Improving outcomes for kids on the spectrum

One of the things I’m constantly saying to our Policy Team at SPI is “what does success look like?” If a certain policy works, what would we achieve? How would we know we achieved it?

I find this question particularly concerning in the ongoing Ontario Autism Program fight, because “success” is starting to look like “we get the government to back off their changes and we revert back to the existing broken system.” Some success. Ontario’s kids deserve better.

I have been particularly critical of our opposition parties, who are lacking in useful suggestions to improve OAP. The Liberals seem content to defend their record, whereas the NDP are giving us “weak sauce”. Their solution is as follows:

…investing more into autism services, focusing on evidence based solutions that put the needs of kids and their families first... New Democrats will keep fighting for a comprehensive autism strategy that focuses on a child’s need, not just their age.

That would make a pretty good summary of the previous government’s reforms! I don’t see how doubling down on a failed system is going to solve anything, and I don’t think I’m alone on that.

I’ve had it pointed out to me a few times that it’s “easy to criticize, but harder to come up with solutions.” Fair enough. My only expertise here is as a Dad. I’m a trade/productivity economist that spends his days trying to help farmers reduce GHG emissions and fertilizer run-off into Lake Erie. Knowledge of cow burps and yellow perch don’t transfer well here. I’m not the guy you go to if you want to transform the healthcare system.

But since you asked for it, I’m going to muster-up all the white-guy confidence I have, and make a few suggestions.

First, we need to recognize that the Tories got at least three things right:

1. More money is needed to reduce diagnostic wait times. We need to also find ways to get underdiagnosed populations (particularly girls, but also low income, new Canadians, etc.) into the system.
2. The quality of private treatment is quite variable. A “white list” of quality providers would go a long way in helping families navigate the system.
3. The current system needs radical reform, not band-aid solutions. I disagree with the proposed reforms, naturally, but the Tories seem to recognize the scope of the problem. I’m not sure the other two parties do. (And my apologies to Mike Schreiner and the Greens for my continued focus on the Big 3 parties).

There’s a few obvious things that need to be done. First, there’s a lot of waste and duplication in the system. The front-line providers know where it is, so get their input. Second, this issue goes way behind getting some expert “input”. A full blown commission is needed, to examine the system, and figure out how to more cost-effectively provide treatment. (Because ultimately, that’s the issue — treatment is exceedingly expensive. Families typically don’t have the money to pay for it themselves, and governments are unwilling to commit the level of dollars needed.)

That said, here’s my suggestion for reform: End the “wait-list” paradigm, and transform it into a “service guarantee” one.

As it stands right now, after a diagnosis you get told your child is #947 (or whatever) on a waiting list, and you’ll get help when it’s your “turn”. (Not just OAP either. SSAH and other programs work basically this way). It’s an awful system, because you never how long you’ll have to wait, so it’s impossible to make any kind of long-term plans. There’s no transparency, so families (and the general public) are left in the dark on the state of the system.

A “service guarantee” paradigm would work as follows. The government would set a wait time for types of therapies. Let’s say they set it at 24 months for ABA. Then if your child is diagnosed in April 2019 and is identified by trained professional as needing ABA, they would be told “your child’s ABA will start in April 2021”. This would not be a target, but rather a commitment.

That trained professional would also help you map out a plan for your child of things you can do between now and then and provide parents with an up-to-date resource guide of service providers, programs, apps, you name it, that might help (and please, I beg you, give your healthcare workers some training so they’re not suggesting that Moms, and only Moms quit their jobs and be full-time stay at home-therapists. The current system is both incredibly sexist and heteronormative, an issue I haven’t seen any politician address. Honestly, when you’re navigating the system, it feels like you’re stuck in 1975.)

Every three months, there should be a follow-up appointment to monitor the child’s progress, provide suggestions of things to try as well as possibly change the commitments that were made, if they no longer seem appropriate.

This would have some major improvements over the status-quo:

• First, governments would now have to be transparent in how long they were making kids wait to receive treatment. Hopefully, this would shame them into putting more dollars into the system, to turn that “24 months” into 18 or 12. (Right now, it’s probably more like 40).
• It would give parents a whole lot more certainty. They would know how long they’d be paying for private therapy while on the waiting list, plus they would get a better sense of how they could help their kids while they wait.
• It would give the government more cost certainty for the future, because they’d know “okay, we’ve committed this much in therapy for April 2021, so we need this many therapists, etc.”
• Of course, the government could underestimate those costs, so they might have to spend more than they planned in order to meet their commitments. But right now if they don’t meet their commitments, those costs fall on parents. If the Ontario government needs to spend more money, they sell more bonds at a 2–3% interest rates. If parents do, they put 2nd mortgages on their house, run up their credit card bills, go to payday lenders, or get the money from some guy named “Lefty”. I assure you, all of those cost a whole lot more than a 2–3% interest rate.

Just some thoughts. Again, I’m no expert. I’m just a Dad who is tired of fighting a system that’s failing kids.