'Staffing crisis' leads to delays in accessing early intervention for children with autism

Melissa Reuther is tired. You can hear it in her voice.

There's nothing unique about Reuther's situation. In fact, it's the commonness of things that's partly so frustrating for the Glace Bay, N.S., resident as she and her family wait to get help for four-year-old Kingston, who has autism spectrum disorder.

"I took the diagnosis very hard," Reuther said during a recent interview at home with her son.

"It's been really hard to watch your child not be able to communicate with you."

Priority to oldest kids waiting

Reuther started noticing developmental delays with Kingston in his infancy. By his second birthday, in 2016, Kingston was diagnosed and referred to the provincial Early Intensive Behavioural Intervention program, or EIBI.

Like many before her, Reuther was told to wait for a call, and that it could be a while.

It's been two years and counting.

EIBI is a six-month intensive program for children diagnosed with autism before they start school, pairing them with direct-care staff, a clinical supervisor and a speech-language pathologist — all with a focus on developing social communication skills.

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

Reuther was told early last summer to prepare for Kingston to begin therapy in July. But a few days before things were to begin, the family got another call saying things would be delayed indefinitely.

"I was told that it was a staffing crisis in Cape Breton and that there was nobody to oversee his therapy," she said.

There were six vacancies in the Cape Breton EIBI program at the time.

According to a Health Department spokesperson, two full-time clinical interventionists have been hired for the island this past week. That will restore the complement of three supervisory positions.

With those posts filled, the provincial health authority is now recruiting for two permanent and two temporary autism interventionists.

Staff shortages and waiting lists

But staff shortages aren't limited to Cape Breton. Across the province there are 10.2 permanent full-time equivalent direct care staff vacancies.

There are four vacant full-time equivalent clinical supervisor positions and a 0.7 speech-language pathology position that needs to be filled. The EIBI provincial team also has vacancies for one provincial trainer and one psychologist.

All of this translates to wait lists.

As of the end of September, there were 175 children waiting and eligible for EIBI, according to the Health Department. Of that group, 101 were born in 2014, making them eligible to start school in September 2019.

Cynthia Carroll, the executive director of Autism Nova Scotia, said that means some parents will be faced with the choice of starting their child in school without doing EIBI, or holding them out for a year in hopes they get access to the program before aging out.

The latter could mean another year of paying for daycare for some parents, an added cost and challenge because some don't accept school-age children.

"It's incredibly problematic for a variety of reasons," said Carroll.

Carroll is hoping the provincial government will reconvene its expert panel on EIBI to re-examine how to ensure continuous services for people in need.

That group included representation from the education system, provincial health authority and IWK Health Centre, the Health Department and Carroll's organization.

The effort needs to look at EIBI and current resources, but also ways to improve access to early diagnosis and consider how recent changes, such as the pre-primary program, can be incorporated into efforts to improve the overall system, said Carroll.

"It's about how do we get a best-practice approach — seamless, continuous services for families so that they're not caught in these cracks and they're not falling between a system that's not currently [as] integrated as it could be."

A right to reach 'fullest potential'

A Health Department spokesperson said in a statement that significant investments have been made so all preschool-age children with autism can get EIBI before beginning school at age six.

"The province spends $14 million annually so that approximately 180 children with autism spectrum disorder will be able to receive treatment each year," Tracy Barron said in an email.

As Kingston waits for his turn, he's now in daycare three days a week, which includes speech therapy once every two weeks. His mom has high praise for the staff there and what it's meant for her son.

But she's hoping access to EIBI can help her boy be able to express himself, to learn ways to get what he needs and to "live his life to the fullest potential."

"He has the right to be able to do that, as every child in Canada does."

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