Nova Scotia

Father fears sending son with autism to school after therapy program cut short

A family from Eastern Passage is calling for increased support for children with autism after their son missed nearly four months of an intensive therapy program during the COVID-19 shutdown, and must start school this fall.

Jackson Gracie, 5, must start school this fall despite not completing intervention program

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

A family from Eastern Passage is calling for increased support for children with autism.

It comes after their son missed nearly four months of intensive therapy during the COVID-19 shutdown, and is on the verge of aging out of the program.

Five-year-old Jackson Gracie has been participating in the province's Early Intensive Behavioural Intervention program, or EIBI, for the last year.

It helps kids with autism spectrum disorder develop functional social-communication skills before they enrol in school.

"He was still eating without utensils, still drank from a bottle, [he had] no speech," his father, Kyle Gracie, said of Jackson when he started the program.

Gracie is worried nearly 100 children in the province will fall through the cracks because their program isn't being extended, and the education system won't have the resources to help.

'He started to thrive'

With EIBI, Jackson started with about three hours of direct therapy with interventionists each day. They taught him to communicate using pictures.

"He started to thrive, jumping through the phases pretty quickly," Gracie said. "As soon as we started seeing a bit of stability hitting, March hit."

Gracie was hoping the program would be extended for the kids in Jackson's age group. But the manager of EIBI at the IWK Health Centre said their hands are tied.

Heather Osborne-Vincent said the hope is to have the program back up and running by mid-July, but children must finish their therapy by Aug. 31 in the year they turn six because they're legally required to go to school in the fall.

Jackson falls under that umbrella, and he isn't alone.

Osborne-Vincent said there were 152 children enrolled in the program in March. She said two-thirds of them will turn six this year.

"It's hard for everybody," she said.

299 kids waiting to participate

Barbara Stoesz, director of Hearing and Speech Nova Scotia, said they're empathetic to the stress this has put on both parents and service providers. She said they're in a bind because the system doesn't have flexibility.

"We also have to worry about the children who are coming behind and what the impact of those children will be. We have to look at it from a big picture perspective, unfortunately."

The pandemic has been a major setback for a program that has been dealing with waitlists and staffing shortages for years, as the number of autism diagnoses in the province have continued to rise. 

In March, there were 299 children in the province who were deemed eligible for the EIBI program, and waiting for their turn. Half of them start school next year.

Jackson Gracie's parents say he was starting to communicate and thriving under the EIBI program when the shutdown began. (Submitted by Kyle Gracie)

Through the shutdown, Osborne-Vincent said they offered video training for parents once a week.

Parents of next year's cohort were also offered video meetings as a way to give them a head start. Gracie participated in those sessions but said they fell far short from the work of the therapists.

He said he and his wife struggled to balance working from home while also trying to do therapy with their child. 

"If we hit a hiccup, we'd be unsure of what to do."

Restarting therapy

Osborne-Vincent said families will be offered the same number of hours of therapy their child was receiving in March when the direct intervention aspect of the program starts up again,

EIBI is designed to gradually reduce hours of treatment, but she said that won't be the case for this group.

"We will start them at the intensity where they were, and we will maintain that intensity until August 31."

The Education Department sent a one-line statement, saying it is working with EIBI and the parents to "ensure the appropriate transition supports are in place for September." It offered no further specifics of a plan or what those supports may be.

Kyle Gracie says it was a struggle to do enough therapy with Jackson while working from home. The family was given one hour of video support a week. (Submitted by Kyle Gracie)

That does nothing to ease Gracie's concerns about his son. He said there needs to be exceptions made to help kids in this position.

"I'm well aware that the pandemic has hit and these are strange times, very different times. But we can't let these kids also get lost in the shuffle either."

Gracie said the family is now being forced to send Jackson into a classroom despite their concerns.

"We feel absolutely he's not ready, he's not even close to ready."

ABOUT THE AUTHOR

Carolyn Ray

Videojournalist

Carolyn Ray is a videojournalist who has reported out of three provinces and two territories, and is now based in Halifax. You can reach her at Carolyn.Ray@cbc.ca

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