Feb. 24 Update: What we know and what we don’t about the new Ontario Autism Program.

No new news from the government. Given that it was a Saturday, that’s not too surprising, but there is only 36 days until the new program goes into effect and they’ve told us nothing about it.

Like the day before, what we learned came from a set of e-mails. This time, they were from a service provider Kerry’s Place Autism Services and confirmed Cynthia Mulligan’s reporting that the government had told service providers not to provide services to anyone on the waiting list. Furthermore, it confirms that parents and the general public were to be left in the dark on this. As one of those parents, I’m absolutely furious.

My wife would call up CHEO (Children’s Hospital of Eastern Ontario) every single week and every single week we would be told that Mats was making his way up the waiting list. Turns out that was a lie, since the waiting list was frozen. This is particularly disappointing because my wife and I have been CHEO-evangelists. It’s a well-run hospital with great services and even better staff. We trusted them, and they abused that trust. I can’t tell you how violated we feel.

Here are the emails, in chronological order. I had multiple people on Twitter and Facebook send them to me; I do not know who first obtained them. To protect the recipient, identifying details have been removed.

Sent: September-27–18 5:18PM

Subject: Pausing OAP Services

Importance: High

Hi All,

As of this afternoon, we have been asked to ‘pause’ on making calls to families regarding DSO or DFO services in Central Region, until further notice. Any appointments you have currently made to provide Direct Service and/or any support currently in progress will continue as normal, however if you have been trying to connect with families and have not had a conversation around their DFO and DSO options as yet, please ‘pause’ on making these calls.

We have been assured that this is very short term, and as soon as we get more information from the Ministry about how to proceed we will share it. If you have any questions or need to talk through a specific situation, please connect with myself and I’d be happy to discuss.

Kerry’s Place Autism Services

Last week we knew this ‘pause’ was in effect at least until October. The above email suggests it stretches back to at least September. It would be very helpful to know the exact date the Ministry issued these instructions.

Autism programming is full of acronyms, which is a minefield if you’re as bad with acronyms as I am. So if you’re new to this area, OAP is the Ontario Autism Program. Here’s how the Ministry defines DFO and DSO:

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.

Back to the e-mails. This one from October shows that this pause was, in fact, not “very short term”:

Sent: October-16–18 3:20PM

Subject: update regarding OAP

Importance: High

Hi everyone,

This email is in regards to our recent directive from the ministry to pause making calls to families regarding DSO or DFO in Central Region. During this time, please continue to work with your manager and clinical supervisor to support families and individuals with whom we have made commitments to. We will continue to hold on making calls to any families that have not already been given a choice of DFO vs DSO services and will continue to support those that have had an Initial Assessment completed and/or have been reviewed through the Clinical Review Table. Furthermore, where we have capacity or room in our caseloads, we will begin working collaboratively to provide additional family services and training.

These messages are confidential and are not to be shared out publicly. Please feel free to connect with your manager if you have any additional questions.

Thank you,

Kerry’s Place Autism Services, Central Region

The centre placed a great deal of importance in families and the general public not knowing about these changes, as shown by the above email and this one from December 3rd,

Sent: December-03–18 4:52PM

Subject: Confidential

Hi All,

Just a friendly note to let you know that the general public and other agencies outside of the OAP Behavioural Services providers are not aware of the ‘hold’ that we currently have on our Behavioural Services until March 31st. Please do not share this information with others — this is internal only information at this time.

Thank you,

Kerry’s Place Autism Services

It’s time for service providers to come clean with the general public. What did you know, and when did you know it?

No updates today to the what we know/what we don’t list below. Time permitting, I’m going to try to add some additional questions to tomorrow’s update.

New Program

Issue 1: Maximum Per Year Funding

What we know

• The maximum funding is $20,000/yr for kids aged 2–5 (4 years) and $5,000 for kids 6–17 (12 years).
• This is not nearly enough money to purchase ABA, which costs around $80,000/yr.
• Parents cannot use the money to purchase OT or speech therapy but can use the money to purchase iPads.

What we don’t know

• What services and supports families will be able to purchase (other than what is listed above). We are told this will be released sometime in April 2019, which is after the new program is live!
• How families pay for services (do they pay out of pocket, then submit receipts? A receipts model would be highly problematic, as it would require families to have significant up-front cash. Does the money go direct to providers?) Sarah Jones was able to get some information on this from Amy Fee, but we don’t know if this is official government policy.
• What happens the first year a child is diagnosed. If a child is diagnosed at age 3.5, do they have to wait until their next birthday to receive funding? Do they get the full amount for a 3-year-old? Is the funding pro-rated? (So they’d receive half the amount they would for a full year?)
• Can families roll-over unused budget into following years, or is it “use it or lose it”?

Issue 2: Means-Testing

What we know

• Almost nothing. We thought we knew when the clawbacks start (at an income level of $55,000/yr), but yesterday in Question Period, it was indicated that families earning $55,000/yr would not receive the full amount. Details here, along with a guess on how the funding might work. (Again, noting that the cost of ABA is around $80,000/yr and that $55,000/yr is less than some dual-earner minimum-wage families earn).
• We know the government is defining income, for means-testing purposes, as Line 236 on your tax return (which is standard for these types of programs), which is income after Line 207 through 235 deductions (including child care expenses and RSP contributions) have been applied. So this is “pre-tax” income, but net of some deductions.

What we don’t know

• Anything about means-testing, including the formula.
• We also still don’t know if the funding works differently for single-earner vs. dual-earner families, or if the program has a built-in “marriage penalty”. (Or put differently, will this program pay families to get divorced).
• How the funding and means-testing works for families with multiple children on the spectrum. My interpretation of what the government has released is that it is not affected by the number of children in a family. That is, if you have one 11-year-old with a “Childhood Budget” of $2750, each child would receive a budget of $2750 if you instead had 11-year-old twins on the spectrum. It would be helpful to have this confirmed, though.
• If families have a substantial change in their financial situation (say a job-lost), can they be re-assessed to have their funding reflect their new income level? What is the process for doing so?

Issue 3: Going from Diagnosis to Funding

We know next to nothing about how children will transition from being diagnosed to receiving funding when the new program is fully implemented.

What we don’t know

• How long will it take for families to receive funding after a child is diagnosed? Will it be immediate? Will they have to wait a certain amount of time (say 6 weeks)? Or wait until a certain date (say April 1?)
• How does funding “renew”. Let’s suppose a 5-year old child starts to receive funding on October 13, 2021. She turns 6 on November 27, 2021. Does her initial pot of funding extend to her birthday (November 27, 2021)? end of the year (December 31, 2021)?, end of fiscal year (March 31, 2022)?, a full year (October 12, 2022?)? How does the fact she is going from a 5-year old (younger child) to a 6-year old (older child) during that year affect funding?

Issue 4: Data Needed to Forecast Costs

Outside analysts (like yours truly) would like to be able to estimate how much the government will be spending on this new program. In order to do that, we need to know how the means-testing works. There’s also a number of other important pieces of information.

What we don’t know

• Forecasted utilization rates for spending.
• How many kids are projected to use the program, along with their ages.

Issue 5: Government’s Forecasts of Costs

Based on the little information we have, it looks like the government is cutting yearly funding in the range of $50–100M, but honestly, who knows? We would like the government to tell taxpayers and parents what this new program costs, and whether it is less than what the old program would have cost.

What we know

• Between fiscal years 2011–12 and 2015–16, the government spent $180–190M each year. (Data here).
• In fiscal year 2016–17 they spent $254,633,529
• In fiscal year 2017–18 they spent $317,801,400
• The number $321 million, which the government has repeated both in Question Period and on Twitter. What we don’t know is what fiscal year this represents. Note that this would be a slight nominal increase from 2017–18, it would be a real (after inflation) decrease in expenditure, no matter which fiscal year it is for. (A brief editorial: For as long as I can remember on the autism file, parties have always been talking about “more” funding, and throwing around numbers… $32 million.. $65 million… $100 million, without telling us what this is more than. “More” is a comparative word, so it only makes sense if it is referencing (either implicitly or explicitly) some other value. What are you using as your baseline? Why can’t you say, “we’re going to spend $X more in 2019 than was initially budgeted for, for a total spend of $Y in 2019” or whatever. Why must voters be left in the dark? And all the parties are guilty of it.)

What we don’t know

• What the government will spend in fiscal year 2018–19 (Which ends Mar. 31, 2019)
• What the government would have spent in fiscal years 2019–20, 2020–21 and 2021–22 had there been no changes to the program.
• What the government will spend in fiscal years 2019–20, 2020–21 and 2021–22 under this new program.

Transition from Old Program to New One

Here’s what we know and what we don’t about the transition from the old program to the new one.

What we know

• The transition starts on April 1, 2019
• The transition is expected to last 18 months (that is, until Sept. 30, 2020)
• In advance of this new plan, in 2018 the government stopped providing therapy to children on the waiting list, without telling parents, denying the kids on the top of the waiting list with the therapy they need. Their motives for doing so are in dispute.

What we don’t know

• What changes were made to the OAP in fiscal year 2018–19, by this government (or the previous one), to prepare for this transition. There were rumours going around the community for some time that the Ontario government was not allowing service providers to start treating kids on the waiting list. Those rumours turned out to be true. What else has the government done to the program?
• For children currently receiving funding, how much funding will they receive upon renewal? Will it be the existing amount? The amount from the new funding formula? Something else? Nothing?
• For children currently on the waiting list, how long will it take them to receive funding? What does the process look like? Will they all have to wait until October 1, 2020?
• For children diagnosed during this period, will they receive their funding before October 1, 2020? On Oct. 1? Or will they have to wait a full 18 months? (So a child diagnosed on February 20, 2020 would need to wait until August 20, 2021)
• Will the government continue to spend the same amount of money on services during this period? Or will they be saving money by reducing funding to kids currently receiving treatment while not extending new funding to kids on the waiting list? (as asked earlier)

I’m not expecting to learn much over the weekend, but time will tell.

List of Resources

From the Ontario Government

• Program details from the Ministry of Children, Community and Social Services
• Feb. 6 Press Release: Helping Families by Improving Access to Autism Services
• Feb. 6 Press Release: Ontario Takes Decisive Action to Help More Families with Autism
• Feb. 6 Press Release: Electronic Press Kit Now Available: Ontario Takes Decisive Action to Help More Families with Autism
• Feb. 7 Press Release: New Ontario Autism Program Draws Support From Across the Province. (No press releases since then)