'Stressed and heartbroken': One mom shares her family's story amid uncertainty about provincial autism program

At first, Krista Smith thought it was a cute quirk, when her son repeatedly lined up the bottles of shampoo along the edge of the bathtub. In fact, she still does.

But now, Smith knows that such repeated, habitual actions are common for people with autism. It was one of the reasons she and her husband decided to take their four-year-old son, Conor, for a diagnostic test to see if he did have autism. And when he was diagnosed at two and a half years, Smith said it came as a relief.

"It was really relieving to us. It was a really good day. We went to Chippewa after, and we went for this great walk. It was really good family time, and it was good to know what was going on."

But, Smith said the diagnosis also came with a lot of concerns and worries.

"It was also starting a new chapter of getting everything in place and learning about autism and learning about raising a son with autism – because it's a lot different. And then trying to figure out how to get him the supports he needs and what kinds of supports he needs."

Visit by provincial Minister 'step in the right direction'

Smith got Conor on the waiting list for the Ontario autism program, the provincial government's program to financially support families and people with autism, but she said with all the confusion and uncertainty around proposed changes to the program, she doesn't even know where he stands on the list.

In February 2019, Lisa MacLeod, who was then the Minister of Children, Community, and Social Services – and, therefore, responsible for the autism program – announced several changes she said were going to help clear the waiting lists and change the funding model to be age-dependent rather than needs-based. The backlash from families, caregivers and advocates was quick and fierce. 

Recently, Todd Smith, the new minister responsible for the autism file, said the government got it wrong the first time and would be working with the provincial Autism Advisory Panel to create a new, needs-based system. Now, the minister is completing a three-day tour of communities in northern Ontario to meet and hear from families about unique needs and differences they have in the region. The stops include Kenora on Aug. 6, Thunder Bay on Aug. 7, and Sudbury on Aug. 8.

Krista Smith plans on being at the event in Thunder Bay, Ont., and she said while she is "cautiously optimistic," she still has a lot of concerns.

"It's a step in the right direction. But the problem is there's nothing set in stone. And services here in the north are a lot different than services in southern Ontario ... and until he actually talks to people in the north, we won't be satisfied with whatever they are coming up with."

Parents really do know best

Sherry Fournier, the executive director of Child and Community Resources, travelled to Thunder Bay in order to meet with the Minister on Aug. 7 and to share with him the concerns she has about service provision in northern Ontario. 

Fournier said she will be focusing on two key priorities: ensuring families have access to supports and retaining professionals in the north.

"We've lost a considerable number of professionals, and honestly we can't blame them for moving on. They're a popular and talented group that are often recruited by other sectors, and the uncertainty that has come to the system has really resulted in a huge loss of expertise, not only in our organization but in northern Ontario."

Fournier added that when it comes down to creating a new system, parents really do know best.

"Parents have demonstrated over and over that they do know what is best for their child. In recent years they also have really formed a positive collaboration with experts in the field. Together they can come up with a system that is in the best interests of their children and that is evidence-based."

The public meeting with the minister in Thunder Bay will be held at the Child and Community Resources building on Aug. 7 from 10:30 a.m. to noon.