Limited space in preschool autism program leaves Antigonish family 'distraught'

Margaret MacIntosh was counting on a place in an autism intervention program to get her four-year-old son ready to start school.

The early intensive behavioural intervention (EIBI) program is the one she was anticipating would set her son up for grade primary this fall in Antigonish, N.S. She had already received a letter last year confirming he was eligible to participate in the six-month program .

But when she followed up to check when her son could start, she was told his first chance at the program will not be in time for the upcoming school year.

"We were really upset, really distraught," MacIntosh said. "Their wait list is so long they're having trouble accommodating everybody."

EIBI is a program that offers children diagnosed with autism spectrum disorder 15 hours of intervention a week through a partnership with the IWK Health Centre, Nova Scotia Health and Nova Scotia Hearing and Speech Centres.

166 remain on a waitlist

The program, currently placing children born in 2018, has been expanding over the past few years but still cannot meet the growing demand.

As of Feb. 9, there were 255 eligible children born in that year on the list for EIBI.

The program is only able to place about a third of them in time to complete the six-month schedule before the upcoming school year in September.

It means 166 kids are in a position where their families need to decide whether to hold them back from entering grade primary until next year to also benefit from the program.

"We've talked about this before, this is really a choice families shouldn't have to make," said Cynthia Carroll, the executive director of Autism Nova Scotia.

The province has some of the highest rates in the country of autism among five-year-olds. She says that's one of the reasons so many families are seeking help.

She's calling for a provincial autism strategy as a way to better integrate the system with education and identify gaps in service.

Work is already underway to transform the system following an infusion of $12 million by the Nova Scotia government last year, according to EIBI program management.

"We are obviously concerned we are putting families in that situation and that concern has led us to have continued conversation with government," said Heather Osborne-Vincent, a manager with the EIBI program.

A new service model is being developed with a broader range of interventions and supports.

"It will focus on families identifying needs and matching services to those families' needs," Osborne-Vincent said.

Enhancing services

The Office of Addictions and Mental Health emailed a statement to CBC News recognizing the difficulty some parents are experiencing.

"The new and enhanced services will include a greater number and range of interventions and supports available for children and families, reduce waits for programs, and ensure that children are receiving the right level of care at the right time," the statement said.

The province is also participating in a federal, provincial and territorial initiative to develop a national autism strategy it expects to be released later this year, according to the statement.

MacIntosh and her partner Joe Sampson have made the decision to send their son to school in September rather than hold him back a year to wait for the EIBI program.

His progress following hard work with a therapist, and his advanced skills in math, give them confidence he can do well although his language skills are still their main area of concern.

He will get support from a speech language pathologist in school and the family are looking at finding private support in addition to the help they are getting from a family member who is a retired teacher.

While disappointed EIBI is not going to work out for her son, MacIntosh said people in the program and Nova Scotia Mental Health and Addictions have been helpful, as well as her local MLA Greg Morrow.

But she is concerned about all of the other families in the same position. And is hoping they are being contacted so they're also clear about their options.

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