Is the new Ontario Autism Program actually needs-based?
After taking some time to digest the information from Todd Smith’s latest announcement, it’s time to dive in and see if there was enough in there to work with.
Here were the key pieces to the announcement:
- 600 kids to be invited into a pilot program to test out the new needs assessment tool for core services. It will include various ages, regions, and funding situations. It’s not clear how those kids will be chosen.
“The feedback from families on their experience will be critical in helping the province evaluate and refine delivery of the program.”
- Renewal of Interim Funding – For kids who have received a Childhood Budget or Interim one-time funding, they should be eligible for a second cheque (still either $5,000 or $20,000, based on age)
- Urgent Response services – This part isn’t ready yet, but they announced that they’re “initiating a community-based proposal process to identify organizations in the sector” to deliver this piece
- A small investment ($3.8 million) in diagnostic hubs to try and improve diagnosis wait times
- Legislation to be introduced to regulate ABA therapists
Lots to go through here. We’ll start with the last piece, and work our way back up to the start.
Regulating ABA
This part of the announcement was a positive one, at least at face value. I think almost everyone would agree that this is a necessary step to take in terms of public protection.
You may be thinking …Hasn’t the provincial government already said they were going to do this?
Yes. Multiple times.
Todd Smith himself was taking about this last summer:
“We are acting on the clear direction we’ve received from experts and families of children with autism. Our commitment is that behavioural clinicians will be regulated like other health professionals.” — Todd Smith, Aug 2019
You look back even further, and you can find stuff like this:
That’s from 2017, back when Michael Coteau was still Minister.
So yes, saying you’re going to regulate ABA is an easy way to score points, but acting on it is a completely different matter. Let’s hope for real progress on this soon.
From the recent press release:
“The government will introduce legislation to regulate ABA as a new profession under the College of Psychologists of Ontario, beginning with applied behaviour analysts in supervisory and assessment-focused roles.”
Here’s a useful thread on where things stand:
3.8 million additional investment in diagnostic hubs
This is also a positive, if invested well.
Wait times for an autism diagnosis can be a real problem, and you need that diagnosis before you can enter the program.
Remember that Lisa MacLeod also spoke of increasing funding to diagnostic hubs in her infamous Febraury 2019 announcement, as a way to soften the blow, and give her something positive to quote. She also promised to clear diagnostic waitlists with that last investment. Did that happen?
Don’t think so.
I’m not saying this funding isn’t a good thing, but I’m sure they put a few million dollars into this to reduce the risk of the announcement being viewed as mostly negative.
You can’t really argue with funding targeted to reduce diagnostic wait times though. I’m all for it.
Urgent Response services
This piece of the eventual new OAP is something that many advocated to be one of the first steps of implementation, as families were increasingly finding themselves in crisis.
The Ministry chose not to prioritize this, but are finally announcing some next steps on it:
“Initiating a community-based proposal process to identify organizations in the sector to deliver urgent response services. These services will provide a timely, rapid response to a specific, identified need to prevent further escalation.”
There’s really not much known yet about what these services/process may look like, but I know there are many families out there hoping the Ministry gets going on this sooner rather than later.
Here’s what the Panel had said about urgent response in their report:
We’ll have to wait and see how these supports shape out.
Renewal of Interim Funding
Anyone watching the money probably saw this coming.
There’s that pesky commitment Todd Smith made to spend $600 million dollars every single year. He keeps doubling down on it, despite doubts that it will be possible.
There is no program fully ready yet, the launch of core services is likely to be a slow process, and basically everyone is already in receipt of an interim “one-time” funding payment from the last round.
The Ministry was going to have to do something to actually spend the money they promised.
Are they going to learn from past mistakes, and spend that money in a more fiscally responsible way?
They decided: no, that’s not their style.
Another round of the inefficient/wasteful interim one-time funding was announced. Lisa MacLeod’s Childhood Budget program is still in play, even if they want to call it another name.
For some, this may come as a great news, allowing families to maybe arrange some more speech or occupational therapy for their child while they wait for the more comprehensive program.
For those hoping to pay for the ABA therapy recommended by a professional for their child, this small subsidy won’t take them very far — especially in you fall into the $5,000 cheque bracket.
Then there’s going to be the families that already received more than they needed with the first cheque, are not looking for therapy, and so instead are just spending the money on eligible “stuff.” If they found a way to spend it all last time, they will likely qualify for another cheque. Meanwhile, thousands of kids have no pathway to meaningful therapy yet.
Could the Ministry have come up with a better interim fix? Absolutely. Instead, they’ve decided to stick with the Lisa MacLeod-style payments.
Core Services to launch … * in a pilot program
The Ministry may want to say that they’ve officially launched core services, but they’re really just giving it a test-run first.
They’re going to select 600 kids (“who represent a diverse sample of Ontario Autism Program registrants”) to be the guinea pigs, testing out the “new determination of needs process” that will include:
— meeting with a family to identify a child’s goals, strengths and support needs across key domains
- allocating funding to families so they can purchase core clinical services from providers of their choice
- supporting families with next steps to access core clinical services of their choice
More specifics on the types of questions families will be asked can be found in the press release here, and it spans nine domains, including things like communication, social interaction, sensory issues, etc.
“In addition to the nine domains, the care coordinator will consider factors such as developmental and life stages, as well as co-existing health and environmental factors.”
From that, apparently this process will “identify the intensity of support needs as being extensive, moderate or limited,” which then triggers a “funding allocation” that falls within the following ranges:
It was this piece of the announcement that raised the alarm for many.
Funding caps. Age-based Funding caps.
Also, why is there a minimum? That part doesn’t make sense, and should be removed. Some kids may not need much therapy at all, and placing minimums invites waste.
Here’s the thing: The use of service caps was a recommendation from the Advisory Panel as a necessary (and hopefully temporary) measure to try and clear the backlog of kids not receiving any meaningful help at all.
The Panel did also outline the idea of support levels reducing over time, as kids are hopefully able to expand the use of their skills into areas outside of therapy, primarily in school (if properly supported). Their need for support won’t disappear as they get older, but it’s likely that the level of intensity of support needed, on average, will decrease with time … especially for those who enter the system at a younger age and can benefit from years of access to more intensive supports. While kids reduce their therapy, it opens up funding for more kids to enter the program.
It’s not possible to have a cap-less system without also having a long waitlist.
The whole point of Childhood Budgets (although horribly designed) was to provide support quickly, without a long wait. With the ridiculous funding amounts previously chosen, meaningful support was not possible for kids with anything more than mild needs, and waste was inevitable when needs were ignored and funding was given anyway. It was a failure.
I get what they’re trying to do now, but in the currently proposed format there will still be some kids that may not have access to the full level of support they need.
A good example would be a kid around 10 years old, screwed by the system for years, and who never received true support. After being given a $5,000 IOTF cheque, they would now only have access to up to $41,400 … but will that be enough? That may only equate to about 15 hours a week of ABA therapy. What if they have severe autism and were recommended 25–40 hours per week, and their parents were never able to afford to pay privately for therapy? The recommended level of therapy would cost substantially more than their max possible allotment under this new system. Aging from 9 to 10 doesn’t magically reduce their need for support.
If the program aims to fully meet needs, there has to be a way to ensure kids with more complex needs can obtain additional support outside the age-based funding window, especially if they have never received meaningful support before.
Need Determination Process
The way in which the assessment tool “works” will be critical in determining how effective the new program can be.
The general ask from parents and professionals has been very clear: Clinicians should be the ones determining the needs of a child, not a bureaucrat or a computer program.
The Ford government wants to try their hands at the later, and we should all be leery about that process.
Will this tool match kids up with a funding allotment that actually meets their needs profile? What if parents disagree with the outcome? What if the child’s therapists disagree? Will there be a way to challenge the result of the need determination?
You have to remember that it’s the government programming this thing. If they want to make it so that 50% of the 4–9 year olds that get evaluated by the tool are allotted the lowest amount in the available window ($8,900), they can program their tool to do exactly that. You can make an algorithm do whatever you want it to.
I’m sure the government would prefer to boast about eventually getting a high number of kids into the program, and not a chronically long waitlist. They won’t be able to accomplish that by giving every single child the highest available funding allotment, but we have to make sure kids aren’t being short-changed in favour of waitlist churn.
I worry about the families who may not speak English as a first language, who aren’t able to properly communicate the needs of their child in a questionnaire from a Care Coordinator. Even if you do speak English fluently, it can be hard to really capture the complexities of your child just from talking about them, or completing a checklist. A clinical evaluation from a professional can give a much better picture of what their real needs might be, and how much support they would require.
Time will tell how fair this tool might be, but I think parents would feel better if they knew there was a solid way to challenge the results, or if clinicians had a bigger role in the process.
So is this new program needs-based?
First off, was the Coteau OAP needs-based? Yes – if all your child needed was ABA, but No if it was speech or occupational therapy that your child needed. The waitlist was also getting out of control, and the budget wasn’t high enough to serve the volume of kids it would need to be considered truly effective.
Was the MacLeod Childhood Budget needs-based? Not even a little bit. Their execution of cheque distribution was also extremely poor, with the wait still pretty long for something the ministry had plenty of money just sitting there for.
Is the new Smith OAP needs-based? Sort of. Maybe? We don’t know yet.
I think for a lot of kids (especially with mild or moderate needs) this program, in theory, could work … as long as the needs-assessment tool holds up.
It’s the kids with more intensive therapeutic needs that are in danger of being under-served. If you’re 9 or under, will $65,000 be enough? Maybe, but that shouldn’t be solely the government’s decision to make if they’re truly committed to a needs-based program. If a child has really complex needs, and a clinical expert says they require $80,000/yr of therapy, there ought to be a pathway to receive that kind of funding if the need is profound. It’s not as if 45,000 kids will need this level of support, but for the small percentage that do, it shouldn’t be unreasonable to make that available.
The age ranges are also concerning for some, as there is a notable drop in the top-end funding at age 10, for example. It shouldn’t be ignored that the current government is the reason some of these kids have not had the chance to be properly supported until they are older. Just imagine being so close to being called into service under the old program, having that wait list frozen, then being left in the smoky limbo of the interim program. Once their name finally gets called up (whenever that might be), they would have lost years of crucial development time, only to be told that they aren’t eligible for as much funding as someone potentially just a year younger than them. They could miss their chance at true intensive therapy, and it would be the government’s fault.
Summary of the main concerns
- Clinicians need a bigger role in ensuring needs are properly assessed
- There should be a mechanism to unlock additional funding outside the set caps for kids with more complex needs
- Funding minimums should be eliminated to reduce waste
- The needs determination tool should be made transparent to allow scrutiny from experts outside the government
- If the funding allocation is deemed to be insufficient, there needs to be a way to challenge/appeal the results using clinical evaluation
I don’t doubt there may be a lot of families looking at the proposed offering and thinking — “I can work with that.”
The fact that kids are not being thrown off a cliff either, and can continue to have access to meaningful therapeutic funding, if needed, throughout their entire childhood, is amazing. You won’t find that anywhere else in Canada, and this should not be overlooked. Your child can continue to be supported.
There are questions left to answer, and problems left to solve, but anyway you look it, we’re going to be in a better place than with Childhood Budgets. That is not in doubt. And the waitlist will almost certainly be shorter than it used to be, once they finally are able to get this new program rolling as it should.
If the government is willing to be reasonable, and adjust the program to solve legitimate concerns that families may have right now, we have a shot at something that could become very functional in the future.
