Autism plan
When the Liberals tried to cut intensive therapy for kids over four, parents rose up — now the Tories face the same anger
When the Liberals tried to cut intensive therapy for kids over four, parents rose up — now the Tories face the same anger
Five days after the Ford Conservatives unveiled their revised autism plan to a loud chorus of boos, I was about to write off Kitchener South-Hespeler MPP Amy Fee.
No tweets, no Facebook posts, no public pronouncements addressing the outrage toward a policy that would see funding capped at $20,000 annually for behavioural therapies that run to $80,000, a drop to $5,000 per year once a child turns seven and a lifetime cap of $140,000.
It was unsurprising that those who put their faith in the mother of two autistic kids to advocate on their behalf, as she had promised, would be slapping their foreheads asking “What the hell happened?”
Was silence in this case complicity or the instinctive reaction of a politician under siege?
Things were much clearer with Bruce McIntosh, Fee’s legislative assistant at Queen’s Park, who handed in his resignation last week when he realized the PC government was about to do to autistic kids what it had done to:
transgender/gay kids, when it repealed the modernized sex-ed agenda.
university students, when it repealed free tuition.
the working poor, when it repealed the Guaranteed Basic Income Project.
junior kindergarteners, the sick, elderly and environmentalists when it repealed ... just wait.
No compassion, no mercy — no common sense.
“I wasn’t about to hang around and defend the indefensible,” said the incensed father of two autistic kids. “It is absolutely a wrong-headed decision and will hurt every kid in the program.”
There is no question about this.
If you talk to almost anyone in the autism community, they will tell you — passionately and with conviction — how outraged they are by the Conservative’s revamped policy and how incensed and infuriated they are at Fee, their self-proclaimed advocate.
Oh sure. It was presented as a “good news” story.
Wait lists, said Fee and Lisa MacLeod, the Minister of Children, Community and Social Services, were going to disappear as kids languishing for years got help in a timely, organized fashion.
Hear, hear. Bravo.
What they didn’t articulate, but which autism families immediately understood, is that — with imposed financial caps and services based on age, not need — the most vulnerable kids would be hung out to dry once their funding ran out.
Which will create a whole new set of problems when — bereft of proper supports — these kids enter the public school system unprepared for the challenges of an integrated classroom.
“What good is removing the wait list if the kids entering the program don’t have enough funding to make a positive impact?” asks Derek Blais, former Kitchener resident and father of two nonverbal autistic daughters who expects his funding to drop from $60,000 a year under the old system to less than $10,000 under the new.
“A few hours a week with autistic children doesn’t cut it.”
When I talked to MacLeod Monday with Fee at her side in a contentious conference call about the proposed changes, I felt like I was in a knife fight.
“You can argue with me all you like and not like the policy and that’s your prerogative as a journalist and parent,” the minister said when I asked about funding caps and age cut-offs.
“But as the minister responsible, my obligation is for all 100 per cent of those children. Our decision stands.”
Fee, with whom I had requested the interview but who would only speak in MacLeod’s presence, repeated talking points I had heard her say previously and stuck firmly to what journalists unfondly refer to as “message track.”
“We never said this was going to be easy,” she conceded when pressed.
“But at the end of the day it is about making sure that every child in Ontario with autism has a chance to be included in this program and have some funding going to their family.”
The sense I came away with is that MacLeod is a feisty street brawler who will not, under any circumstances, change course, and Fee — for all her presumed good intentions — will do nothing to change that.
Am I being too hard on them? The truth is, the autism program set up by the previous Liberal government, for all its good intentions, was mired in bungling and bureaucracy, with 75 per cent of kids who needed therapy loitering on wait lists.
I know because my 10-year-old son, Max — diagnosed at 3 with autism, mild-to-moderate — was one of them, having participated in his last round of treatment in June 2017, after which we received periodic missives on government letterhead proclaiming “Your worries are over! Unlimited funding is on the way!”
It was on the way for two years. Then the Liberals lost the election. Oops, someone else’s problem.
And there’s this harsh reality: the government sanctioned ABA/IBI intensive behavioural treatments that cost an astronomical $80,000 a year — which is a whole different issue — may work for some, but have become increasingly discredited by the one special interest group no one can ignore: autistic adults, who consider it regressive and liken it to a benign form of torture.
Lisa MacLoud — to her credit — reminds me of General Patton during the Allied invasion of Sicily. After asking her tough questions and being swatted down like a fruit fly, I may not agree with her position, but when she vows to bust the wait lists, expand treatment options and deliver services in a timely fashion I have no doubt she’ll follow through.
Amy Fee — who seemed tentative and unsure of herself — is harder to read.
I don’t want to discount her intentions, because every parent of an autistic child knows what it’s like to feel beleaguered and besieged, even politicians pulling in six-figure salaries.
But to many of her previous supporters, it looks like she capitulated in the face of a government hell-bent on saving money.
“I believe she knows our plight inside and out,” notes Mark Dineen of Kitchener, who campaigned for the former Catholic school board trustee in her run as MPP, considered her “inspirational” and “walked door to door in blistering cold to spread her message.”
“She has a wealth of experience navigating the various programs. I just feel she’s pulled the ladder up behind her, giving herself a 20 per cent boost in housing allowance while her constituents sell their only homes.”
His six-year-old son is “nonverbal autistic with high-needs” and has had $200,000 of therapy since he was diagnosed, of which the former Ontario Autism Plan — with no caps — covered almost $150,000, $80,000 in 2018 alone.
On June 30, the day after his current Behaviour Intervention Plan runs out, his funding (under the new system) will be reduced by over 90 per cent.
“Do I feel sold out?” muses Dineen. “One hundred per cent. Or as Doug would say, ‘1,000 per cent.’ This whole community has been betrayed by a callous and short-sighted government, and Amy is the prop they’re wheeling out to sell the new bullsh-t program.
You don’t want to know what they’re saying on her Facebook page, where Fee posted a newspaper editorial critical of the new policy with the personal rebuttal, “Two years is far too long for any child with autism to be waiting for therapy.”
Words like “Judas,” “sellout” and “heartbreaking” pop up frequently, as do expressions like “shame on you!” “Thank you for destroying any hope I had!” and “You are a disgrace to the autism community!”
Barring a principled move to back up her altruistic sentiments — convincing her party to change its flawed plan, crossing the floor to another or following her assistant’s lead and resigning in protest — it seems likely she’ll be ostracized by the community she claims to represent. Hell, she already has been. So what happens now? When the Liberals tried to cut off intensive therapy for kids over four, the autism community rose up like a clenched fist, with rallies, protests, marches and social media campaigns.
After 92 days, the government was forced to back down.
Multiply that outrage by 1,000 per cent and, despite their trademark incivility and intransigence, my guess is the PCs will be forced to make similar accommodations.
I say that with pride and a note of open defiance, because autism families — of which I am proudly one — are not people you want to mess with.
These are people with nothing — and everything — to lose, acting on a primal urge to protect their young, to help them reach their full potential.
A significant number, as Fee herself noted, are desperate, barely holding it together, living day to day, moment to moment.
Not many have the “tens of thousands of dollars,” like our newly elected MPP, to spend on private treatment.
In the face of a firebrand government with a cost-cutting mandate and a premier whose distaste for autistic people is on the record, will they suck up their pride, concede defeat and move on?
If your kid’s future was hanging in the balance, would you?