My Name is Chantal Chartrand and I am a special needs parent to my two amazing little girls Émilie and Valèrie.
Émilie is my 9 year old ball of energy. She was diagnosed with ADHD and Oppositionaal Defiant Disorder (ODD) in Nov 2015. We’ve had our struggles with Émilie and the school system. Schools definitely need more supports for mental health.
My Valérie is 3 years old and she was diagnosed with severe Autism Spectrum Disorder (ASD) Level 3 and Global Development Delay (GDD) in June 2018 when she was 2.5 years old. Val is also considers pre-verbal since she has a very small list of words she uses regularly. I have yet to hear her say, “love you” or “je t’aime” but she says it in other ways. Valérie gets frustrated when she can’t communicate her needs with us and has started some self injurious behaviour. We need help soon, very soon!
Valérie is such a sweet girl who is almost always happy flapping her arms and hoping to her favourite songs, colouring/naming all the colours, she loves letters from the alphabet (which she has learned to say and identify each letter) and she really enjoys playing in water. Valérie has always struggled with her developmental milestones. She had all the early signs for autism such has no eye contact, lack of sounds/speech, refused to touch food or feed herself, difficulties crawling/walking, delayed fine motor skills and she prefers to play alone waving her toys in the air. We were thankful to get on the numerous waitlist for both diagnosis and services early when Valérie was just 16-20 months old. Those services include Speech Therapy (ST) at Wordplay with a french Speech and Language Pathologist (SLP), early intervention program JASPER’s at Child & Community Resources (CCR), Physical Therapy (PT) and Occupational Therapy (OT) at Children’s Treatment Center (CTC).
While we waited for services, I did what most parents do, spend many hours researching children with developmental delays and autism because I want to know learn everything I can so I can help Valérie learn and develop has much as she can. The one thing I kept seeing over and over was how important early intervention programs, like JASPER’s (Joint Attention, Symbolic Play, Engagement, and Regulation) and Applied Behavior Analysis (ABA), are at improving most of the struggles children face living with ASD.
A quote from Autism Speaks website, “behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.”
Valérie has been on the Ontario Autism Program (OAP) waitlist since June 2018 to get provincial government funding for ABA therapy. She is considered high needs therefore she will require 1-1 support at home, at daycare, on the school bus and at school. It’s recommended that children with severe autism get 25-40 hours per week of ABA therapy at a cost of $55/hour or more. This amounts to $55,000-$110,000 per year for the intensive hours of ABA treatment she needs.
Under the old OAP program from the Liberal’s in 2016 the expected waiting period for ABA therapy in Sudbury is 3 years but at least when my daughters name was called, she would get 100% financially funded hours that she needs. Currently there are no private French ABA therapist in Sudbury, so all francophone families have no options to pay out of pocket for their child’s private treatment. Francophone families like ours are forced to wait on a list for services through CCR.
We know early intervention is important but children can still benefit with treatments like ABA at any age. Once ASD children grow and develop those skills they need, with help from ABA, they can then start to slowly and safely be transitioned into the school system with their piers and the proper supports put in place by Individual Education Plans (IEP) and EA’s. When children leave the OAP program to go to school, this makes room for the next child on the waitlist to get ABA therapy. Funding for the OAP should be based on needs and never on age. Valérie will be 4.5 years old when Ford’s OAP funding becomes available to families. We won’t get enough to give her intensive therapy she needs. Chance are she still won’t be able to use a toilet at that age or feed herself or get dressed in the morning.
With Ford’s Children Community and Social Services Minister Lisa MacLeod’s changes to the OAP, my daughter Valérie will never reach her full potential since the clinically intensive ABA therapy hours she requires will not be adequately covered by the Ontario PC government and our one income family of four can NOT afford to pay for supplemental ABA hours. Valérie’s father, Robert Prevost, works many overtime hours just so we could save up and buy our first home and get married. We were able to purchase our first home in October 2018 and now we are worried that we may have to choose between being very financially stressed by using up all our credit and possibly selling our home or watching our daughter regress and fall even further behind developmentally and socially without a voice of her own. It’s a lose - lose situation. Robert and I feel hopeless now more than ever and my mental health is getting worse day by day with no end in sight.
How can a government discriminate and base funding for developmentally necessary treatment based on a child’s diagnosis, age and income.
It’s a proven fact that ABA therapy can help many different children with different developmental and neurological disorders like Valérie’s big sister Émilie and her ADHD/ODD or a person struggling with Cerebral Palsy just to name a few. So why aren’t ALL people with developmental and neurological disorders eligible for ABA funding?
Having funding caps based on age is wrong on so many levels. As per my earlier quote from Autism Speaks, all children from toddler age all the way up until adulthood can befit from ABA treatment. Yes, early intervention is important and beneficial but ABA therapy is also proven to help significantly with teenagers going through puberty and struggling with social relationships in high school. Valérie will need ABA therapy all throughout her life, that’s why funding has to be based on needs and not a birth date.
Family income based funding is cruel to say the least. It’s fantastic to want to help those on the lower income scale but it’s devastating to everyone when the maximum funding isn’t even enough to begin with and it gets cut even more. My daughter needs this treatment to live a better life yet it’s completely unaffordable for us and most other autism families all over Ontario.
The new changes to the OAP by the Ford government are disastrous. Ford’s Minister Lisa MacLeod has to stop and go back to the table with parents and professionals. She really needs to listen to our stories and ideas to better improve the autism program so that all children with developmental/neurological disorders and can get the treatment they require based on their individual needs has recommended by professionals. If we, has a society, don’t take care of our most vulnerable children now, we will be passing the bill off to our future generations who will pay more in taxes to provide ODSP supplements to those now grown adults still living with severe autism and unable to care for themselves.
Our children with autism and developmental/neurological disorders deserve to get the same opportunities to learn and grow regardless of their diagnosis, age or parents income.
Thank you for listening to our concerns,
& Robert Prevost