Ontario’s new Autism policy: short term gain for long term dependence?

April 22, 2016 · 0 Comments

Autism spectrum disorder is for life, and so are the challenges that come with it.

While these kids, many brilliant beyond average understanding, have unique gifts to offer, it would seem the need for ongoing intense behavioural therapy to reach their world, and help them survive in this one, should not be up for government debate at this stage in the research, according to experts.

Experts in the field have emphasized the need for Intensive Behavioural Therapy (IBI) in children, youth and adults with Autism for decades.

The Ontario Liberal government has announced that, as of May 1, IBI will only by available for children between the ages of two and four, potentially reducing waiting time from the current two years to six months – by pulling other kids out of the line.

Is the government trading short term gain for long term dependence for thousands of Ontario’s special needs kids now unable to access costly intensive therapy?

Many Ontario parents of autistic kids think so, and they have already gathered forces to dispute the change with letter writing campaigns, petitions, and a number of protests across the province, including an emotional April 12 at Queen’s Park for both parents and opposition parties, including Dufferin Caledon MPP Sylvia Jones, who rebuked the Minister’s decision.

“I don’t think anybody thought no more wait list means you’re off!” she said.

Families with heartbreaking testimonials about the sacrifices already being made to provide autistic children the very costly help they need to develop towards independence, drove home the message: “pay now or pay later.”

Pressure is building in the hope that the government will reverse the new policy.

In February, Autism Ontario stated they were “thrilled to learn the news of the significant investment of $333 million for new autism services made by the Ontario Liberal Government” in the 2016 budget.

But, they also stated that they were “hopeful the investment into Ontario’s Autism Services” would include improving services such as early and evidence-based informed and effective intervention available to all children on the spectrum based on individualized, ongoing assessment offered in environments that best support specific learning objectives for each child.”

Premier Wynne announced the new program limiting IBI will give 16,000 more children access to services and will provide “a continuum of intensive services.”

Children and Youth Services Minister Tracy MacCharles, who seems convinced the new system is the best way to provide the most services in “the right developmental window,” says the decision to limit IBI to kids under five is “based on expert advice to focus on children in that developmental window.”

She says autistic children will transition to “enhanced Applied Behaviour Analysis (ABA)” services. As well, the government says provincial plans are in the works for more support in the school system. But, this may mean only 2-4 hours of therapy weekly vs. 20 hours per week with IBI. Parents have been quick to respond that their children have received ABA therapy in the past with poor results, and appear to have little confidence in the ability of an over burdened public school system to deliver the kind of intensive therapy autistic children need.

In a critical letter to the Minister, The Ontario Association for Behaviour Analysis (ONTABA) says that the ABA program is widely accepted “as sub-therapeutic, and does not result in meaningful outcomes according to the literature review conducted by the government’s own Expert Panel Report.”

The ONTABA, with high expertise in the field and experience in government consultation, was not consulted in the Liberal legislation, and are now critically questioning the findings of those experts who provided the support for the government’s position. They also question the exclusion of the Ontario Autism Coalition, which represents parents’ concerns, in discussions that led to the decision.

Dufferin County parent Kelly McDowell says her five year old daughter Emily, who receives IBI three days a week, and waited over three years to start the therapy just this past October, will now be transitioned out.

IBI has been “a great fit for Emily,” says her mother.

“Her gains have been remarkable. This therapy has enabled her to communicate. It will help her function in school, in life and hopefully becoming a participating and functioning member of society. Without it, she has a much lesser likelihood of this happening. Her mortality rate increases and the cost of government support will be life-long for her.”

Kelly, and her husband Julian McDowell, are extremely active with the Ontario Autism Coalition and attended the rally in Pickering last week, as well as the Queen’s Park press conference.

“I believe, because our next assessment happens to be in May, we will be one of the first to be cut from IBI,” says McDowell.

The parents do not know what will happen at that point.

“We have been informed her service will not stop until she is in enhanced ABA,” says Kelly. “But, they don’t know what the in between service looks like, or how many hours the new ABA will be.”

The McDowells are understandably frustrated and worried; they feel the government is “making it sound like they are benefiting ASD children, but they are merely dropping an entire generation in lieu of better service to future generations of ASD kids.”

The couple says any parent would have happily taken IBI for their child at two years, but most, like them, were told “no one starts at two, and although best to start treatment young, Emily would still have very effective treatment at four or five.” Now that opportunity is gone.

“In Orangeville, we have no alternative services and many will be forced to move or drive hours to get service,” says McDowell, “My daughter’s most recent assessment shows that IBI does work over the age of five.” Many hope the government will at least ‘grandfather-in’ the children who are already on the IBI wait list.

According to the Provincial government, the new ABA program will become operational in 2018, and in the interim the Provincial government has promise a one-time payout of $8,000 for “other approved services” for families no longer eligible for IBI. Little consolation say parents, considering full time IBI averages between $50,000 and $75,000 a year and most kids will need the therapy to continue for years as they grow and face new challenges at every age.

At a time when Autism is on the rise, and schools struggling with cutbacks provide a thin, front line of expertise in autism at best, the support for kids with challenges should be expanding in education and into adulthood, but this new plan, which may have been born of good intentions, appears to leave more kids without help.

Ms. McDowell says she hopes the community will step up and help by signing the online petition at: chn.ge/1MIe8d7

By Marni Walsh