Needs Based Therapy while we wait: A case for renewable interim payments

MPP Todd Smith in a media scrum on Feb 18, 2020

Minister Todd Smith has a pretty big problem facing him with the OAP in the 2020/2021 fiscal year:

A $600 million budget, and no functional program to spend it on.

With the news in December that the eventual revamped OAP may not be ready until 2021, it’s a real piecemeal situation at the ministry right now.

There are several cohorts of autistic children in Ontario, with pretty significant differences in the quality/quantity of support they are receiving.

1. “Legacy kids” – Their behaviour plans are fully funded and being maintained at the same levels of therapy they are currently receiving (or reduced, if clinically appropriate). They are receiving needs-based therapy (at least as far as ABA goes), and promised a seamless transition into the new program. As of the latest update, there were about 8,000 kids in this category, with that number dropping every month.
2. Childhood Budget (CB) recipients – About 5,000 kids received a cheque for either $5,000 of $20,000 (arbitrarily assigned by age), chosen off the waitlist, seemingly at random, by an algorithm that we don’t know the details of. At the 1 year anniversary of receiving their CB they are eligible for a One-Time Funding payment. Their individual needs have been deemed irrelevant.
3. One-time-funding (OTF) kids – In theory, every child on the OAP waitlist (registered before April 2020) will be invited to apply for their one-time-payment (in the same random amounts as the Childhood Budgets, with no consideration of need). The promise was that they will receive their invitation to apply before the end of the fiscal year (March 31st, 2020), though no guarantees on when they’ll actually get the money. There are over 24,000 kids in this boat.

So how much is this all going to cost in the new fiscal year?

• The cost to maintain the behaviour plans for legacy kids is difficult to be precise on, but is likely in the ballpark of $30,000/year/child (based on knowing the old budget, and the approximate number of kids in service at the time). With 8,000 kids remaining in this group (and dropping), we’re looking at:

$30,000 x 8,000 kids = ~ $240 million, maybe less

• From age-breakdown data, we know that about 1/3 of the kids on the waitlist were under 6 (eligible for the $20,000 CB), and the rest over 6 ($5,000 CB). This works out to an average spend of $10,000 per CB. The kids who received a CB will be able to get a second round of funding in the new fiscal year, though now labeled as OTF

$10,000 avg x 5,000 kids = $50 million, likely less (as there are families who won’t have spent all of their first cheques, and won’t be eligible for the full amount the next round).

• The OTF is a way for the Ministry to get rid of all the remaining money from the 2019/2020 budget that would’ve been left unspent (due to their inability to distribute Childhood Budget cheques effectively). I’m told that these OTF payments will all be coming from the 2019/2020 budget allotment (even in situations where the letter to apply is sent in March 2020, but the family only receives the payment after April 1st … in the next fiscal year). So unless something changes, these kids who aren’t in service or in the CB group would cost the government zero in the 2020/2021 fiscal year, and may indeed be a source of future income for the Ministry.

In the terms and conditions of OTF:

as well as:

Underspend, or spend incorrectly, and there’s potentially money going back to the Ministry.

• Apart from therapy funding, there are the “other” costs, like diagnostics, school supports, etc. We got a glimpse into what these costs are like from PC MPP Roman Baber’s internal report:

Adding up these “other” costs gives ~$94 million, though it’s likely that some of the admin cost portion would be part of the already accounted-for legacy kid spend. Let’s round this portion down to $90 million.

• Finally there’s the new, and completely unknown costs for new features like the Hanen program, and CPRI workshops. These are currently running in the 2019/2020 fiscal year, but will they continue in the new fiscal as well? Who knows. Cost? Unknown. Complete guess: $20 million?

Adding it up

~$240 million to the legacy program

~$50 million for OTF to CB kids

~$110 million in “other” costs

Total: ~$400 million

This leaves ~$200 million to spend in the the 2020/2021 fiscal year.

What can be done to meet needs until true Needs Based Therapy is available?

Rewind back to 2017 when the Liberal Minister responsible for the OAP, Michael Coteau, announced the recurrent 10k payments during a transition period of the program:

“… families would get successive payments of $10,000 for private therapy until the new program was up and running.”

This was for the kids who had initially received the old $8,000 payment, originally called “One-Time Direct Funding.” Only a certain cohort of kids qualified for this interim program, though, as it was designed for ones who were 5, or about to turn 5, that were going to be removed from the IBI waitlist (since the program was not going to be available for kids over 5). Coteau eventually changed all that, opening up the OAP to kids of all ages, but not before the 8k/10k cohort was born.

Where am I going with this? A lesson learned from 8k/10k is that offering renewable payments can be extremely helpful to the kids with high needs, without breaking the ministry bank, since not all kids need more money. Only a small proportion would require a lot.

From data I’ve seen about the 10k renewals, a clear pattern formed. At each funding interval, only about half the kids needed more. For example, of ~2500 kids getting the initial 8k, only ~1100 needed the first round of 10k, then only ~600 of those kids needed a second 10k, etc. This reflects the distribution of severity (data discussion on that to come later).

Families had access to funding according to need. As an interim solution, it was a smart call.

Let’s do some math.

Instead of giving 5k or 20k based on age, let’s see what happens if they standardized the interim funding to renewable 10k payments for eligible kids (once you reconcile your first CB/OTF, with priority given to early intake dates).

Let’s pick 10,000 kids who have received a recent CB/OTF in the 2019/2020 spend:

• ~5,000 may need more money soon, at a cost of 10k/kid, or $50 million
• ~2500 of those would need more again after that, for an additional $25 million
• ~1250 of those need another 10k, so add another $12.5 million, etc

Fewer and fewer kids need the upper end funding, so if you calculate out a few more rounds, it ends with a total of ~$100 million (or an average $10,000/kid in additional funding). In the 8k/10k cohort, fewer than 10 kids (out of nearly 2,500) needed more than 70k under that 10k program.

By offering renewable interim funding the Ford government could give AT LEAST 10,000 kids (or even more) some semblance of needs-based therapy (in addition to the 8,000 kids already receiving it), and easily fit that into the existing budget for 2020/2021.

Half of those initial 10,000 kids may be doing just fine right now with their initial CB/OTF, but there would be some families really struggling, in desperate need of additional support until the new program is available.

Severity breakdown

The only real numbers we seem to have on ASD severity is the often-cited Hawaii data from 2014:

• 49% mild
• 35% moderate
• 16% severe

When you think about the 10k renewal numbers, remember that only about half of the kids needed more than the initial offering – the same proportion that’s estimated to be moderate/severe .

Reviewing the Ministry Promise

• Legacy kids extended until the new program is ready
• Childhood Budgets kids will be eligible for One-Time Funding … but only a year after they received their CB
• One time funding kids are put back on the waitlist, with no plan for them

Let’s not forget about the unfairness of the algorithm that selected the CB kids. Some only spent a relatively short time on the waitlist before received a CB, while many others who waited YEARS AND YEARS to enter the OAP were passed over for a CB, and fell through the cracks.

It was a recommendation from the Advisory Panel report that:

“Children with a formal diagnosis of ASD access all OAP services sequentially based on their date of referral.”

The panel also stated:

“It will be critical that the waitlist and the process for managing the list be transparent and accessible to families.”

It’s crucial that the forgotten kids be given their fair chance at meaningful support.

Proposal

• Continue to extend the legacy kids, as planned, until the new program is ready. Maintain continuity of care.
• Acknowledge that One-Time Funding payments are not needs-based, so make that funding renewable in $10,000 installments to eligible families to better serve their children’s needs. The simplest way to determine eligibility would be for the Ministry to choose a date, and make families eligible to renew funding as needed if their intake into the OAP was before that date (once they reconcile their previous payment). Example: if the date chosen was January 1st 2019, all kids with intake dates in 2018 or earlier would be eligible for renewed funding, as they have been waiting the longest. This would include both CB and OTF recipients. The date should be chosen to include as many children as possible within the available budget.
• Kids who have received a CB, and already reconciled that money, should be eligible to receive their next payment immediately (any time after April 1st, 2020), and not be made to wait until the one year mark of receiving their CB.
• Ensure the 10k payments are used appropriately on evidence-based therapy, and limit their use to the Core Services to be offered by the new OAP (ABA, SLP, OT, Mental Health)
• Immediately start working on capacity-building to ensure families in underserved areas, like northern and rural communities, have a way to actually spend their funding allotment on meaningful support.

I absolutely advocate for this government to get the new program up and running as soon as possible. Since that unfortunately seems unlikely to happen quickly, Todd Smith has the opportunity, and absolutely has the budget, to better support families in the meantime.

This is not reinventing the wheel either – the ministry already knows how to roll out renewable 10k payments. They’ve done it before. It’s just a matter of implementing it.

The interim plan can, and should, be better. Renewable interim payments could help bridge the gap.