Dear Hon. Minister MacLeod:
Children with autism and their families need to know the Ontario government is here for them. The new Ontario Autism Plan has people doubting whether this government truly cares about the well-being of children with autism.
I know this is an emotional issue. I’m writing in the spirit of working together to find solutions for children with autism and their families.
But Minister, in order to do this you need to be honest with parents about funding amounts for autism and answer their concerns about alleged political interference with the waitlist.
Yes, you inherited a flawed plan that left too many children without access to much needed autism services. And yes, I respect that you and your parliamentary assistant, Amy Fee, have been autism advocates in the past. But this does not change the fact that the government has produced a deeply flawed plan that does not work for children and their families.
The outcry over the past few weeks from the autism community makes it clear this plan is a step backwards, not forwards. Under the pretense of being fair and equal, you have imposed caps, clawbacks and thresholds that restrict access to vital services. These new rules are not evidence-based and they will harm families in high need situations.
I’ve carefully listened to parents, families, advocates, doctors, therapists, service providers and other experts who have flooded my office to express their dissatisfaction with the new plan. I strongly encourage you to work with them to design a revised plan that is evidence-based and that addresses all waitlists without creating new ones.
It does children and families no good to clear one waitlist only to create another one for access to services that many families will not be able to afford.
What I have heard is that a one-size-fits-all approach does not work. It hurts children who need intensive care, families with multiple children, and other complex situations that drive therapy costs far beyond the government’s $140,000 lifetime cap. Clawing back funding from households of minimum wage earners is also deeply unfair, as is age-based funding that ignores the fact that children are on a spectrum, regardless of age.
Quite simply, funding must be based on the highly variable needs of children with autism, not based on arbitrary caps and thresholds that make it more convenient for government. Funding should not be based on age or income.
Your plan also offers no long-term solution for increasing access to therapeutic services. Clearing the diagnostic waitlist is important, but if new funding is not made available for treatment, then the government is simply shuffling the deck chairs.
We cannot pretend that giving families a tiny fraction of the funding needed to afford treatment is in any way a solution. Equal funding amounts does not provide an equitable solution, especially for those with high needs.
And while many parents support the direct funding approach, you must continue to assist those who cannot or choose not to navigate the system of private providers on their own with public funding for direct service providers.
Many parents and educators are also concerned about the lack of support for children with autism in schools, especially because your plan results in more students without adequate services in our schools.
The status quo leaves schools and educators without the tools to support children with autism. Providing ABA in schools will help students, teachers and schools manage the integration of students with autism into the classroom. And more education assistants will help teachers meet the needs of all students in their classrooms.
Many parents are also concerned about supports for their adult children with autism. Autism does not end at 18, and many parents are concerned about whether their adult children will receive supports. Early intervention must be a priority, but we must also ensure that the government’s autism plan provides support for adults with autism and developmental disabilities.
The current waitlist for Passport programs means that some people age out on their 18th birthday with no support for either themselves or their family for months. The waitlists must be dealt with, or a transition method must be put in place, like what is proposed in Bill 64, Noah and Gregory’s Law, currently before the House.
Minister MacLeod, I urge you to listen to parents and experts. I hope we can all put aside the partisan finger-pointing that has come to dominate this discussion. At the end of the day, the goal should be to clear the waitlist in a way that truly helps children with autism, not to continue defending a deeply flawed plan.
Please revise your plan to address these concerns. Specifically, a revised plan should accomplish the following:
Invest funds in evidence based autism therapy;
Give funding to children and their families based on need, without caps based on age or income;
Provide a balance of direct funding and direct service to families;
Support schools and classrooms to provide autism services; and
Provide people-centred support for adults with autism and developmental disabilities
Thank you for considering these changes and for acting in the best interests of children with autism across Ontario.