Feb. 26 Update: What we know and what we don’t about the new Ontario Autism Program.

34 days and counting.

When I started this series of updates, I thought that the government would slowly release information, I’d update my “what we know” and “what we don’t know” lists, to provide a one-stop-shop for information about the new policy.

Hasn’t really worked out that way. Since the government first announced the skeleton of a policy on Feb. 6, we’ve had exactly two releases from them. The first was a press release about how awesome the new policy is and that everyone loves it. And yesterday we received this bizarre release about how the government’s wait list freeze wasn’t really a freeze.

As someone who has not only worked in government but has seen every episode of Yes, Minister I can confidently say that “You are only bringing new clients into evidence-based behavioural service from those families to whom previous service commitments have been made…” is bureaucracy-speak for “freeze”. (If you want a laugh, read the whole release in Sir Humphrey’s voice).

I thought Robert Fisher, who has seen just about everything there is to see in Ontario politics, said it best.

The truly odd thing about this release is that, over the weekend, the Minister did not dispute the existence of the freeze, but all of a sudden on Monday it’s not a freeze. What, exactly, is going on at the Ministry of Children, Community and Social Services?

I’d like to give a shout-out to two MPPs who showed real courage yesterday. First is Monique Taylor of the NDP (Hamilton Mountain) who took a stand and was removed from the chamber yesterday:

Given her statement, she had to be removed (it’s unparliamentary to say that another MPP is “lying”), and I’m quite certain she knew that when she said it. But even this former baseball umpire can admit that sometimes you have to say your piece, even if it means you’ll be ejected from the game.

The second is PC MPP Jeremy Roberts (Ottawa West — Nepean) who publicly showed his lack of support for this new policy by refusing to stand or clap for the Premier.

That was a gutsy and possibly career-limiting move. You’re a good man, Jeremy Roberts. I have a tremendous amount of respect for you and what you did.

Finally, yesterday Lisa MacLeod gave a response in Question Period, suggesting that Sherri Taylor from Windsor supports the changes to the OAP:

Sherri Taylor, who is a parent from Windsor, wrote in. She said, “Parents need to have services available to them before their child is no longer a child. Families need more support and choice for their children with autism neurodiversities. Our children sit on wait-lists for years only to be shuffled through consultative models that do not provide the direct treatment. Families are in crisis. Our government is heading in the right direction recognizing that early intervention is key.”

I appreciate Sherri’s sentiments. She is one of the hundreds of families that we’ve been working with throughout the past number of months in order to course-correct so that 23,000 children will get off that wait-list —

At 9:30 this morning, Sherri Taylor issued this strongly worded statement, making it clear that she does not support these changes at all:

February 25, 2019

The statement read by Minister MacLeod yesterday in the Legislature on my behalf is proof of her manipulation, and outright untruths to the public and makes a mockery of every parent who has a child with developmental disabilities, Autism or otherwise.

I have been advocating on behalf of my son for 4 years now. He is a little boy who was diagnosed with Autism and Sensory Processing disorder at the age of 4. As I worked in special education for the York Region Board of Education for half of my professional career, I knew early on that ABA was not the therapy for him. I knew that I wanted to treat his neurological conditions with a neurological therapy vs. a behavioural therapy. I sought out an Occupational Therapist who was certified in sensory integration therapy. Not one penny of my son’s therapy was covered under the Liberal’s OAP. In fact, I was told by Thames Valley Children’s Centre to not even bother applying for the OAP unless I was interested ABA/IBI only. Instead I paid for intensive Occupational Therapy out of pocket, 3 hours a week for just under 3 years totalling approximately $60,000. It was worth ​every​ ​single​ ​penny​.

I was aware that Minister MacLeod was coming to Windsor for a Pub night. I could not attend but had a fellow parent attend in my place. As a result of advocacy from parents at that pub night, Windsor was given the last coveted round table regarding the OAP.

I contacted the Minister’s Office on January 24th, to discuss this round table. I received a call back from Susan Truppe, Director of Policy and Legislation in Minister MacLeod’s office wanting to hear “my story”. She asked for a quote and for me to write an Op Ed piece telling my son’s journey. I happily agreed. I felt listened to, I felt hope.

The following day I emailed my quote to Ms. Truppe. Over the next few days I received emails and phone calls from Ms. Truppe making suggestions of how to trim down or change my quote. In one of those emails on January 25th, Ms. Truppe made the suggestion that, “we add ‘The government is on the right track right’ before the early intervention line,” in my quote.

I questioned Ms. Truppe about that suggestion. How could I endorse a plan I wasn’t privy to? I specifically stated on January 28 in an email to Ms. Truppe, “I don’t know the plan that the PC Government has for overhauling the system so I am not sure that I can say that.”

I also asked if they would address early intervention and a direct funding model. She answered that this was the case. I am a parent with a child with developmental disabilities that has been advocating for 3 years now for direct funding, and for the OAP to include ALL disabilities, not just Autism, and the use of OT with a focus in Sensory Integration Therapy, Speech and any other regulated evidence based therapies, not just ABA. I made this very clear to Ms. Truppe. Parents deserve a choice.

My question to Minister MacLeod is this: How DARE you?

How dare you have someone in your office gain my trust, and make me think we were working together towards a more equitable plan to provide more choices for our children. How DARE you waste parents precious time and energy in roundtables across Ontario when you already had a plan in place ready to go? How DARE you give false hope to families that you were actually listening and that you wanted our input when all along it was just a facade?

It was a manipulative ploy to mislead the general public and parents that you are “for the people”. How DARE you serve your political needs by manipulating my words and my intentions? How DARE you use my quote in Queen’s Park to make it look like I wrote to you AFTER the announcement in support of a plan that will harm our children?

How many other quotes have you manipulated? How many other parents have you used? How can anyone trust that the stories you read in Queen’s Park have any shred of truth to them?

It is interesting that since my last emails to Ms. Truppe on February 7th and February 14th, stating my disappointment in your announcement, I have not had one email returned.

Let me be very clear Minister MacLeod, I am NOT in support of your plan, I will never be support of your plan. In fact I am very much opposed to it. It is nothing more than a way for the PC government to save money off the back of kids with a Neurological Disorder.

Shame on you for your blatant deception! It is offensive and appaling! I would ask you to resign, however you have made it more than clear you are proud of your deception; you are proud of a plan that is harmful and damaging to children with Autism and you would rather dig your heels in than do the right thing. So instead I am asking Premier Ford to show some integrity and to ensure you step down. You are not fit to be the Minister of Children, Community and Social Services.

Sincerely,
Sherri Taylor
Windsor Ontario

Since we’re not getting any answers from the government, we’re going to have to keep asking them questions… over and over again. I thought it would be helpful to write out my 10 biggest unanswered questions. As we start to get answers to them, I’ll remove them from the last and replace them with new questions.

Mike’s Top Ten 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. How does income testing work under the new program? What is the formula?
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?

I may expand the number of questions over time, but for now there’s my Top 10 list.

Below is the Know/Don’t Know list, which still hasn’t changed.

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)