The Agenda with Steve Paikin (Audio) - Will Ontario's Autism Budget Increase Be Enough?

Episode Date: April 29, 2024

Ontario's recent budget announced a $60 million increase for autism programming. But with 60,000 kids on the waitlist, will this be enough? Is the current Ontario Autism Program providing autistic youth with the support they need?See omnystudio.com/listener for privacy information.

From epic camping trips to scenic local hikes, spending time outdoors is a great way to create lasting memories to share with friends and family. This summer, TVO is celebrating the natural wonders that inspire unforgettable adventures with great documentaries, articles, and learning resources about beloved parks in Ontario and beyond. Visit tvo.me slash Ontario summer stories for all this and more. And be sure to tell us your stories for a chance to win great prizes. Help TVO create a better world through the power of learning. Visit TVO.org and make a tax-deductible donation today. Ontario's recent budget announced a $60 million increase to provincial funding for autism programming.

But with 60,000 kids on the wait list, how much of the job can that money get done? Is the current Ontario autism program providing youth with the support they need? Let's find out and ask Margaret Spolstra. She is the CEO of Autism Ontario. Jessica Bryan, psychologist and senior clinician scientist at Holland Bloorview. And Anne Borden-King, co-founder of Autistics for Autistics Ontario, a Canadian affiliate of the Autistic Self-Advocacy Network. And she's a host of Noncompliant.

That's a neurodiversity podcast. And we welcome everybody to our table here at TVO tonight. Margaret, I want you to start us off if you would because I suspect for people who don't have autistic kids they don't know how this all works. So a parent has a kid who gets a diagnosis of autism. They want public services. They want programs for their kid. Where do they start? What do they do? Well, they can start by coming to Autism Ontario. And we will get them set up to where they need to be. They need to get a diagnosis.

They need to get access to programming. And they need to understand the nature of what autism is and what it isn't. Now, when the Ford government came in five-plus years years ago they made some changes. What do they do differently? They actually took a lot of their ideas from a group that was formed to inform the government of Ontario about its Ontario Autism Program and so what they did was think about that with the input from autistics, from parents, caregivers, from community members and people and researchers, people who understand collectively what's at stake. So theoretically, the changes should have been better. That's right. Theoretically.

Well, the changes were good. And I would say the direction was a good one for children and youth. And I think the idea of coordinating those activities, especially in the early years, getting people to diagnostic supports quickly, gaining access to programming in a clearer pathway, gaining access to programming in a clearer pathway, and in creating opportunities for families to participate in local community programs to give their kids a good start and to continue that as they enter to school. All right. With that background in place, let's get some feedback.

A lot of people were not happy, obviously, with those changes that were made five-plus years ago. Were you one of them? Well, I think the government made some good choices. I would agree with Marg in terms of how they expanded the idea of what service is. It was a good start, I would say. For example, speech-language pathology became included. Occupational therapy became included. Devices, communication devices for non-speaking kids,

there was a stipend for that. And they began just the very early stages of expanding out, which is what we need to do. We need to expand the idea of autism services beyond just therapy, right? Into really looking at, because I think we can do better with what we have. I think right now what we need to do is really look at best practices in other areas,

such as in the United States, and actually start to build newer programs. Follow up on that though, Anne. The changes that this government brought into place five plus years ago, you've told us what you like. What changes do you think you don't like and didn't work out? Well, we're still operating on a segregation-based model. Which means what? Which means that young children are placed in very often very intensive, segregated, separate clinical areas for early intervention. And then they still are generally streamed into segregated special education classrooms.

And there isn't enough integration and inclusion at school, then they end up being segregated into segregated group homes, again, removed from society. So what's really missing in a lot of this is an inclusion mandate, goals to get better inclusion in society for autistic children and for autistic adults, because that's what impacts one of the big things that impacts the quality of life. Jessica, is there a consensus out there that this is in fact the way to go? So, I think...

So, I would agree with what we've heard before already about sort of the expansion of the kinds of services being a really good thing so making sure that we have so applied behavior analysis what was previously sort of the only type of support that was funded in the past and now we have these other services that you've heard about I agree that the what we really need to work on still is integration into the school system so one of the things that the new model does provide is for kids who are just before they enter school,

there's a program called Entry to School, and those kids get a little bit of extra support in a very sort of well-supported environment to get ready for school. And then when those kids move into school, there's a little bit of support that goes into the school with them. Now, if every kid could access that, that would be ideal.

And right now, it's only available to kids who haven't started school yet. So it's just within that age group. It would be a nice model to expand that to kids who are older and having more difficulty in school and sort of really finding ways to integrate whatever therapeutic supports they've been getting into their school environment. That's, I think, where we really need to move forward now.

Let me share some stats and then have you comment on those. And Sheldon, if you would, I'm at the top of page two. Let's bring this graphic up. Only 20% of kids in autism programs have core service funding, apparently. Now, here's the Trillium, which submitted a Freedom of Information request, the Trillium, an online publication covering Queen's Park. And they recently learned that there are more than 67,000 children registered for the

Ontario Autism Program. That's as of the end of last year. Fewer than 14,000, fewer than 14,000 of the 67,000 have received funding for core clinical services, and a little over 17,000 are registered to receive core services, but this includes those waiting for an interview and funding allocation, or those who recently aged out of the program. Let's understand this better. Jessica, what's involved in these so-called core clinical services? Right, so the core clinical services are those services that we were referring to. So they can include applied behaviour analytics supports,

speech language therapy, occupational therapy, mental health supports, as well as the services for the technology for communication that we heard about. So these are sort of what, they're considered the core services because they have sort of the greatest bulk in terms of sort of therapeutic contact with families. However, there's lots going on for families while they're waiting for those core services. So there's, once you get your name on the list

for the Ontario Autism Program, your family has access to something called Foundational Family Services. And those services are a range of offerings, including workshops about sort of understanding autism better, managing things like toilet training, or sort of kids who are having difficulty managing big emotions. So they have some supports to get started right away. And then sort of for the younger kids,

there are two things that families have access to. So one is called caregiver-mediated early years services. Lots of words. Lots of, it's a big acronym there, but anyway, keep going. But essentially what that program is, is families can choose one of six different models. They're all evidence-based models. And they are ways that parents can be taught specific strategies to interact with their child in a way that helps them feel empowered,

meets their family priorities and goals, and really helps them to support their children in the home. So that's something that families can get that's outside of those core services. I suspect, Anne, the answer to this is obvious, but let's put it on the table anyway. The importance of getting these services in a timely fashion for young kids who have autism is what? It's very important for kids and families to get support. And I think there's been a lot of discussion about early interventions. I think one of the pieces that's missing

is looking at quality of life across the lifespan. And what I would say is that we've been kind of approaching autism for many years. Policymakers have been approaching autism from sort of a charity perspective, right? We need to help these kids. we need to help these kids, we need to give these kids these therapies and speech language, occupational therapy are extremely important. But we also need to pivot a bit from a charity perspective

towards a rights perspective and look at the rights. Just like people with other disabilities, these kids and adults have rights. They have the right to an inclusive education. They have a right to safe living in a group home. We need to regulate the group homes. We need to get people integrated more into living in the community. And that will improve their quality of life because no amount of therapy can help you if you're in an abusive group home or if you're segregated in a classroom and you have mental health issues you if you're in an abusive group home or if you're segregated in a classroom and you have mental health issues or if you're in poverty. So you really have to take a whole systematic approach to it as well as we do with other disabilities. Mark, we showed those numbers

earlier. There is a big backlog in a request for services. The provincial government in its most recent budget put tens of millions of dollars towards trying to do something about that backlog. Yes. How much impact can it have? That depends on how they spend it. So we're still waiting to hear what that might look like. And indeed, there'll be additional funds required to serve that large number of people. And that can't come soon enough. large number of people, and that can't come soon enough. And I think investment in a variety of ways. One is that making services available more equitably across the entire province is critical. I think the piece about the integration with school years is absolutely fundamental. For this program to work at its best, they shouldn't have, MCCSS shouldn't have to do the only weightlifting. Terrible acronym there.

Yes. Ministry of Children's Community and Social Services. Okay, there we go. But education and that ministry and the Ministry of Health need to work together to make this work. So funds towards this specific program, and I couldn't agree more with Anne about this being a rights-based issue, not so much as a, we shouldn't think about it as charity. This should be about what does it mean to live and be a Canadian citizen and to grow and thrive and learn? We wouldn't say, well, we don't have enough funding this year for kids to go to school. We just, we wouldn't, people would laugh at that,

such a statement. That needs to be true for all the children, all the students, and to think about that in the context of a life course. Do you think governments still convey the impression that they are treating this as a charitable thing rather than a rights-based thing? I think those words aren't being used in that way, but sometimes the funding looks like that. People talk about when is it going to be enough funding? And that, even asking such a question, suggests that perhaps it's been enough. And when we haven't achieved a way for people

to be fully included, when we haven't given them the tools to learn and grow, when we haven't supported their families in a way that allows them to be parents first. Those are the things. And not prepare autistic folks to get jobs and be participating members of the community in the ways that they want to be and can be. So all of those things, it's a different mindset. The minister who's responsible for this file, we invited him to appear on this program with you. Okay, his people declined.

They're allowed to do that. But they did send an email statement that said, in part, in our most recent budget, we have further increased funding for services by an additional $120 million. Families registered in the Ontario Autism Program can access a range of services and supports. Invitations to core clinical services continue to be issued to families based on their child's original date of registration in the OAP.

They go on to say, in July 2021, we announced the Ontario Autism Program Capacity Action Plan. The Workforce Capacity Fund is a key initiative under the plan that provides grant funding to children's service providers and community organizations for initiatives that build clinical capacity in the OAP with a priority focus on northern, rural, and remote communities. Now, just to clarify, because we said 60 million in the intro and they've said 120 million here, there's a one-time 60 million bump up as well, I gather, that brings it up to 120 million. Anyway, this, I don't

know why everybody, well, I guess the bureaucracy talks in bureaucraties because that's what bureaucracies do. That was a very bureaucratic answer, but can you sort of dive down into that and explain whether or not they've got a leg to stand on with this? I think what they're trying, so if we think about these, if we think about why families are waiting for core clinical services, let's say, they're waiting because there are several steps. So we talked a little bit about the families wait, when they first have concerns about their child, they wait to get a diagnosis. In our research, we have found that families are waiting sometimes two or three years before they can access that diagnostic assessment.

And families... That's way too long, right? It's way too long. And parents are telling us, I have noticed that something's going on with my child that seems a little bit different since they were under a year of age. So parents, we really need to listen to parents, first of all.

So people who are seeing kids, we need to listen to the parents when they have concerns. But then once families get that diagnosis, they're then waiting for, to be, there was mention there of an interview. So that's called a needs-based assessment. So through the Ontario Autism Program, families receive a long, a lengthy, detailed interview

to try to understand what are their child's and family's needs. But then there's another piece, which may be that there isn't right now enough capacity in the system, meaning that there aren't enough skilled, trained individuals to provide the supports and services that are needed. So there are a few areas where there are gaps, and that's where the capacity-building initiative came in, was to try to get people to...

An example might be that people who work in mental health may be good at understanding anxiety, but hadn't sort of understood how it applies to autism. So that's a situation where you could train up mental health professionals to understand anxiety and autism and provide extra support. Let me pick up on that and go to Anne on this, because I ask people this all the time. If you doubled the health budget in Ontario, would the system be twice as good and would we be twice as healthy? And everybody says no, right? Everybody says no, because there's so many built-in problems

in the system that simply doubling the budget wouldn't make it twice as good. What if we took that same question and put it towards autism services? Would the system be twice as good if we doubled the budget? I think that's a really important question. And I think some of the conversations you end up kind of rearranging the deck chairs on the Titanic, right? Because if you're not making the systemic changes that are really needed to have an inclusive environment, a safe environment, and an environment where people understand each other, right, then you're just pouring more money into a system, like I said, that's kind of based on a segregation model.

Every autistic person, and in my organization, we're all autistic, it's autistic-led, everybody wants to be understood, included, and safe. And these are, you can't necessarily quantify that, right? That's not only about providing therapy, but it's also about educating teachers, educating the public, educating even policymakers on how to communicate and what the needs of the community are. So we really tend to micro-focus on fixing the kids, but there is some fixing that needs to be done in the broader society in terms of education. And those are the kinds of initiatives that we're working on at A4A. Having said that, Marg, I also, I talk to politicians

about this all the time and they say there is no amount of money we could spend that would solve this problem. Doubling, tripling, quadrupling the budget. There is just so much demand for all of these services, we could never satisfy demand. Is that fair to say? I would say that's not fair at all. I'd say that we haven't invested for a long time. And when we did invest many, many years ago, it was institutional settings. We've moved from that, but we haven't then also reinvested in communities in the way that can do the kinds of things we're talking about here today. So I think, I don't know what that top number is. Is there one? I think when we talk about people, plus we're seeing an increase in prevalence rates. So we will continue to see more folks

looking to be understood, to be well supported. But do people in your world understand that there is a finite amount of money that any government can spend on these services and that's life? Of course. And that means also looking at larger systemic issues about housing, looking at a place, not only a housing and a place to live, a place that's well supported, not just bricks and mortar, and looking at a place, not only a housing and a place to live, a place that's well-supported, not just bricks and mortar, and looking at also opportunities for job and for inclusion, for employers to understand who their very valuable autistic employee is

and how they can best support them to give their best. So there's so many pieces like that that are harder, as Anne said, to quantify and think about what does it mean to be a more inclusive society? And sometimes dollars are attached to that when it comes to educating, but it really is about people desiring to be neighbors and fellow classmates, teammates, colleagues in society. Gotcha. Anne, I wanted to ask you about diagnosis because everybody here today has said early diagnosis is key to getting the show on the road. So just explain how that works. Who does the early diagnosis in the first place?

Well, I mean, there are licensed tests. They're actually quite expensive. They're licensed by just three companies, and they're typically provided by a developmental pediatrician or sometimes an autism center. So not your GP, in other words. You're doing something else in this case. Yeah, there's a referral. And the diagnosis is useful not just to know and to know what services are needed, but it's also useful in terms of when you go to school, being able to get accommodations at school. And so that really, diagnosis helps the parents to be able to

advocate for their child to be included in a mainstream classroom for example well let me ask about that parents must be i mean they must be so frustrated when they are waiting for this diagnosis that they are waiting and waiting and waiting for and can't get what should they do while they're in that waiting period so first i'm just'm just going to add, so in most of Canada, the diagnosis can be done by, can be provided by a physician or a psychologist, or a psychiatrist, who is a physician, and then in some cases by a nurse practitioner.

So there is a little, there is some breadth in terms of who can provide that diagnosis. A nurse practitioner can diagnose autism? Yes, if they have particular sort of extra training. And then I will just add too, I'm grateful for this shift, but there has been a shift in the past five or so years away from some of these specific tests,

which I think is a good thing. So the tests that Anne was referring to are expensive and are very highly controlled in terms of who has access to them and who can use them. What we've found over time is that if you can train a community of, let's say, community pediatricians to identify autism, make a diagnosis and support the kids and families so that families aren't only having to come to sort of specialized centers.

And we're doing a lot of work through an initiative called ECHO, which stands for Extensions for Community Healthcare Outcomes. And it's a nice, it's sort of a, it creates a virtual community where we train community physicians around kind of what to ask parents, what to hear from parents, what to listen for.

Okay, but back on the original question, though. What are parents supposed to do when they wait and wait and wait and wait for that diagnosis? Exactly. So the first point is that there are ways that we're trying to help families wait less, which is this capacity building. But while families are waiting, there are some so there are some services that are available. So if let's say your child has speech and language delays, there is publicly available speech and language.

There are services available. Families can, in Ontario, what we recommend is that families bring their kids to those like early on centres, which are developmental centres where they can play with other kids and just have exposure to kind of how other kids play and make friends and participate in the community that way. Sometimes we recommend that families look into daycare

if they're really struggling to kind of find social opportunities for their children, just so, again, so they can kind of be part of the society from the very, very beginning. Could I jump in for a moment? Please. opportunities for their children, just so, again, so they can kind of be part of the society from the very, very beginning. Could I jump in for a moment? Please. Because there is a solution that people didn't like, and that was Minister McLeod at the time suggested, Lisa McLeod suggested. She suggested means testing. Means testing is where you, it's like the Ontario Trillium Drug Plan, actually, that's already in existence, where you state your income and you fill out a lot of forms.

And if you have a high income, you pay for a certain percentage of the service, whether it's, we don't have it now, but whether it's diagnosis, whether it's therapies. People with higher incomes would pay a little for those services. And then that would free up money in the kitty for people that don't have income

to access those services? We've always supported income testing for autism services because obviously it's more equitable because people that have a lower income Will have more access there will be a shorter waiting list and people with a higher income will will just have to pay a little Bit for that did you get that through? No, it was extremely unpopular unfortunately, but it shouldn't be forgotten, at least as a partial solution. Sadly, the time flies around here all the time. But we're down to our last few minutes, and I do want to talk about, we've talked mostly about young people here,

but I do want to talk about adults. What kind of supports are in place, need to be in place, to help adults who are autistic? The first thing we need to know is that there are very few services available for autistic adults in this province, in this country. So we have a long ways to go there. But it starts in school years. So thinking about those transition years

into adulthood are critical. Right now, there's a requirement in school years to actually plan for that transition, but there isn't often something to transition to. Because when you age out, it's like you fall off a cliff. Exactly. So you need to have something, you need a handoff of support and saying, okay, here's what is here and here's how we can build it. And what we need to do is to be thinking about the wide range of the autism spectrum, because there are folks who are college and university bound. There are folks who are work bound in terms of where they may be heading.

But right now, the majority of folks are not doing a lot. They're sitting at home with their parents. Jessica, a guy we've had on this program many times talking about this, and he is a great champion for this issue because his son, Jayden, is non-verbal autistic. You all know him. Mike Lake, a member of parliament from Alberta. Great guy. He's talked a lot to us about a national autism strategy.

I know this is all provincial jurisdiction, but he thinks we need a national approach to this. Is that the way to go? You know, I think it is. I think that what we're finding is that there's so much variability across provinces and territories in terms of inclusion and sort of job opportunities, living opportunities sort of as kids become adults. I think a national strategy is a way to sort of put into place some approaches that are that are universal that are universally agreed upon with the community that will that

really aim towards inclusion I mean inclusion and quality of life really are sort of the the core mandates of that initiative and I think it's a really nice way to make sure that there is equity across the system I mean theoretically and whether you're an autistic kid in Alberta or in Ontario, there's a floor of services that presumably you're entitled to, fair? Yes, yes. If it's rolled out properly, a national autism strategy is a great idea.

The question is, will it be? And we're a bit skeptical about it. In the United States, they have a national strategy and they have an advisory board that's comprised, as well, of members of the Autistic Self-Advocacy Network. Not just hearing lived experiences, but hearing ideas from autistic and other disabled people. I think that's a really core component,

and we haven't seen that yet in the national strategy. Gotcha. That's our time, everybody. I want to thank you all for coming into TVO tonight and helping us understand this better. Jessica Bryan from Holland Bloorview over here, Margaret Spolstra from Autism Ontario, and Anne Borden-King, Autistics for Autistics Ontario. It's really great to have all of you here. Thanks so much.

Thank you. The Agenda with Steve Paikin is made possible through generous philanthropic contributions from viewers like you. Thank you for supporting TVO's journalism.