Baird said, adding that he knew of only 55 children waiting for treatment in Toronto.

Ofner-Agostini, however, says that this kind of thinking is shortsighted.

"If Nadia receives treatment before the age of 5, for a period of one to two years, she has a high probability of living a normal life. By spending now, the government is saving millions of dollars in the future. If these children are not treated now, they will need aides when they enter school and they may have to be placed in group homes or institutions later."