Wait times for autism therapy program 'unacceptable and devastating,' says Green MLA

Some P.E.I. children with autism who need a specialized therapy program have been waiting so long to receive treatment that they're entering the school system without receiving that therapy.

Intensive Behavioural Intervention (IBI) offers one-on-one instruction for several hours a week with children at their homes or in child-care centres to help them transition into the school system.

As soon as Emily Savoie's four-year-old son Ben was diagnosed with autism, she wanted to make sure he was in the program before he made the transition to school.

"He is such a fun loving little boy, active and intelligent," Savoie said.

"This is one way that Ben was going to get ready for his lead up of course to kindergarten but also to help with his verbal communication. As a parent you want to make sure you're as supportive as possible and that you will be the voice for your child," she said.

Ongoing wait-lists

But what followed was waiting, from diagnosis, to assessments, to Ben finally being scheduled to get IBI.

Savoie applied to have her son take part last year but the process, partly because of COVID-19, had been delayed for so long that Ben isn't scheduled to receive his therapy until July, just a few months before the start of the school year.

It's why Savoie and her husband have made the difficult decision to hold their son back a year to make sure he has enough therapy before he transitions to the classroom.

It's also why she has been contacting government to take action "and ask why these delays were occurring or wait-lists were happening."

"It is fundamentally important to have these wait-lists abolished," Savoie said.

Families 'desperate''

"For a child to be set up for success, this program is crucial," said Green MLA Karla Bernard, who recently brought the issue up in the legislative assembly as members went over the provincial budget. Government has increased funding for IBI this year but still has 14 children on its wait-list to receive the therapy.

During the sitting, she said she's spoken with "a lot of parents who have been waiting for this service for so long that their child is starting school in September and they still have not had this crucial program."

Like Savoie's family, the process to even access the program is lengthy, including getting an autism diagnosis, a psychological assessment and hearing assessment, with some families having "spent their child's entire toddler life waiting," Bernard said.

"One man I spoke to on the phone who was so utterly desperate for respite care, when I heard the story of what his family was living through, I was almost in tears," she said.

"That is completely unacceptable and devastating and I want to know what your department is going to do for those families?" Bernard asked Education Minister Brad Trivers.

Shortage of assessors, tutors

In response, Trivers said while there might be children on the wait-list to receive IBI, "it doesn't mean they're not being helped," citing other disability support programs and services.

"However, I agree, we need to do better and that's one thing we worked really hard on over the last year or so, was to find the funding to get these children into the programs right away."

Trivers later told CBC that "wait times have been an issue for a number of years," because of two main factors: a shortage of people to do assessments and a lack of autism tutors to provide IBI.

Right now the department is focusing on "the most vulnerable first and the professional staff in the department work on a case-by-case basis," when it comes to shortening the wait-list, Trivers said. 

"If there really is an urgent need and the child has to go in, that's when they come to me and we work to find the money that we need to support them if that's what the issue is." 

But Savoie said she hopes to see the wait-lists for services and programs like IBI eliminated completely so that families can get the help they need when they need it.

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