Some N.S. parents feel ‘helpless’ after autism support program cut short

More families involved in a Nova Scotia program to help children with autism say they feel abandoned, and they’re calling for exemptions to be made to help their children continue the program.

On Monday, CBC News reported that 100 children will age out of the Early Intensive Behavioural Intervention program, or EIBI, at the end of August, despite missing four months of their hands-on therapy.

The program is supposed to help build up communication skills to get them ready for school over the course of a year.

The Education Department said of those kids, 70 had partial therapy, while 30 had not yet started the program.

After the report aired, five more families contacted CBC pleading for help. They described a system that has been plagued with staffing shortages and poor communication.

Many were under the impression therapy wasn’t restarting at all, but the manager of EIBI confirmed again to CBC that they hope to restart by mid-July.

‘You’re drowning,’ says parent

Even when it does restart, Amy Johnson believes her family has been robbed of the opportunity to help their son.

“You kinda feel like you’re drowning. You’re helpless,” she said. “They’re not taking accountability for these kids and making sure they’re OK.”

Johnson said her five-year-old son, Alexander, was showing dramatic improvement during their short time with the program, but his therapy was already compressed.

Because of wait lists, he was only set to receive nine months of therapy before he aged out. Now, he might have as few as four.

Jackson Gracie, pictured here with his father, Kyle, was non-verbal and a flight risk when he started working with EIBI therapists. (Submitted by Kyle Gracie)

On top of that, she said he missed 17 sessions because of staffing issues within EIBI.

“The whole basis of the program is to be intensive, and for it to function properly it has to be that intensive therapy,” she said.

Johnson called her son’s school to ask if he could begin in January so he could spend more time with the program. While the school said yes, EIBI said the deadline to finish is Aug. 31.

Johnson said they need to make exceptions for this year.

“We would have to look at alternatives to see if we can possibly afford or figure out a way to afford private care,” she said. “I don’t feel comfortable starting school in the fall. I don’t think he’s equipped.”

‘Set up for failure’

Ashley Henneberry said the situation has revealed major cracks in the Nova Scotia program.

Her son, who is also named Alexander, was nearing the final phase of his therapy when it stopped.

She’s given up hope that will allow enough time for Alexander to learn “picture exchange communication,” which is a way kids with limited speech can communicate using pictures.

“It’s my hope that the school’s speech language pathologist would be able to meet with my husband and I and show us,” she said.

Henneberry said this four-month break shows how the program is underfunded and understaffed. She said it should start earlier so it’s not a last-minute scramble to get the children prepared.

“Without it, they’re just being set up for failure and that’s just something we parents are not going to stand for,” she said.

In a statement, the Education Department said “No student will be left behind when it comes to receiving a quality education in Nova Scotia.”

Lachlan Levangie is on the wait list for the EIBI program. He has to complete it before starting school next year, but his mother is worried that a second wave of COVID-19 could shut the program down again. (Submitted by Jennifer Levangie)

The statement is exactly what Jennifer Levangie fears.

Her son, Lachlan, doesn’t have to start school until next year, but already she’s worried he won’t start EIBI soon enough, especially if a second wave of COVID-19 shuts everything down again.

Families in Lachlan’s age group were offered weekly video coaching for parents. Levangie hasn’t started that yet, but is already doubting its effectiveness.

“We, as parents, I don’t believe, have the skill set,” she said.

“They need that hands-on training from people who have that specific goal.”

‘It’s not acceptable,’ says parent

Levangie is also appealing to the government to add funding and support to the program. She said the wait list of 299 children shows they need more help.

“You can’t just say no, we’re not helping these children.”

Johnson, meanwhile, wants to know why EIBI is taking so long to set up. She said it should have been an immediate priority, long before salons could open and groups could gather.

“It’s not acceptable,” she said. “Even to start the services in mid-July, daycares were open a month before that.”

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