Today in front of many affected families, Ontario’s Liberal Government voted against the Progressive Conservative’s opposition day motion to reinstate life-changing Autism therapy for children over the age of five.
Wanna find out how your local MPP voted? Scroll down to AYES and NAYS. (The vote was split along party lines, with the PC and NDP in favour, and every Liberal opposed.)
Here’s the transcript:
Mr. Patrick Brown: I’m happy to rise in support of this motion. The motion provides an opportunity for the government to show Ontarians they are listening and, importantly, reacting to the need to restore funding for IBI therapy for children over the age of five. Some 2,000 children will no longer be eligible for therapy if the government permits this decision to hold. That’s why this motion is so important.
I can tell you, our entire PC caucus was shocked and saddened by the government’s decision to cut IBI therapy for children five years and older. Just imagine that: Over 2,000 children will be left behind.
Since this government announced their misguided policy, letters have been pouring into my office with heart-wrenching stories of children with autism who spent years on the wait-list. These families were counting on IBI as a hope for their child’s future, only to be told that they won’t be getting the treatment they’ve been waiting years for. Many feel they have nowhere to turn. They feel abandoned.
Mr. Speaker, what’s most shocking about the government’s misguided policies is that IBI therapy has been a proven treatment for children over five. The impact and progress made by children is amazing and undeniable. I received an email from a woman from Simcoe county whose eight-year-old son, Sebastian, has autism. Sebastian started IBI in January after waiting three and a half years for treatment. In only three months of treatment he was able to speak, growing from two-word sentences to five-word sentences. He was even able to say, “Mom, I love you,” for the very first time. His mother said that it has been a dream come true to see Sebastian speaking and interacting with his family. Sebastian will be assessed again in October and will likely be denied further IBI treatment because he is older than five. His parents are heartbroken. In reading their letter, you can’t comprehend why this government is not doing the right thing.
Another woman told me about her son, Charlie, in Toronto, who is six years old and has autism. Before beginning therapy, Charlie was almost non-verbal, was not toilet trained, was unable to feed himself, and was easily triggered by ambient noise. Charlie finally began IBI therapy two short months ago. As a result of the therapy he is beginning to respond to sentences and he is now able to eat on his own. Now they will no longer receive funding for therapy. In her words—these are the family’s words: “I cannot describe the anguish of spending years watching my child fall behind while waiting for help, only to have hope ripped away when it finally arrives.” How can this government do that to Charlie?
This morning, in question period, I talked about the story of four-year-old Mason from Burlington, four-year-old Lila from Etobicoke and five-year-old Daniel from Richmond Hill, all of whom have autism. These children may never get the opportunity to receive IBI treatment. Their families struggle to understand how the Liberal government can turn their backs on their children. They wonder if they’ll ever experience their child look at them and have the ability to say, “I love you.”
With private IBI treatment estimated at a cost of approximately $50,000 a year, the government’s changes to funding will only pay for a few weeks of this life-changing therapy. To assume most families can afford IBI shows just how out of touch this government really is.
The reality is that this government is making cuts to IBI because of years of Liberal scandal, waste, and mismanagement. These cuts are prevalent throughout the health care system and this is yet another example of an essential service the Wynne Liberals are cutting. Instead of taking accountability, this government is attempting to balance the budget on the backs of some of our most vulnerable.
As a result of the government’s desperation, not only is the government ignoring the pleas of affected families, the government is ignoring the advice of experts. Last week, Dr. Ian Dawe, chair of the government’s Autism Spectrum Disorder Clinical Expert Committee, spoke out against the government’s cuts.
Although Dr. Dawe praised the positive impact IBI therapy can have on children with autism, he admitted to an affected parent that there is no evidence that children over five would not benefit from IBI. He also said that the government’s changes to autism funding are not what their panel recommended. He has voiced his concerns directly to the Premier, yet the Wynne Liberal government is unwilling to listen to experts and unwilling to listen to families. It is a sad day in our Legislature when this government is more concerned with the bottom line than with children and families dealing with autism. Unacceptable.
Another problem is that no one trusts this government. No one is buying their lines. No one trusts the fate of a child with autism in the hands of this government. Even though the government has kicked these children off the IBI wait-list, they cannot wish them away. Children over the age of five still have special needs the province must address. The wait-list for a less intensive form of therapy, ABA, remains at approximately 14,000 children, and it’s clear the Wynne Liberals don’t have a real solution or a plan for those kicked off the IBI wait-list. These children have no other option.
Voting in support of this motion will be a first step by the Liberal government to demonstrate that they are willing to change, that after hearing expert advice, after hearing families, after actually talking to Ontarians, it’s never too late to do the right thing, and that we must, for the sake of these children, do the right thing.
No child should be left behind in receiving the necessary support they deserve. Children with autism and their families deserve better from this government, and that is why we have introduced this motion. The Ontario PC Party believes that every single person in Ontario should have the opportunity to reach their full potential. We will continue to stand with families and children affected by autism and we have continued to pressure the Liberal members to reverse their decision and allow children over five years old to access IBI therapy.
Sadly, it would appear the Liberal government will only listen if you buy a $10,000 ticket to their fundraisers. These families don’t have $10,000 to participate in this pay-to-play environment the government has created.
I urge the Liberal members to show families in the gallery today and families throughout the province that they are listening and that you don’t have to show up at a Liberal fundraiser. Do the right thing. You know families depend on this. Experts know that families depend on this. This is an opportunity for Liberal MPPs to do the right thing, to support this motion and say they stand with families, they stand with children.
This is an opportunity. Liberal MPPs have an opportunity to potentially change the lives of so many incredible children. Before the Liberal members vote this afternoon, I want you to think of Mason, of Lila, of Daniel. I want you to think of the devastated families, too many to count, who are being forced to sell their homes to get a chance to provide the IBI treatment their child deserves.
Ms. Andrea Horwath: It’s my honour to rise as leader of the Ontario NDP caucus and as a mother to support this opposition day motion. I have to start by saying that I find it very unfortunate and regrettable that we even have to have this debate in the House. Let’s not forget that it was this very Premier who said that every person with autism “deserves … support, and has mine.”
I guess the Liberal version of supporting children with autism is removing them from life-changing, evidence-based therapy simply based on the year that they were born. For those of us on this side of the chamber, that is just plain wrong, which is what former Liberal Premier Dalton McGuinty said the last time the government was forced to reverse course on age caps, back in 2006.
Not too long after that, I was named the NDP critic for children and youth services. This was before I was the leader. I took over from the very passionate MPP Shelley Martel, who—just to take a quick trip down memory lane—this government actually took to court. The Liberal government took MPP Shelley Martel to court because she was doing her job fighting for vulnerable kids. They spent money fighting her in court instead of investing in therapy for children with autism.
By the way, the education minister of the day, who was supposed to clean up the Liberals’ act when it came to autism and IBI and ABA therapy, was none other than the person who is currently occupying the Premier’s chair in this province. She was the education minister from 2006 to 2010. It was her job to make sure that kids weren’t languishing on wait-lists, and here we are with them still languishing on wait-lists.
Around that time, I actually had Bruce McIntosh, who’s here today in the gallery and is president of the Ontario Autism Coalition, on a panel talking about this very same issue—10 years ago. Can you imagine that? All those years ago, parents were having this exact same fight. I want to speak to those parents right now. I’m in awe. I’m in awe of their strength, of their dedication, of their passion, of their perseverance. As a mother, I understand. I understand fighting for your children to have the best opportunities to succeed. I understand not giving up: not giving up the fight, not giving up on your kids.
These families have come to Queen’s Park three times already in just the past couple of months. Over the years, these families have come countless times to fight for their children, to fight against a government that for 13 years has been in power and has done nothing except kick kids off of a waiting list to get IBI therapy. To ensure that the voices of their children could be heard, these families have come time and time again to this chamber. To ensure that the voices of their children are respected, these families have come time and time again to this Legislature and to these front lawns.
They’re fighting a government who has pulled the rug out from under them. It is simply “too cruel,” in the words of the Toronto Star, to wait and wait on a list for therapy that doctors and clinicians have told you would make all the difference and would have a profound impact on your child’s life, that would allow your children to communicate with the outside world, that would allow your child to express in some way how they are feeling, and then, with a stroke of the Premier’s pen, to be told your child will never receive access to that therapy, to feel like your heart has been broken, has been torn right out of your chest, and, in the words of Kristen Ellison, be forced to mourn the loss of your child’s potential.
In the case of Heather Bourdon, and thousands of parents like her, to sell your house, to sell your possessions, everything you have, to move your family of five people into a one-bedroom apartment just to make sure that your child can have the best possible start—families in Ontario should not have to sell everything they own to pay for life-changing, essential therapy for their children. This government has a duty to provide children with autism with the services that they need.
Speaker, the Liberal legacy on the autism file is nothing short of shameful and disgraceful. The Provincial Advocate for Children and Youth, whose job it is to advocate for vulnerable kids, has called out this government, saying that it’s “a mug’s game,” what they’re doing right now with their change in policy, that this decision was about getting rid of wait-lists and not about what’s best for children.
Perhaps the most damning is the chair of the government’s own expert panel, Dr. Ian Dawe, who has echoed what New Democrats have been saying all along: “What the government has funded was not what we recommended.” I want to repeat that: “What the government has funded was not what we recommended.” This is the chair of their expert panel on autism therapy and funding.
Our critic, Monique Taylor, has asked the Minister of Children and Youth Services countless times to show us where this report that was issued says that IBI doesn’t work for children over the age of five, and she can’t because—guess what?—the report doesn’t say that. How can this government possibly dig in on these changes when the experts they’re depending on have come out against them?
Speaker, I just want to say that this government and this minister cannot claim to be following the science while they are actively ignoring the experts behind the science. It doesn’t work that way. I know this might shock the members across the chamber, but they don’t know more than the clinicians, the experts, or the parents, for that matter. This Premier does not know more than the experts, than the clinicians and the parents. She just doesn’t. It’s really insulting for them to pretend that they actually do. It’s insulting every time a member on the opposition benches gets up and reads the story of a desperate and heartbroken family and the Liberal members yell and heckle. It is insulting that that happens in this chamber, Speaker.
It’s insulting that the government ignored the actual suggestions of the expert panel, but then claimed to be basing their policy on it. What is the point of appointing an expert panel if you’re just going to arrogantly ignore whatever they have to say anyway? What is the point?
You can’t pick and choose the facts. It’s time for the Liberal government to do what’s right. It’s time for them to stop worrying about themselves and worry about the needs of families across this province. We’re talking about vulnerable children. We’re talking about very expensive therapy that families can’t afford to pay out of their own pockets, and that’s when they turn to government or when they should be able to turn to government for that help to give their kids an opportunity to be able to communicate with the outside world, to be able to reach their own potential. That’s what they rely on their government to do.
Children who teach us so much about unconditional love, children who teach us about acceptance, children who teach us about a new way to look at the world: That’s who we’re talking about when we talk about these children. They teach us about things like kindness and compassion. They deserve so much better than the hand they are being dealt by this government.
I’m on the record now, and I want to be clear with families here today and across this province: Parents and kids know that autism does not end at five, and I know its treatment should not either. You have my word that New Democrats will stand with you through this fight, just like we have stood with you for well over a decade. We will not give up, and we know that you won’t give up either. We know that you and your children deserve so much better. Children with autism deserve access to the therapy they need, regardless of their age.
I’m going to end by quoting myself, Speaker, back in 2009, when I said, “These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.” And here we are, seven years later—seven years later.
This government has been in power for 13 years. Dalton McGuinty was dragging these families through the courts back then, Speaker, dragging these families through the courts. These families were saying, “Just because our kids reach a certain age doesn’t mean they don’t deserve therapy. It doesn’t mean they don’t deserve an education.” They were right then, and they are right today as well.
Hon. Tracy MacCharles: I do want to thank the opposition for giving me a chance to rise today to clarify a number of elements of the new autism program and dispel some myths about recent changes to the Ontario Autism Program.
I’d also like to welcome and acknowledge the families and the children who have joined us today, as well as the autism action groups and associations who are here. I have met with a number of them, and I look forward to continuing to meet with and hear from families and association advocates.
I want to say off the top, Speaker—I’ve said it here in this Legislature, and I want to say it to the opposition specifically—I agree that autism does not end at age five. As both the Premier and I have said in this Legislature, our government is committed to improving the lives of the 40,000 children and youth with autism in Ontario, and the lives of their families as well.
In recent years, accessing therapy and services has become challenging and sometimes confusing. Wait times are unacceptably long. Spaces for therapy are too few in number, and the way we have historically delivered services has not been responsive to the unique needs of each child with autism.
Without action now, Speaker, we know that challenges will only grow. Children will be stranded on wait-lists for years, not months. Therapy that should come sooner will be delayed. Fixing these challenges is what motivates our government and what motivates me personally, as the minister: to help families, to ease their burden, to increase opportunities for children with autism, and to get them the services they require when they need them.
For all these reasons, Speaker, we are creating the new Ontario Autism Program with an historic investment of $333 million to improve and expand children’s autism services over the next five years. With this new funding, 16,000 more children will receive the critical interventions they need. Let me repeat one more time: Our investment, Speaker—a third of a billion dollars in autism services—will ensure that 16,000 more children receive the services they need when they need it and how they need it.
Most important of all, this new program ensures supports and therapy will be tailored to the children and their individual developmental needs. In the new program, all children, regardless of their age, will be assessed upon entry and then provided the services and the level of therapeutic intensity that is best suited for them. For the first time in Ontario, we are developing a program that has a continuum of care and services that personalizes care to the unique needs of every child with autism.
When the new program is fully implemented, families will find services much easier to access and navigate, and families will find that the new program is responsive to the needs of children irrespective of age. Based on the work that we’ve done with experts and with the families themselves, we believe that this new program will deliver what those living with autism need. It will fix the problems that we’re facing today, and it will keep those problems from growing greater.
This is our vision and what we’re going to work towards for the new program. As we design and implement the new program, we’ll be considering how best to deliver those services, including looking at the direct funding model. I’ve heard from families and experts on this. We’re going to work hard, get as much advice as we can, and we want to get this right.
We also recognize that, with this level of investment, we have to work through a period of adjustment as the new program is implemented. The transition, though difficult, will not affect most families. That’s important to emphasize. It will not affect most families of the 40,000 children living with autism. There are roughly 2,200 families across the province, however, who will feel some effect during this two-year period. In the main, these families with children currently age five or older on the wait-list for intensive services will be better supported.
I know change can be challenging, and people naturally want to hear exactly how it will affect their child. For this reason, we’re paying specific attention to each and every one of these 2,200 families on a case-by-case basis. They will—and, in some cases, have already—hear directly from their service provider about what these changes mean for them. In addition, these families will all receive funding to help families purchase the services that they need where and how they need them right away.
In short, we’ll work hand in glove with families. We’ll maintain close contact as these changes are implemented to ensure that these families are hearing from us and that we’re hearing from them, that we’re aware of what they’re experiencing and that we are able to monitor those effects on a continuous basis.
It won’t be simple and it won’t be without challenge. But the transition to the program will leave us with a set of services that support the work far better and therapy tailored to better meet the needs of individual children, with 16,000 new spaces and shorter waiting lists. In short, Speaker, it will better serve all children and youth living with autism and, in doing so, it will better serve us all.
Ms. Sylvia Jones: There are so many areas that I could delve into after the minister’s speech, but I’m only going to leave you with one: What are these families supposed to do for the next two years while you try to get this right?
I want to talk about a family who actually isn’t going to be impacted by this announcement, but it drove home what happens when we mess up a file, and the autism file is an example of where we have messed up from the very beginning. I’m just going to read from this woman who lives in Dufferin county.
“I am writing this letter in response to the recent cuts and changes to the IBI program for autistic children by your government and to voice my deepest concern regarding this move. I find it difficult to believe that a treatment that has been proven to work is being cut….
“I know from experience what life is like for these parents and their children now and what it will look like in the future. You see, Premier, I have lived it every day for the past 39 years. I am a parent of an adult non-verbal adult son with autism who lives at home with us, his parents. If this treatment had been available 39 years ago, I would have fought with everything in me to have him enrolled! I speak from first-hand knowledge when I say I know what impact this disorder can have on children and their families.
“My son cannot speak, write or read and maybe functions at about an age three level. He lives in a world with no voice and where sounds, touch are painful. What I wouldn’t give to have him say, ‘Mom,’ for him to have even some of the things we all take for granted. He will have to rely on others his whole life for his most basic needs, his safety and care. As parents you hope and pray that when you are gone that those entrusted to care for him do that and pray he is not abused. This is a constant worry. This is the future you are asking the parents of these children to endure.
“You have the opportunity to change the path for these children with autism. Madam Premier, there is a saying, ‘You have to walk in someone else’s shoes to fully understand what it is like.’ I hope you never have to find out what those shoes are like. It becomes much more personal when you have someone you love and care about walking this path. The cost to society can’t be measured just by money spent for benefits and programs. It is much more far reaching than that! It is also the hardships financially, and emotional, these families face. These costs have to be factored in as well.
“Premier, families are separating because parents cannot cope, they are struggling financially to provide care, their income is being impacted as they try to figure out how to be parents to their special needs-children—adults. And all that entails. They are on call every minute of the day and night, 24/7, 365 days a year. They are caregivers, parents to other children, grandparents and also have to deal with the other everyday stuff everyone has to deal with on a regular basis….”
The letter goes on, Speaker, but I’m going to close with her plea to Premier Wynne: “I ask, Premier, that you reconsider funding for these children. Make a difference. You, Premier, have the power to change the course of these children’s lives. Please use it!!!” That’s a letter from a woman in Mulmur.
It amazes me that we are couching this in some kind of, “It will be better when….” These announcements are already in effect. May 1 is when the change happened, and yet we’re talking about, “In two years it will be better; just be patient.” Well, you know what? In 2003, the leader of the Liberal Party said that the “lack of government-funded IBI treatment for autistic children over six is unfair and discriminatory.” That was Dalton McGuinty in 2003. Have we learned nothing since then?
Miss Monique Taylor: As our leader has said, it’s truly regrettable and unfortunate that we have to have a motion in the House today to tell the Liberals that autism doesn’t end at five. It’s not a complicated concept, but the Liberals have decided to dig in on an issue that impacts our most vulnerable kids.
As I speak today, I hold the thought of all of those children whose lives are being impacted by this government’s callous decision to take away IBI therapy from them, especially Justin and Anthony, whose mothers were here with me back in November. They came to share their stories of waiting on a wait-list for therapy that they knew would have life-changing impacts. How did this government respond? By ensuring that children over five would never receive access to publicly funded IBI therapy.
They tried to make a good-news announcement. They tried to hide the fact that they were taking essential therapy away from kids. But you can’t hide from parents. They are the warriors for their children, and I’m proud to stand with them, as I know the member from Dufferin–Caledon, the opposition critic, is as well.
Since the government is claiming that these decisions were based on science and facts, let’s talk about the facts. In Ontario, children, on average, are diagnosed with ASD at the age of four—Speaker, that’s right, I said four—and the cut-off for intensive therapy is five. Does that make any sense? I guess if you’re trying to save money, it does. Or if you’re just trying to make a good-news announcement and you have made it clear that you don’t care about the impact that it will have on some of Ontario’s most vulnerable children.
Let’s be clear: We know why the cut-off was set at the age of five. It wasn’t because the expert panel said it should be. It was because, as of October 2015, more than 90% of children receiving IBI were over the age of five. So you would only have to pay for 7% of the children to remain in service, and that’s shameful.
Do you know what else is shameful? Actively ignoring the advice of your own expert panel and then calling the truth “unfortunate and regrettable.” The report, just in case the government hasn’t read it, says that IBI should be given for a minimum of one year for it to be effective. So what does this government do? It gives families $8,000, which is less than two months of IBI therapy, which surely doesn’t fit in with what the experts have said. Parents now know that there are positive impacts of the IBI on their children, and then it will be ripped away from them. That’s cruel and unfair.
Let’s talk about kids who start IBI before the age of five. Their parents are being told that they will only have six months of treatment, since once they turn five they are no longer eligible. The experts say—again, if the opposition members haven’t read the report, I highly recommend it—that kids should start IBI before five and receive it for a minimum of a year, so as long as it is still clinically beneficial. You can’t just pick and choose the facts and misrepresent the science. You can’t claim that the experts behind the scenes and behind the science have it all wrong.
This government has it wrong, and they’re too arrogant to admit it. Arrogance is getting in the way of children getting access to the services they need. If all you can say about the chair of the panel coming out and saying you got it wrong is that he is no longer the chair, then you really have no legitimate answer. The Liberals think they know better than the experts and the clinicians.
Let’s talk about what this really means, though. I’ve spoken to hundreds of parents who tell me stories that break my heart, about what not having access to therapy looks likes for them. They send me pictures and videos of children who cannot tell them what’s wrong when something is very clearly wrong. They feel helpless and they have nowhere to turn. They tell me how much they would give up just to ensure that their children have what they need. The government shouldn’t be forcing parents to give up everything just to get access to basic health care. These children deserve access.
I want the members opposite to think about what they would do if this government was trying to steal services that their children needed. Would they just sit down and let it happen? I doubt it. They should empathize with these parents who come here today and day after day just to make a point, because I’m sure that they would do the same. They need to step up today and have a spine to stand against a government who are making a bad decision. Will they be remembered for taking away essential life-changing therapy from kids with autism or will they be remembered as elected officials who don’t have the gall to stand up to their own government and fight for vulnerable kids? It’s really up to them.
Parents are frustrated with a government that won’t answer questions, that won’t meet with parents, that makes decisions without properly consulting. I share in their frustration. I’m frustrated with all this spin and not ensuring that all the children have access to the services they need. I’m frustrated that the voices of children who would have thrived through IBI are not being listened to, not being heard, and not being respected.
As a youth with special needs at the provincial advocate’s recent event said, “We don’t actually want you fighting over us, we just want you to provide us with what we need.” The Liberal members need to hear that. Provide children with what they need. Please make this decision about children. Put children first. Do what’s right.
I know that they’re divided on this issue. I know that many of them have privately told parents how uncomfortable they are with all of this. Now is the time. I know IBI is expensive but the cost of inaction is far greater. Two years of IBI at $50,000 is a drop in the bucket compared to the cost of 60 years in a group home. It’s fair to be proactive and it makes sense.
To experts who have gone over and above and come out vocally against these changes, thank you. Thank you for raising your voice for this injustice. Thank you for not accepting a government that wants you to be more concerned about population ethics rather than individual ethics. Every child matters. Every child deserves the support that they need to thrive.
To the parents who are here again today, I’m sorry that you have to come here day after day. Just know that I am with you, and I promise to fight with you, and for you and your children. It is my privilege to fight for your children’s rights. Meeting and interacting with children on the spectrum has taught me so much. It has left a lasting impression on my life. I will not let this government hurt your children. Don’t give up the fight, because no government knows better than parents when it comes to what is best for their children.
Governments can’t sit idly by. You can’t sit on your hands while these numbers continue to grow. By introducing this opposition day motion today, that is what the opposition wants us to do. They want the government to not react. They want the government to stay with the status quo. Well, the status quo isn’t good enough.
One of the scariest statements in the English language—I’ve said this before—goes like this: “This is the way we have always done it.” Well, as the Premier, the Minister of Children and Youth Services and many others have stated, the way of the past was leaving too many children behind. That is why we introduced this new program to ensure that 16,000 new spaces are created to get children off the wait-list to get the service they need.
Let’s be clear about what this opposition day motion means. Unlike some of the emails that went out to families from members of the opposition, this vote, at the end of the day, isn’t a confidence vote. That vote was the 2016 budget, and of course the opposition voted against it and the new services for children with autism, which isn’t shocking. That wasn’t shocking.
But let’s be clear, Mr. Speaker, let’s be very clear about what they voted against. It was the opposition that voted against a third of a billion dollars, $333 million. They voted against creating 16,000 new spots for services for children with autism. That’s $333 million on top of the already-existing $190 million that is there for services.
So rather than looking at ways of improving the system, rather than looking at ways of making it better and seeing the third of a billion dollars as progress toward improving the lives of thousands of individuals and families, they are using today’s motion to stir emotions and cause more concern for families, concerns these families do not need.
Mr. Glenn Thibeault: The guest was right: None of us actually knows what it’s like to be the parent of an autistic child. I can only empathize, and I did it for 15 years of my life. For 15 years I was a foster parent, I was a respite provider, I was a front-line service provider. I can understand what it is like, but I can only empathize. I have stood there with parents when their child was having an incident. We’ve got the scars; parents have the scars on their faces. I have the scars on my face, right? We’ve had the plates thrown at us. But you know what? We’ve also been there when we’ve seen the good things that happen. When you see your child progress, when you see and hear that first word, those are the things that we see on this side of the House as paramount and as important, and that is done through ABA, applied behavioural analysis. Evidence-based strategies provide the consistency to children with autism.
It’s completely understandable for parents to be very concerned when they hear from the opposition parties that those services are being cut. Well, there are no cuts. It’s only the opposition that would see $333 million, or a third of a billion dollars, as a cut. The old system was completely unsustainable. As stated, one out of 68 children in this country is diagnosed with autism every year, so sticking with the status quo would have continued to see too many children waiting years for vital services and missing significant development milestones.
Our plan, the plan the opposition voted against, will see kids get off the wait-list. This motion, if implemented, would deny children with autism access to these new and improved services. It would deny them shorter wait times and individualized, custom care. This motion brought forward would ensure kids are put back on the wait-lists, seeing these wait-lists grow to over five years by 2018. As I mentioned at the outset, one out of 68 children is diagnosed—
This government agrees with parents and advocates that autism doesn’t end at five. It’s preposterous that the opposition would think that this is something that should be debated. But most importantly, we recognize this is a lifespan diagnosis, and that’s why there is no age cut-off for services under the new program. In the new Ontario Autism Program—and let me emphasize this—all children with a diagnosis, including those five years old or over, will receive better services sooner that are customized to meet the individual needs, including those who require intensive therapies and interventions.
For decades, this is what families have been asking for: individual service plans, personalized service plans. That’s why we acted with a historic investment in children, an investment of an additional $333 million. That’s on top, as I said before, of the $190 million, creating 16,000 spots for children and youth with autism, regardless of age. That’s good news to thousands of families.
It is also paramount that families hear that ABA services, as we know them, will change drastically in the new autism program. In the new Ontario Autism Program, intensity of services will be more flexible and individualized than in the current ABA program and based on the child’s needs—
Mr. Glenn Thibeault: —the number of hours per week, and the number of goals to be personalized with the clinician to ensure that each child receives a continuum of service responsive to their needs. So when the opposition claims that ABA services are being cut, they’re not providing the right information to families.
Mr. Glenn Thibeault: —will see that continue. No child currently receiving services will see those services taken away. Even though the opposition will try and say otherwise, letters from service providers and from the ministry’s regional offices outline that. You will also hear from service providers and from regional offices that if your child is five and currently on a wait-list and does not have service, contracts are now starting to be signed to provide $8,000 for immediate purchase of service. After that direct funding allotment is spent, these children will benefit from the new continuum of care and will receive other publicly funded rehabilitative supports, including ABA. So the unfounded claim that the government is cutting IBI and ABA services is just that: unfounded.
Once the new Ontario Autism Program is fully implemented, the distinction between ABA and IBI will no longer exist as they will be combined to make one program that will be better in quality, flexibility of services, length and intensity of services. We are the only province that differentiates between ABA and IBI. British Columbia calls it EIBI. Do you know what we’re going to do here, Mr. Speaker? I know that parents don’t care what it’s called. They could call it ABA or call it XYZ.
Mr. Glenn Thibeault: Parents want to ensure that their child is getting the right service at the right time with the right intensity and that’s what this new program will do. It provides that for children with autism.
While ABA is a profound service that makes a difference in the lives of so many on the spectrum, it’s not the only service out there. Children over the age of five are eligible to receive a variety of government-funded programs, including any level of intensity of service deemed needed by their clinician—let me repeat that again—any level of intensity of service deemed needed by their clinician in the new OAP program: current ABA services, respite services, speech and language pathology, occupational therapy, mental health services, physical therapists, school supports, March break camps, summer camps and so much more.
That’s why it’s paramount that I address point (c) of this motion. Point (c) reads the following: “The Legislative Assembly of Ontario supports restoring funding for IBI therapy for children over the age of five.”
It is critical for our government that we do not focus on age but, rather, a life-span approach to autism, working with partner ministries to pilot programs that will help kids with ASD transition into adulthood. As we said all along, autism doesn’t end at five, and it surely doesn’t on your 18th birthday.
Sadly, for adults with ASD, the unemployment rate is over 80%, and that is something that must change, as well. While we are working with stakeholders to address that currently, the changes that we are making now in the new OAP will help in lowering that number to ensure that today’s children become active participants in our province and in our communities.
That is why we are creating a program that will deliver the right service to children, regardless of age, regardless of intensity. We will deliver a personalized and individualized program for children with autism.
This motion brought forward by the official opposition does nothing but stir fear in parents and stakeholders. It does nothing to recognize that more needs to be done. That is why I cannot vote in favour of it. We are already doing so much more than what this motion calls for. We will not sit on our hands while one in 68 are diagnosed and are in need of service. We will not continue to have children sit on wait-lists. We will act, we will listen and we will make the lives of families and individuals living with autism better.
Mr. Jim Wilson: I’m pleased to speak on behalf of our province’s autistic children and their families. I’m happy to do it, and I know that all members of the PC caucus and the NDP caucus are, as well.
We have to speak up for these individuals, because the government certainly doesn’t care about them. We are debating this motion today because the Liberal government recently announced its new autism programming. Unfortunately, these changes limit intensive behavioural intervention therapy to children under five years of age, so if your child is five or older and IBI is working, that’s just too bad; your child no longer qualifies for the therapy.
The children and youth services minister says that this new program is based on expert advice, and that the age window of two to four is the best time to focus on IBI therapy. While it may be expert advice, it’s flawed advice, nonetheless. I say that it’s flawed because moms and dads across this province say that it’s flawed, and they are the greatest experts of all.
Autism does not end at five, nor should IBI. Thousands of people have demanded that the government not go ahead with this change, but in true Liberal fashion, they know what’s best and no one on the government side of this House is listening. The Liberals like to change who can access IBI therapy because it allows them to play a numbers game. Sadly, that game involves our children. Suddenly, a whole lot of children aged five and older don’t have access to provincially funded IBI. Using the numbers from the Toronto Sun, the move affects 1,377 children five years and older who are already receiving IBI, 835 children in that age group who are on the wait-list, and a further 1,331 who are expected to turn five while they’re still on the wait-list.
This leads me to talk about Adam Laver. He’s an eight-year-old boy who lives in Beeton. Adam’s parents applied to get on the province’s IBI waiting list in May 2013. Now, because of the rule changes, Adam will never get provincial support for IBI, and that’s sad, because if he had qualified, he’d get a minimum of 20 hours per week.
At any rate, despite all of this, Adam’s parents put him in private IBI in August 2014. They’ve been paying a staggering $1,200 a month for almost two years. That’s a lot of money; that’s a mortgage payment for many people in my riding. For that amount of money, Adam gets nine hours of therapy a week. His mother, Nancy, told me he’s doing well on the nine hours. He’s a different kid. With the limited amount he gets, he’s doing fantastic. He now talks in eight-to-10-word sentences. Before, it was two to three words a sentence.
Adam’s parents know how expensive IBI is because they’ve been paying for it out of their own pockets. If they could get the IBI support from the province that their son deserves, developmentally he’d be even further along.
No one is arguing that IBI isn’t expensive. It’s a lot of money, but it makes a world of difference for the children who receive it and it needs to be a priority for this government. If we don’t do everything in our power to help these children, then we are not the caring society we purport to be. We are letting these children fall behind, and that will cost us so much more in so many ways in the future.
Mrs. Lisa Gretzky: Although it’s unfortunate that I have to get up to speak to this, I’m glad that I do have an opportunity to lend my voice. I’m going to look at this from a slightly different lens than has been brought up so far. I’m going to talk about the education sector, as the member from Sudbury touched on it.
He also liked to talk about what the NDP do or do not support, so I’d like to clarify what we do or do not support. We certainly do not support kicking kids aged five and over who have autism off a list for service, so let’s be clear about that.
Also to the member from Sudbury, we don’t support a government that, over the last three years, has committed over $1 billion to the education sector and has not actually forwarded that money to that sector or spent it on the children in the education system.
We certainly do not support a government that, this year alone, has cut $8 million in special education funding—funding specifically for children like those with autism. They’ve cut that from 25 school boards—$8 million. They’re already starving school boards of money for special education needs. They are only compounding that problem.
I’d like to speak about some of the quotes coming out of the education sector. Just last week, there was a quote from Lynn McLaughlin, who is the superintendent of special education for the Greater Essex County District School Board, the public school board in Windsor. She said, “We’re concerned because there’s still so many questions.” This government is not even forwarding information to the school boards to let them know what the plan is or if there’s funding coming in order to support these children once they’re cut out of service.
I’d also like to share, from the education workers, from CUPE, “‘This is devastating for the 30,000 families with children who have ASD diagnoses,’ said Terri Preston, chair of CUPE Ontario’s school boards coordinating committee. ‘It comes at a time when we are already seeing massive cuts to supports in schools, including hundreds of educational assistant positions being eliminated. How are we supposed to build a better Ontario when so many children with ASD, developmental disabilities and learning disabilities are being abandoned by the province?’”
Speaker, we’re seeing it across the province, where the boards are being forced by this government, because of a lack of funding, to lay off the very staff who are skilled and professional and who can work with these children and actually support them. They’re being laid off. There’s no supports for the kids in the education system, and there’s no plan to support them.
Although the member from Sudbury can talk about how different ministries are working together, how the Minister of Children and Youth Services can stand up and say what a wonderful job the Minister of Education is doing and how well they’re working together, clearly they’re not working together. They are not communicating with the families; they’re not communicating with the school boards who are trying their hardest to service these kids and help them reach their full potential. They’re not helping.
There’s a quote from Sam Hammond from the Elementary Teachers’ Federation of Ontario. “He told a rally of parents of autistic children”—hundreds of parents, thousands even, who came to Queen’s Park recently over this—“that Premier Kathleen Wynne’s cuts to intensive behavioural intervention or IBI therapy will put a system already lacking supports ‘over the edge.’” I could not agree more.
These are the professionals, not the members on the government side. They’re not professionals in this. The member from Sudbury mentioned, “You don’t know unless you’ve lived it.” They’re not living it, and they are not listening to the experts. In fact, when Dr. Dawe comes forward and says what they’re doing is not what was recommended, they throw him under the bus and say—
Speaker, I have great concerns and families have great concerns about the fact that their children are now being thrown into the education system and being told that they are going to support them in there. Every one of the families in this room knows that that’s not happening. This government is sacrificing these children. These ones you’ve kicked off the list—you’ve put an $8,000 price tag on their heads. That seems to be all they’re worth to you.
Mr. Granville Anderson: Thank you for the opportunity to speak to this motion today. I also want to thank the parents who are here today. I know what it’s like to be a parent. I’m a parent of two children, one from the age of two and the other from nine months, so I understand that you want what’s best for your child. So do I. They’re adults now, and so do I.
I was also a school board trustee for 12 years. I spent 10 of those years on SEAC advocating for children such as yours. It’s refreshing to see the opposition now advocating on behalf of children. I have been doing that for a very long time.
Mr. Granville Anderson: —what it is we are debating today: an opposition motion that, if supported, would deny some children with autism their access to new and improved services and would create longer and unsustainable wait times. It would also keep children with ASD from getting the individual and customized care that we know they need.
I also want to dispel a rumour, Speaker, one that the Premier tried to dispel last week, and the minister on many occasions has commented on this. While the $8,000 for those transitioning off the waiting list is a form of direct funding, some people are concerned that direct funding is off the table.
We know that this plan for autism established an implementation committee. This committee will include clinicians, experts and those with lived experience so that we hear what we need to hear and get all the input we can as we roll out the autism program and get children with ASD what they need. Whether that means direct funding or direct service, we will have to learn from those here today and the committee.
I could very well support the first statement in this motion, and our plan has made that clear. If a child with autism is above the age of five and is already receiving IBI, that will not stop. They will be assessed by a clinician as they move forward and will receive the intensity and therapy they need. That does not mean you will instantly lose the intensity of therapy that IBI provides. If they require that intensity and their clinician knows they require that intensity, that intensity will be available to them.
For those transitioning off the wait-list, ABA will be immediately available as they wait for the program to be rolled out, and their needs can be assessed. Our $333-million investment of new dollars means that those ABA wait-lists, which on average can go beyond two years, will be shortened to six months by 2017.
It is unclear why the opposition feels that children with ASD should be required to wait two years for service, and since those wait-lists will grow if we do not act, future children who require therapy will have to wait even longer. That’s unacceptable on this side of the House.
Mr. Steve Clark: It’s been absolutely heartbreaking to hear from Leeds–Grenville parents after this government snuffed out the hope for their sons and daughters to get IBI treatment. In question period this morning, I told the story of Aidan Timmins, a little boy who was on the IBI wait-list for 17 months. His grandmother Carol-Anne is in the crowd with us today. I know that she and her husband, Tom, have been at many rallies with Aidan’s parents, Sean and Sonia.
It was actually Sean who told me at a rally at the member for Kingston and the Islands’s constituency office that he and Sonia found out on World Autism Awareness Day that Aidan was kicked off the IBI waiting list. How cruel that, on a day to recognize the need to do more for kids with autism, Sean and Sonia found out that this government is doing less.
Now, the minister can try to sell this as services for kids like Aidan being somewhat enhanced, but there’s not a person in the gallery today who is being fooled by that statement. The $8,000 offered to parents is an insult. It’s a drop in the bucket when private IBI therapy costs $100,000 for two years.
The minister also talks about offering enhanced applied behavioural analysis, or ABA, to children five years of age and over. Sean Timmins actually made some phone calls to service providers in my riding about how Aidan could access this new program. What he found out was shocking. Sean wrote: “The ABA providers in Leeds and Grenville have not even been told what this is. In fact, we were the ones who informed them of these changes when we brought them our letter.”
There are no extra supports for kids like Aidan. They’ve pulled the rug out from under them, and their parents are left to pick up the pieces: parents like Chelsea and Mathew Metcalfe. I know that Chelsea is watching at home. She wrote to me about her son Charlie. Chelsea and Mathew wrote to tell me how much IBI helped their eldest son, who was in the program from the time he was six to eight. Here’s what they wrote: “The dramatic impact it had—and continues to have—on him, and our family, is simply outstanding. He responded very well to the one-on-one therapy, where he was taught the pre-learning, self-help and some social skills he needed to join a classroom with 20+ neurotypical children and minimal support”—so much for this government’s insistence that IBI doesn’t work for kids over five.
Chelsea and Mathew were thrilled earlier this year when Charlie finally got into IBI after waiting for two years. But just as Charlie began IBI, the government suddenly changed the rules. Because he’s five, he was terminated from the program without even being properly discharged. Here’s what they said: “This is an absolutely heartbreaking and unjust situation for our family to be facing,” writes Chelsea.
“My son cannot be denied the therapy that he needs to improve his quality of life. His clinical supervisor so desperately wants him to continue, but all of her decision-making power has been taken from her by the ministry. Horrible.” Well, Speaker, it is horrible.
My message today to the backbench MPPs is that you’ve heard from your constituents. You’ve heard from them and you’ve heard from these people in the gallery today. I want you to think about that when the vote comes. I want you to vote for our motion and vote for what’s right.
Ms. Catherine Fife: I feel that it’s so important to bring the voices of parents to this place. I’m going to be reading from an op-ed that was published in the Huffington Post yesterday by my friend and constituent, Professor Janet McLaughlin. It’s entitled “Someone Tell the Ontario Liberals that Autism Doesn’t End at 5.”
She writes, “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….
“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% of participants were 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 … 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….
“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….
Hon. Glen R. Murray: I remember, when I first got elected in 2010, that one of the very first visits I had was from a group of parents whose children were struggling with autism. In the six years since, I’ve watched their children grow. My staff has worked carefully with them and they have worked closely through the autism association. They have advanced ideas on the work they’ve done in downtown Toronto and the work they did with SickKids hospital.
When I was research and innovation minister, we had massive funding for autism to understand the gene and understand this epidemic, this exponential growth, and how we could find ways to prevent it. It was heart-breaking, Mr. Speaker.
I remember sharing with them my experience as a child. As some of you know, because I’ve talked about him, my personal hero, Michael, struggled with AIDS and HIV as a preteen. I remember the federal health minister of the day, a Conservative health minister, saying that AIDS is a moral issue and not a health issue. I remember that morning at breakfast, my son and I realized there was no money coming from the federal government and there were no treatments for HIV.
Mr. Speaker, he struggled with fetal alcohol syndrome, which was no fault of his own, in his struggle to communicate. I had a support group of about a dozen parents. All of the other parents gave up after a year because there was no support, there was no cure.
So I’ve always understood in the conversations I’ve had with the parents: Supporting their children with autism is a burden that no one can understand. I’m certainly not equating the situation with my child and the diseases that we struggled with, but I understand that sense of frustration and helplessness when doctors tell you there’s no cure for it and there’s no supports.
Mr. Speaker, I don’t think the status quo is acceptable. I will never be part of a government that’s not prepared to make big investments. This is as much money as my ministry spends in a year, and I care about the environment. A lot of those parents—
Hon. Glen R. Murray: Some of the members want to yell over me, and that’s the way they’ve been playing it today, but no one should be yelling over their parents. None of us have the right to tell parents what the right solution is.
Some of my parents are very excited about this opportunity. They see hope in this $330 million; they see possibilities. We will be held to a standard to take this massive investment, as the member for Sudbury said, and help our children out.
Any of us who have been parents of kids who have struggled with insurmountable challenges can’t help but empathize with these parents. But I believe that over the next year or two, as we make this massive investment in these children, we have to meet the expectations of their parents. That’s our job.
Mr. Tim Hudak: There’s no doubt that the top call we continue to get in my riding of Niagara West–Glanbrook has to do with autism. There are stories about parents who are just trying to get a chance for their kids to have a higher quality of life, and God bless those who are here today. These stories are incredibly moving.
During autism awareness week, there was a girl in Alabama who did a speech to her classmates; I think she was nine years old or so. She talked about what autism actually meant to her to explain it to the other kids. She said that a person with autism has a brain that just works differently from other people’s. It’s not worse, it’s just wired differently. She may react differently than other people, but her quality of life is just as important.
My daughter Miller is not autistic. She has had a severe speech impediment. When families tell me that they hope one day they’ll hear their son or daughter say, “I love you,” I get that. I’ve been there. We had early intervention, no doubt, but I know that the actual best progress happened after she turned five. She had greater maturity, stamina, and now I can have a conversation with her and it’s wonderful. But I remember years ago thinking that might never happen. So I know what these families are going through. I know in my heart that if a child can continue to have IBI treatment after five, they’re going to excel, not go backwards. I have no doubt that it’s going to move them forward. They’re actually going to respond better.
I know apraxia is different from autism, but I think that her brain is wired a bit differently—not better, not worse, just different. But I’ve seen it in our own lives and I want to see it happen for constituents of mine, to get that same break, so that when the next Father’s Day comes around, they’ll hear their son or daughter say, “I love you. Happy Father’s Day.” I get it.
Kelly and Chris Cimek of Pelham are in that boat. Their son Aaron was diagnosed with autism at the age of two. Sadly, because Niagara has among the highest wait-lists in the province, they’ve been waiting for four years. I met with them and they wanted me to raise this issue, which I did in correspondence to the government, saying, “Do something about Niagara’s wait-lists.” I know my colleague Mr. Bradley and colleagues Mr. Gates and Ms. Forster have similar concerns. Kelly said that she never imagined the solution to the long wait-list was to kick a whole bunch of kids off, including, probably, her son. They don’t think Aaron will get service before he turns five years old. They want to know why—and have asked me to be their voice here in the chamber—the government’s policy has made an arbitrary value judgment, to say that his hope is going to be gone.
Seven-year-old Wesley of Grimsby is similar. He had full-time IBI for the past 13 months, and his parents tell me that the change in his quality of life has been phenomenal. His parents say that they’ve gone from a son who tempered frequently and used diapers to a little boy who can talk. He is toileted and can enjoy activities. But there’s one really important milestone left to go: chewing food and eating more than just three simple flavours of baby food at his age. The therapists are confident that with IBI therapy, they’re going to reach that milestone. But he was kicked off and has a very restricted diet for the rest of his life. It’s going to cause health problems, and I share his parents’ fear that he’s going to go backwards.
Beth Vanstaalduinen of Jordan Station waited nearly four and a half years for IBI service for her son, who just started IBI, finally, before his sixth birthday. Beth says, and God bless her heart, that the changes to autism are bittersweet because she’s happy that other children are going to get services, but did it have to come at the expense of her son, who was going forward? It breaks her heart, because while he has a few months left, I guess, on treatment, every therapy session he has she knows the clock is ticking, and that’s going to be it.
And little Dayton of Lincoln, who less than a year ago was banging his head on the wall and drinking from a baby bottle and was still in diapers—his mom, Jessica, works with him as much as possible. She’s doing her best to try to mimic IBI therapy. She has made some progress. He has a bit of vocabulary now and he’s toilet trained. But imagine, if he had ongoing treatment from a full IBI therapist, the kind of miracles that could happen.
We would never dream of cutting off access to the ER because you’ve waited for five hours or eight hours, and you go home. These are human beings. It should be the judgment of a health care professional when you’re making progress, not based on the number of candles on your birthday cake. I hope members opposite will help out these kids in my riding and their own.
Mr. Peter Tabuns: Like our leader, Andrea Horwath, I want to express my respect and admiration for the parents who are dealing with autism in their family, many of whom are here today. They’ve embraced their children, they have fiercely defended them, and it is clear that they are willing to go down the line to make sure that these children have a future and lives that they want to live, and that these parents will enjoy with them.
I also want to acknowledge the energy and the commitment of my colleague from Hamilton Mountain, Monique Taylor, who, like the parents, has been fierce in her defence of these children, with incredible energy and incredible commitment.
Speaker, I have to say that this decision by the government to effectively abandon children—to tell them that when they reach the age of five, they’re no longer going to be getting the treatment they need and, frankly, in this society, deserve—may be one of the most callous things I’ve ever seen in government. I’ve been involved in politics for a long time, and I’ve seen a lot of bad stuff, but this is extraordinary to me.
Many good arguments have been made today, many good statements have been made, but I have to say that I think the parents are far more eloquent than anyone who’s down here on the floor of this chamber. I want to read briefly in my remaining time from an email that was sent by a constituent of mine—Steven Sherwood, who is here today—to the Premier and copied to me back in April. It’s a simple letter. It’s not full of flourish. It’s plain, it’s direct, and I think it expresses what the parents, the families, are going through.
“We are writing to you today to express dismay over the recent announced changes to funding directed toward helping children diagnosed with autism. Our lives are touched personally by this issue, as our beautiful four-year-old son Peter received a diagnosis of autism in July 2014 at the age of two years and three months.
“We immediately looked into having Peter assessed for the … IBI program in Toronto, as we were learning how very expensive private therapy is in Canada for autism-related issues. He was assessed and ultimately found to be well qualified for the program, and immediately put onto the wait-list, which we were told was roughly two years long. We started to plan for his future based on this information.
“We are a middle-income family who live in Toronto with our four sons under the age of eight years old. We have struggled financially over the past two years as we have worked very hard to provide Peter with a variety of private therapies both in our home, as well as at more formal centres. A small minority of Peter’s sessions were through publicly funded ‘blocks’ of ABA therapy which Peter was eligible to receive—the vast majority at significant cost paid for by our family….
“To now hear that our son may no longer receive this crucial treatment, after working so hard to prepare him for IBI, often to the detriment of our own quality of life, happiness, and at times sanity, is beyond unfathomable. How could this government do something so cruel to families already promised hope and help for the future?….
“Ultimately, additional funding and awareness for autism is a wonderful thing, but an autistic child’s potential doesn’t end at age five, and the $8,000 payout offered under the proposed program would cover only the equivalent of two months of IBI therapy vs. the years offered in the original funded program. Unfortunately, the way this new program has been rolled out to existing patients” and families “is nothing less than a train wreck.
Let me begin by reminding everybody what the 2016 budget book said. On page 128, it talks specifically about dealing with special-needs strategies. Right there, it talks about special-needs strategies. On page 129, it then goes on to autism services.
Right in the section on page 128, it talks specifically about dealing with special-needs strategies. Right there, it talks about three parts. The three parts deal specifically with making sure that more supports and service delivery are seamless, dealing with rehabilitation, speech therapy, occupational therapy and physiotherapy. Then it talks about an additional $17.8 million, about enhancing the transitional piece.
Then, on page 129 of the budget book, it talks specifically about dealing with the $333 million. I hear the concern with respect to different stories from different constituents. I also spoke to some of the parents. I also spoke to teachers and principals in Toronto about this issue. Some of them have tweeted about me, and they have also asked for a meeting.
There is going to be a meeting. We will be meeting with you. I just want to say that the time for this meeting will be continued. But I do want to say that I acknowledge the concerns being heard, and we will be meeting.
Mr. Bill Walker: I want the government to hear Val’s story. Her grandson is autistic. The family was actually going to come to Queen’s Park today but unfortunately could not. They’re in a very fragile emotional state right now.
Val says it is difficult to talk about this. The family’s plans for their son have been turned upside down, and they’ve been left to scramble for alternatives at a time when there is such high demand and few resources.
Everybody says early intervention is critical, but no one talks about how unaffordable it is for families. Val tells me the bill for her grandson’s IBI intervention, which is five times a week, two hours per day, will be $3,000 per month, yet the government’s lifetime payout is $8,000—about three months’ worth of service. Come September, the beginning of the school year, Val’s grandson, who has been waiting to receive IBI therapy for almost two years, will be cut off from support.
Unfortunately, cutting access to IBI is not the end of this government’s cuts to vulnerable children. In my riding of Bruce–Grey–Owen Sound alone, they have cut almost $2 million from special-needs programming, adding to the barriers that vulnerable children face. As a result, over 70 educational assistants who are working on the front lines with children with autism and learning disabilities are gone.
Just to make it clear: At a time when there’s never been a greater need for efforts to make autism a provincial priority, this government is kicking children over five out of life-changing IBI therapy and cutting their special education programming in schools.
This is yet again another complete U-turn, considering that just a few years ago, Kathleen Wynne made a personal commitment to provide vulnerable children the services they needed to succeed. At that time, the Premier said, “In order for children with autism to be able to achieve, they need to get into the schools, into the mainstream, as quickly as possible,” to “get the service they need when they need it”—to get the IBI therapy. In 2016, she is telling the same children and their families that they don’t need any of that.
Without access to IBI therapy, without access to the supports in the education system, what opportunities is this Liberal government providing for vulnerable children? What is the goal the members opposite are working towards?
It is unfortunate and regrettable to realize that after the good people of Ontario entrusted this government to be a force for good, the Liberals are rewarding that trust by cutting funding and supports for special-needs children.
Autism spectrum disorder is a lifelong battle. Children with autism will become adults with autism—more than 100,000 Ontarians in this decade alone. What then, Mr. Speaker? Children with autism require your support today, and your responsibility to deliver the needed supports is non-negotiable.
Just a bit of background, Mr. Speaker: Two years ago, when I was elected to the riding of Newmarket–Aurora, some of the first people who came to see me were parents of children with autism. Over two years, we have continued to visit, sometimes as individuals, sometimes as groups. I’ve listened to the concerns they have about the future of their children and the service their children are receiving or, in some cases, not receiving.
I heard from a father of a young child; he was divorced, and the divorce very much had to do with the stress and strain that a severely autistic child brought to that relationship. This gentleman was having to live with his parents at the ripe old age of 42 or 43, so that all of his salary could go to providing the intensive therapy his child needed because he was on a waiting list. That child was on a waiting list.
I heard from other parents over the two years who came in to talk about their children and the need to get their children off a list, to get their children into intensive therapy. I can tell you this: As a father of three, it tears at your heart when any parent comes to talk to me about issues they’re having with their child accessing service, no matter what that service is. It’s beholden on government to make sure that children get the care they need.
This motion is fairly straightforward. Point number one, that the assembly accept that autism does not end at the age of five—that’s a given. I don’t hear anyone saying that autism ends at five. Autism is a lifelong issue. It doesn’t end, as an earlier speaker said, at 18 or 20 or 50; it’s a lifelong thing that you deal with. It doesn’t end at five.
The second point, that intensive behavioural intervention is statistically effective: Again, Mr. Speaker, I don’t have an argument with the fact that intensive therapy is oftentimes required and effective after the age of five; I’m not hearing that at all.
I do have a point, however, with the third bullet point that talks about restoring funding, because that infers that there have been cuts. Mr. Speaker, I have read this proposed legislation. I do not see cuts; I see a third of a billion dollars of extra funding—almost taking this funding to half a billion dollars. That is not a cut. That is not a cut.
Mr. Michael Harris: We’ve been hearing heart-wrenching stories from across the province today, stories of families who’ve had their hope of life-enhancing IBI therapy yanked away from them, stories from parents like Beth Tackaberry of Brigadoon in Kitchener, who recently wrote me on Facebook. She said, “Our four-year-old son, Cameron, falls into the window of the cuts—because he turns five in July, he is no longer eligible for IBI treatments funded by the government.”
She noticed signs that Cameron was not developing as his sister did when he was nearly two years old. “Cameron was diagnosed with autism spectrum disorder (ASD) just after his third birthday, in December 2014.
I would ask members on the other side of the aisle to listen to these stories closely, and I invite them to join us in that vote, not only for Beth, Cameron and his family, but for the parents and children who are here today from across the province.
Back in my riding of Kitchener–Conestoga, Cameron’s story is just one of many I’ve heard in the recent weeks that have revealed the ongoing struggles faced by families of children with autism. I think of Craig and Amy Fee, who wrote in to the Premier on their son Kenner’s overwhelming improvements thanks to the IBI therapy. Amy wrote,
“It was two full years after my three-and-a-half-year-old son had gone from a happy, chatty baby to an inconsolable toddler (who unless he was in a full-blown meltdown was completely mute) was diagnosed with autism.
“Kenner is an amazing boy. He can write his name, draw a picture, work in a classroom, play with his peers, go out and be part of his community—and most importantly—communicate his needs, hopes and dreams. He most certainly would not be the child he is now without the IBI support that he received….
Earlier today, I mentioned Laura Martin of Conestoga and her seven-year-old son Cole. I’ve got a picture of him here on my desk, as I look, with his dog and his sister. His grandparents are here in the galleries today. After three years of waiting, he finally started receiving IBI treatments in January before having the rug pulled out.
I’ll end by reading from one of my constituents who copied me on a letter to the Kitchener Centre MPP as the local rep for the Liberal government. Karen Iszczuk wrote on April 6 to “express my disappointment with the recent changes regarding the rules for the autism IBI funding.
“With the new rules Trevor will only receive funding until he is five. As he is almost three and a half years old and still on the wait-list, this means he will not receive the support we were hoping for….
Ms. Jennifer K. French: I’m pleased to stand and to welcome parents of children with autism who, since diagnosis, have been advocates for their children and who know that their children have unlocked magic and potential. They’ve been forced by this government now to become activists.
I have been meeting in my riding, as many of us have, with service providers, parents and children. I’d like to read something from Kim Moore, who’s the clinical director of the Portia Learning Centre. They provide IBI and ABA therapy to over 75 children, ranging from Ottawa to the Durham region. These are their comments on behalf of families:
“Families are truly heartbroken over the decision to remove their child from the only therapy that will allow them to meet their full potential. Since the change in policy our office has been flooded with our parents calling in, in tears—wondering what they are going to do, second-guessing their decisions to date. Some families have been sending their child for the minimal number of hours, believing that they were six months away from receiving provincially funded therapy…. Most families have remortgaged their homes, cashed in their life savings in hopes that their child will reach their full potential. These families are exhausted, both emotionally and financially. Parents are suffering from anxiety, depression; families are being torn apart. Their only government support now is the ABA program, which does not offer the number of hours needed to make any life-changing gains…. In my opinion … all children should have the opportunity to reach their full potential.
I hosted a round table at my office and I had the pleasure of meeting six-year-old Jacob, three-and-a-half-year-old Autumn and four-year-old Mason, and of course their parents. I have a letter that I’d like to share with the minister on behalf of Tobi and Adam Riley, who are the parents of young Mason. Mom is here today.
“At an early age, we noticed our son Mason was a bit ‘different.’ After waiting six months to see a doctor who specializes in ASD, Mason was put on the autism spectrum. This diagnosis was a traumatic time for our family. In retrospect, we were mourning the loss of certain expectations we had for our son. We immediately put Mason’s name on an IBI and ABA wait-list. We were grateful for what all the doctors and medical professionals had told us about IBI. We had regained hope for Mason. We were ecstatic for this program to be offered. The knowledge of this program was a huge encouragement. All we had to do was wait our turn.
“We accept that early intervention and early diagnosis are beneficial. However, we don’t accept that our son Mason was diagnosed with autism at 18 months, has been on a wait-list for three years, and will now be kicked off the IBI wait-list when he turns five in June. He is currently number 34 on the wait-list.
“We feel lied to and disappointed! We have waited our turn and we want what was promised to us. IBI is the only proven therapy to work. Putting our son into a ‘mysterious’ enhanced ABA therapy worries us … especially considering our service providers can’t even tell us what ABA entails.
“Unfortunately, we can’t afford the recommended 20 hours per week private IBI. As a result, we have been borrowing money from our parents and the bank to help pay for ‘part-time’ IBI…. Not only have we failed Mason, but so has our government. This added financial stress is taking a toll….
Mr. John Fraser: I very much appreciate the opportunity to address this motion today. I recognize and acknowledge all the families who are here, and I appreciate the opportunity to be able to explain my position.
Over 20 years of being in my community and working in a member’s office and being a member, I know that autism doesn’t end at the age of five. I know that a developmental disability does not end at the age of five. I know that it does not end at the age of 15, when a family with a child with ASD is trying to get their child into a program in a school in my riding; or at 21, when they’re transferring out of the school system into adult services; or at 55, when a parent is concerned about how their child is going to be cared for when they’re gone. These are all things that we deal with as members.
I do know that putting 16,000 more children into therapy is going to help with those transitions. I know that. We know that more intensive treatment works. We know that it works at an early developmental age. We know that’s where it works. We know that the program that we are going to is looking at tailoring the intensity to the needs of the child. So those two points, I think, we are in general agreement on. I cannot agree with the third point. There is more funding. There is $333 million going into this, and 16,000 more children are going to be served—and families.
My commitment to my families in my riding, of those 2,200 who are affected, is to work with them to make sure that this transition, like every other transition that I have tried to help families with, will work for them. I know that members—not just on this side, but also on that side—are committed to doing that.
I do want to raise a couple of points. I want to respond in one way to what the leader of the official opposition said: No one is wishing anyone away. No one is wishing anyone away here. I think part of this debate, and one of the challenges with it, is the level of rhetoric and emotion that’s in here and the impugning of motive on people on the other side.
We can disagree, and it’s your role as the opposition to push us. I get that. I agree with that, and you should do that. We always need to push ourselves. But on all sides of this House—and that includes us—when we impugn motive on each other, like “You don’t care” or “You’ve got it wrong” or “You didn’t do that,” that’s not right. That’s been going on for too long in this debate, and it needs to stop. I’m saying that to this whole House, not just to this side or that side. I think that that’s important—
Mr. John Yakabuski: It’s a pleasure to wrap this debate up today. We’ve heard a lot from the other side, the government side, saying that they get it, that they understand, that they accept that autism doesn’t end at five. They tell us that they feel for these families and these parents. But it’s time to put away the speaking notes and it’s time to look inside, because if you can do what you’re planning to do, you are relegating the children of these families to a life where they can never reach their full potential. We, as a society, have a responsibility to give the most vulnerable people an opportunity to do just that.
You need to ask yourselves if you are taking—you have conflicting science on your own side that really questions what you’re doing with this funding. It questions what you’re doing. This is not, I say to the member from Ottawa South, about impugning motives, but it is correct when we say what you’re doing is wrong. What you’re doing is wrong for these children and it is wrong for these families.
You have an opportunity here today. You brought out your policy. The people have spoken. The people are saying it is wrong. I was there for that demonstration that day, and I was moved by it. I was moved by it because I recognized that these families are facing the greatest struggle that they’ve faced in their lives or likely will face in their lives, and you are making it more difficult by taking their vulnerable children off a waiting list and cutting them off from the very treatment that would allow them to reach that potential that we all deserve.
- Armstrong, Teresa J.
- Arnott, Ted
- Bailey, Robert
- Bisson, Gilles
- Brown, Patrick
- Campbell, Sarah
- Clark, Steve
- Coe, Lorne
- DiNovo, Cheri
- Fedeli, Victor
- Fife, Catherine
- French, Jennifer K.
- Gates, Wayne
- Gélinas, France
- Gretzky, Lisa
- Hardeman, Ernie
- Harris, Michael
- Hatfield, Percy
- Hudak, Tim
- Jones, Sylvia
- MacLeod, Lisa
- Mantha, Michael
- Martow, Gila
- McDonell, Jim
- McNaughton, Monte
- Miller, Norm
- Miller, Paul
- Munro, Julia
- Natyshak, Taras
- Pettapiece, Randy
- Sattler, Peggy
- Scott, Laurie
- Smith, Todd
- Tabuns, Peter
- Taylor, Monique
- Thompson, Lisa M.
- Vanthof, John
- Walker, Bill
- Wilson, Jim
- Yakabuski, John
- Yurek, Jeff
- Albanese, Laura
- Anderson, Granville
- Baker, Yvan
- Ballard, Chris
- Berardinetti, Lorenzo
- Bradley, James J.
- Chan, Michael
- Chiarelli, Bob
- Colle, Mike
- Coteau, Michael
- Crack, Grant
- Damerla, Dipika
- Del Duca, Steven
- Delaney, Bob
- Dhillon, Vic
- Dickson, Joe
- Dong, Han
- Flynn, Kevin Daniel
- Fraser, John
- Hoggarth, Ann
- Hunter, Mitzie
- Jaczek, Helena
- Kiwala, Sophie
- Lalonde, Marie-France
- Leal, Jeff
- MacCharles, Tracy
- Malhi, Harinder
- Mangat, Amrit
- Martins, Cristina
- Matthews, Deborah
- Mauro, Bill
- McGarry, Kathryn
- McMahon, Eleanor
- McMeekin, Ted
- Meilleur, Madeleine
- Milczyn, Peter Z.
- Murray, Glen R.
- Naidoo-Harris, Indira
- Naqvi, Yasir
- Orazietti, David
- Potts, Arthur
- Qaadri, Shafiq
- Rinaldi, Lou
- Sandals, Liz
- Sergio, Mario
- Sousa, Charles
- Thibeault, Glenn
- Vernile, Daiene
- Wong, Soo
- Zimmer, David
The Acting Speaker (Mr. Rick Nicholls): I beg to inform the House that pursuant to standing order 98(c), a change has been made to the order of precedence on the ballot list for private members’ public business such that Mr. McDonnell assumes ballot item number 56 and Mr. Pettapiece assumes ballot item number 64.