History

History of the Ontario Autism Coalition

Written by Laura Kirby-McIntosh©,

Vice-President

The Autism Battle, Part One (“No More Excuses”)

In 2005, a small group of parents founded the Ontario Autism Coalition. Angry at the government’s decision to end IBI treatment for children on their sixth birthday and frustrated by the lack of supports for their children in schools, the OAC dedicated themselves to fighting for better services for all children and youth with autism. Specifically, they developed four main goals:

  1. An end to practice of cutting children with autism off from IBI treatment at the age 6;
  2. Better services for children with autism in schools;
  3. Regulation of IBI therapists; and
  4. A more significant investment in the “direct funding option” to families, instead of funnelling money into the more expensive, more bureaucratic “direct service option.”

In June of 2005, the Coalition held their first small rally in Orillia, hoping to raise public awareness and pressure the government. Not long after that, a second rally was organized in Whitby. And then another in Richmond Hill. And then Burlington, Kingston, Windsor, Kitchener and Sarnia. Over the next sixteen months, the OAC put together over 20 rallies across Ontario to raise awareness about autism and the lack of appropriate supports for those affected. They joked that since their kids with autism often engaged in repetitive behaviours, they would too–and they referred to the rally campaign as a way of engaging in “repetitive protesting behaviours.”  They criss-crossed the province, visiting some cities more than once. Media coverage was extensive, and after five rallies, the OAC was called in to have a meeting with the Minister of Children and Youth Services, where they presented their concerns to the Liberal government for the first time. Many more meetings would follow.

At the same time, a legal case called Wynberg v Ontario was working its way through the courts, arguing that the IBI program violated the Charter and discriminated against children with autism on the basis of both age and disability. Although the case was successful in the lower courts, the families lost at the Court of Appeal in 2006, and related cases brought before the Ontario Human Rights Tribunal also met with disappointing results. The OAC re-dedicated itself to fighting in the court of public opinion.

Over the next two years, the OAC met several times with various Ministers of Children and Youth Services and Education to provide them with not only a description of the problems faced by children and youth with autism, but also a substantial list of solutions. In addition, the OAC held face to face meetings to lobby more than 30 Members of Provincial Parliament. The Coalition held a Day of Action in 2007 in cities across the province and in time, managed to position autism as a major issue in the provincial election that same year. Bowing to the political pressure, Dalton McGuinty finally announced that despite the government’s victory in the courts, his government would end the practice of cutting off IBI therapy at age 6.

In May of 2007, PPM 140 was introduced—a policy memorandum that introduced the use of ABA teaching methods for autistic students for the first time. The provincial government of Ontario released the report of its “Benchmarks” Panel. The panel recommended near-impossible benchmarks for children in IBI service to meet in order to stay in service and was the subject of great controversy. That same year, the Canadian Senate released a report on autism services across Canada called “Pay Now or Pay Later.”  

By 2009, there were many competing voices in the autism movement. In an effort to unify the community, the OAC hosted a “Big Tent Meeting” at Holland Bloorview in Toronto. The OAC surveyed a variety of different groups and then invited them to come together for one day to search for solutions.

The following year, the work from that conference resulted in the release of the OAC “Recommendations Report” that was presented to the government in 2010. The report included 47 detailed recommendations on how to better deliver services to children, students, teens, and adults with autism. Sadly, it never received any formal response from the government.  That same year, the government introduced the “ABA Supports Program,” promising to give support to an estimated 8,000 kids at a total cost of $25 million dollars. Overall, the program met with poor reviews for being clinically inadequate and financially mismanaged.

Between 2011 and 2015, the OAC became less active, as the children of the founders entered their adolescence and their challenges increased. From the sidelines, they watched with hope as the Toronto Star issued their historic series, the Autism Project in 2013 and the Auditor General issued a scathing report on the financial mismanagement of the Ontario Autism Program. Two members of the OAC took their story to the Provincial Advocate for Children and Youth and were thrilled when he launched a project to elevate the voices of children and youth with disabilities. That project led to the release of a report in 2016 called “We Have Something to Say” and highlighted in detail the gap between the promises in government documents and the lived experiences of young people with special needs in Ontario.

An expert panel was struck in 2012 to make recommendations to improve autism services in Ontario. Although their report was completed in 2013, it wasn’t made public until 2016, when the Minister of Children and Youth announced a massive overhaul in autism services.

The Autism Battle, Part Two (#AutismDoesntEndAt5)

Just days before World Autism Awareness Day in 2016, the Ministry for Children and Youth (MCYS) in Ontario announced an historic investment of $333 million dollars in new funding for autism services.  At first glance, the announcement, made by Liberal Minister Tracey MacCharles, sounded like good news, with promises of reduced wait times, flexibility and more intensive service during a child’s “key early developmental years.” However, on closer examination, the announcement included a new age cutoff for IBI: this time, at age 5.  The government said that the new program would allow all children with autism to receive the “service they need when they need it.” They also insisted that they were only following the advice of their expert panel, and that those 5 and over would be able to access the ABA Supports program.

The autism community was not so easily fooled, however. It had fought down an age cutoff before, and it was clear they would simply have to do so once again. The current ABA Supports Program is widely disliked by families, as it provides only 2-4 hours a week and was found by most families to be ineffective. What had started off as a “good news announcement” was, upon closer inspection, clearly not acceptable to young families affected by autism. Parents who had placed their children on the waitlist and patiently waited their turn for a program that offered 20 hours a week of intensive therapy were now being told not only that they would never receive it, but that instead they would be “transitioned” into a program that offered an intensity level that was 90% less. (It’s worth noting here that there still has not been an assessment of the ABA supports program and there is no evidence to suggest that 2-4 hours a week offers any therapeutic value whatsoever.) The announcement of a one-time funding grant of $8,000 to assist those cut off from IBI felt less like a generous offer and more like a slap in the face; families knew that for that amount of money, they would be able to fund only a couple of months of intensive therapy at best.

Response from the parents, friends, and families was swift. An online petition opposing the new age 5 cutoff was launched by a new advocacy group based in Ottawa. The petition quickly took off, gathering over 17,000 signatures in just a matter of weeks. Paper petitions from Monique Taylor and Sylvia Jones, the NDP and PC opposition critics, were also circulated. Parents flooded the Premier’s office with letters and phone calls expressing their outrage, and began calling their local MPP’s. Even in the early days, it was clear that this was the straw that had broken the backs of families who had endured too much for too long.

On April 7th, the Ontario Autism Coalition (OAC) called a meeting in Thornhill to organize parents and map out a political strategy to fight the new policy. The meeting drew twice as many people as expected–it was standing room only. Parents were furious, filled with questions, and most importantly, ready to take action.  The next three months would see some of the most intense grassroots organizing in Ontario’s history.

NDP MPP and MCYS critic Monique Taylor held a press conference on April 12 at Queen’s Park, and families packed the public galleries for an emotional Question Period, gaining significant media attention. On April 14, OAC Clinical Advisor Dr. James Porter met with PC leader Patrick Brown and his MCYS critic, Sylvia Jones, who lent their support to the cause. It was soon clear that both opposition parties would stand behind families in this fight–an unprecedented show of non-partisanship.

Simultaneous rallies were held outside of Liberal MPP offices on April 15th in more than a dozen different cities, gathering widespread media attention. Hundreds of parents turned out for the rallies, and for many of them, there was a sense of release at finally being able to vent the anger that had been brewing for so long. On Twitter, activists started using the hashtag #AutismDoesntEndAt5 and the word quickly spread that the government’s new announcement was NOT the good news we had hoped for. On April 19, families in the Ottawa area demonstrated in front of Parliament Hill.

On April 22, simultaneous rallies took place across the province again, this time targeting different MPP offices in another show of strength. In the weeks that followed, a new generation of parent activists staged “pop-up” protests as the Premier travelled the province announcing a new economic plan. These parents were relentless, confronting the premier directly in Toronto, Milton, and Mississauga.  The Premier’s OPP security officers began to know some of them by name.

The next part of the OAC’s strategy was called “Operation MPP Outreach.” Individual members of the Coalition were encouraged to contact their local MPP’s and share their own personal stories. The OAC leadership prepared a lobbying kit with tips on how to influence government representatives, and how to articulate the disconnect between the government’s talking points and what was really happening to families. Members responded by holding over 30 meetings with their representatives, spreading the word that families were not being given the help they so desperately needed. These MPP meetings would prove to be a crucial part of the overall campaign, as backbench MPP’s began to question the policy they were being asked to defend. That added pressure on the Minister, and that in turn added pressure on the Premier.

At the same time, the Twitter campaign went into high gear. Activists quickly learned that Twitter was an effective tool to target individual politicians and to hold them accountable for their public statements and began to organize “Twitter Storms” targeting the Premier, the Minister of Children and Youth Services, and other high-ranking Liberals who were actively defending the age 5 cutoff. On April 27th, Liberal MPP Arthur Potts referred to these self-styled “Twitter Warriors” as “boorish and bullying,” igniting an angry online reaction from parents who felt they were within their rights to use every tool available to them to demand change. After agreeing to a meeting with OAC leaders, Potts quickly retracted his statement, tweeted a picture of himself with them, and used the hashtag #AutismDoesntEndAt5. One wonders what the result was when the Premier got the news.

With momentum quickly building, it was time for a show of strength.  A massive rally was held in front of Queen’s Park on May 5th. Hundreds of parents flocked to the Legislature with a dazzling array of colourful hand-made signs. Speakers included both opposition leaders, youth with autism, parents of children directly affected by the age cutoff, and the President of the OAC, Bruce McIntosh. But that wasn’t all. By now, the fight had garnered the support of other important allies, including those in the labour movement. Leaders from the Elementary and Secondary Teachers Federations, CUPE, OPSEU, and the Ontario Federation of Labour also spoke at the rally to offer their support. The message to the government was clear: the age cutoff would hurt kids and their families, friends, teachers and support workers would not sit by and just let it happen.

On May 2, the leadership of the Ontario Autism Coalition was contacted by the Premier’s Office and asked to attend a meeting with the Premier later in the month. On May 4th, they briefed the Minister of Children and Youth and presented her with a detailed policy proposal created with the help of the Alliance Against the Ontario Autism Program, another advocacy group based in Ottawa. The proposal focussed on the benefits of a Direct Funding model–placing money in the hands of parents rather than with government agencies who were acting both as service providers and the distributors of that funding . In a meeting with the Premier’s Senior Policy Advisor and his MCYS counterpart on May 18th, the government said that that the parent protests “weren’t entirely unexpected” but insisted that “the policy was the policy.” In the legislature, in the media, and in their initial meetings with the parent representatives, they stuck to their talking points. They were open to discussions about implementation, but a change in the policy, and in particular the age cutoff, was apparently not on the table. It was clear that even more pressure would need to be applied.

As their next tactic, families began turning to their municipal politicians for support. On May 11, OAC member Kelly McDowell gave an impassioned presentation to her local councillors in the town of Shelburne, Ontario and convinced them to pass a resolution calling on the provincial government to remove the age cutoff. Once one municipality had stepped up, other parents decided to approach other local councillors as well. Given the amount of publicity the issue had received, municipal politicians were eager to be seen as part of the solution.  Local news outlets were soon reporting that resolutions had been passed in towns from Ajax to Oakville to Whitby.  Over the next two months, more than 100 municipalities passed similar resolutions, raising awareness and adding pressure to a Premier already feeling the heat.

On May 17th, the Progressive Conservative Party, led by Patrick Brown, decided to force the issue even further in the Legislature. In a rare show of cooperation between the Opposition parties, both PC and NDP members argued in favour of a motion that read:

“That,

  1. The Legislative Assembly of Ontario accepts that Autism does not end at the age of 5;
  2. The Legislative Assembly of Ontario accepts that Intensive Behavioural Intervention (IBI) Therapy is statistically effective at improving the development of autistic children of any age; and
  3. The Legislative Assembly of Ontario supports restoring funding for IBI Therapy for children over the age of 5.”

For the second time since the initial funding announcement, the public galleries were filled with anxious parents who hoped against hope that the motion would pass, or that at the very least, one or two Liberals might actually break ranks. Impassioned speeches from both Opposition party leaders, their MCYS critics and their backbench members included countless personal stories about children with autism being cut off from treatment or being denied treatment altogether because of the new age 5 cutoff. With the Premier out of the country on business, MCYS Minister Tracey MacCharles was left with only a handful of Liberal colleagues to help her defend against the onslaught. As they tried to defend their policy, one Liberal started to say that he could “empathize” with families, triggering a loud outburst and a full-fledged panic attack for one mother. When it was time for the bells to ring and the vote to be taken, the Liberal benches suddenly filled–and every single one of them voted against the motion. Some mothers and fathers watching from the galleries burst into tears, others yelled out loudly, and many raised their hands in a silent gesture resembling the ‘Hunger Games’ salute as a final act of defiance. Needless to say, they were ejected from the galleries. While the results of the vote were not a surprise for those with political experience, they still stung. OAC activists looked forward to a quiet long weekend that would allow them to rest and re-group.

Before that weekend could get underway though, things would take a bizarre twist. As part of “Operation MPP Outreach,” an OAC member from Mississauga, Melanie Palaypayon, had been trying to get a meeting with her local MPP for weeks. The mother of 5-year-old Xavier had attended several OAC pop-up protests and was determined to do everything she could to win back the IBI treatment for which her son had waited so long.  Unfortunately, despite phone calls, emails, tweets and in-person requests, Liberal MPP Bob Delaney refused to meet with her. Fed up, she called his office and served notice that if he wouldn’t meet with her, she would picket his office and hand out pamphlets. Delaney’s office responded by asking Mississauga Police to visit her home, which they did at 8:30 in the morning on Friday, May 20th. Melanie was shocked and frightened. Fortunately, her encounter was captured on home security video–which not only made her incredible story credible, it made for excellent TV.

Melanie’s story quickly made the news and soon, the story was everywhere. It was the lead story on several Toronto news channels, and hit the front page of the Toronto Star the next day. Delaney initially compounded his own problems by issuing a written apology without calling Melanie directly. It was only after he was ordered by the Premier herself to apologize in person, but by then, the damage was done. The opposition unleashed a flurry of questions in the legislature, and the story gave the issue even more coverage than it had earned before. The pressure on the Liberals was more intense than ever.

The OAC’s next tactic was a classic example of grassroots, street level politics. In response to parent complaints about MPP’s refusing to meet with them, the Coalition printed out a series of “Wanted Posters” and put them up in areas close to the offices of the offending MPP’s. The posters included photos of the MPP’s being targetted, saying that they were wanted for “callous disregard for children with autism” and urged readers to call the constituency officers to express their concern. Over the May long weekend, posters went up across the province, garnering even more media attention and rattling the nerves of many Liberal backbenchers and Cabinet Ministers.

It was against this backdrop that the leaders of the Ontario Autism Coalition and the Alliance Against the Ontario Autism program met with Premier Kathleen Wynne in person on May 24th. By this point, the message about the advantages of a direct funding model had started to resonate, and the Premier had said in media interviews that she was open to the idea. She stated early in the meeting that the briefing note presented to the Minister earlier that month was now “framing the discussions” taking place at MCYS about the autism issue. However, it was soon clear that the main job for the advocates attending the meeting was to show the Premier the huge disconnect between the “continuum of care” she envisioned and the expensive, bureaucratic and unethical practices that had become normalized in the Regional Programs set up to deliver autism funding and services across the province. Those in the meeting called for a system where the clinical best interests of the child would be at the centre of any decision making about eligibility, intensity or duration of treatment. They called for an end to the practice of double and triple assessments used only to withhold IBI and filter kids out of the program. At one point, OAC president Bruce McIntosh brought his iPad in front of the Premier to show her how her own numbers proved that her claims that some children would be able to receive “moderate levels of intensity” in the new program was not mathematically possible. The new program allowed for 20 hours of intensive IBI for kids 5 and under, and 2 hours of ABA for those over 5, and nothing in between. By the end of the meeting, the Premier seemed to hear the message being communicated and stated that “individualized treatment is important to me. If that is not what’s happening, we will look into it.” The meeting ended with an awkward moment as the Premier stated that Bob Delaney would be issuing a proper apology for his actions later that day. She added that he had been told that “that [calling the police on an autism mom for planning a solo protest] is simply not how we do things around here.”

By the end of May, there were rumours of a cabinet shuffle in the offing, but the OAC knew they had to keep up the pressure. Next, they began to target Liberal fundraising events, sending small groups of protesters to a variety of locations to show donors that the issue of autism was still very much front and centre. The response from members of the public at street level was overwhelmingly positive, with horns honking, high fives and thumbs up everywhere they went.

On June 5th, OAC protesters visited the sidewalk outside the meeting hall where the  Scarborough Rouge River Liberal nomination meeting was being held. A handful of peaceful activists managed to slow cars and while handing out information sheets to those driving in to vote. Angry Liberals organizers confronted the protesters and called the police, who arrived only to calmly explain that the protest was perfectly legal. The action ended only when torrential rain began to fall, but the message at that point had been successfully delivered for over two hours and the story made local headlines.

On the very next day, June 6th, the OAC held another huge rally at Queen’s Park, attracting even more media attention than the one held in May. Protesters listened to speakers that again included union leaders, both Opposition leaders, Monique Taylor, Tim Hudak, parents, a Board Certified Behaviour Analyst, a special education activist, long-term autism advocates and individuals on the spectrum. Speakers at the rally and reporters alike marvelled at the ability of the autism community to keep up the relentless pace of constant protesting.

The following week, on June 13th, the long awaited cabinet shuffle was finally announced. Tracey MacCharles was replaced as Minister of Children and Youth Services by Michael Coteau. As a former Toronto School Board Trustee, Coteau brought to the table  both his municipal experience and his experience in Cabinet as the former minister of Tourism, Sport and Culture as well as Citizenship and Immigration. Coteau was quick to reach out to the Ontario Autism Coalition, making it clear to President Bruce McIntosh that he was eager to make progress on the file. A meeting was arranged and took place just three days after the shuffle. The meeting was very positive, and it was soon clear that meaningful change might just be within reach. An agreement was made to meet again soon. Nevertheless, the Minister needed to be “initiated” and Minister Coteau had the honour of being targeted by his first OAC protest at his constituency office on June 17th. He greeted the protest with understanding and humour, sending his staff out with cold water and Timbits. About 20 protesters stood in the hot sun for close to two hours, once again drawing hundreds of loud honks from passing cars and trucks.

By this point, the Coalition had established itself as an organization capable of organizing protests, rallies, targeted campaigns and substantial media pressure. The relentless pace baffled many, but it had the desired effect on the Liberals, who clearly felt “under siege.” At the same time, though, the OAC had gained credibility as a serious organization capable not only of rallying public pressure, but also of presenting detailed policy alternatives to the problem.

On June 21st, OAC leaders briefed Minister of Health (and former MCYS Minister) Eric Hoskins, highlighting the way that hospitals and long term care facilities often wind up filling the gap left behind by inadequate services in autism care. They also discussed ways in which the needs of people with autism intertwined: behavioural intervention, education, health services and community supports all need to come together to help an individual with autism truly thrive.  

Meanwhile, Coteau took meetings with a wide range of leaders in the autism community and quickly picked up on the common themes being articulated by all of them–an end to the age cutoff, more investment in the direct funding model of service delivery, proper clinical decision making, and accountability for the nine Regional Service Providers who had been controlling autism services for more than a decade. The Ministry had been working on a re-design of the autism program for weeks now, and by June 24th, they were ready to share their ideas with stakeholders. Back-to-back meetings were held with individual advocates, the Ontario Autism Coalition, the Ontario Association of Behaviour Analysts, and others and one by one, the new plan was presented.

The age cutoff would be removed. The new program would be implemented in one year, not two. Those who had been kicked out of IBI as a result of the first announcement would receive installments of $10,000 to purchase services privately until the new program was fully developed. $200 milion dollars in new funding would be invested to ensure that all kids with autism received the services they needed. It was everything the OAC had lobbied for, and more.

The announcement, of course, could not be made that day. Those who knew the details of what would be made public the following Tuesday were “embargoed,” meaning they couldn’t share any details until the official press conference and statement from the Minister. Nevertheless, the Ontario Autism Coalition found a way to be creative, while still honouring the embargo. Vice-President Laura Kirby-McIntosh and Secretary-Treasurer Sharon Gabison had captured OAC President Bruce McIntosh doing a “happy dance” out by the elevator at the MCYS offices, just minutes after learning the good news. Later that day, they shared the video with their followers on Facebook, explaining that they couldn’t give details, but that Bruce’s dance should give them a general idea of how they were feeling about the coming announcement.

On June 28th, Liberal MCYS Minister Michael Coteau held a small press conference at Queen’s Park and announced the changes. Just ninety-two days had passed since his predecessor, Tracey MacCharles, had announced the initial policy. Observers commented that the policy reversal was unprecedented–no one could remember seeing such a dramatic political change in such a short time frame. With only a few thousand dollars in crowdsourced funding, no office, no paid PR professionals and no paid staff, the autism community had brought the Liberal government to its knees. It was a massive victory.

Of course, there is much more to be done. There is an implementation committee tasked with building the new Autism program, and there are still huge issues with the bureaucracy that manages the current program. There’s the issues of the lack of accountability for both spending and decision-making practices by the Regional Programs. There’s the issue of inadequate services for children and youth with autism in schools. And there’s the reality that children with autism grow into adults with autism who still require support.

Emboldened by their recent success, there’s no reason to doubt that all of these challenges will be met with a new generation of empowered, determined and creative activists. Brought together by social media and a common cause, they’ve proven that they are a force to be reckoned with.

Download A History of Ontario’s IBI Program: A timeline of Autism related programs, announcements, reactions and lawsuits.