Hundreds of N.S. youngsters with autism wait for intervention program

Mary MacKinnon had been waiting for a call inviting her four-year-old son to start Nova Scotia's early intervention program for children with autism spectrum disorder.

The call never came.

"I'm sad, frustrated and angry," said MacKinnon from her home in Sydney, N.S.

"He's not going to be where he could be. He could be a lot more comfortable going to school."

MacKinnon's son, Brody Besso, is starting school this September. He was one of hundreds of children in the province on a wait list for the Early Intensive Behavioural Intervention Program (EIBI).

The 12-month intensive program pairs the child with direct-care staff, a clinical supervisor and a speech-language pathologist — with a focus on developing social communication skills.

Wait list grows to 222 children

As of last month, there were 222 children eligible and waiting to access EIBI, according to figures provided by the Nova Scotia Health Authority.

That's up from 175 in September 2018.

Cynthia Carroll, executive director of Autism Nova Scotia, said 222 is the most children she has ever seen on the list.

She said hundreds more are waiting anywhere from 18 to 24 months to be diagnosed with autism. After the diagnosis, families can often wait years to access EIBI.

"As you have wait lists upon wait lists, it can bottleneck a system," said Carroll in an interview at the Autism Nova Scotia office in Halifax.

"I think that's where it can get concerning, on the question of are children getting dangerously close to missing the treatment window?" she said.

"I know there are definitely situations in which that will happen."

Because of the wait list, and because age six is the cutoff, the oldest preschool-age children are prioritized.

Numbers expected to dwindle: IWK

Heather Osborne-Vincent, manager of rehabilitation services at the IWK Hospital in Halifax, said the number of children on the wait list is constantly fluctuating.

She noted that between June and October of last year, roughly 70 children started EIBI, as older children finished the program and prepared to start school in the fall.

Osborne-Vincent said she expects the list will dwindle over the next several months.

"There is a time of the year when the wait list goes down considerably, and then it grows," said Osborne-Vincent in a recent interview at the IWK.

But she also acknowledged that the prevalence of autism has been increasing, and so "we're seeing that impact our wait-list numbers."

On Wednesday, the Health and Wellness Department announced a new pilot program that will provide one-on-one coaching to parents of toddlers with autism, using play-based activities to help develop communication and social skills.

The program, which is being offered in Halifax, will cost $2 million over four years. It aims to help 35 children between age one and three in the first year, and 50 children in each of the following three years.

'Are we doing the right thing?'

MacKinnon started noticing developmental delays with her son when he was about 18 months old, but he has to wait nearly two years to see a speech therapist.

At that appointment, the therapist suspected Brody may have autism. They then had to wait another year for an assessment.

He was referred to EIBI late last year. But because he's starting school in September, the clock has been ticking and there is no longer enough time for him to complete the program before school starts.

Although some parents choose to defer school for a year to allow their children to access the program, MacKinnon said that was not possible for her family.

All options considered

Her husband works in Alberta, and she is returning to school herself this fall to become a teaching assistant, in part so she can better support her son.

"We thought about any option that we could to make it happen, and it just wasn't possible," said MacKinnon.

"He's missing out on what I hear is a really great program and probably could have been something really good for him. It makes us feel like, are we doing the right thing?"

'Chain reaction of a failed system'

MacKinnon said she feels if Brody was able to meet with the speech therapist sooner, the red flags would have been caught sooner.

"And then he would have been diagnosed a lot sooner," she said.

"It's a chain reaction of a failed system."

Last year, more than 80 families chose to defer school for a year so their children could take advantage of EIBI, the health authority said.

Fewer job vacancies

Staffing has also been an issue, although several vacancies have been filled in the last few months.

The health authority said at the end of March, there were 6.7 full-time equivalent vacancies, compared to 10.2 in November 2018.

In 2016-17, the province committed an additional $3.6 million to expand EIBI. Autism Nova Scotia has called on the provincial government to reconvene its expert panel on Early Intensive Behavioural Intervention.