Families worry new Ontario Autism Program won't be truly needs-based

New information about the province's plans for the Ontario Autism Program has some advocates worried that it won't be truly a needs-based program.

It's been more than a year and a half since the Ford government promised a move to a needs-based program. That means providing children therapy based on their individual needs, rather than a blanket amount based on age. 

The province has said it would be in place this year. This week, some parents were upset to see a document posted online, seeking applications from organizations interested in handling intake for the program. 

"For a government that kind of likes to say they're cutting the red tape and they're fiscally responsible, adding another person or administration is another layer of bureaucracy that this government is fundamentally against, or they say they are," said Sudbury parent Sean Staddon.

The document indicates that a "care coordinator" will assess a child's needs at least once a year, to determine the level of funding for which they are eligible. Staddon, who is also a board director on the Ontario Autism Coalition, said he worries about people who are not clinicians determining if and how much therapy a child will receive. 

"This is kind of the same attempt to regulate the cost of a child without any kind of clinician input. And that goes against what advocates have been calling for for years," Staddon said. 

'Gut wrenching'

Parent Chantal Chartrand said reading the document was "gut wrenching," as she believes it means the revamped program will not truly be needs-based — and her five year old daughter may continue to go without therapy she needs.

Since being diagnosed with Autism Spectrum Disorder at age two and a half, Chartrand said her daughter "has not received even close to the amount of therapy she should be getting."

"When children have access to therapy, you see gains every day. New words, new skills … it's necessary really," Chartrand said.

As Chartrand read about the annual assessments that will be conducted by the care coordinators, she said she worried it could mean a return to so-called "benchmarks" — a system where children could lose funding if they aren't meeting expected milestones, or exceeding them. 

It's something Staddon is worried about as well. As his family waits for needs-based therapy, Staddon said he's paid tens of thousands of dollars out of pocket for therapy.

"I'm worried that my little girl has made such great, you know, strides in her treatment that maybe when this person assesses, maybe they'll say that she doesn't need anything from the government and that she's doing just fine. That's what I'm worried about, and for the other kids out there."

Ministry response 

A spokesperson for the Ministry of Children, Community and Social Services said minister Todd Smith was not available for an interview.

In a statement to CBC, the ministry said the "Independent Intake Organization will be accountable to the ministry for overseeing and administering key elements of the Ontario Autism Program," including employing care coordinators.

The ministry said it is "working closely" with clinical experts to develop the standardized process for determining a child's support need. And says that "process is separate and distinct from the clinician-based assessment that would be completed by a clinician as a first step of core clinical service provision."