Saturday, 14 May 2011 00:25

The persistent and pervasive gaps in Ontario’s autism intervention system and the challenges with autism advocacy were in the spotlight today at a conference on motherhood and advocacy.

Sharon Aschaiek of Autism Resolution Ontario presented on issues that arise when advocating for kids with autism in Ontario at the International Conference on Motherhood, Activism, Advocacy, Agency. At the three-day conference, which took place at the Metro Toronto Convention Centre, Aschaiek discussed the many obstacles kids with autism face in accessing publicly funded ABA, and shared information on ARO’s various advocacy accomplishments and its recent foray into creative protest. Then, she focused on a particular issue that can hamper parent advocacy—burnout.

Aschaiek talked about how advocacy movements can lose momentum due to factors such as limited time, money and resources of volunteers; differences among advocates on optimal strategies; fear of government reprisal for engaging in advocacy; and a lack of knowledge on how to advocate effectively. Aschaiek concluded her talk by sharing ideas and tips on how parent advocates can avoid and deal with burnout so as to maintain momentum in their advocacy.

Aschaiek’s talk was part of a panel discussion called Maternal Empowerment and Activism that featured two other panelists: Ann Douglas, prominent Canadian author and journalist as well as political activist, who spoke about giving birth to your activist self; and Andrea Doyle Hugmeyer, a Master’s student from Oregon State University who spoke about her research on Moms on the Move, a mother-led activist group in B.C. focusing on the rights and needs of individuals with special needs.

Following the three presentations was a Q & A with a very engaged and knowledgeable engaged audience that resulted in a stimulating discussion.

For more information on the conference, visit http://www.motherhoodinitiative.org/motherhoodactivism.html.

Saturday, 02 April 2011 21:30

Today is World Autism Awareness Day, and the second anniversary of ARO—a good time to take stock and to look to the challenges ahead, and to consider how to best tackle them.

What the challenges are:

In 2011, in the modern Western nation of Canada that has subsidized education and health care, kids with autism continue to have their basic developmental needs neglected.

1. IBI Waitlist/Restricted Access

Waits of up to five years or longer persist for the Ontario IBI program—despite the fact that early intervention is critical to a child achieving their full developmental potential. As well, kids who are deemed too mild or severe in their autism are denied access to the program—even though IBI has been proven to be effective in kids with all degrees of autism. Timely access to the IBI program is critical to enabling these kids to make progress.

2. Benchmarks

There is currently no system in place for determining when to discontinue children’s IBI—but the Ontario government continues to terminate children’s therapy. Under what basis? Ejection from IBI must be frozen until the government has a proper system in place. Often, as we’re starting to learn from reports from autism families, these terminations take place without discharge assessments, even though these are mandatory. Typically, discharge takes place prematurely, even though a child may continue to need and benefit from it. The government takes a cookie-cutter, fiscally-driven approach in determining how much therapy to allow children, even though autism presents differently in each child and customized intervention is the best approach.

3. Inadequate school services

Students with autism continue to face a severe lack of authentic, sufficient and customized IBI at school—even though it has been well established that kids with autism need IBI—the most established and proven autism intervention—to learn. It is entirely possible to fully accommodate these kids at school, but the school system is unwilling to change, and the government isn’t meeting its responsibility by mandating them to do so. These kids are being forced to choose between school and therapy—no other student in Ontario with a disability has to make this choice.

4. Poor service administration

Pervasive gaps in the ways the IBI program is administered in the different regions in Ontario persists, resulting in inequitable access to service and a bias towards government-provided IBI therapy. The Ontario government needs to completely revamp the way autism services in Ontario are administered so that the system is fair and the services are accessible.

5. Unregulated ABA profession

ABA professionals are unregulated in Ontario, which means our children, who are more vulnerable than other children due to their developmental delays and their inability to communicate in an age-appropriate way, are being exposed to potential risk because current ABA professionals have no minimum standards for education and professional practice, and are not overseen in any way by the government.

What’s inspiring:

1. Our children

As parents, we know how much potential our kids have, and how much they could thrive, if given the chance. They deserve the right to treatment that will help them develop and function in our society.

2. Our ABA therapists

The best ones out there keenly understand our children’s needs, abilities and potential, and how to help them shine. They make a meaningful difference in our kids’ lives and give them the opportunity to achieve their full potential.

3. Parent advocates

Love is a powerful force, and it has been incredible to see how far parents will go when it comes to getting their children the help they need. ARO is a movement entirely driven by parents, and those who have contributed their time, energy and ideas, particularly given everything already on their plate, have made it possible to get the government’s attention and to slowly promote positive change.

4. The power of advocacy

Strategic, innovative and ongoing activism has enormous potential to achieve productive change. We’ve seen it happen with civil rights, women’s rights, minority rights, etc. over and over again. We’ve seen what a difference activists such as Ghandi and Martin Luther King Jr. can make. It’s entirely possible to achieve the same kind of results for kids with autism in Ontario—if we take the kind of bold action required to do so.

5. It’s an election year!

With the provincial election on the horizon, what better time than to make a strong statement about what our children need and deserve? About not accepting mediocrity, lies and unfairness when it comes to autism services for our kids? About demanding that the government live up to its obligation to respect the human rights and meet the developmental needs of this children, who also happen to be their constituents?

What’s next

Action! Our ability to effectively advocate for our kids is as infinite as our love for them—let’s show the government that we can and will work in a united way to take a stand for our kids’ rights. Let’s take creative action that makes a serious impact and sends a strong signal to the government about the risks of mistreating our children, some of the most vulnerable people in society. Contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it to find out about how to get involved.

Wednesday, 26 January 2011 13:55

By Moira MacDonald
Toronto Sun
January 18, 2011

How does the mother of an 11-year-old daughter with autism land in a civil disobedience class?

Not because of casual interest or scads of leisure time. East York mom Kiri Nesbitt turned to civil disobedience training last year after nearly eight years battling the government for proper supports for her daughter Thais, and coming up empty-handed.

“I felt, ‘What else is there?’” says Nesbitt.

Within a few weeks of the two-hour workshop, Nesbitt and other parents of autistic children put their training into action, silently holding up photographs of their kids in the public gallery at Ontario’s legislature last April before being politely but firmly tossed out. A week later the group got a meeting with Laurel Broten, the minister of child and youth services.

The silent protest did not solve their problems, but, as Nesbitt says, “if you do it the right way it can at least get people’s attention and get them thinking.”

The legislature protest was followed by another at last summer’s G20 summit.

Considering the hell many parents of children with the brain disorder go through — burning through savings or selling homes to pay for treatment typically costing $50,000 a year, marriages on the line from the stress, coping with a frustrated child’s outbursts or increasing remoteness while ignorant strangers tut-tut, and trotting their kids back and forth to specialists — it seems an extra injustice that any would risk arrest too.

But it’s that bad, says Sharon Aschaiek. A founder of the group Autism Resolution Ontario, which organized the civil disobedience training, and the mother of a four-year-old autistic boy, Aschaiek says she and others are “past the point of rallies and letter- writing.” They want waiting times for government-funded intensive therapy shortened to no more than a few months (families can wait years), a proper and impartial review of the so-called “benchmarks” used to determine which kids get treatment and for how long, as well as high-quality autism treatment in schools, call Applied Behavioural Analysis, or ABA.

“We are facing a massive social problem if we don’t help these kids now,” says Aschaiek, whose son Jaiden waited 26 months for government-funded treatment even though it’s recognized the earlier a child receives it the better.

It’s not as if the government has done nothing. Its autism funding has climbed from $44 million in 2003 to $187 million this year, including $25 million recently announced which the government says will help 8,000 kids a year.

Advocates like Aschaiek are skeptical and say the funding and where it goes has not kept pace with needs. Services can also be inadequate or cut off too soon, she says. More children are waiting for the most intensive autism therapy, IBI — some 1,520 — than are getting it — 1,400.

Autism numbers have also mysteriously exploded. The government says the figure is one child in 150 — compared to one in 10,000 some 30 years ago. A study two years ago found California autism rates had increased seven-fold in 11 years, between 1990 and 2001.

But why or how this is happening isn’t Aschaiek’s concern — only getting what autistic kids need and quickly. Which is why her group promises “bold events” leading up to the next provincial election.

Big government with bucks versus debt-ridden powerless parent staging a sit-in. Wonder who will win?

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Thursday, 11 November 2010 19:05

November 10, 2010

Pauline Chan of CTV News reports on the extensive waiting list for Ontario's IBI program, and interviews Sharon Aschaiek about the impact of the wait on families with children with autism, and about Autism Resolution Ontario's advocacy movement to achieve more accessible ABA.

Click here to view the story.