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Orangeville autism family shares concerns with Ontario’s funding model for clinical services, waitlists, information delays

August 3, 2023   ·   3 Comments

By Sam Odrowski

An Orangeville family is speaking out against the province’s new service funding model for children with autism.

Vivian Petho and her husband, David Vahey, who received an autism diagnosis late last year at age 39, said there are several problems with the Determination of Needs (DON) Assessment conducted by AccessOAP (Ontario Autism Program). Vivian completed the assessment for her and David’s 10-year-old son Solomon, who is autistic, in April to determine how much money they’d receive this year for various forms of therapy and clinical autism support.

Vivian and David have several concerns with the assessment itself and the lack of transparency surrounding it for fellow parents. The DON assessment is completed through a multi-hour phone call administered by non-medical professionals at the for-profit business Accerta, which the provincial government contracts to operate AccessOAP.

AccessOAP is also made up of Serefin, Autism Ontario and McMaster University. It administers funding for families to access a wide range of autism services.

The funding is broken into categories based on the intensity of support needs, either limited, moderate or extensive. Individuals with extensive needs receive the most funding, while those with limited needs receive the least. This ranges from $6,600 to $65,000 per child, depending on the level of support they need and age.

David and Vivian have been fortunate to receive the highest level of funding through AccessOAP for Solomon’s age range, but none of the allocated money has been used yet due to a lack of autism service providers in the area.

“I can’t use the money,” said Vivian. “I’m on waitlist because we’re in a smaller community, so there’s only so many vendors available for speech [therapy] or anything else.”

Vivian says she’s on a three-to-six-month-long waitlist but only has 12 months to spend the $65,000 they received from AccessOAP in May. 

“All that money’s just going to sit in my bank account until they [the government] asks for it back,” Vivian remarked. 

But she isn’t alone in having her son waitlisted, as nearly 100,000 children with autism in Ontario face years-long waits for publicly funded physical, occupational, and speech therapy.

This can result in lifelong problems with mobility, communication and other essential life functions.

In addition, an internal assessment recently obtained by the Canadian Press through a Freedom of Information request notes that most children in Ontario who are waiting for publicly funded core autism therapy won’t receive it any time soon.

The program’s $667 million budget serves about 20,000 children with core clinical therapies, according to the document. However, approximately 60,000 children are seeking services through the program, and 7,000 more are added to the program’s waitlist annually. 

With more children registering for the program than aging out each year, most kids will not receive core clinical services in the short to medium term unless the program receives additional funding.

Vivian said a key issue with how Ontario handles autism services is a lack of transparency.

She said other parents of children with autism aren’t getting enough needed for their children due to the limited available information on how the DON assessment call works and how to properly prepare. And when they appeal the funding decision, they’re sometimes left with even less money. 

Vivian also noted that the funding from AccessOAP decreases as children get older, but their level of need doesn’t always decrease with age, and they could require more support instead of less.

She added that another issue with the current autism system is how funding is doled out to parents.

Previously, under the Interim One Time Funding the province provided to parents while establishing the new DON assessment system, money could be spent on things considered beneficial to their children with autism. This could be a play centre for gross motor skills or a specialized bicycle to help balance and coordination. A receipt would be turned in, and the parents would be reimbursed.

Now, before an item is purchased, a letter must be written by a specialist and submitted to AccessOAP explaining why it is needed and that letter is then approved by AccessOAP. Vivian said this could take three months, so by the time a purchase gets approved, the child may outgrow the item or have different needs that require more immediate attention.

Vivian and David struggled to get the notes from AccessOAP regarding their DON call after being told by their care coordinator that they could access this information.

“In my introduction call with my AccessOAP care coordinator, they said at any point in time, I can request a transcript or notes of any of the calls that I have,” said Vivian, who made the formal request for the DON assessment call notes on April 26. “I don’t understand – if they’re asking for this very personal information about my child, why I don’t have access to it. I should have the right to see it.”

Vivian was denied access, which she said is unusual, considering any other health records or information regarding Solomon’s support needs are accessible.

David and Vivian put in a request with AccessOAP for this information but had to wait roughly 60 days to receive it.

They received an email from AccessOAP on June 15 telling them that they had to delay their response until August 24, 2023 at the latest, which would have been in violation of their 90-day limit to accommodate requests under section 314(3) of the CYFSA. David notified AccessOAP of the violation and told them that he was filing a complaint with the Information and Privacy Commissioners’ office in response. Eight days after this, and roughly 60 days after he made the original request for the DON assessment notes, he received a response.

The cited reason for the delay was “Staff changes, consultation with legal and other necessary parties to determine what information we are and are not able to provide to you in response to your request, and administrative time necessary to obtain and prepare the records.”

But David and Vivian both said it’s hard to understand why it was so difficult for AccessOAP to send them the comments Vivian made during the DON assessment call. They also said it was disappointing they had to wait so long to get this information.

“All I want is the notes on the call so I have them for my records going forward because I have to do this call with them [AccessOAP] every year until my child ages out [of the program] and he’s only 10, so he’ll be doing this until he’s 18, or as long as this program is still running,” Vivian noted. “All I’m asking for is a very simple request that I was told was within my rights from the get go from the care coordinator.”

She added that having the notes to reference helps her to talk about what’s changed or stayed the same.

“It gives me a point of reference going forward the same way that every year, my son gets an IEP [Individual Education Plan] from school and it gets tweaked and changed according to what his needs are for the current year,” Vivian explained.

She said having the notes also allows her to let other parents know what to expect during their DON call to alleviate some of their anxiety.

The DON call for Solomon took three and a half hours, and Vivian said one of her biggest issues is that it solely focused on Solomon’s deficiencies or impairments instead of abilities.

“There was nothing about their strengths, it’s all about their weaknesses,” she said. “You have to sit there and just talk about all the bad things that there are versus any of the good things that your kid can do. Honestly, afterwards, I just felt like sitting there crying, because it’s just, it’s overwhelming that I have to put my child in such a place that makes him sound like he’s incapable of anything.”

She added, “I went through great lengths to get information from a speech therapist who used to see my son, from his teachers, just to have compile all this information for the call. I felt like I had to do all this work, just to make sure my kid would [receive proper care].”

While each province in Canada has its own system for assisting people with autism, a national framework is being developed so there’s the same system nationwide.

With each province providing varying levels of support and some parents of children with autism switching provinces to receive better care, David said the national framework is welcomed news.

In other provinces, such as British Colombia, an autism diagnosis for a child automatically entitles them to a certain level of funding. However, in Ontario, under the new system, after an autism diagnosis, parents must plead with Accerta’s intake call staff during the DON assessment to receive anywhere from $6,600 to $65,000, depending on their child’s age and level of need.

David noted his concern with Accerta’s handling of the DON assessment calls for AccessOAP. 

“They’re not medical professionals, they’re just using a tool [rubric] designed by professionals,” he remarked. “You have to go through these people to get medical therapy, but they’re not medical professionals.”

David also noted that from his perspective as a person with autism and a parent of a child with autism, it feels like the government focuses on the impairment first, what’s wrong with someone, rather than the fact they’re a human being.

“They see the impairment. They don’t see the child or the person,” he remarked.

Going forward, David and Vivian are looking to advocate for improvements to the autism system and overall accessibility within the town. Vivian recently joined Orangeville’s Equity, Diversity and Inclusion Committee, and David is now part of the Dufferin Accessibility Committee.

They said it’s important to use their voice to advocate for their son and help others struggling to navigate Ontario’s autism system. 

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