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Someone tell the Ontario Liberals that autism doesn’t end at 5

Huffington Post by Janet McLaughlin 16 May 2016

When the Progressive Conservatives and the NDP agree on something, the issue must transcend ideology. The Ontario government’s recent cut of life-changing therapy for autistic kids has mobilized them both.

On Tuesday the PCs, supported by their opposition colleagues, will move that the Ontario government restore funding for Intensive Behavioural Intervention (IBI) therapy for children five years of age and over.

For the third time in a month, parents from across the province whose children’s futures are at stake will descend on Queen’s Park to watch the debate unfold.

As one such parent, I’ve watched Question Period nearly every day for a month, witnessing members from both opposition parties passionately challenge the government to do the right thing. And repeatedly, the minister and premier continue to insist that their decision to cut kids off of IBI at age five is based on the advice of their expert scientists, who apparently told them that kids over age four are no longer in the “right developmental window” to benefit from the therapy.

On May 14, a social media and personal conversation between the chair of the government’s expert committee, Dr. Ian Dawe, and a mother-turned-undercover-investigator/activist Josie Chaves, was displayed on CityNews. In the exchange, Dr. Dawe had affirmed to Chaves that IBI can work for kids over five and revealed that: “What government funded was not what we recommended.”

Some of the government’s actions directly contradict the experts’ recommendations.

After Chaves made this exchange public, the ministry’s response was to malign the messenger, issuing a statement that said: “We find Dr. Dawe’s actions to be regrettable and unfortunate.”

What’s unfortunate and regrettable is not that Dr. Dawe spoke the truth, but that the government is refusing to listen.

But we don’t need Dr. Dawe to confirm that the government’s actions aren’t true to his committee’s report. This will be clear to anyone who actually reads the document.

Some of the government’s actions directly contradict the experts’ recommendations. The report states, for example, that kids should receive a minimum of 12 months of IBI, when the government’s new program is cutting many off after just six.

And while it’s true that the government-appointed experts state that IBI is more effective before five, they do not indicate that children over four will not benefit from intensive therapy. In fact, plenty of evidence demonstrates the opposite, as do the thousands of children who have made significant gains in Ontario’s pre-existing IBI program, in which (due largely to long waits for entry) 85 per cent of participantswere over the age of five.

It is precisely because the Liberal government failed to invest sufficiently in the IBI program earlier that impacted families have been on wait lists for two to four years while their children “aged out” of coverage.

They feel doubly betrayed. Desperate to obtain the treatment for their children that was promised to them, autism parents have added to their already busy lives by holding rallies across the province, signing petitions, writing letters, doing media interviews, tweeting thousands of messages under the hashtag#AutismDoesntEndAt5, and telling anyone who will listen that they have confidence in their children’s potential to succeed, even if the government doesn’t.

Many have taken notice. Dozens of groups, including school boards, autism support groups and behaviour analysts (whose job it is to administer IBI) have spoken up.

The Ontario Federation of Labour, various unions, the Ontario Advocate for Children and Youth, and a growing chorus of mayors, including of Oakville and Richmond Hill, have all come out stating the changes were a mistake. Newspaper editorial boards across the province have voiced strongly that kids over four should still receive IBI.

Two years of IBI at $50,000 a year is a drop in the bucket compared to 60 years in a group home.

Why should everyone care? Supporting the most vulnerable members of our society should be a good enough reason, but it also makes economic sense. Intensive therapy is costly, but if provided, autistic children are more likely to gain independence and less likely to require expensive supports throughout their lives.

Two years of IBI at $50,000 a year is a drop in the bucket compared to 60 years in a group home. Some estimates place the cost of full-time care of a severely autistic adolescent or adult at $150,000 a year.

The government is standing in opposition to virtually everyone else. Many of their proposed changes to the new autism program are positive, but they got the age five cut-off wrong. The motion on Tuesday will force a vote, in which individual members may choose to stand against their party. I am hoping that many Liberal MPPs will vote with their conscience and put children’s needs ahead of partisan loyalties. It’s not their fault the minister and premier made a poor decision, but it will be their fault if they continue to support it.

The Liberal government needs to admit it made a mistake and put this issue to rest. Many parents are calling for immediate and sufficient direct funding for their kids’ therapy programs, a move that will quickly address further wait lists.

It’s an investment that’s long overdue. Let parents of autistic children get back to spending time playing with their kids rather than having to fight on their behalf.