Dear Premier Doug Ford,
We are parents of a 9-year-old girl with complex needs. My husband and I are asking you to take a moment to meet our daughter Bella Haefele. We have also taken the opportunity to share a personal photos of her and her service dog, so that you can put a face to her name. Bella is a unique and special individual, not just a number. Amongst her many diagnosis of Global Developmental Delay, Pitt Hopkins Syndrome, and Cortical Vision Impairment, she was diagnosed with severe Autism Spectrum Disorder (ASD) in 2012. My daughter is unable to learn and play with peers her age. She is cognitively at a 12 month old. She is non verbal, requires one-to-one support for her physical safety, and relies on us for daily living skills such as feeding, dressing and toileting.
When we first received her ASD diagnosis in 2012, we immediately placed her on the waitlist for the relevant services that were available for her in the public system: Early Intervention, respite, social groups, physiotherapy, occupational therapy, and speech and language therapy. Being hopeful that these services were there to support her physical, cognitive and social well-being, we soon faced the reality of continuously being slapped with wait lists that ranged from 12 months to 2+ years in length.
Recognizing that these services were all important for her growth and development, we soon learned about Applied Behavioural Analysis (ABA) therapy, and more specifically, Intensive Behavioural Intervention (IBI is a more direct and focused application of ABA). We decided as a family to financially invest in this costly treatment for Bella. ABA therapy is the only scientifically proven technique and principle used to bring meaningful and positive change in kids and adults who live with autism. 4 years is the time that our family had to wait for service on the IBI waitlist. 4 long years of navigating the system for resources and finances to support our daughter’s IBI therapy.
In December 2016, my daughter was required to take an eligibility screening with Kinark Child & Family Services to determine if she was still of value to receive IBI therapy. Following this eligibility screening, I was told by this support agency, that holds the mandate of supporting the lowest functioning and highest needs individuals with ASD, that my daughter was “too low” to receive service. As any parent would do, we took the matter into our own hands again and filed for an appeal. After much time and effort, our appeal was successful and Bella’s name was back on the list to receive IBI therapy.
At present, my daughter is receiving direct instalment funding from the government for ABA therapy. With this funding, we have chosen to enrol her at a private clinic called ‘Breakthrough Autism’. For many years, the public education system has failed to provide the personalized programming she requires for her to learn successfully, however since she has been at Breakthrough Autism, she has made huge gains.
Currently, our daughter is receiving 30 hours of Intensive Behavioural Intervention therapy each week. At Breakthrough Autism, she is recognized for the unique individual that she is. She is in an environment that provides her with intentional, purposeful and meaningful ABA therapy to address her specific needs. With the individualized programming that she is getting, our family has been empowered with the knowledge, strategies and tools that have enabled us to be in control over our child’s learning.
I am one of the many parents across Ontario who is devastated by the recent announcement with the revamp of the Ontario Autism Program. I am urging you to look beyond your objective of clearing the waitlists to see that each and every child who lives with autism were not only born with autism, but will also grow into adulthood with autism.
Putting money into clearing the waitlist is not the answer. This completely disregards the children themselves, as each individual has unique needs; support for services and resources need to be personalized.This new OAP takes away the effectiveness of the services that the government is investing in. By diluting the funding, you have essentially minimized the proven success of the services that have thus far been provided to the children. You have to look at the science behind the evidence-based intervention to understand that intensive and consistent programming is most likely to produce positive behaviour changes and improvements.
Autism is not a sickness that can be cured with a cap of a dollar amount. My job is not to be a professional protester. My job is to be a mother, and as a mom, I am advocating to the best of my ability for my child and my family. I urge you to reach out to families like mine and get to know who we are, and what we need. My daughter is more than just a number waiting to be paid out.
I look forward to meeting with you or a member of your staff to further discuss how you can help the many families that face the same challenges as our family. Thank you in advance.
Andrea and Peter Haefele