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Why Ontario's Autism Debate Drives Parents To Rage And Tears

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ONTARIO AUTISM
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It was "the most emotional and heartbreaking in my time at Queen's Park." That's how NDP MPP Catherine Fife described the debate on autism treatment that occurred on May 17.

The discussion was triggered by an opposition motion to restore funding for Intensive Behavioural Intervention (IBI) therapy for children with autism ages five and over.

Along with hundreds of other families from across the province, I watched the motion and debate unfold over two dramatic hours.

Opposition members from both the PC and New Democratic Parties spoke passionately in favour of the motion, using children's stories as narratives to frame their support. They relayed tales of families selling their homes to pay for treatment in the hopes of one day hearing their children say a few words, only to be suddenly cut off from the support they were counting on. Parents listened with tear-stained faces, passing around tissue boxes, while their children's futures were kicked around in a verbal soccer match.

The handful of Liberal MPPs who were present for the debate rose to state that they understood that autism doesn't end at five and that IBI was effective, but they would not support the motion. Why not? Never was an adequate reason given, only tired talking points that obfuscate the real issues.

First, Government members accused opposition MPPs of "instilling fear" in parents through the motion.

In fact, parents' fears were generated by the letters they received telling them that after months or years of waiting, their children would no longer receive IBI. The offer of $8,000 and another wait list of unknown duration for a more ambiguous and less intense and continuous form of Applied Behavioural Analysis (ABA) therapy, which the Liberal members readily praise but can never seem to explain, did little to reassure parents.

Mainly it angered them, all the more so when Liberal MPPs, including the Minister of Children and Youth Services, kept insisting that they were so very pleased to hear from the parents whose pleas for the reinstatement of IBI therapy they readily ignore.

Liberal members then insinuated that parents simply don't understand the changes properly and that parents must contact and follow the advice of "service providers."

"The implicit message here is that children who are five will not be granted the continuation of fully intensive service, regardless of their needs, progress, or promise."

Those parents who have done this have only discovered that if a plan exists, the service providers have been unable to clearly explain it. The only certainty they are being told is that whatever ABA therapy they will receive will not equal the intensity of the IBI they were counting on. And that matters a lot, because it's the intensity and continuous duration that are so important for generating life changing impacts.

The prospects for children who are managing to enter IBI just before turning five are also problematic. Despite Minister MacCharles telling the house that children will receive whatever intensity they need, parents are clearly being told by service providers that after six months of service the intensity will diminish and they will be transitioned off, full-stop.

The implicit message here is that children who are five will not be granted the continuation of fully intensive service, regardless of their needs, progress, or promise.

The experience of parents of children on the Autism spectrum flies in the face of both the government's talking points and its own expert panel's advice, which suggested for maximum effectiveness, IBI should begin before the age of five, continue for a minimum of 12 months, and so long as the child is making "significant ongoing gains," with no age cut-off specified.

Minister MacCharles' explanation of the discrimination against the children who are no longer funded for IBI therapy is both tragic and short-sighted: "...we have to work through a period of adjustment as the new program is implemented. The transition, though difficult, will not affect most families."

This "adjustment" she is referring to is sacrificing one group of kids from optimal levels of treatment in the hopes of saving money and speeding things up for the next generation.

The idea that one group of children must be tossed aside for another is flawed and harmful. The Liberal Members argued that anyone who supported the motion is really supporting more wait lists for all children, as though the only way to clear the wait list is to cut people off of it.

That's nonsensical. The problem of wait lists is simply one of government spending priorities.

That's because the primary barrier to accessing therapy is funds, not personnel or infrastructure. IBI can be run out of parents' homes and front line therapists do not require much specialized training. There are more service providers available than there are clients and more could be readied quickly if needed -- a great job creation strategy to boot.

In other words, the only reason every single child with autism cannot immediately receive IBI is because the government is not immediately investing enough money for them to do so.

But aren't the Liberals investing $333 million? Why isn't that enough?

"Sadly, our government is seeking short-sighted savings over wise long-term investments. And in this case, at the expense of our most vulnerable children."

In fact, the vast majority of this widely touted "historic investment" is earmarked for years four and five of the program roll-out, long after the next election.

A mere 18% is being spent on increased autism program funding over the next two years, while the current government is still in power. Over 80% of the investment will be in some future government's budget to manage.

This is why the opposition slogan "don't balance the budget on the backs of kids with autism" is absolutely accurate, despite Liberal accusations that it's only partisan rhetoric. And it also explains why parents report their kids are being pushed out of IBI -- in the rush to clear wait lists, the government doesn't have sufficient funds to keep them there.

If the Liberal government truly cared about autistic children's futures, they would invest this money immediately to catch up all children deemed in need of IBI, and they would allow every child the full duration of treatment their clinicians' deem necessary. Instead, we are putting off the bulk of this essential spending to future years, allowing more and more children to "age out" of IBI coverage with the age five cap while they wait.

Yes, fully treating every child would require a big investment, but this would more than pay for itself when autistic children grow up requiring fewer supports.

Sadly, our government is seeking short-sighted savings over wise long-term investments. And in this case, at the expense of our most vulnerable children.

The fact that most of the debate failed to engage intelligently in these important issues doesn't matter, because most Liberal members appeared to miss it. By the end of the session, it looked to anyone watching as though there was a clear majority present in the chamber in favour of the motion. Parents were starting to hope that their passionate pleas and weeks of steady public pressure had paid off.

When the debate was called to a close, and the bell began to ring, parents' hearts sank as Liberal MPPs suddenly appeared out of the woodwork, just in time to vote down the motion that they had failed to even hear debated. Their minds were already made up.

Parents reacted with rage and anguish and the house descended into chaos as guests booed and yelled "shame!" One Mom cried: "You have no idea what you're doing to our children!" as others were escorted out sobbing while receiving standing ovations from both opposition parties. They hugged, returned home to put their kids to bed, and continued tweeting their collective #AutismDoesntEndAt5 rage, until all hours of the night.

For these self-described "autism warriors," the battle was lost, but the war will go on.

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