Treatment wait times for kids with autism 'excruciating'

Referrals to a Halifax treatment program for children with autism jumped by 14 per cent this year — forcing some parents to wait nearly a year for treatment.

As of Wednesday, the IWK was treating about 44 kids in its Early Intensive Behaviour Intervention program, while another 90 were on a wait list to get into the program.

The intensive therapy is one of the only known effective treatments for autism — and it’s time-sensitive — working best on children before they hit school age.

Jen Morris has a four-year-old daughter who’s waiting to get into EIBI therapy at the IWK.

"It's really difficult, knowing there's something out there for your child and having to wait,” said Morris.

Sadie was diagnosed in November 2013, but Morris was told there wouldn’t be space for her daughter in the program until September 2014.

That means Sadie will have to enter kindergarten at age six — a year after most of her peers.

“I think it adds insult to injury,” she said. “She’ll be dealing with being a year older than her peers, watching her peers going off to school now, being a year behind, being bigger physically and having to answer questions about that.”

Halifax mom Allison Garber is going through the same thing. Her son was diagnosed in November 2013 and has had to delay going into kindergarten until he is six because waits for the EIBI program are so long.

"When you know early intervention is crucial for your child's success, the days weeks and months of waiting to access that treatment is excruciating for that parent. It's heartbreaking," said Garber.

Referrals up, funding stagnant

Officials with the EIBI program at the IWK say they saw a 14 per cent increase in referrals to their program in the last year, but funding from the province is stagnant.

The province spends about $8 million per year on EIBI programs across Nova Scotia.

Lynn Cheek, the executive director for Mental Health, Children’s Services and Addictions for the province, said the province considers the programs fully funded.

Cheek also said there are currently no plans to put more money into the therapy to reduce wait times.

Heather Osbourne-Vincent oversees the EIBI program at the IWK. She admitted the wait times are not ideal but would not say more money was the solution.

“I think we’re still at a point where we’re juggling that and trying to figure that out,” said Osbourne-Vincent. "I don't think ultimately when everything balances out, and hopefully the incidence of autism does not continue to rise, that we would need those funds on a long-term basis."

She said the increased diagnosis is leading to an increase in referrals, but she doesn’t believe that increase in diagnosis will continue.

"We're optimistic that the incidence of autism won't continue to increase and the increase that we've seen over the last two or three years won't continue and then we would be back in a balance," she said.

New campaign for Nova Scotia parents 

Garber and Morris have launched a campaign to get the province to act now to reduce wait times.

"The earlier that Sadie and other children on the spectrum on these skills, the more the world opens up to them, so we're losing valuable time," said Morris.

Both said they want the province to provide more funding in order to increase the number of spots available to children waiting for treatment.

"I'm watching my amazing, awesome kid wait for a service that's available and I'm doing everything I can to help him and it's excruciating to have to wait," said Garber.

She said she is grateful the province does provide the program and understands the province is strapped for cash, but she said early intervention will end up saving the province in health care costs down the road.

The online campaign, dubbed Support Early Intervention, tells success stories of children who have gone through the EIBI program in the province. It’s also collecting names for a petition to increase funding for the program in Nova Scotia.

Garber said she wants as many parents as possible to come forward and ultimately sit down with the province’s health minister, Leo Glavine, to discuss a strategy to reduce waits.