Amy Fee -We need more from you

As a follow-up to my post from yesterday, I wanted to include this speech from Amy Fee on March 27th, the afternoon of the autism motion from Monique Taylor. I’ve included the speech she made in full, and I encourage you to take the time to read it.

Mrs. Amy Fee: As I speak this afternoon to the member from Hamilton Mountain’s motion, I’m going to highlight how we got here and also talk about the enhancements to the Ontario Autism Program and how we are still working to continue to improve that program.

Last year before the election, my discussions with the now Premier began on what it was like to have a family member with autism, as two of my four children are on the autism spectrum. During that first meeting, the MPP for Ottawa West–Nepean, who has a brother with severe autism, and I met with the leader of our party to talk about our vision for how, if we form government, we need to be working across ministries and supporting people with autism and their families across all aspects of their lives. We discussed the Ontario Autism Program, what appeared to be working with that program and what likely wasn’t working. We talked about education supports, school exclusions, the transition into adulthood, and housing and employment options. We also had that very hard conversation about what happens when I’m no longer there to take care of my son, what happens when Jeremy is no longer around to take care of his brother.

When we formed government, I was asked by the Premier to take on the role as Minister MacLeod’s parliamentary assistant for children and autism, because he knew I was already a strong advocate for people with autism and would continue to be an advocate within our government. Within days of the minister being sworn in, we were briefed on the Ontario Autism Program. What we found out was way worse than we had ever expected, and the projections were that, over the next few months, we were going to see things more clearly, including the financial situation and how the wait-list would move over the next few years. We quickly realized that the former government’s system was on the verge of collapsing. We were running out of money for the children who were already in service, and by the end of the summer, the projections for what was going to happen with that list were getting even worse. We were being told that if we did nothing to try and get that wait-list to move, there was a good chance that there were children even as young as five or six years old that may never get into service before turning 18 and aging out of that program, and therefore would never receive any help from their government. We were also told about how only a quarter of the children in the province with autism were actually in service and receiving any funds and supports from the OAP. The minister knew she had to do something.

We started consultations with stakeholders right away, talking to service providers, children’s treatment centres, parents and autism experts. While we were doing that, the minister had to go to the Treasury Board twice to ask for more money to keep the system, which we knew was broken, afloat. We were tasked with figuring out how to make it sustainable. Over our first few months in government, we continued consultations. The minister knew we couldn’t continue to have a system that only supported a quarter of the children with autism in the province.

That’s why we launched the first part of the Ontario Autism Program, while I continued to meet with families about the realities that they’re facing and trying best to support our children with autism across Ontario. We heard from families that they needed us to do more within the OAP and our education system. Families talked to me about just how that income test was making it more difficult for them to support their child. So we listened, and we scrapped it. I continued to hear that parents need choice on how best to support their child, including speech and language, occupational therapy and physiotherapy.

As I’ve said often, including in our round table discussions on autism, there are times when you’re trying to support a child with a challenging behaviour and you actually may need the expertise of a speech and language pathologist or an occupational therapist in order to work on that behaviour. For a child who is struggling to communicate, that could be the total function of a behaviour that they’re working on targeting in therapy. As an example, one of the first things we worked on in therapy with my son Kenner was to help him when he would curl up into a ball and rock. This was especially important to me because not only would he bang his head against the wall, but I could tell he desperately wanted to tell me something but couldn’t. We worked for months trying to get him the ability to communicate. It took a lot of support from a speech provider, other therapists, his patience and our patience, and we quickly realized there were many triggers. When we would see that behaviour, it could be because he was overwhelmed by noise or a particular cartoon that he was terrified of came on the TV, or simply that he was hungry or thirsty and couldn’t tell us what he needed.

Over the first few years of therapy, we watched Kenner improve in his ability to communicate, and his need for that coping strategy decreased. Kenner needed, though, the support of speech and language therapy to gain functional language in order for us to work through that behaviour to stop him from injuring himself.

There are also families who feel their children will benefit appropriately from just speech and language or just OT, and that’s why we’re giving them those options in the OAP.

During the round tables, I heard from the mother of a young boy with autism who was avoiding food. This isn’t just a typical young boy who is a picky eater. Things are so bad for him that he is malnourished, and doctors feel he needs a feeding tube. For anyone, the prospect of a feeding tube can be overwhelming; but add in his sensory issues, and that’s terrifying, not only for him but for his family. The child’s mother talked to me about how she desperately needs the support of not just a behaviour therapist but also an occupational therapist to help her son work through his extreme sensory needs, and to ensure that he can keep that feeding tube in. Then they can start to work on the behaviours that are restricting his diet.

I’m telling you that story about this little boy today because I continue to advocate for enhancements to the OAP to include other therapies other than ABA. He is one of the main reasons why I continue now to advocate for the OPA to take into account different severity levels of autism and the various needs of children on the spectrum. Mr. Speaker, that’s what autism is: It is a spectrum.

A mother in Ottawa who has been a fierce advocate for all children with autism, Kerry Monaghan, has two children with autism, and they have very unique needs. Her son is on the more severe end of the spectrum and needs more hours of therapy than his younger sister. While she has told me that there is no doubt that her daughter is benefiting from currently being in private therapy, and deserves that support as well as her brother, she knows her son has more complex needs and therefore needs more funding and therapy than his sister. This highlights another reason why we’re looking at how best to support children on their level of need.

In my own family, I do see this first-hand. We have a very similar situation to Kerry’s. Kenner, my son with autism, needs more support than his sister. Kenner was non-verbal when he started school, and, while he talks non-stop now, he still struggles to communicate his emotions and has multiple meltdowns every day. When his sister was younger, she had pica symptoms. She would eat anything. If she saw rocks, if she saw anything lying on the ground, she would eat it. Yet she had no problems, then, telling us how she felt. She was reading and printing before she started school and is in the gifted program. But when it comes to understanding social cues, communicating in the social world and life skills, she can really struggle. That leads to breakdowns and meltdowns for her, as she gets very frustrated.

My point is that while every person has their own struggles, for people with autism it is a daily reality. And for each individual person with autism, child or adult, those struggles are different, and the supports and level of supports that are needed are different. This is why we are continuing our consultations with stakeholders, experts and parents, and are focusing the discussions around how we can better support children with more complex needs.

We know our goal to ensure that every child with autism receives some support from the provincial government is key, though. We couldn’t continue to have a system that only supported a quarter of the children with autism, while everyone else just waited and had a good chance of aging out of the system before receiving any funding.

One of the reasons why we are ensuring we have, for the first time ever in Ontario, a program that supports all children with autism in the province is because there was a time, even a few short years ago, when the former government didn’t.

When I was here protesting with families for the Autism Doesn’t End at 5 campaign, we were fighting for children who were on the wait-list for intensive services who were just kicked off the list, and let’s not forget that initially they were only going to receive $8,000 as a one-time payment. Mr. Speaker, we even had to fight to ensure that those children who were getting kicked out weren’t getting just a one-time payment.

When I look back at the system for intensive intervention that the former Liberal government changed from, that actually caused those protests in 2016, there were major issues with that system as well, with children getting left out with no options for direct funding or choice of services. Under that old system, children with autism were assessed by psychologists with the regional service providers for the autism program. Only if a child actually met certain criteria were they accepted into that program for 20 hours a week of provincially funded therapy. Under that system, parents were often pitted against each other in the community as they fought for one of those precious spots available. Parents would meet and discuss whose child needed it more, how to make sure your child looked in the assessment like they actually needed therapy, and what to say or not to say in those meetings.

Overall, that system created stress and fear over your child either getting those 20 hours a week of therapy or maybe getting a few hours a year in a social skills group, and that was if they were actually lucky enough, as the wait-lists for those groups were getting out of control.

For Kenner, he was seen by a psychologist to assess him for the program shortly after his diagnosis. After that first meeting, the psychologist said my son, who could sing part of Twinkle, Twinkle, Little Star and easily copy back the words “Thomas” or “cracker” but was otherwise nonverbal, was too high-functioning to benefit from therapy. I begged for them to keep him on that wait-list and re-evaluate him in a year. The psychologist from the regional centre agreed and saw Kenner the following summer. That same psychologist, when she saw Kenner the second time, though, to my surprise, didn’t tell me he was too high-functioning. She told me he was too low-functioning and she didn’t feel that he would be able to learn. I was stunned. It was the same doctor who had told me a year earlier not to worry, that my son had a bright future ahead of him. She was now telling me she didn’t think he could learn or benefit from the one thing, at that time, that I was being told could help him. I fought back and I begged her to keep him on that wait-list. She eventually agreed, but cautioned me that she didn’t think he could learn and reach his therapy goals. She said that if by his first six-month review he couldn’t learn, she would remove him from the program immediately. He ended up staying in that program for two years.

I wish I could say that Kenner’s story was unique. Unfortunately, it is not. That program only supported a few lucky, if you will, children on the spectrum who fell into that always-moving middle of the spectrum: not too severe, and not too high-functioning as well. If you weren’t in that sweet spot, you didn’t have the option to receive direct funding or more than a few hours a year of help. This is why the minister and I know we want to see a system in Ontario that better supports all children with autism with direct funding to families, and one that also respects autism for the spectrum that it is.

Mr. Speaker, parents and stakeholders across the province are relieved that we’re enhancing the Ontario Autism Program and that we’re continuing with consultations to see how we best move ahead while giving children currently enrolled in the system the additional six months of behaviour plans and also starting on our goal to clear that wait-list in 18 months.

Linda Kenny, for example, the CEO at KidsAbility in Waterloo region, told me that she welcomes the enhancements. She also told 570 News in Kitchener that she is happy to see that we’re extending the current behaviour plans. She also told them that she is encouraged to hear that we’re still consulting with families and service providers to find ways to meet the unique and diverse needs of children with a wide range of complex needs.

A mother of a young daughter emailed my office. She said, “My daughter … along with nearly 23,000 other children support your commitment to clear the wait-list.

“My daughter received a diagnosis in July 2016 at the age of two. After nearly three years of waiting for intensive IBI therapy, we find ourselves forgotten on this list. During the nearly three years of waiting, my daughter has not received any sort of ABA therapy and that’s just heart-breaking.

“My husband and I are hard-working people. We put our trust in the hands of the previous government only to be lied to. It is unfair that other children have received adequate intervention while our daughter has received none. I echo your sentiment, this is just not fair.”

From a mother in Waterloo region: “First of all I would like to say that I am pleased with the announcement made by the Honourable Lisa MacLeod concerning enhancements to the OAP. While there is much work to be done I believe that it is an important step in the right direction. I am pleased that you have already done the important work of meeting with stakeholders. It gave me a bit of hope for my son’s future.”

This one is from a service provider who works with children with complex needs: “The extended time to support these children is single-handedly the most relieving piece of news I’ve experienced in months. I am not a parent, but I care deeply for these children and families. As such, on their behalf (and for the sake of my blood pressure) I want to thank you for your ongoing efforts. It is hard for me to put into words the relief I feel this evening….

“Again, thank you for your efforts.”

From a parent of a teenager with autism in London: “First of all, I would like to state that our family is satisfied with the proposed changes to the Ontario Autism Program. Our 13-year-old son is on the spectrum, having been diagnosed about 10 years ago. He is on the wait-list for the program here in London, somewhere about number 500 I think. We never really paid much attention to it because it is such a chimera. So the opportunity to get some resources sooner is very appealing to us.”

Mr. Speaker, every member of this Legislature knows that these last six weeks have been extremely difficult for families. I’d like to remind this House that these are parents standing up for their children, telling us about their very personal situations, and the vast majority are voicing their thoughts with dignity and respect. I’d like to thank the parents who have taken the time to meet with me today here at Queen’s Park and to be here, and those who have reached out to tell me about their children.

As I conclude here this afternoon, I’d like to stress that our consultations and enhancements around the OAP will continue. Our government will also continue to look at how we can best support people living with autism across their lives.

Mr. Speaker, I will never stop being an advocate for people with autism.

There’s a lot to unpack in there, and I’ll let you make your own decisions about what’s important to take away from it. Yes, she hits the PC talking points, she tries to sell the positives of the program, but then she gets pretty real about her own family situation, and the needs of her kids.

I have no doubt that Amy Fee understands the importance of considering individual needs — she lives it. The needs of her 2 kids aren’t the same, and she acknowledges that. The reality of the situation is that the OAP, in its current form, will see the government funding for her kids go WAY down.

I want to believe that she had reservations about Lisa MacLeod’s original version of the OAP. How could she not? It has a direct negative impact on the funding for her kids. What I don’t know is what’s holding her back from taking a stand. Has she raised concerns in caucus meetings? Has she raised concerns directly to Doug Ford or Lisa MacLeod in private meetings? Does she really believe that they can #ClearTheWatlist and still provide appropriate funding to ALL children with ASD?

I want to think I know where Jeremy Roberts stands.

I want to think I know where Lisa MacLeod stands.

I honestly don’t know where Amy Fee’s head is at here.

I will never resort to name-calling or personal attacks against Amy, and will always oppose the actions of those who do. She’s a human being, and a mother of special-needs kids. She deserves to be treated respectfully, even if we don’t agree with her actions or inaction.

I know many have lost hope in her, but I’m not ready to do that yet. She’s likely to be a key figure in the consultation process, and rather than write her off, I would challenge people to rise above what’s happened in the past. She is not the Minister in charge, and I highly doubt that the age cap or the complete disregard for individual needs were program points designed by Amy Fee.

Amy, if you’re reading this — We need you to be strong, and we need you to be better.

I’m not ready to give up on Amy Fee.