Please help Mia and Sebastian with their therapy.

Hi all.

Our family is in crisis. Two of our three children are currently on the Ontario Autism Program (OAP) waiting list. Mia and Sebastian are 6-year-old twins, and originally received an Autism Spectrum Disorder (ASD) diagnosis in September of 2019. We immediately registered them in the OAP and have been on their waiting list since October 11 2019 (official registration date with OAP for both Mia and Sebastian). While we took advantage of the interim payments the program has provided for 2020 and 2021, this funding covered only about 25% of the services, therapy and support that Mia and Sebastian require in order to thrive. The program only allows us to apply twice for interim payments, as a result no funding was received for 2022 and as confirmed by the OAP staff no other funding will be received until such time as our October 11 2019 application is processed and we receive our invitation to core clinical services. In addition, after several phone calls and emails trying to get ahold of OAP back in August 2022, they were not only unwilling to provide any kind of timeline on when to expect our funding, but also unwilling to confirm for what OAP registration dates they are sending out invitations. Their answer to my question was “That information is not available to families.” and to inform me that there is no supervisor or manager that I could speak with in order to escalate this issue.

How can I be expected to make any sort of financial plan for the near future, if I have no idea if this funding will be available in two months or in two years.

What are parents like us supposed to do now? Mia and Sebastian need help now. Every expert we’ve met, everything we’ve read, highlights the importance of early intervention to ensure best outcomes for children with ASD. Even the OAP design, with funding caps based on the child’s age seems to have been based on the idea that early intervention is key when supporting children with ASD. We’ve seen these therapies and supports at work, and they are instrumental in both children’s development. Both their communication skills have grown by leaps and bounds. Mia is now using some verbal language; Sebastian’s aggression has decreased and both of them are gaining more and more independence at their own pace.

Mia and Sebastian were 2 years old when first diagnosed. The last four years have seen us exhaust our savings and even downsize our house in an effort to finance their medical expenses. We did this in an effort to ensure that our children will have the best possible foundation for their development, fully aware that these measures are not sustainable long term, while at the same time hopeful that help was coming in the form of the funding provided by OAP.

Even with paying for only the minimum amount of therapy recommended, our medical costs exceeded $70,000 last year. It’s not only Applied Behaviour Therapy. A good chunk of our expenses consists of speech, physical, occupational therapy, and other medical expenses. These costs of the therapies and supports required to support two children with autism are crushing, but the lack of these therapies is detrimental to their wellbeing. How is this not health care?

In September 2022, because of financial constraints we decided to reduce their ABA therapy to three afternoons a week, while at the same time switching from one-on-one therapy to small group therapy. This has had a tremendous negative impact on their ability to regulate their behavior, both at school and at home resulting in multiple instances of eloping and aggressive behaviour, and regression in skills learned. At the end of this month, Mia and Sebastian will be 6 years old and we find ourselves in the unfortunate position where we can no longer afford to keep paying for their medical expenses, if we wish to keep a roof over our heads and feed our family. It is heart wrenching to try and decide on how much money we should spend, or how far into debt we are willing to go for our children’s health and wellbeing. And then, what do I see on the news? The honorable Doug Ford, saying once again that our health care should not have to be paid for by our credit cards. Well, that is exactly what we have been doing.

In December 2022 we received our invitation to open an Access OAP account for both Mia and Sebastian. We were very excited and hopeful this meant funding would be coming in a reasonable amount of time, however once the account was opened there has been no further activity, and despite following up with both Access OAP and OAP, we have so far been unable to obtain any information on a possible timeline for funding.

Mia and Sebastian will never reach their full potential if they are not able to access sufficient therapies. As they grow, the cost of supporting them will be exponentially greater because they do not have access to the support, they need to teach them the functional skills needed to ensure the best quality of life.

Since August 2022 we have been trying everything, we can think of in order to find out approximately when we can expect to receive our OAP funding, and we’ve been met with a complete lack of accountability from various government branches, being passed around from one office to another.

If you are reading this and are not in a position to help or effect change, my hope is that you will be able to forward this to someone who is in a position to help us.