Mother frantic for help after autism therapy program shortened due to COVID-19

Parents of children in an intensive autism therapy program are begging the Nova Scotia government for more support, saying gaps in their therapy will affect the current cohort of kids for the rest of their lives.

The children are supposed to receive one year of therapy in the early intensive behavioural intervention program, or EIBI, but because of backlogs created in part by the pandemic, they'll only receive six months before they must start school in September.

Health Minister Leo Glavine argues the program is still meeting the needs of families in extreme circumstances, and his department says the time limit was the only way to ensure all children born in 2015 have some therapy.

But Tausha Butler, who lives in Tatamagouche, N.S., is the latest in a number of parents who have reached out to CBC News since the pandemic began, frantically looking for help for their children.

Butler's son, Daxon, started EIBI in the fall, and will finish his one–on–one sessions two weeks from now. The mother says for the first time in her son's life, the five-year-old is engaged while playing, and gets excited when his EIBI team arrives.

"It's a miracle to see," Butler said. "I would try and find anything I possibly could online to get him to interact with us even just a little bit, now he's asking us to play."

But Daxon will miss out on potty training because his program is being cut short. He's also starting to make progress with a picture communication system, but he's only on the first of several phases, his mother says.

"He deserves to be able to communicate what's in his beautiful mind," Butler said.

Daxon's grandmother, Ishbel Munro, is crushed to see what's happening to Daxon and his peers. She sent a petition with nearly 3,000 signatures to the premier and Glavine, demanding more money be invested to hire more workers.

This is the second outcry from parents since the pandemic brought all therapy to a halt for months when it became too risky for workers to visit children in their homes.

"For us, this is beyond devastating, and just feels cruelly unfair how COVID has impacted the special needs community," Munro said.

"It may be too late for Daxon — which I hate to think of — but I would still do the fight even if it's for the children who are coming up."

In November, the province announced it would spend an extra $3.5 million on the EIBI program in order to hire more staff, and ensure all children born in 2015 have six months of training before they start school in September.

The province spends $13.2 million annually on EIBI. The extra money is one-time funding from the federal Safe Restart Agreement.

'Meeting the needs'

Glavine says these are extraordinary circumstances, and he's confident the education system will help continue the progress when this cluster of children start in September.

"We are meeting the needs of people," he said. "I see this as an unfortunate short period of time because we work on this every year to address as many of those pressing and challenging issues that parents have."

As Munro points out, this isn't a problem isolated within the pandemic. The EIBI program has dealt with staffing shortages and wait-lists since its inception.

Munro says the province should have seen this coming, and a year into the pandemic she doesn't accept it as an excuse anymore.

"I just think it is so outrageous that because of a pandemic, a human being may never be able to communicate what's in their heart and what's in their mind," she said. "It's having a huge impact on Nova Scotian families."

Glavine, who says he had not seen Munro's petition before his interview with CBC, says he sympathizes with families.

"Those are absolutely the heart–wrenching moments that having met with parents of children who are very severe."

Glavine recommends families contact Autism Nova Scotia to see if there are centres in their areas that can offer support.

While the shortened EIBI program is supposed to be a temporary fix to deal with the current backlog, Glavine stopped short of guaranteeing the next cluster of children will receive the full year of therapy when they start in September.

Glavine says the department will re-evaluate the funding needs for the program annually. 

There are currently 286 Nova Scotian children waiting to start EIBI. A further 245 are waiting for an official diagnosis of autism that will place them on the list. 

"The plan is that this is an extraordinary time with COVID, and the hope is that all those children identified will be getting the year of EIBI," he said. "That's the goal."

Glavine is trying to reassure parents, saying the education system is preparing to help the children adjust to school.

"We have again some outstanding EAs, the educational assistants and others who are specifically trained to deal with those needs," he said.

But that's cold comfort for Munro and Butler.

Butler's other son, Kayden, also has special needs. She says the IWK recommended he work with an occupational therapist at school. She says they waited two years for help that never came. He is now home–schooled.

"You talk about being inclusive and you want to project this image that this government [is] all-inclusive this year, but you're still excluding children with special needs and they're the ones that need it most."

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