Update on the Ontario Autism Program — It’s not going well.
If we look back to when Minister Todd Smith received the OAP Advisory report on Oct 30th 2019, he said:
“I am confident the panel’s recommendations will serve as a strong foundation for the new Ontario Autism Program. Implementation of the new program is planned for April 2020.”
Well, that didn’t happen.
Just 6–7 weeks later, the Minister announced that the program would be delayed.
The first phase of implementation will begin in April 2020, to be followed by additional phases throughout 2020 and 2021.
The current “program” is a messy patchwork of previous failures and current half-measures, with very few children receiving the actual support they need. The new program also seems nowhere close to being ready.
This should be viewed as a monumental failure.
Lisa MacLeod took a sledgehammer to the Ontario Autism Program, and it’s going to take years to rebuild it.
Prior to the dismantling of the program, there were four main groups of autistic kids in Ontario:
- Those on the waitlist for service from the old program
- Those in service, receiving needs-based ABA therapy
- Those who had been through the program, but then removed (whether for valid or invalid reasons)
- Those who never applied for the program (as it maybe had nothing worthwhile for them before)
With the promise of more choice in available services, there’s been a steady increase in the number of kids registering (or re-registering) for the program. The total number of kids has jumped from about 35k to 45k in less than 2 years. This is significant.
There was always going to be newly diagnosed kids registering for the program, but that previously would have been balanced-out by kids aging-out of available services (the old program was geared more towards younger kids, and of a certain profile).
The current interim “program” is available to all ages, so suddenly everyone is eligible for at least a $5,000 cheque (or $20,000 for the younger kids).
With the current “needs don’t matter, here’s your cheque” approach the government has taken, the program’s registration numbers are understandably up.
With the frequent changes over the last several years, the landscape is different now, and we have the following groups to think about:
- “Legacy kids”
Still in service under the old version of the OAP, these kids were called into the program before the former Minister Lisa Macleod froze the waitlist. They are receiving needs-based ABA therapy (though likely at a reduced amount due to covid restrictions).
They were promised extensions to their behaviour plans, to keep them in service. It seems, though, that many have been transitioned into Childhood Budgets instead (whether that be willingly, or unwillingly).
There were around 10,000 kids in service when Todd Smith took over the autism file, but that number has been dropping ever since.
“If you have an existing behaviour plan, it can be extended up to its current level of intensity, or less where clinically appropriate, until you transition into core services in the new needs-based autism program.”
The core services mentioned above are what most would consider the critically important part of the program (ABA, speech, and occupational therapy, etc).
Due to Todd Smith’s inaction on the file, these services are not yet available in the new program.
2. Childhood Budget Kids
First announced by Lisa MacLeod in February 2019, and slated for launch in April 2019, the first funding cheques didn’t start to trickle out until late June.
Nearly universally panned, this “program” was designed to try and clear the waitlist within 18 months, by giving every child something, but assigning the amount based on age, and age alone. It completely ignores the need curve, and results in both waste and insufficiency at the same time. It’s not exactly a fiscally responsible way to run a program.
Mike Moffatt wrote a great piece on this.
Despite outrage from parents and professionals alike, Lisa MacLeod continued to defend her plan, until the day she was unceremoniously demoted to Tourism.
Several “enhancements” were announced in late March 2019 to widen the types of services that could be covered, and the means testing component was removed. The Ontario Government also announced they were nearly doubling the available budget for the program, but then later failed to spend it.
Even with the changes, the plan was still a pile of garbage.
Despite Todd Smith admitting early into his tenure as Minister that they didn’t get the redesign right, they were still handing out new Childhood Budget invitations as recently as December 2020.
11,447 invitations have been issued for Childhood Budgets since their inception, though we have absolutely no idea how many of those kids actually received their funding.
“If you have received a childhood budget, you may be eligible to receive interim one-time funding after submitting your expense form and if you have not yet transitioned into core services in the new needs-based autism program.”
The Ministry announced in January 2020 that kids who received a childhood budget would be eligible for interim one-time funding after that. Childhood Budgets were not going to be renewed, but there was no program for their recipients to be moved into, so as kids now considered to be “in service,” they were to be given another cheque — but with a different label.
3. Interim One-Time Funding kids
This stall-payment program was first announced in Dec 2019, at a press conference that families attended in hopes of good news, but were told instead that implementation of the new program would be delayed.
As I see it, this form of funding was created for a few reasons:
- The Ministry knew their spending so far was under budget (later confirmed by the FAO), and they had to come up with something to get money out the door.
- Since Todd Smith committed to moving away from Childhood Budgets, but didn’t have anything close to a new program ready to offer, the Ministry created this interim solution of essentially offering the exact same thing as Lisa MacLeod did (same amounts, same age cut-offs), but in a “one-time payment” vs an annual allotment (like Childhood Budgets were meant to be). They’re basically still running Lisa’s program.
The Ministry could have let more kids into the old program, or made use of renewable payments like the 8k/10k funding that Michael Coteau used as a bridge program. They could have created some semblance of needs-based therapy until the new program was ready.
Instead, having learnt nothing, they took the easy way out, and just stuck to their same terrible program.
Anyone who was not in service would be eligible to receive the one-time funding, as well as kids who spent and reconciled their first Childhood Budget.
Originally there was a planned deadline to apply (March 31 2020), but the Ministry changed their minds, keeping it open-ended instead (and it still is):
Due to the impacts of COVID-19, we have extended the March 31, 2020 deadline to submit your Ontario Autism Program registration form and supporting documents to be eligible for interim one-time funding. We will establish a new deadline at a future date.
As of the end of 2020, we know that 28,784 kids were issued an invite to apply for interim one-time funding, with no indication from the ministry as to how many have actually received a cheque.
4. Waiting for a funding invite
Without an eligibility deadline on interim one-time funding, the Ministry has just been continuing to issue invitations, and most kids should have received theirs by now.
The only people not invited yet would be the ones who only just recently applied to the program, say in the last few months.
Once receiving their cheque, it’s likely to be a very long wait for these kids to gain entry into the new program and receive any additional funding support, unless further changes are announced.
Quick recap: There are several different cohorts, all receiving a different form of funding, and they all have to somehow be folded into a new singular program, with no announced plan for how that will happen, or how long it may take.
Still with me? Okay, let’s continue.
So what has the government been doing for the last 15 months?
Good question. Not much.
There are supposed to be 4 main pillars in the eventual program, but the Ministry has only partially addressed them at this point in time.
So far, the offerings have been very underwhelming, and include:
- Hanen Centre early language intervention programs, announced in December 2019
“You are being offered an online program for parents that gives you the knowledge and skills to help your child develop improved social communication skills.”
- Mental Health Training, also announced December 2019
“In-person training sessions organized by Child and Parent Resource Institute (CPRI), to community-based physician and medical practitioners, community agencies, educators, and caregivers to increase understanding of children on the autism spectrum and co-occurring mental health challenges”
- The launch of Foundational Services, announced in August 2020
These types of foundational services were previously available for free under the Liberal government, then taken away in 2019.
Regional Providers like CHEO were then forced to change their program offerings into a fee-for-service model.
Families were not fooled but this announcement, nor were they pleased by the lack of progress on the actual program launch.
Core Services were nowhere to be found.
The Minister provided the following update in October 2020:
Apart from talk of funding extensions, and the already-announced Foundational Services, he mentioned the call for applications for an Independent Intake Organization (IIO), to happen in the near future.
Their duties would include:
The fact that the Ministry was only just now taking this step is pretty troubling, because it’s hard to see any movement of kids into the new program until this new organization is up and running, and staff are adequately trained to serve their proposed function.
“Once the selected applicant and the ministry finalize a contract, the unsuccessful applicants will be notified in writing in spring 2021.”
You can find the full document calling for applications here.
There’s also a document showing how the Ministry is going to score the applicants, to help them chose who gets the contract.
The plan for an independent intake organization was not a new one, first suggested way back in March 2019 when Lisa MacLeod was still Minister.
Per the article:
“Right now in Ontario, families access funding through one of nine regional agencies. Moving forward, however, the PC government plans to establish a single, independent intake agency that will handle all requests for financial assistance. The province says the agency will be up and running within one year from April 1 [2019].”
So they wanted the organization to be up and running by April 2020, but Todd Smith didn’t even call for applications until December 2020. Great work guys. Way to waste AN ENTIRE YEAR.
And not only is the timing of all this troubling, so is some of the language being used.
Press Progress recently covered this issue, and it’s worth taking a couple of minutes to read it:
This Ministry document suggests that the amount of funding each child receives will be assigned by the newly minted ‘Care Coordinators,’ armed with one day of training to use a needs-based assessment tool.
Sound terrible? You’re right.
“The determination of needs 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.”
So clinical assessment by professionals apparently will NOT determine how much funding a child gets. A Care Coordinator gets to make that call.
This is NOT what the Advisory Panel recommended. They were clear about clinicians having the final say:
“The Panel strongly believes that clinical judgement and assessment should be used to guide recommendations related to the type, nature and intensity of clinical services.”
The government wants to keep that control all to themselves.
None of this feels reassuring to parents who have been fighting for years, trying to ensure that the proper supports will be in place for their kids.
After waiting as long as we have for the poorly-run Ford government to sort this all out, the whole process seems so hopelessly flawed.
So what happens now?
The current situation is a real mess.
While some kids are still in service, and a few may still be trying to use up the rest of their Childhood Budget, the majority of kids currently have an interim one-time funding cheque right now for either $5,000 or $20,000.
The amount received is almost definitely insufficient to achieve meaningful therapy (especially for older kids), so many have turned to whatever else they can get approved for the time being. Therapists aren’t easy to come by right now either, especially in rural or Northern communities. Capacity has taken a major hit due to funding uncertainty created by the Ford government.
On the other side, families may be sitting on more money than they need, or even know what to do with.
Take a minute to put yourself in someone else’s shoes. Imagine you’re the parent of a severely autistic child, who after being assessed by professionals, was recommended a full slate of therapies that would help teach them important life/safety skills to make them a little more independent in the future. It’s not unreasonable for this level of support to cost close to $80,000/year. Now imagine you were on the waitlist for the old program for 2 years (where intensive behavioural therapy could be fully covered), later found out Lisa MacLeod froze that waitlist, and then after all your waiting, your child was given a meagre $5,000, and put back on the waitlist indefinitely. Then, to put salt in the wound, you hear about families sitting on $20,000 cheques who don’t have any need/intention of seeking therapy, and are instead filling their house with things like trampolines, iPads, playgrounds, and every sensory toy they can think of, because if they don’t fully use their funding cheque, they have to pay it back. Of course they’re going to try and spend it all.
Is this the “equitable” autism program Lisa MacLeod imagined?
This isn’t just hypothetical. This is reality.
This is also not to say that families who have spent years with nothing don’t deserve to help their child in any way they can. It’s the ridiculous waste out there that’s so heartbreaking for kids with more complex needs going unmet. This just could have been handled so much better by the Ministry, especially when they’ve had the money available to do so.
Every child should have access to the support they NEED, as recommended by professionals.
No more. No less.
The Ontario Autism Program, at its core, is a therapy program. Programs like SSAH should be enhanced to more fully meet the non-therapeutic needs of not only autistic children, but children of all disabilities.
Vulnerable children are being left behind, and this was all preventable if the Ford government would have made fixing the program a priority like they said they would.
“Our government has made the redesign of the Ontario Autism Program one of our top priorities.” — Minister Todd Smith, Oct 30, 2019
They’ve continued to drag this out for years, with the finish line still way off in the distance.
Make no mistake – Todd Smith is actively delivering Lisa MacLeod’s program right now. He may call it interim one-time funding, but Lisa’s Childhood Budgets are alive and well. Until a new program is ready, we’re all still in the indefinite nightmare that started 2 years ago.
The whole situation is infuriating.
It’s been a colossal failure from the moment Lisa MacLeod got her hands on this file, and Todd Smith has continued that failure to this day.
Heartless decisions.
Ignoring public outcry.
Unnecessary delays.
Deliberate underspending.
No program launch in sight.
This is the story of the Ontario Autism Program under Doug Ford.
