Rebecca Zandbergen: The Ontario Autism Program is expected to get a boost in funding this year. The recent Ontario budget promises $186 million in new money, bringing the annual funding total up to $965 million. But through freedom of information requests, CBC News has learned that right now, only a quarter of the children registered with the Ontario Autism Program are actually receiving support. My next guest's son is one of more than 67,000 children in the province who are still waiting for that funding. Spencer Carroll is the creator of the website End The Wait Ontario, an advocacy site that offers resources to parents navigating the system. Good morning, Spencer.

Spencer Carroll: Good morning.

RZ: First of all, let's start with your son. Tell me a little bit about him and his needs.

SC: Sure. My son was diagnosed at 14 months with level three autism. So nonverbal, requiring a lot of assistance. We noticed some early signs that we should probably get a diagnosis and we were in a position that we could seek a diagnosis privately. So that was kind of the beginning of our journey down navigating the provincial Ontario Autism Program.

RZ: But you are on the waitlist?

SC: We are on the waitlist. So we were registered, I believe September 2021, and have been waiting ever since.

RZ: And haven't received any funding?

SC: Nothing. No.

RZ: Really? Because you're waiting for the core—

SC: Yes. So there's a breakdown of their kind of ancillary services, foundational family services, entry to school program, other kind of while-you-wait services. The core clinical services are the ones that make the most meaningful impact. So you've got your speech-language pathology — we've heard all these acronyms, there's so many — occupational therapy, physio, many, many, many little subspecialties that come in to helping such a complex—

RZ: And why haven't you accessed some of those other funding bits that come along that are not part of the core?

SC: We have. The problem is they're not intensive. So I kind of liken it to a patient that might have had a stroke — in order to get meaningful results you need intensive therapy. So this requires day after day after day, repetitive. The services as they're set up now, kind of the ancillary services, those don't provide that repetitive core function.

RZ: But you have gotten some services for your son through private means?

SC: Yes. So we pay out of pocket for services that we can afford. So to date, we've probably — probably approaching about $100,000 in terms of out-of-pocket for professional services. So that's again, all those subspecialties that I mentioned earlier.

RZ: Is that money you have or you've gone into debt doing this?

SC: Luckily we can afford it out of pocket. But these services — we're lucky that we can afford to pay for these things, but not fully as they should be paid for in terms of their scope that's needed to get a meaningful outcome. We can only pay for what we can do and then the rest, we just wait.

RZ: Because the risk of waiting is what, if your son didn't have any services in the years that you've been on the provincial waitlist?

SC: Yeah, so I was lucky enough to be able to do an interview that was featured on the World Health Organization media channel. So through the help of a very good friend, Marie Cancale, who I'll just mention — thank you — we were able to profile what autism is, what it isn't, and timely intervention. So between the ages of zero to six, that's when neuroplasticity in the brain is at its — you can make the most fundamental changes in those windows. So “success before six.” And we knew that, we recognized it, and paid whatever we could, whatever we had to, to get to that point. But that is what the World Health Organization recognizes, published within their papers, as to what those guidelines should be.

RZ: And what have you been told as to why you're still waiting? Have you received the official diagnosis and assessment from the province yet, or not even that?

SC: So we've already sought that. We've already got a private diagnosis. That's already been handled, registered within AccessOAP to receive core clinical services. We're just waiting.

RZ: And what kind of correspondence do you have with the province on that?

SC: Largely crickets. It's a black hole of communication. I believe it is that way by design. We've gone through our MPP twice to try and get information from AccessOAP. One of the attempts was deflected as the MPP was not authorized to make access to the organization to get our files. We signed an authorization to do so. Second time was, “We just don't have any information.”

RZ: Are you encouraged then that the province says it's boosting the funding for the Ontario Autism Program? Is that encouraging?

SC: It is in a sense. However, there's no timeliness into getting that waitlist down. So you can throw dollars at a problem. But unless there's an actual defined plan as to how you're going to eliminate that backlog, there's no meaningful way — you're not solving your problem, you're just throwing money at it.

RZ: We did reach out to the Ministry of Children, Community and Social Services to ask for an interview with Minister Michael Parsa. His office rather sent us a statement. It says that it's invested nearly $1 billion into the Ontario Autism Program, a 232% increase since 2018. The statement adds, quote, “Under their government, the number of kids in core clinical services has tripled.” What do you make of that statement then, if we were to take that at face value?

SC: Again, talking points. The on-the-ground reality — numbers that are increasing, yet you just keep announcing a larger headline number of what you're investing — doesn't solve the problem.

RZ: But if they have, in fact, tripled the number of kids in core clinical services, that should spell a good result?

SC: Yes, but your waitlist is also growing exponentially. So you're not solving the problem. Your waitlist is exponentially increasing, yet your enrolled numbers are going up. It's a participation trophy when you're not solving the problem.

RZ: And what is it like to have your son — knowing that this is the backlog? And other parents, I'm sure you're part of a community. I know you are. You have this website. You're hearing from parents who are concerned, and yourself — your own concerns for your son.

SC: It's just — it's a tired community of parents that are doing the best to give their children the best, sacrificing everything they can to do. So you know, it's just dismay. There's really no hope. There's no timeliness. There's no communicated messages to when things will improve. It's just an echo chamber of, “Oh, we're increasing funding” when nothing changes.

RZ: How is your son doing, given the interventions that you've been able to provide him through private means?

SC: He's — it's great, little man telling him not to do stupid things all the time as he would with any little boy. He's doing well, but he could do better with the services that should be fully funded.

RZ: And if we do speak with Minister Parsa, what is the biggest question you have for him?

SC: We need accountability to see where funding is going. We need performance metrics as to whether the structure that we have in place is working because, as it exists, it's not. You're not servicing the community that requires supports for their autistic children. And it needs oversight, whether it's federal, whether it's provincial — put in a framework that people can access, basically figure out whether the system's working or not, because there are no metrics or mechanisms that allow the general public to look into the program to say, “Hey, we're doing well,” or “We're doing poorly.”

RZ: Okay, Spencer, thank you for coming in this morning.

SC: Thank you so much.

Spencer Carroll's six-year-old son has autism. Carroll is the creator of the website endthewaitontario.com.

Rebecca Zandbergen: The Ontario Autism Program is expected to get a boost in funding this year. The recent Ontario budget promises $186 million in new money, bringing the annual funding total up to $965 million. But through freedom of information requests, CBC News has learned that right now, only a quarter of the children registered with the Ontario Autism Program are actually receiving support. My next guest's son is one of more than 67,000 children in the province who are still waiting for that funding. Spencer Carroll is the creator of the website End The Wait Ontario, an advocacy site that offers resources to parents navigating the system. Good morning, Spencer.

Spencer Carroll: Good morning.

RZ: First of all, let's start with your son. Tell me a little bit about him and his needs.

SC: Sure. My son was diagnosed at 14 months with level three autism. So nonverbal, requiring a lot of assistance. We noticed some early signs that we should probably get a diagnosis and we were in a position that we could seek a diagnosis privately. So that was kind of the beginning of our journey down navigating the provincial Ontario Autism Program.

RZ: But you are on the waitlist?

SC: We are on the waitlist. So we were registered, I believe September 2021, and have been waiting ever since.

RZ: And haven't received any funding?

SC: Nothing. No.

RZ: Really? Because you're waiting for the core—

SC: Yes. So there's a breakdown of their kind of ancillary services, foundational family services, entry to school program, other kind of while-you-wait services. The core clinical services are the ones that make the most meaningful impact. So you've got your speech-language pathology — we've heard all these acronyms, there's so many — occupational therapy, physio, many, many, many little subspecialties that come in to helping such a complex—

RZ: And why haven't you accessed some of those other funding bits that come along that are not part of the core?

SC: We have. The problem is they're not intensive. So I kind of liken it to a patient that might have had a stroke — in order to get meaningful results you need intensive therapy. So this requires day after day after day, repetitive. The services as they're set up now, kind of the ancillary services, those don't provide that repetitive core function.

RZ: But you have gotten some services for your son through private means?

SC: Yes. So we pay out of pocket for services that we can afford. So to date, we've probably — probably approaching about $100,000 in terms of out-of-pocket for professional services. So that's again, all those subspecialties that I mentioned earlier.

RZ: Is that money you have or you've gone into debt doing this?

SC: Luckily we can afford it out of pocket. But these services — we're lucky that we can afford to pay for these things, but not fully as they should be paid for in terms of their scope that's needed to get a meaningful outcome. We can only pay for what we can do and then the rest, we just wait.

RZ: Because the risk of waiting is what, if your son didn't have any services in the years that you've been on the provincial waitlist?

SC: Yeah, so I was lucky enough to be able to do an interview that was featured on the World Health Organization media channel. So through the help of a very good friend, Marie Cancale, who I'll just mention — thank you — we were able to profile what autism is, what it isn't, and timely intervention. So between the ages of zero to six, that's when neuroplasticity in the brain is at its — you can make the most fundamental changes in those windows. So “success before six.” And we knew that, we recognized it, and paid whatever we could, whatever we had to, to get to that point. But that is what the World Health Organization recognizes, published within their papers, as to what those guidelines should be.

RZ: And what have you been told as to why you're still waiting? Have you received the official diagnosis and assessment from the province yet, or not even that?

SC: So we've already sought that. We've already got a private diagnosis. That's already been handled, registered within AccessOAP to receive core clinical services. We're just waiting.

RZ: And what kind of correspondence do you have with the province on that?

SC: Largely crickets. It's a black hole of communication. I believe it is that way by design. We've gone through our MPP twice to try and get information from AccessOAP. One of the attempts was deflected as the MPP was not authorized to make access to the organization to get our files. We signed an authorization to do so. Second time was, “We just don't have any information.”

RZ: Are you encouraged then that the province says it's boosting the funding for the Ontario Autism Program? Is that encouraging?

SC: It is in a sense. However, there's no timeliness into getting that waitlist down. So you can throw dollars at a problem. But unless there's an actual defined plan as to how you're going to eliminate that backlog, there's no meaningful way — you're not solving your problem, you're just throwing money at it.

RZ: We did reach out to the Ministry of Children, Community and Social Services to ask for an interview with Minister Michael Parsa. His office rather sent us a statement. It says that it's invested nearly $1 billion into the Ontario Autism Program, a 232% increase since 2018. The statement adds, quote, “Under their government, the number of kids in core clinical services has tripled.” What do you make of that statement then, if we were to take that at face value?

SC: Again, talking points. The on-the-ground reality — numbers that are increasing, yet you just keep announcing a larger headline number of what you're investing — doesn't solve the problem.

RZ: But if they have, in fact, tripled the number of kids in core clinical services, that should spell a good result?

SC: Yes, but your waitlist is also growing exponentially. So you're not solving the problem. Your waitlist is exponentially increasing, yet your enrolled numbers are going up. It's a participation trophy when you're not solving the problem.

RZ: And what is it like to have your son — knowing that this is the backlog? And other parents, I'm sure you're part of a community. I know you are. You have this website. You're hearing from parents who are concerned, and yourself — your own concerns for your son.

SC: It's just — it's a tired community of parents that are doing the best to give their children the best, sacrificing everything they can to do. So you know, it's just dismay. There's really no hope. There's no timeliness. There's no communicated messages to when things will improve. It's just an echo chamber of, “Oh, we're increasing funding” when nothing changes.

RZ: How is your son doing, given the interventions that you've been able to provide him through private means?

SC: He's — it's great, little man telling him not to do stupid things all the time as he would with any little boy. He's doing well, but he could do better with the services that should be fully funded.

RZ: And if we do speak with Minister Parsa, what is the biggest question you have for him?

SC: We need accountability to see where funding is going. We need performance metrics as to whether the structure that we have in place is working because, as it exists, it's not. You're not servicing the community that requires supports for their autistic children. And it needs oversight, whether it's federal, whether it's provincial — put in a framework that people can access, basically figure out whether the system's working or not, because there are no metrics or mechanisms that allow the general public to look into the program to say, “Hey, we're doing well,” or “We're doing poorly.”

RZ: Okay, Spencer, thank you for coming in this morning.

SC: Thank you so much.

Spencer Carroll's six-year-old son has autism. Carroll is the creator of the website endthewaitontario.com.