Day 177: The confusing mess of multiple Ontario Autism Programs

There’s a whole lot of different Ontario Autism Programs, all running in parallel, and parents have no idea how they’ll transition from one to another, causing extreme levels of stress for parents. Let’s review.

Existing Liberal System(s) — DSO and DFO — 2016 to Present

This is the program that the Liberals announced back in 2016, which, despite what you may hear, is still largely in place (I hope to some day have a piece on all the previous Liberal systems). Well over 90% of children currently receiving health care are receiving it under this system. Earlier this week, Minister Todd Smith announced that children under this system will continue to receive services. From the government’s press release:

Families will continue to receive services outlined in their current Ontario Autism Program Behaviour Plan until its end date. Families will then be able to renew their plan for a second six-month extension of up to six months at their current level of intensity, or less where clinically appropriate.

This was fantastic news and I applaud the government for making this decision.

The existing Liberal system is, in fact, two systems, the DSO (Direct Service Option) and the DFO (Direct Funding Option) running in parallel. Here’s how the Ministry describes them:

Once your spot for evidence based behavioural services becomes available in the OAP, you will have a choice. You can either choose to receive behavioural services through your regional provider, or you can receive funding to purchase these services through a direct funding provider. These options are sometimes referred to as the direct service option (DSO) and the direct funding option (DFO).

Direct Service Option (DSO): If you choose the direct service option, you will work with your regional provider to identify your child’s or youth’s goals, strengths and needs, and plan for behavioural services for your child.

Direct Funding Option (DFO): If you choose the direct funding option, you are responsible for choosing a provider who will work with you to identify your child’s or youth’s goals, strengths, and needs, and plan for behavioural services. Tools are available on the Ministry of Children and Youth Services website to support you in choosing a qualified provider.

The two programs combined cost an estimated $321 million in fiscal year in 2018–19:

The DSO/DFO system is based on a first-come, first-served model that arguably worked well (depending on who you ask), but was not perfect. There were at least three drawbacks to the Liberal system(s):

1. Waitlists were (and continue to be) long.
2. The range of options for children was limited.
3. Arguably (depending on who you ask), the DSO system had inefficiencies and was expensive.

With those drawbacks in mind, the Conservatives designed a new system.

Conservative System I — Introduced Feb. 6 2019, Killed Mar. 21 2019. Never implemented.

This was the introduction of the “Childhood Budget” model, where children would receive a maximum of $5,000 a year (for kids 6 and up), and $20,000 a year (for kids 5 and under) to spend on a variety of healthcare services, though most children would receive significantly less due to funds being clawed back based on parental income (aka the autism tax). Although the government claimed at the time they would not reduce the overall budget of the Ontario Autism Program, any reasonable estimate suggested it was a spending cut of at least $50 million a year.

Looking at the three drawbacks of the Liberal system, it becomes clear what the Conservatives were trying to do:

1. Waitlists would be (eventually) eliminated entirely, because every child would receive a cheque instead. Of course, there was no relationship whatsoever between the size of the cheque and a child’s needs. Even the largest cheques would only cover a small percentage of full-time ABA. Furthermore, there was no guarantee that there would be services available for purchase.
2. There would be an increased number of options, though the Conservatives were not specific about what these would be.
3. The plan, had it been fully implemented, would have killed DSO entirely and would be a significantly altered version of the DFO system. Because of the widened range of options for Childhood Budgets, parents (and service providers and analysts) wondered if parents would be forced to pay income tax on those Childhood Budgets, a question which still has not been answered.

Conservative System II — Introduced Mar. 21, 2019, Became Live on Apr. 1, 2019, First Childhood Budgets Received June 2019. Currently Live.

This was Conservative System I, with a handful of changes, most notably the abolishing of the “autism tax”. A few highlights:

1. The autism tax is dead. The government has eliminated the income test, which was full of all kinds of unintended consequences.
2. Eliminating the income test makes this program more expensive. Under the previous proposal, I couldn’t see any possible way the government was going to spend all of their 321M a year target. Now they might.
3. The 20K/5K model remains. Or maybe it doesn’t. The size of the Childhood Budget is still apparently determined by the age of diagnosis of the child, with ages 2–5 having 20K/yr flow into the budget and ages 6–17 having 5K/yr flow into the budget.
4. The government has increased the range of available services, but we still don’t know the full list. “Through Childhood Budgets, families will have access to a broader range of eligible services, such as speech language pathology, physiotherapy, and occupational therapy. Full details on eligible services will be posted on the ministry’s website in early April.”

On that very date, the Minister at the time (Lisa MacLeod) announced she would find a way to “better support those with more complex needs and provide additional sources of support to them.” What that likely would have looked like is larger cheques to children with higher clinical needs.

Conservative System III— Introduced Mar. 21, 2019, Killed Jul. 29, 2019. Never Implemented.

This program would have looked like Conservative System II, except with a “needs-based component”, which most likely would have been those larger cheques described above. Conservative System III would have a budget of $620 million, $300 million more than the Liberal system(s). (Here’s Minister Smith citing the $620 million figure).

Conservative System IV— Introduced Jul. 29 2019, Details to be Released in Fall 2019. Planned Launch Date: April 2020.

This was announced earlier this week. Unlike Conservative Plan III, it would not simply have a “needs-based component”, but rather be a “needs-based system”, though it is unclear what that means in functional terms (e.g. would full-time ABA be covered? Will some form of DSO be re-introduced?). Also, the cost has been reduced by $20 million from Conservative System III, with a reduction from $620 million to $600 million.

We know almost nothing about Conservative System IV, as the Minister is waiting for the Autism Advisory Panel to complete their work.

Where we are now: A summary

That’s six different Ontario Autism Program systems (Liberal DFO and DSO, and 4 Conservative systems), three of which are currently live (DFO, DSO, Conservative System II).

• Most children currently receiving support are receiving DFO or DSO.
• The Conservatives admit that their own Conservative System II was a failure, but instead of immediately scrapping it and putting more children into DFO and DSO, they will keep it live until April 2020.
• I showed back in May why Conservative System II was such a waste, now we’re seeing it first hand. One child, with no current clinical need, just received a cheque for $20,000 while so many other kids, including the brother of that child, go without.
• Parents don’t understand the live Conservative System II and are worried that if they accept it, they will get retroactive tax bills, get audited, or be put at the bottom-of the waiting list for the April 2020 Conservative System IV. As it currently stands,“ [a]fter receiving a Childhood Budget application letter, the percentage of people who actually applied is somewhere in the 20–25% range.” Parents are loudly and clearly rejecting the system because they don’t understand it and there’s too much risk.
• We have no idea what the transition will look like from Liberal DFO, DSO and Conservative System II to Conservative System IV and parents under those systems are worried they will go to the bottom of the waiting list during the transition.
• We know almost nothing about Conservative System IV, other than it’s “needs based” and has $20 million less allocated to it than Conservative System III did.

What a truly unbelievable mess.