A Funded Ontario Autism Strategy
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Dear Premier Ford, Minister MacLeod and Member of Provincial Parliament Roberts,
We are writing on behalf of the over 24,000 families across Ontario that are in crisis having had one or more children diagnosed with autism. At a recent meeting in Ottawa, Jeremy Roberts, MPP, indicated that there may be some confusion as to what these families are looking for from their government. So let us clear the air.
If there is one thing we know about autism, it is this: early intervention is paramount for any chance at success. The earlier the diagnosis the better and the earlier appropriate therapy starts, the better the odds that a given child’s ability to learn and overcome behaviours improves exponentially.
For those families able to afford private care, it can range anywhere from $25,000/year to over $50,000/year. This means that the $100 million funding planned by the Conservative party over the duration of a mandate to augment the existing funding regime will ultimately assist 4,000 families for exactly one year, and more likely less than that. For those families that can get into private care, they are cutting out all non-essential costs, they are refinancing homes and going so deeply into debt that there is a real risk they may never financially recover. Others sell their homes. And still others without the means merely wait, desperate and in the dark.
A diagnosis of autism in a family can be likened to dropping a pebble in a pond (or more appropriately a boulder in the ocean) – the ripple effects continue to roll ever outward with a tsunami the possible outcome. Daycare providers often claim they cannot care for children with a diagnosis. Schools regularly exclude these children because they are deemed “unsafe.” Often the education system promises appropriate supports and then fails to deliver them so that these kids can access curriculum. It regularly falls to parents to home-school and care for their children at home. In these instances, one parent often stops working. The other parent may need to pickup a second job to make ends meet at home and make any kind of a meaningful contribution to therapy for the child in need. Divorce and separation rates between parents of children on the spectrum are significantly higher than the norm. We do not exaggerate when we say, this is a crisis.
Family and friends regularly have difficulty accepting a diagnosis and often ostracize and alienate their former friends and even family members because they don’t understand or are afraid for their own children or some combination of the two. Over time these children get older, and without help, 50% experience mental health challenges. 80% are unemployed. There are very real long term costs to the province to not investing early – significant success can be achieved when the investment is done up-front.
The Ontario Autism Program initially promised hope to families that had already been waiting a long time. But the restrictions placed on regional providers in delivering the program and managing the wait list for service have resulted in a broken system. In most cases, only behaviour therapies are covered. And while behaviour therapy is necessary, any parent with a child on the spectrum knows that regular consultations with Occupational Therapists and Speech and Language Pathologists are incredibly important to their children’s development. Furthermore, it is up to parents to sort out the logistics and negotiations associated with moving their children between home, daycare or school and therapy providers – almost always in the middle of the work day.
Furthermore, there is no third party oversight of private providers – some can claim to be working towards a BCBA but aren’t professionally licensed and prey upon the hope and need of those families that need it most. Many of the credible private providers have started their own waitlists for services (and in some cases these lists are closed to new families) because there are not enough therapists to respond to the sheer volume of families that need help. Even with an emergency funding influx, there needs to be a plan in place to train and clinically supervise enough therapists in every region of Ontario to deliver appropriate services.
The Senate of Canada published a report entitled “Autism Families in Crisis” in 2007 demanding a National Autism Strategy. With successive governments' inaction federally, it is time Ontario takes a leadership role in this province and addresses this need across ministries (Education, Health, Children and Community Social Services, and Training Colleges and Universities). The silos need to come down. Now.
The Ontario Conservative government has promised healthcare is a priority. Hallway medicine ends now. Well, many families with an autism diagnosis aren’t even in the hallway. As we head into the deepest, darkest winter months, many of these families are out in the cold. And it’s freezing.
Over 24,000 families province-wide implore this government to act and to act now. An additional 8,000 that are in-service implore the government to fix the currently broken system. Over 32,000 families in this province demand an appropriately funded provincial autism strategy.
We look forward to your response.
Frustrated, angry, and desperate families and their supporters of children that need your help in Ontario
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