Autism program ignores many northern challenges

Ken Kellar
Local Journalism Initiative Reporter

The government of Ontario recently announced changes to the provincial autism program, but advocates for the northern reaches of the province say it doesn’t go far enough to address the region’s unique challenges.

The Ford government made an announcement on February 3 that changes would be made to the province’s autism program, including offering clinical services based on an individual child’s needs. Included in those services is speech language pathology, occupational therapy, applied behaviour analysis and more. Additionally the government will be extending funding to purchase eligible services and supports that parents feel are most important as the province continues to implement “a needs-based autism program.”

According to the province, families will also see a renewal of interim funding up to $20,000 based on their child’s age and $3.8-million in additional investments for diagnostic hubs that will help to improve access to assessment for their children.

However, Northern Capacity Building Advisory Committee’s Kenora-Rainy River chair April Szpara said the announcements leave out any language that could provide relief and stability for northern communities, something she said is an ongoing problem that has left the north severely lacking, especially as it pertains to professionals who could provide sorely needed services.

“The reason we have no capacity is because [the government] put the program on hold,” Szpara explained.

“By putting the program on hold, all of these professionals went, ‘well, I don’t have a job, I don’t have certainty so I’m out of here.’ A lot of them have left. Now we’re trying to say, ‘come on down, come to Fort,’ similar to what hospitals are doing with doctors, except we don’t have an incentive program for them. So we really have nothing in that announcement that helps the north to engage in capacity building and to ensure we have a program, and we really don’t know what that program is going to look like.”

Szpara noted that the government put the province’s autism program on hold after they were elected in 2018, and that decision has thrown many families into confusion and put them out in the cold, so to speak, as they wait for decisions to be made regarding the program and how it will be implemented in the future. Szpara said the way the government went about making these changes could have been done in a much more effective manner that kept families in a more stable position.

“It’s too bad the government put it on hold,” she said.

“In my world you don’t stop something so you can have a look at it and say ‘here’s what we think we’ll do with it later on.’ You allow it to continue while you’re looking into other things and then you do a transition from one program to another.”

But a bigger problem with the province’s announcement, according to Szpara, is that there is an inherent disconnect in the messaging.

“In this announcement they have changed some of the structure, but they have put caps,” she said.

“Although they said it’s on a need basis, they’re putting a cap on it and as the child gets older, the money gets less. I have a child who is 16 now, the needs don’t get easier, the needs just become different. So when a government says to me ‘if you want to apply for support, fill out an application,’ I say ‘another one? My kid has autism, that’s never going ot change, why do I have to keep reapplying?’ It would be different if it was a curable disease.”

The NDP released their own statement decrying the change in the program, with critic for Children and Youth Services Teresa Armstrong calling the decision “devastating for families of children with autism.”

“It’s not needs-based, and only a tiny fraction of the children who need help are going to get any at all,” Armstrong said in her statement. For many, it will literally result in a cut to the amount of therapy their children can get.”

There’s an inherent difficulty in governing a province as large as Ontario, especially when the northern regions are so far removed and more geographically distant than our neighbours in the southern end, and Szpara said it’s on the government to realize that a one-size-fits-all approach to programs like autism doesn’t serve this portion of the province. Adding to this north-south disparity is the fact that it’s proven particularly difficult to entice and keep professionals in our area, something she said the Ministry of Health is attempting to tackle.

“The north needs something different,” she explained.

“Whatever they’re creating for the south may not work for the north because of our geographic challenges, because of our sparse populations and the amount of money required to attract individuals that are committed to providing these services in these challenging settings. I wish they would take a footnote from the ministry of health. In order to attract specialists or individuals who are qualified to do, say, surgeries, they’ve had to open their wallet. This is no different. I think they need to open their wallet in order to ensure a viable program, one that will continue. We need it to be sustainable, we need a five year commitment of some sort, because without a five year commitment, no one is going to want to move here.”

“There are people attached to this,” she continued.

“There are children attached to this, families attached to this. We have quite a few families that are on a waitlist for services who have never received any services or funding before. This is a hurry up and wait game, which is awful.”