Mar. 7 Update: What we know and what we don’t about the new Ontario Autism Program.

It’s Protest Day!

Wish I could be with you today, in person, in Toronto. Although I’ll be in Ottawa with the boy, playing the role of “Ontario Dad”, I’m absolutely there with you in spirit! My partner will be there, so if you see her, say hi!

Only 25 more days. A few updates to share, though we’re still not learning much from the government.

Yesterday I posted Gender impacts of the new Ontario Autism Program, showing how the new program has a disproportionately negative effect on girls on the spectrum and Moms. Readers were kind enough to send me more studies over e-mail; I’ll be updating the post later this week with the new information. But I wouldn’t want you to miss the big takeaway, which is:

Girls with the same needs as boys will be receiving thousands of dollars less in therapy, simply because they’re girls.

It’s not right. It needs to change.

We got some insight yesterday into this question of how much money the government has budgeted for the Ontario Autism Program in 2018–19, since the answers given by Lisa MacLeod didn’t add up. (See more in: Making sense of the millions). Liberal MPP Kathleen Wynne (Don Valley West) asked about the discrepancy and received this answer from President of the Treasury Board Peter Bethlenfalvy (Pickering — Uxbridge):

Thank you to the member opposite for the question. The numbers are available, and we’ve said it many times, that the previous Liberal government’s budget was $256 million. As the record shows, there was $62 million in holdback which was to be released, because the program — you’d have to ask them why they wanted to hold back $62 million. The Treasury Board released that money at the request of the Minister of Children, Community and Social Services because it was the right thing to do.

In addition, the minister came forward and asked for an additional $40 million, Mr. Speaker, because the previous Liberal government’s program was broken and she wouldn’t stand by and take over a broken program. Treasury Board was more than happy to supply that support.

I still don’t know where this $256 million is coming from. We have documentation of how much was budgeted each year and how much was actually spent. Here’s what the last five years looks like, which show the spending increases in budget (and spending) that were introduced for 2016–17:

Regarding this $40 million, it would be helpful to know if the government thinks it will be spent (so will spending be closer to $321 million or $361 million)? As shown by the chart above, actual spending does deviate from the planned budget each year, and there has been a $40 million cost overrun in recent history. So what is the government forecasting actual spending will be, given that we’re about 3 weeks away from the end of the fiscal year?

Finally, I’d like to talk about this:

I believe the Minister on these credible threats. I’ve been around politicians enough to know that these types of threats are all too common. We aren’t that far removed in time from the shooting on Parliament Hill (I was lucky that I missed it by about 90 minutes). Given how contentious this issue is, I’m not surprised some deranged individual would make threats. Sadly, it’s the world we live in.

But here’s the thing… Lisa MacLeod was supposed to be at the Albany Club instead! (Having had lunch at both the restaurant at Queen’s Park and at the Albany Club, it’s hard to go wrong either way).

The Albany Club quietly scrubbed MacLeod’s name from the list of speakers:

Apparently, MacLeod made the decision to cancel a week ago:

Except it wasn’t just the club that “forgot” to update their website — the Tories themselves were still advertising her attendance!

Along with the missing millions, the inability to give details on how the new OAP works, the charitable explanation here is that nothing nefarious is going on, it’s just gross incompetence.

I’m willing to believe that.

But these grossly incompetent people are in charge of our kids’ futures. None of us should be comfortable with that. It’s time to reset and put some people on this file who know what the hell they’re doing.

No changes to the “What we know” list and the Top 20 questions, because Ontarians aren’t allowed to have nice things. Like answers to basic questions.

New Program

Issue 1: Maximum Per Year Funding

How it works

The funding is based on a Childhood Budget model, where a child is assigned a lifetime budget based on their age when entering the program. There will be rules that govern how much families can spend of that budget each year, though those rules are currently unclear.

For the purposes of calculating the Childhood Budget, the maximum funding is $20,000/yr for kids aged 2–5 (4 years) and $5,000 for kids 6–17 (12 years). Note that this is not necessarily the amount that can be spent in a year, as “[f]amilies will have options in how they receive their budgets. This includes being able to access 20 percent of their remaining childhood budget each year.” (More detail here). We know very little about these options, or how much a family can spend in any given year.

Note that those figures represent the maximum — the actual Childhood Budgets are adjusted basically on a family’s income.

What we know

• The $20,000/$5,000 split 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. We don’t know if the money can be used for apps, such as speech therapy apps.
• Families will be able to purchase “eligible services” from “the providers of their choice on a fee-for-service basis. This will include behavioural services including assessments and consultations, family/caregiver capacity building and training, respite services, technology aids and travel.” (Source)
• It appears that families can roll-over unused yearly budget into following years, thanks to the Childhood Budget model, but it would be nice to have this confirmed.

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! We are not even sure if spending on ABA will be eligible.
• The government’s current explanation of what the money can be spent on: “will include behavioural services such as assessments and consultations, family/caregiver capacity building and training, respite services, technology aids, and travel.”
• 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?)

Issue 2: Means-Testing

The Childhood Budget is means-tested, meaning that the amount of money a family receives in their budget depends on their income. As well, the amount of money families can spend each year from their Budget also depends on their income. Childhood Budgets are re-assessed every year, to reflect changes in a family’s income.

The government has released their sliding scale for income test, for the purposes of calculating the Childhood Budget. More detail on what we know here. Families earning over $55,000/yr will have their Childhood Budget reduced by the income test. Families earning over $250,000/yr will be ineligible for funding altogether.

What we know

• That a dual-earner couple with a combined income of $56,000 from two full-time minimum wage jobs, living in downtown Toronto with 3 kids is considered too rich to receive full-funding.
• The funding formula is the same for single-earner for and dual-earner families, so the program has a rather large built-in “marriage penalty”. (Or put differently, will this program pay families to get divorced).
• The Childhood Budget is reassessed every year to reflect a family’s current income. This has all kinds of unintended consequences, including putting families in a situation where their “available budget” is negative! (More details at: Why the OAP income testing formula stinks.)
• 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.
• “Once the income testing process is fully automated, Adjusted Family Net Income will be used. Adjusted Family Net Income is your family net income minus any universal child care benefit (UCCB) and registered disability savings plan (RDSP) income you’ve received plus any UCCB and RDSP amounts repaid.” Note that they are referencing the old Harper-era UCCB, not the current CCB which was brought in by the Trudeau government. So any CCB payments are not considered income.This may still affect some families, as I believe it is still possible to receive retroactive UCCB payments. (Note: I was an (unpaid) outside economic advisor to Justin Trudeau prior to the 2015 election and did some of the design work on the CCB. So this is giving me serious flashbacks.)
• The funding and means-testing works for families is unaffected by the number of children you have, whether they are on the spectrum or not. If you have one 11-year-old with a “Childhood Budget” of $15,000, each child would receive a budget of $15,000 if you instead had 11-year-old twins on the spectrum.
• The income test does not take into account a child’s individual needs, nor does it take into account differences in cost-of-living across the province.

What we don’t know

• If families have a substantial change in their financial situation (say a job-lost) in the middle of the year, can they be re-assessed to have their funding reflect their new income level? Or do they have to wait the full year? What is the process for doing so?
• If families have a negative balance in their Childhood Budget, will they be required to pay back the money?

Issue 3: Going from Diagnosis to Funding

How it works

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

How it works

Outside analysts (like yours truly) would like to be able to estimate how much the government will be spending on this new program. (Note: this is different than knowing how much the government will be budgeting for the program, since a program can run over- or under-budget. In the past, there have been years where the OAP has run overbudget and years where it has run underbudget.)

In order to estimate how much the government is likely to spend, we need to know how the spending rules work for the Childhood Budget. There’s also a number of other important pieces of information we need to know.

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

How it works

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. I explore the issue in: Making sense of the millions.

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 budgeted in fiscal years 2019–20, 2020–21 and 2021–22 had there been no changes to the program.
• What the government will budget for fiscal years 2019–20, 2020–21 and 2021–22 under this new program.

Transition from Old Program to New One

How it works

Despite there being less than a month until the new program starts, we know very little on how this works.

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)

Mike’s Top Twenty Questions

1. What was the chain of events that led to the program freeze? When did it happen? Why did at least one service provider believe the freeze would only be temporary?
2. Why were parents left in the dark about the program freeze? Why were service providers instructed to keep us ignorant? What purpose did this serve?
3. If the original OAP budget for 2018–19 was $256 million, and an additional $102 million was requested, why is the current budget only $321 million instead of $358 million? Where did the missing $37 million go?
4. Why was the 2018–19 OAP budget only $256 million, when $317.8 million was spent in 2017–18?
5. The “23,000” waiting list number was obtained by amalgamating all the waiting lists into one. Given that some children could be on multiple waiting lists, how many unique children are on waiting lists? How many of those children have never received service before?
6. What is the forecasted expenditure for the new plan in fiscal years 2019–20, 2020–21 and 2021–22? What were the assumptions underlying these forecasts?
7. Why does the new plan take into account family income and a child’s age, but not a child’s needs? How is it a good use of taxpayer money to give some children more money than they need, while providing children with more significant needs only enough money for a few weeks of therapy?
8. For children currently receiving services, will the cost of those services retroactively count against their Childhood Budget, when those budgets go into effect?
9. What goods and services can families purchase under the new plan? Are OT and speech therapy included? If not, why not?
10. What will the transition look like for kids currently receiving treatment?
11. What new supports, if any, will be given to schools as kids who are losing full-time ABA under the new model are put into the classroom?
12. For children currently receiving therapy (either through DSO or DFO), how long will it take them to access new funding when their current funding runs out? Will there be a time gap?
13. On the Ontario Autism Resource page, it states “Families will have options in how they receive their budgets. This includes being able to access 20 percent of their remaining childhood budget each year.” How will this work? Can you provide more details or examples?
14. For the purpose of the income test, how is family income calculated in cases where two individuals have joint custody of a child?
15. The income test has ‘brackets’. Will these brackets be adjusted for inflation each year? If they are not, parents will see their Childhood Budgets reduced as they are pushed into higher income brackets simply for having their wages rise with inflation.
16. Similarly, will Childhood Budgets be indexed for inflation, to reflect the increasing cost of services?
17. How do Childhood Budgets account for ‘partial years’, as it is unlikely a child would enter the program on their birthday? Or will children only become eligible on their birthday?
18. Since Childhood Budgets are adjusted for income each year, it is possible for a family’s past spending to exceed their Childhood Budget, as that budget is revised downward. Will parents be required to pay back any difference?
19. With the elimination of the Direct Service Option, what will the government do to ensure services are available across the province?
20. During the transition, which service providers can parents access, given that the approved list of service providers will not be released for several years?

I likely will be expanding this list in the future.

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)