My name is Kristen, and I'm a single mom of one son. Carter is currently 8 years old and is living with Autism. He is on the severe end of the autism spectrum and faces many challenges. He is mostly nonverbal, is still diapered, has no concept of danger and is prone to dangerous behaviours (climbing, bolting). While, he has these challenges he is so much more than his diagnosis. He is bright, intelligent, and incredibly funny. He loves letters, numbers, bubbles, jumping on the trampoline, building block and lego creations and foreign languages. His spirit brings everyone around him so much joy.
To know and understand Carter's story we must go back in time. Carter was diagnosed with autism at age 2 years. He was promptly put on the waitlist for intensive therapy services. I was told this was very best chance to make gains and to meet his full potential. He was on the waitlist for 4 years. I received the highly anticipated call that he was at the top of the waitlist in March, 2016. At that same time of the Liberal governments announced an age 6 cutoff. This happened as I was waiting for a contract to start direct funded therapy. We were in limbo, we didnt qualify for the offered pay out because we weren't "on the waitlist" any longer. We had a verbal agreement to start services but had not signed necessary documents. After, much argument Carter was able to start therapy April 18,2016. Just prior to the start of therapy I was forced to leave my job, because a parent is required to be present for therapy and I am his only parent.
Intensive therapy was everything I had hoped it would be. Carter is very bright but needed to learn this way at an intensive level. He has thrived in therapy since that point making consistent gains, on an upward steady developmental trajectory. This is of course great news but what one must understand is the gap between where Carter is and his peers is quite wide. He's still working hard to make the gains necessary to shorten the gap to be able to meet his full potential.
Families including myself fought the Liberal government, on their misguided and discriminatory plan and won! Carter has been in therapy since that point.
Fastforward to present day. Carter goes to school part time and does 25 hours of therapy a week. He has supports at school because of his high needs (diapering, being non verbal, etc) that I fought hard for. While we are able to manage school at this point with supports, he is absolutely NOT ready to go to school full-time.
He has come so far but he is EXTREMELY sensitive to change. Regression has happened this past week alone because of the changes in routine caused by March break. Regression and loss of the skills he has acquired is a grave concern of not only mine as his mother but a concern that has been echoed by his clinicians and his therapist.
Carter waited for MORE THAN HALF HIS LIFE, for evidence based, needs based services. He is worthy of investment. All children are worthy of investment and deserve evidence and needs based services.
I am extremely concerned for my future, and for Carters future. My dream for him was to be a productive member of our society. He DOES have things to offer, if afforded the opportunity to meet his full potential. It was not my dream to have him and tens of thousands of kids like him left behind. It was not my dream to potentially leave us with no choice but for him to end up on ODSP. It was not my dream for children waiting on the list for their turn, just like we did, to never have the opportunity to receive evidence and needs based services. These things are completely unacceptable. The consequences of the changes to the Ontario Autism Program are going to be irreparable and cause catastrophic harm to these children and to their families.
Carter has made the most gains in his therapy journey in the last three months. The data collected does not lie. He is excelling but still has a long way to go. Unfortunately, Carters last day of therapy is May 12, 2019, Mother's Day of all days. Even more devastating, is the fact that I do not have the means to pay for Carters needed therapy by myself. Therapy costs 5958.33 a month or 71,499.96 a year. It is just not possible for me to provide even a fraction of this. Carters now slated to receive 5000.00 a year under the new program parameters. These funds would provide him 3 weeks of needs and evidence based therapy per YEAR that has been deemed medically necessary.
On Monday May 13th 2019, Carter will go to school because there is no other option for him. His school will receive no new funds to help him. They are NOT prepared. He will go to school not understanding that he will no longer get the therapy he needs. Not understanding that he may never see his therapist Christine again, because unfortunately I cannot pay her and his government is abandoning him. The rug is going to be pulled out from under him. This child who has worked so hard and come so far stands to lose everything he's worked for because there are NO transition plans, NO school integrations plans.
The thing is, over the years Carter has received short blocks of other therapies such as: speech therapy, occupational and physical therapy. None were ever effective because none ever taught him in the way that was meaningful to him. None of them were ever intense or for any more than a few short weeks "blocks". Carter has learned EVERYONE prior to our therapist Christine has left him prematurely. This was supposed to be different because there was supposed to be no discrimination based on age or level of function. Again, my son is going to have someone be forced to walk away from him, to leave him behind far before he’s ready and far too soon.
I cannot accept that this will our families story. Carter who is 8 years old has not found his voice yet, until then I am his voice. I am the voice of families who have not had the privilege of seeing their children thrive. This cannot continue. I will not be a bystander while children are robbed of the opportunity to meet their full potential. Not today, not ever.