Why the Ontario Autism Program is STILL not working

It’s been over 3 years since former MCCSS Minister Lisa MacLeod sent the Ontario Autism Program (OAP) into a downward spiral.

Her attempt at “fixing” the program was a disaster, resulting in her removal from the file just months after launching her problematic Childhood Budget system.

Former radio broadcaster Todd Smith was brought in next as Minister, but proved himself to be an ineffective leader, accomplishing very little during his 2 year tenure. He was shuffled away in June 2021.

We’re onto Minister #3 now, and Merrilee Fullerton did not exactly hit the ground running once appointed …

We’re now almost a year into Fullerton’s time on the file, and very little progress has been made with her at helm.

The waitlist for actual needs-based therapy has never been longer, and the *new* program that 50,000+ autistic kids are waiting for is still filled with problems that aren’t yet being addressed by the Ford government.

Despite its many flaws, the Ford government is pushing forward with their version of the new new Ontario Autism Program, but are doing it very very slowly.

So many cohorts

With all the attempted changes to the program over the last several years, we’ve got multiple different cohorts that all somehow have to get folded into a single group of kids in a single version of the Ontario autism program.

Behaviour plan (“legacy”) kids

There are still 3,000+ kids enrolled in the old Liberal behaviour plan version of the OAP.

Due to constant delays in the new program launch, these kids were granted multiple extensions to their contracts, or else given the opportunity to transition into one of the other temporary PC funding options.

Under the old plan these children received funding according to the needs, though only for ABA therapy (which not everybody wants or needs).

From the OAP website:

“Families of children with existing behaviour plans will have the option to enter core clinical services in the order that they registered in the Ontario Autism Program, or extend their plans until spring 2023, at which time they will begin to transition.”

The promises of extending the behaviour plans until kids entered the new core services program started years ago. Due to the Ford government’s inaction on the autism file, the new program is still not ready for them, so the government has had to commit to their promise much longer than they would have originally anticipated.

Childhood budget kids

Much maligned by parents and experts alike, Lisa MacLeod’s Childhood Budget model was her big idea to #ClearTheWaitlist, because she felt a wailist of 23,000 was unconsionable and unacceptable.

Her plan was to try and give everyone something, but it was done with seemingly no forethought, and was nearly universally panned for its terrible design.

It was age-based rather than needs-based, giving some kids far more than they would ever require, while leaving the families with high-needs children no chance of funding the therapy recommended for their kid’s development. It also came with lifetime caps, and funding was originally announced to be clawed back based on parental income. It was a mess.

Despite sitting on a cash hoard of hundreds of millions of dollars, the MacLeod-run program was launched at a glacial pace, further worsening the situation.

We know that ~11,000 kids received “invites” to apply for Childhood Budgets, though less than 9,000 payments went out.

Read more below on why I have zero trust in the numbers released regularly by the Ministry, and how it’s really anyone’s guess how many actually received CB cheques.

Interim “one time” funding kids

Once Lisa MacLeod was demoted, and Todd Smith came in, he promised it was “time to move away from Childhood Budgets.”

“We realize we didn’t get it right the first time … There has to be a different approach to this, and the needs-based approach is something we have to move forward with. “ — Todd Smith, 2019

Despite this positive new approach announced, the Ministry failed to meet their own deadlines, and delayed the launch of any semblance of needs-based support. Years later, we’re still not there yet.

Instead, Smith proposed an “interim one-time funding” model (IOTF), making every family on the waitlist (at the time) eligible to apply for either $5,000 or $20,000 as a bridge until they enter the still-under-construction needs-based program.

Same age groups as the Childhood Budgets. Same amounts.

It was basically the same program under a different name, but meant to look more temporary.

It was still just as wasteful, giving more than needed to many, and not nearly enough to the ones that needed the help most.

In the same way that the Ministry offered renewals of behaviour plans because they couldn’t get their act together on the new program, recipients of interim “one-time” funding were now eligible for a second age-based and wasteful payment.

From the OAP website:

If you have already received interim one-time funding, you may be eligible to receive an additional payment of $20,000 or $5,000 based on your child’s age.

Accepting this funding will not impact your eligibility for the needs-based Ontario Autism Program. Your child or youth’s position on the Ontario Autism Program waitlist will be maintained.

For a little perspective on this, there would be kids out there who don’t require a lot of help, but received $20,000 from their first IOTF, had no real need for it in terms of therapy, so used it to fill up their lego cupboards, buy the biggest trampoline they could find, get a new bike, scooter, an inflatable pool, etc. … then reconcile that funding and get an additional $20,000 to use on “stuff” again.

Meanwhile, there are families out there with kids who need significant support, some prescribed therapy in the range of $80,000+/year, and they may only have received a $5,000 cheque due to age. This would make it completely impossble to access the support their child desperately needs.

In no way should this be consided acceptable from a program that has a budget of $600 million dollars a year.

It’s heartbreaking that money has been spent so irresponsibly when there are so many vulnerable children needing real help.

New applicants, ineligible for the previous offerings

Back when Todd Smith wanted us to believe that a true needs-based program was coming in April 2020, there was a cutoff set for March 31, 2020 to apply for the OAP in order to be eligible for IOTF.

The Ford government realized there was no way they would have the new program up and running, and no other means to hand out the cash they promised they would spend with their increased budget, so that deadline was initially postponed indefinitely.

The new deadline was later set as March 31st , 2021, a full year later than their first deadline.

The New Program

For any family that registered for the Ontario Autism program in April 2021 or later, they are no longer eligible for Childhood Budgets or IOTFs, but instead just have access to some of the new offerings of the program while they wait for core services … maybe.

There are multiple pillars to the new autism program, but they have been launched by the Ford goverment in the worst possible order.

Core services, as the name should imply, is what most would consider the central feature of the autism program. It’s through this portion that families will receive the funding to be used towards therapy (ABA, SLP, OT, etc). Despite being years into program development, this key portion is only just now coming available. More on this later.

Here’s what has become available so far:

Foudational Family Services

Officially “launched” in August 2020, Foundational Services were actually something previously offered at no cost under the Liberal program, taken away during the Lisa MacLeod period, made available briefly at a cost (through your Childhood Budget), then launched anew by Smith … way before the much more needed and critical pieces of the program.

“In the midst of the uncertainty, CHEO has had to put together a list of programs and services with a fee list, as required by the new program. It ranges from intensive, ongoing therapy to school readiness programs and family workshops lasting a few hours.”

The types of workshops available under the “new” Foundational Services are not as new as the Ford government would like us to believe.

This is taken from the Ontario Autism Program Guidelines document, dated January 2018 (pre-Ford):

So, not off to a great start.

Caregiver-mediated Early Years Program

Next to launch was the Caregiver-mediated early years program in June 2021, nearly a year later.

Eligibility is limited just to kids aged 12–48 months, so only those lucky enough to have an early diagnosis (likely from paying out of pocket for an assessment) will be able to take advantage of this.

From the OAP website:

Entry to School Program

In late 2021 the next small segment of the OAP was announced.

Only a small number of kids will benefit from this as well, as they have to be age 3–6, and not yet in school or receiving certain services from the program already.

From the OAP website:

In a recent article about the province-wide spin-a-thon raising money for the Ontario Autism Coalition, we got to see a chart of Ministry numbers outlining how many kids have been enrolled in each segment of the OAP so far:

As of the end February 2022, only a little over a thousand kids are enrolled in each of the CMEY or ETS programs, when there are over 50,000 autistic kids in Ontario looking for help.

Scan over to the CCS number, and we get to the most disappointing stat of the Ontario Autism Program.

Core Clinical Services

Back in February 2021, Todd Smith proudly announced the launch of Core Clinical 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. Once families have received their funding allocation, they will then work directly with a clinician of their choice to develop treatment options and plans for their child. The feedback from families on their experience will be critical in helping the province evaluate and refine delivery of the program.”

“It will expand through the year to include 8,000 more children by the end of 2021, Smith said, noting that the phased approach will allow the government to refine the program.”

So they were running a test phase first, and promised 8,000 more kids enrolled before the end of 2021.

Those numbers started to get pretty wishy-washy just a few months later when a new QP Briefing piece came out in May 2021:

“The provincial government has reached its target of enrolling an initial 600 children in “core services” in its new autism program and aims to have 8,000 children moved off the wait list by next fall.”

Next. Fall.

As in 2022.

“The ministry also said it expects to name the “independent intake organization” soon. The organization will manage registration, the wait list for core services, funding for families and the hiring and training of care coordinators among other duties. According to the government’s website earlier this year, the goal was to have the organization “begin operating in summer 2021,” but that timeline is no longer listed.”

This crucial orginzation, the people that are basically going to run the whole show, didn’t even exist yet, and wouldn’t for quite some time.

The call for applications came back in December 2020 …

… but wasn’t selected until December 2021:

“The IIO is scheduled to start supporting families in spring 2022 and will play a key role in providing more families with funding to purchase core clinical services for their children and youth.

The government is on track to meeting its commitment of providing 8,000 children with funding for core clinical services by fall 2022.”

Anyone think they’ll meet their new deadline?

Remember that despite the “launch” of core services in early 2021, they only have 645 confirmed enrollments into the program as of the end of February 2022.

Over 50,000 kids are still waiting for their turn to enter this new program, which in its current form, is still seriously flawed. They will also be waiting for many years, which was the problem to begin with.

This has been nothing short of a complete failure by the Ford government.

The Ontario Autism Program, under Doug Ford, has been a disaster from start to finish. They have consistently failed to meet their own deadlines, and nearly everything they’ve put forward has been met with serious criticism, because they just don’t seem to be listening to reason.

Like I said in my recent oped in the Ottawa Citizen:

To really get this right, the government must swallow its pride and acknowledge past and current failures. It has to be willing to listen and make the necessary changes to help this new program succeed, and this has to happen now.

Doug Ford needs to make this a priority if he has any chance at salvaging this program, and so far he has made very little effort to get personally involved.

If he’s not willing to make an effort on this, it’s time to elect a government that will.

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Patrick Monaghan

Patrick Monaghan

Dad to 2 kids on the spectrum. Autism Advocate.