“They (the government) are not looking at the individual needs of a child that way. They are looking them as numbers on a spreadsheet.”

In this episode of The Dialog Podcast, Jennifer Donnelly, coordinator of the Autism and Behaviour Science program at George Brown College and Lisa Cressman, applied behaviour analysts at a center for kids with autism, explain how an intensive therapy works and what the changes in the Ontario Autism Program may cause to these kids who attend these centers. Also, Lisa Yakeley tells the story of her five-year-old daughter Lauren, diagnosed by the age of two with autism, and whom one hundred thousands dollars a year treatment may be partially cut by the government as soon as she turns six.

Luiz Felipe Lamussi: Hello and welcome to The Dialog podcast. My name is Luiz Felipe Lamussi, I’m the host for this season and today we are going to talk about the Ontario Autism Program and the changes that the province is bringing to the table. Jennifer Donnely, coordinator of the Autism and Behaviour Science program here at George Brown and Lisa Cressman, applied behaviour analyst at a center for kids with autism, explains how the program really works.

But before that, we will listen to Lisa Yakeley who shares the story of her five-year-old daughter Lauren, who was diagnosed with autism at the age of two and received funding for her treatment until now.

Lamussi: Could you start telling me a little bit of her story and when she started attending the center?

Lisa Yakeley: So she started going there two years ago in May. Lauren was originally diagnosed just back her second birthday. Within a couple of days, I added her to the wait list for the Ontario Autism Program. And at that time, when we added her to the waiting list we were told that there was a three and half year wait for the funded therapy. So, in the meantime obviously, as we hurry out and wait on the wait list, we decided to go privately to look at ABA therapy to jump-start as quickly as we could as well as speech therapy twice a week for early intervention.

So, we’ve basically paid privately out of pocket for speech therapy since she was two-years-old.  And then in the interim from two, until she received the funding into the autism program, we had to pay out of pocket ourselves. Unfortunately, that’s the story you hear from a lot of parents. We were patiently waiting. We waited in line to get this life-changing treatment for our kids and we do everything we can to support them and give everything we can so we can help our kids learn this skills that their peers who don’t have the diagnoses, can learn more naturally.

Lamussi: Can you share some of the skills your daughter is developing at the centre? What’s changed since she started the program?

Yakeley: First when she started, we were working on her responding to her name and reacting when we say “Lauren, look here” kind of thing. Even to get her attention to acknowledge and know her name as Lauren. That was our starting point. When kids get older, they need to understand that if we’re on the side of the road and they decide to turn and walk into the street and see that a car is coming, kids need to understand when you call their name and say “Lauren, stop!”

It’s just a skill as simple as that. If a child doesn’t know their name, they are not realizing that you are even trying to get her attention. So, it can be something as simple as a child learning their name and knowing and responding to it, that was our starting point for Lauren. So, she has been doing fantastic on that and we keep building on skills. Like eye contact was another one of our goals. To let her know that she needs to look at us when we are talking to her. And when we think of school for example, when kids are sitting around in a circle, and listening to the teacher during story time, understanding something as simple as “Hey let’s sit in a circle and wait to read the story.” We had to teach that to Lauren.

Lamussi: How many hours does Lauren attends the centre per week?

Yakeley: Lauren attends 35 hours a week. It’s one of those things that they base out of the level of need. So for a kid like Lauren, when she’s attending 35 hours a week, it acknowledges that she has significant need. So she wouldn’t be there unless it was determinant that she had to. So when the February sixth announcement came, they introduced income-testing and basically age discrimination. So when Lauren turns six in December, all of a sudden her needs don’t change. It doesn’t magically means that as soon as she turns six, she is down to that $5,000 a year bracket for the later portion of the budget for ages between six and 18.

Currently, her therapy costs $100,000 a year.  So when she has a birthday in six months, and she loses $95,000 a year in funding, what do we do?

Her needs don’t change just because she had a birthday.

It’s unfortunate that the Ministry is looking at it this way. As if once you reach a birthday, (it) all of a sudden changes our child developmental stages.

And I don’t think they really understand that they are not looking at the individual needs of a child that way. They’re looking at them as numbers on a spreadsheet. They are very much running this like a business. They’re not really investing in our kids and in their futures.

For example, if in a couple of years a person might have to be looking at group home placement for their child because of the level of need an individual could require. It’s one of those things again that I don’t think the Ministry saw this through when they made the announcement.

They basically crushed us. We’re talking about our children’s futures and obviously, we want them to grow up and have meaningful lives and be as independent as possible in their lifetime. The way they (the government) did it,  was so vicious and hurtful for our family because we are already struggling to get by to our day-to-day.

Until you walk a mile in our shoes, you don’t get it. It is hard to explain until you see it and are in this world and a part of our community, to see that all we are trying to do is give our kids the best opportunity to try to be as independent as possible. Looking at long-term, having them to be independent and live by themselves, having a job, having a meaningful relationship if that is what they are choosing to do. It is one of those things that this therapy is life-changing for many of our kids.

Lamussi: Now Jennifer Donnely explains how the Ontario Autism Program was implemented, how it works, and in her opinion what should be changed. Donnely also shares her thoughts on the consequences of trying to teach kids who need special support in the regular school system.

Lamussi: Could you just start explaining a little bit about the program and tell us a little bit more about intensive behavioural intervention?

Jennifer Donnelly: So about 20 years ago, the Ontario Government put in place a program for individuals with autism. That was based on the principle of applied behaviour analysis. This was an intensive program and individuals who required support would receive a number of hours per week, usually averaging between 20 and 25 hours a week of intensive intervention.

We provide an assessment on a learner determining what skills they had in their repertoire and then figure it out what skills they were lacking. Then we would develop a program based on that using the principles of applied behaviour analysis to teach these individuals.

So, using these principles, we would break skills down into smaller parts to teach them using prompt and reinforcement. And this type of teaching is very different than a school-based approach. It is a very individualized program, so it is based on every individual child needs rather than just a generic approach. This generic approach is the type of program that was put in place and then recently the new ministry, under Lisa Macleod made some changes to that program. The old program worked well. It definitely had problems and needs here and there. Rather than just coming in and looking at what was working and what wasn’t working and making changes, Minister Macleod, unfortunately, came in and dismantled the entire thing.

Lamussi: So the new program is based only on age and family income. Here, you’re saying the therapy it is different for each kid, right?

Donnely: Absolutely. Coming in and making the change to income and age-based was really frustrating. Ultimately, what the changes meant were that individuals were no longer going to be able to receive the intensive intervention they needed.

Under this new program by Minister Macleod, we have seen some changes. So they have actually lifted the age cap and lifted the income-based component, however, the amount of funding they still were willing to give was not going to be enough for the intensive intervention that many individuals need.

On average, a 25-hour-week program for a year costs approximately $65,000 and under the new program, the government was going to give families approximately $20,000.

And what a lot of people don’t realize is that, as a result of they not getting the support they need, these individuals will then be moving into the school system. And they won’t have the skills they need to be in that school system. And then they are going to be integrated into these classrooms and they won’t have the necessary support in the classroom, because unfortunately, there is not enough training and support for teachers and early childhood education workers to work with individuals with autism and special needs.

So, that will then impact every other child in those classrooms as well. Which is not appropriate for either individual. And it is really disheartening to know that’s what’s going to occur.

Lamussi: I know this is a really complicated situation, but according to the government, we have a waiting list of 23,000 kids for this support. What’re the consequences for these kids who don’t have access to the right treatment now?

Donnely: So, under the old program, there were approximately 8,400 children that were receiving service. And every region was doing something a little bit different, which was part of the problem.

And under this new program, Minister Macleod kept saying she would end up getting everybody off the wait-list but she would be doing that and not giving them what they need it.

So, essentially, yes, they would be removed for the wait list. But they wouldn’t be getting the intervention they need it.  It is kind of like someone who is sick, have a sinus infection, you go to the doctor and you wait to get to the doctor for two weeks and when you finally get there they give you cough drops.

You are not giving them the antibiotics they need. So you have all these individuals who do not have the skills that they need to be able to be as independent as possible and function as members of society.

Once I heard a mom of a kid with autism saying in an interview that they were not expecting their child to go to college, since they were asking for them to be able to sit on the toilet and be able to eat their dinner on their own, pull up their pants and communicate. So that’s what we’re looking and teaching these individuals.

And the impact of them not receiving the intervention they need, they will then be going in the community where they have even less qualified individuals to work with them.

For example, in the school system, we know our colleagues in our school system are already limited and stretched to their limits. It is already challenging in the classroom as it is. And now you are going be putting additional individuals in the class who don’t have the ability to just sit and attend to a lesson. Individuals who can’t sit in a chair, who constantly are moving around or engaging in stimulatory behaviour and are not able to communicate. And then you have other individuals who might be aggressive or engaging in self-injurious behaviour.

Lamussi: So it won’t be good for them and we are not even talking about their classmates.

Donnely: Absolutely! We are talking about these individuals themselves. And also their classmates. Even if you have an individual who is quiet and doesn’t pay attention to the teacher, but someone who can’t sit down might distract the other kids. So their ability to learn is going to be compromised because they are going to be distracted. And then you have the teacher who is trying to teach a lesson, who is also trying to work with this child and trying to keep this child in the chair. And that’s if you have one child in the class. As we know, many classrooms have multiple children with not just autism, but other various childhood disorders, like ADHD, down syndrome, so on and so forth. The needs of a classroom are very complex and what we would like to see is there should be more training and qualified individuals in those classrooms.

Here at George Brown, we have two post-graduates programs which many individuals come to the program with a general psychology background or ECE students and child-abuse workers. And we love to have them because we know those individuals are now coming to our program, they are getting training and qualification on how to work with individuals with autism and other childhood disorders. They are going off to the school system and they are having more training and information on how to work with these individuals.

We really want there to be some collaboration among the ministries to make sure that not only the Ministry of Community Services is providing support but also through the Ministry of Education and Ministry Health.

Personally, I have two young children who are in the school system. I know from my experience with them that they have individuals in their classrooms who need additional support and I’ve talked with many of their teachers over the years about how it’s challenging. So if we can get that collaboration between the ministries, and really work to ensure that there are quality professionals within the school system, daycares, and preschools to help support individuals with autism, that would be fantastic.

Lamussi: Now Lisa Cressman, an Applied Behaviour Analysts at a center for kids with autism tells us how the intensive therapy works. At the end of the day, her goal is not to be needed anymore by these kids.

Lamussi: So my first question is: what’s your role in the centre?

Lisa Cressman: As an instructor, I work one-on-one with the child and we perform programs helping them to learn the skills important by the parents and by our board certified behaviour analysts. So the program can be anything from learning how to brush their teeth, learning how to wash their hands, to simple social skills like saying hi to your friends. And we also do a lot of schools skills, which could be math and language.

Lamussi: Basically you’re teaching things that are really basic for people who don’t have autism, but for those kids they are things that they take a longer time to learn, right?

Cressman: Exactly. For most kids, learning how to wash their hands can take up to a few weeks to a few months. But for these kids, we need to go step-by-step. It can take them anything from a few weeks to learn but it can also take them up years to learn these skills. So it is really important that they come to our center and they have the intensive care we provide for them. The daily routines of learning and completing the steps properly.

Lamussi: How long do you stay with those kids? Do they come every day like a regular school or it depends?

Cressman: It depends. The children are getting funding from the government based on their needs, so we have a lot of kids to come about 30 to 40 hours a week, eight hours a day for five days a week. And we have some kids who attend public school, so they just come a few hours after or before school.

Lamussi: And could you give an example or situation that you remember that happened at your work?

Cressman: Yes. We have a lot of kids who are non-verbal and we teach through different forms of communication how to speak and how to communicate with others. So the boy I started with, he was completely non-verbal and we started with a text, so pictures of items that he would want. So he would have a book, and it would say cookies. He would hand me a picture of cookies and he would get a cookie.

A year later he is now just got an iPad and he can now form almost full sentences saying “I eat cookie” and he is now actually copying what the iPad is saying and he is saying vocally as well. So in just a year in the intensive program, he’s now being able to communicate with his family and tell people what he wants. And it’s such a gift to be able to see these kids grow like that. In this case, it took a year, but in other, I’ve seen kids who learn hand washing or tooth brushing or how to say how to their friends so quickly it can even just take a week. It’s so rewarding to see them grow so quickly and being able to interact with their peers and their family and be part of their community.

Lamussi: And this specific kid, how many times does he go to the center?

Cressman: He is with us three times a week and we actually provided a home session for him as well. So I went to their home and worked in the environment that he’s used to so that I can help his mom and dad see how we teach him and so they can teach them as well.

Lamussi: And if we are talking about an end goal in a situation as a kid a with autism, what is the end goal personally for you and also for the treatment that you provide at the center? What are you aiming at the end?

Cressman: Honestly my end goal is to put myself out of the job. If they don’t need me anymore, then I’ve done my work. They should be able to function in the community and in their home without the help of me. So, really my end goal is to put myself out of work, make sure I have no job and have these kids be able to do what they need to do or at least be able to ask for help if they don’t know how to do it.

Lamussi: Okay, great! Thank you so much for talking with me today.

Cressman: Thank you, you are welcome.

Lamussi: And that’s all for today, folks! Now we have to wait to see what changes Minister Macleod and the province will bring for these kids. I would like to add that we tried to get in touch with Minister Macleod, but until the publication of this episode, they didn’t contact us back.

But before we go, this is the final episode of this season, which means my last episode as the host and producer of The Dialog podcast. It was a great pleasure to know people’s stories and connecting them to you. I hope you enjoyed it as much as I did. Thanks, Mick Sweetman, the Coordinator of The Dialog newspaper and to all the reporters and editors who helped me a lot during these two semesters. For one last time, please don’t forget to subscribe to the podcast so you don’t miss any future releases. That’s all for today, bye!