It’s nearing 2 years since former minister Todd Smith received the OAP Advisory Panel Report to help redesign the autism program … the program that Lisa MacLeod completely destroyed in the PC government’s first crack at an overhaul back in February 2019. MacLeod was demoted in June 2019.
Smith moved with zero sense of urgency, and failed to deliver a functioning program during his tenure. He was shuffled away in June 2021.
Now we have another new minister, and no clear timeline on when we may see real progress. Minister Fullerton also seems wholly uniformed about the program.
I’m here to tell you that the situation is much worse than most may realize.
Earlier this year, I wrote a piece that tried to break down the status of the program at the time.
In summary: It was a real mess.
Autism Ontario even shared the piece, perhaps echoing some frustration in the lack of progress on the program:
Unfortunately, very little has changed since then.
Slow launch of the new NEW program
Just a few days after I published the piece, Todd Smith cobbled together an “announcement” for the quasi launch of core services.
“Starting in March, about 600 children and youth from across the province who are registered in the Ontario Autism Program will be invited to participate in the launch of core clinical services.”
Up until this point the ministry had been ragging the puck, launching smaller and less time-sensitive pieces of the program, like Foundational Family Services.
But as the name implies, Core services is *THE* program, and still isn’t ready yet.
On July 13th 2021 the newest minister, Merrilee Fullerton, took to the podium to announce funding for the Youth Opportunities Fund, but when the press was given the chance to ask the minister questions for the first time on her new portfolio, they took the chance to ask about the autism program.
Fullerton did not do well.
Not only is it a bad sign that Fullerton had no idea whether there were kids in the new program, we’ve only hit 431 willing participants.
Think about that for a minute. When offered a spot in the test phase of the new program, only about 30% of families are taking them up on it, none of which actually received funding yet.
For more info on the core services invitation process, you can find that here:
Core Service invites are going out for the Ontario Autism Program – What you need to know
Invitation emails for the new core services pillar of the program finally started to go out yesterday (March 19th…
It was not mandatory to accept the invitation. You could stay where you were (whether that be in an old behaviour plan, using a current allotment on interim one-time funding, etc), and wait for the eventual conversion of everyone into a singular program, or you could test the waters right away, and potentially get more money than your child may currently be eligible for.
It’s a bit of a roll of the dice, and I think we’re seeing that with the low uptake rate.
People either don’t trust (or understand) the system, or are worried they’ll end up in a worse-off spot. A test phase may just seem like too much of a risk.
What’s wrong with the new program
There are a few critical issues that really hamper the potential of the new offering.
Before going through it, here’s the proposed funding allotments:
At first glance, this may seem like an improvement over the previous Childhood Budget model, and in some ways it is, but there are some major flaws that need to be overcome before the program can work in the way people hope it will.
1. Need is NOT being determined by clinical experts
This is a big one, and probably the most concerning aspect of the new program. The main reason the community was so against the MacLeod program was that it was not based on need. Many kids would be underserved, while others would be given more than they possibly need. It was both wasteful and insufficient at the same time.
The newest version of the program will put each child through a mysterious “determination of need” process. Basically, you have a 3 hour phone call with a care coordinator, and the way you answer their questions will decide the amount of funding your child receives.
Here’s an example of a Core Services Funding Summary for a 4–9 year old:
A child is “evaluated” on the 9 areas of need, each domain is put into a support level box, then abra kadabra … it generates a funding allotment (somehow).
If you undersell your child’s needs during the call, you may end up with the minimum amount. If you grossly exaggerate, you may end up with more money than your child could possibly need for therapy (reducing the available money left in the budget to serve other families desperate for support).
It’s a system that will favour the parents who are the most effective communicators. But for those with language/communication barriers … better luck next time?
It’s putting the onus completely on the parents to know exactly what their child needs, as well as all their strengths/challenges, AND to be able to completely and articulately relay that picture to someone on the other end of a telephone .. who has never laid eyes on your child.
I think most reasonable people would prefer the help of trained professionals to determine both the type of support their children could benefit from, as well as the intensity of therapy needed to best achieve their goals.
2. Funding is not on a sliding scale, but is awarded in set intervals
This was a huge red flag I noticed as soon as the funding windows were clarified on the ministry website. The determination of need process is not designed to give money based on recommended therapy hours, but rather meant to put your child into one of 2–4 possible boxes depending on their age range.
The worst example of this is the “Up to 3” group.
Say your young child was assessed by a behavioural analyst and recommend 12 hours of ABA therapy a week, at a cost of $33,000/year.
Well, based on the possible funding allotments, your child will either receive way too much, or not nearly enough.
There’s no middle ground.
The fact that each age category also has funding minimums is a problem as well.
For a child that may only need a few hours of occupational or speech therapy a month, even the base funding will be too much. Guaranteed minimums invite government spending waste.
Funding allotments should be on a sliding scale, and should not have set minimums.
3. Age Caps are problematic
Age does not determine need, but the Ministry has decided to impose age-based caps on the funding windows.
As an example, the maximum funding available drops from $65,000 to $41,400 once a kid turns 10.
Aging from 9 to 10 doesn’t make a child’s severe autism go away, or reduce their possible need for extensive support.
The OAP Advisory Panel did suggest that a form of spending caps would likely be needed to prevent the waitlist from ballooning again, but they advocated for discipline-specific service caps, not age-based caps. (eg, setting a maximum funding amount any child may be able to receive towards ABA, a separate maximum they can get towards speech therapy, etc).
Taken from their panel report on determining need (pg 27):
“Once the family receives their discipline-specific clinical assessment(s), it is recommended that the clinicians report their proposed service plans back to the Care Coordinator, who would then be responsible for updating/refining the forecasted service plan and funding needs to the ministry. It is recommended that all clinicians delivering OAP Core Services work within the discipline-specific caps and be consistent with Best Practice Guidelines.”
There’s a big difference between setting reasonable (professionally-guided) caps for individual therapy modalities and placing arbitrary age caps on funding.
Age has nothing to do with need, and imposing age caps will chip away at the hope of a truly needs-based program.
4. There is no appeal process
If a child is awarded a certain funding allotment, and it doesn’t match up with what is necessary to meet their needs (as assessed by a professional), there is currently no formal process available to appeal that funding decision.
If the program was well designed (which it isn’t), it would hopefully be rare to need to appeal.
In the new format, it may become very common to request appeal, as I don’t feel confident the funding given will actually match up well with the funding needed for appropriate therapy levels.
Until they fix the program to give professionals a bigger role in assessing need ahead of time (and thus the funding given), there needs to be a way to overturn the funding decision and have it reassessed, basing the amount on clinical assessment instead of the mystery box “determination of need” process.
Even in it’s current form, it will take YEARS to become effective
The glacial pace of this government’s work on the program has created the longest waitist this province has ever seen.
Remember when Lisa MacLeod thought it was unconscionable for 23,000 kids to be waiting for help? She also claimed they would clear the waitlist.
Instead, she made things monumentally worse.
The waitlist for needs-based therapy is now well over 40,000.
The Ford government likes to remind everyone they “doubled the funding” for the autism program, but their missteps and delays along the way have also resulted in a doubling of a waitlist.
Further to that, the ministry has had a hard time spending the money they promised they would, as they’ve had no functional program to funnel it into.
They created interim one-time funding (IOTF) as a stall payment to give at least some support to those on the waitlist, but it was always meant to be temporary (and it also kept the same problematic age brackets and funding amounts of the maligned Childhood Budget system).
The government’s inability to produce a program on schedule resulted in them pushing back the eligibility period for IOTF from the original cutoff date of March 31st 2020 … to a full year later. They take zero responsibility for the delays, blaming COVID instead of themselves.
Think about how this affects children registering for the OAP this year, on April 1st or later.
- They’re not eligible for a behaviour plan (the old program), Childhood Budget, or Interim One-Time Funding
- There are ~47,000 other kids ahead of them on the waitlist to be brought into the new program before them
- It’s taken the Ministry about 5 months to convince 431 families to agree to enter the new core services program
- The Ministry is aiming to only get 8,000 more kids into the program before the end of the year, if they can even accomplish that
How long until a newly registered child will gain access to the new program?
3 years? 5 years? Never?
There’s no way to know. I certainly don’t expect the new program to enroll kids quickly, even once they’re more established.
Given the likelihood of a slow build into the new program, while also considering the need to spend the promised $600 million/year, it’s always possible they’ll create another waitlist support, whether it be a round of IOTF for newly registered kids, or something else entirely. Once the ministry knows what kind of extra money they may be sitting on due to their inability to run their own program, we may see something offered for these newer diagnosed kids in the future.
How the program SHOULD work
Here is a straightforward way for how the program could work better:
- In order to better understand the child’s need, the family should receive initial funding to pursue clinical assessments with professionals in any of the eligible fields the family feels could benefit their child (eg. separate assessments with an ABA provider, speech therapist, occupational therapist, etc).
- The individual assessors would provide a recommendation for treatment intensity for the respective types of therapy (eg. A child could be assessed to need 25h/week of ABA, 1 hour/week of speech, and 2h/month of OT)
- That info would go to the ministry to determine the funding amount the child would need to cover the recommended therapy (adjusted to meet appropriate service caps), with special consideration for when access to therapists is an issue (northern/rural communities, etc, where travel concerns may need to be accommodated)
That’s it. That’s the program.
Once the family is set up with providers they work well with, the child would be re-evaluated on a regular basis to adjust clinical hours, based on changing need, and tweak their funding levels when appropriate.
It doesn’t need to be more complicated than that.
It’s been years since any child has gained access to meaningful needs-based autism therapy in Ontario, and that needs to change immediately.
The old Coteau program just needed more control, more choice, and more money.
If the Ford government want to cling to any hope of salvaging this program, they need to act fast to make some crucial foundational changes.
The MacLeod program was a disaster.
The Smith program has taken years to finally launch, but it still misses the mark.
Please let the eventual Fullerton program be the one the autism community can finally get behind.