Ma fille Manon se trouve parmi les 23,000 enfants sur la liste d'attente. My 5 year old daughter Manon is among the 23,000 children on the Ontario Autism Program (OAP) waitlist.
Manon was placed on a waitlist to be evaluated for autism on August 20th 2015. She was diagnosed with severe autism and mild global development delay nearly 2 years later on May 15th 2017, just a few months after her 3rd birthday. She was placed on the waitlist to receive Intensive Behavioral Intervention (IBI) and I was told that the waitlist would be approximately 1 year. One year passed by and I was then informed that she would not access the program for at least another 18 months. I was devastated because early intervention is crucial for children with autism and that day I had come to the realization that I would have to pay out of pocket to provide my daughter with the life changing therapy she desperately needed to acquire the basic skills that most children learn naturally. Then we were struck by an even more devastating blow. We were, and continue to be, unable to find a private service provider in Sudbury who offers IBI in French. We have worked so hard to develop Manon’s communication skills in French that it would be counterproductive to any progress we have made to put her through the struggle of participating in an English therapy program. Feeling completely defeated, we accepted to remain on the enormous waitlist with the hope that, through the Direct Services Option of the OAP, she would eventually have access to IBI therapy in French and receive the appropriate amount of therapy based on her needs.
All hope of that has now slipped away with the implementation of the Childhood Budget. Being severely affected by autism, Manon will require between 20-40 hours of IBI therapy per week at an annual cost of approximately $55,000 to $75,000. My family will struggle and may not be able to provide her with the bare minimum amount of therapy she needs to thrive. As a parent, it’s devastating to know that the provincial government has failed my daughter and will leave me unable to provide her with the appropriate amount of life changing therapy that would support her in the development of skills that could allow her to communicate with others, make friends, learn to read and write, get dressed, get a job and perhaps even live independently.
At 20 hour per week, IBI therapy will cost us $4,400 per month while the Childhood Budget will cover a maximum of $5,000 annually. My husband and I will be forced to drain our bank account, take on part-time work in addition to our full-time jobs and risk the financial security of our family with a massive line of credit to pay for the annual $55,000 therapy. We will do everything in our power to help Manon reach her full potential. However, as we take on additional part-time work to pay for Manon's therapy, the sliding scale of the Childhood Budget will penalize us and leave us with nothing.
Furthermore, by eliminating the Direct Services Option of the OAP, the government has eliminated mandated bilingual services and will leave families like mine unable to access services. There are 10 registered Board Certified Behavior Analysts/Board Certified Assistant Behavior Analysts (BCBAs/BCaBAs) located within Greater Sudbury with 6 of them working for the school boards as well as Child & Community Resources. Therefore, with 4 BCBAs/BCaBAs who offer private services, our community simply does not have the capacity to handle the influx of children who will be seeking evidence based therapy in the months to come, let alone my daughter who will require the services in French.
So while the promise of eradicating the waitlist and providing families with money sounds great - it’s really just putting them into another struggle.
Manon requires funding that is based on her individual needs. Her access to therapy should not be limited because of her age, our family income, the northern community that we live in or because she is francophone. The government has the opportunity to make changes to the program, but we need equity not equality. We also need a government investment in service providers because they will not have the capacity to service 23,000 children.
Manon was diagnosed on May 15th 2017 and has been on the waitlist for IBI services for 20 months. Last week, Child & Community Resources informed me that they were now servicing children in our region with a diagnosis date of December 2015. Even with the long waitlist, I am not tempted by a $5,000 cheque. I'd rather wait for a program that adequately supports the individual needs of my daughter. Je préfère attendre.