Feb. 28 Update: What we know and what we don’t about the new Ontario Autism Program.

Only 32 days left. Still more questions than answers.

We did get an answer to my Question 8:

How does income testing work under the new program? What is the formula?

Without telling anyone, the government updated their Ontario Autism Program resource page to include new information on how income testing works. I gave my interpretation of the rules here. Unfortunately, given that the release was an absolute mess, we’re left with a whole bunch of new questions. However, I would still count this as progress.

We may also be making some progress on Question 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?

Yesterday, Liberal MPP Marie-France Lalonde (Orléans) made this official request to Ontario’s Financial Accountability Officer:

Hopefully we receive a timely answer.

People outside our community know that we are upset (to put it mildly) about these changes, but don’t always know why. To help explain why we feel the way we do, I’m working on putting together a few explainers, on various components of the new plan. Yesterday, I published my first: Why the OAP income testing formula stinks. Look for more in the coming days.

Back to the update… since we have received an answer to Question 8 on my Top 10 list, I am replacing it with the following question:

For children currently receiving services, will the cost of those services retroactively count against their Childhood Budget, when those budgets go into effect?

I’ve also added ten more questions, to make it a Top 20 list. They’re not necessarily the most important questions, but they’re the ones I’ve been thinking about.

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 the 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.

I will be editing the “Know/Don’t Know” list over lunch. For now it is unchanged (despite the fact we’ve learned more), but watch this spot for updates.

New Program

Issue 1: Maximum Per Year Funding

What we know

• 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 maximum that could be spent in a year, due to the 20% rule.
• 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.
• 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!
• 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

What we know

• 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.
• 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

• 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)