Autism program review in Nova Scotia delayed again

A provincial review into an intensive program for children with autism still has not been released to the public.

Nova Scotia's Department of Health tasked a group of experts with looking into the Early Intensive Behavioural Intervention (EIBI) program.

The program is offered to children on the autism spectrum, up to the age of five, before they enter Grade Primary. That review included assessing the program's effectiveness and looking at ways to reduce the waiting list which, at times, has had close to 200 children.

Currently, there are 182 children on the waiting list.

A report was expected in late fall. By late December, the province acknowledged the delay, telling CBC News it needed more time and that the report would be releasedsome time in early 2015.

According to a spokesperson with the Department of Health, the department is now "aware of the contents" of the EIBI report and is reviewing its recommendations. The spokesperson told CBC News the department expects to have more information by the end of April.

For some parents and advocates, the lack of communication has been worrisome.

"I think that they are shamelessly delaying things without accountability," said Cindy Bain, whose four-year-old son, Evan, is on the autism spectrum. "It is in no way acceptable."

Children who do not get into the program before they turn six, no longer qualify. Others have to delay starting Grade Primary if parents want them to take part in EIBI, which is designed to help children in the early years of their development.

'Failed a generation of autistic children'

Bain's son, Evan, is one of those children. After months of waiting, he starts EIBI on April 7. The program, which includes intensive, specialized therapy, requires a six-month minimum, which would take Evan to the first week of October one month after the start of the school year.

"He will have to wait a full year to get into school," said Bain. "That one month has cost us a whole year."

For Bain, that means a year waiting to start school, and an additional year paying for daycare. While it is too late for a review to help her, she wants other parents to not have to go through the same frustrations as she and her family.

The province "completely failed a whole generation of autistic children, in my mind," said Bain.

"More and more parents are now entering, approaching the next school year in September, and they're making the decision whether they keep their child out of school in order to take part in EIBI," said Allison Garber, who has a young son on the autism spectrum.

She took her concerns about EIBI waiting list numbers to the province months ago.

Decision should not be 'forced' on parents

"Sometimes delaying entry into school is the right thing to do, but that should be a decision that a parent should make. It should not be a decision that is forced on them because of a government policy," said Garber.

After direct advocacy work with other parents of children with autism, she is disappointed in the lack of communication throughout the review process.

"It's really disappointing. I feel let down on a personal level that we have not been kept in communication with after advocating so hard for this," said Garber, who is on the board of directors for Autism Nova Scotia.

Garber acknowledged the province has made progress in improving support for children with autism. In January, the Department of Education and Early Childhood Development announced funding to help care for children with developmental delays.

While those early intervention programs can also help children on the autism spectrum, that announcement did not address the EIBI waiting list.

Chandra Greatti, whose son Andrew started EIBI in February, said the province should expand who can offer the program to help ease the strain on the system.

"If we have such a bottleneck at the IWK, would it not be wise to potentially look at other creative ways that we can relieve that bottleneckso that some families ... would be able to access the services, either privately through registered ABA [Applied Behaviour Analysis] therapists, throughout the province and then get it provincially funded," said Greatti.

The Department of Health has not indicated what changes, if any, will be made to the EIBI program.