Parents demand plan, funding for kids with autism who have to start school

Parents of children with autism say they're still in the dark on how the school system will help when classes resume in just over a month.

They're also putting new pressure on the provincial government for funding after submitting an online petition with about 3,600 signatures.

The campaign is being led by Kyle Gracie and his wife, Jennifer. Their son, Jackson, is one of 100 children in Nova Scotia who had their Early Intensive Behavioural Intervention program, or EIBI, cut short because of COVID-19.

The children are supposed to receive 12 months of hands on therapy to help prepare them to enter school, but 70 children received partial treatment, while another 30 received none at all, according to the education department.

The children are legally required to start school in September, no matter what, because of their age.

The education department previously told CBC "no child would be left behind" and appropriate support will be in place, but that message hasn't been received by the parents desperate for answers.

"As far as we know, right now there is no plan," said Kyle Gracie.

He said the only correspondence he's received from his son's school was details about what supplies would be needed.

"What is that going to do with the learning centres that are in these schools? Is it going to flood them? Is there going to be enough staff to accommodate for all these children? We have no idea what's coming in the next month or two."

Even if the children were allowed to stay out of school to finish EIBI, a spokesperson for the program previously said it also cannot be extended because there was a backlog of another 300 children waiting to start.

Gracie said the solution is urgent funding to hire more therapists to continue EIBI for this cluster instead of cutting them out. "There should be a loophole in this case."

He said if they can't find enough people to hire, they need to partner with private companies that were already established in the province.

"It's so crucial," he said. "This program is not just for the kids, but for the families."

Supports available

The department of education said Wednesday no one was available to do an interview, but sent along a statement in the evening. 

The statement did not address the petition or finances of EIBI. 

The department said all families who are attending school this fall have had a chance to have a transition meeting at their primary school. 

"Our provincial autism consultant has also been in touch with EIBI staff to answer any questions families have between now and the beginning of the school year in September," the statement said. 

It says depending on their needs, the children will have access to specialists and support teachers, speech language pathologists, learning support teachers, school psychologists and behaviour specialists.  

The department said it confirmed the EIBI service has restarted, but it hasn't for everyone.

In an email, the IWK Health Centre, which operates one of the province's sites, said some children are still waiting.

"Many staff have summer vacations," it said. "Every effort is made to make up these hours, but at times is not 100 per cent achievable."

Gracie said his family was fortunate because Jackson's EIBI therapy resumed two weeks ago. But he said other families were distraught because they didn't know when therapy would resume.

The statement did not say if extra staff is being hired or if funding will be increased. 

The call for both more staff and money has the backing of Autism Nova Scotia.

"We have always stated that all families should have the option to receive a full 12 months of EIBI," said Cynthia Carroll, the executive director, in an email.

"The funding model for the program needs to align with the demand for this service. We know it currently does not and that is a problem."

Carroll said the long-term solution needs to be that children start the program earlier, at three years old, to give them time to complete the therapy.

After just two weeks back in EIBI, Kyle Gracie said they're already seeing the benefit for their son, who is non-verbal.

"He can go flip open the binder, and hand us a picture of what he's looking for."

While he's excited for Jackson's progress, the thought of sending him to school continues to loom over his head.

"We should have months to go on his development."