In the last decade, Canadians have witnessed a litany of medical breakthroughs; virtual reality for surgeons, the introduction of online and telehealth services, wearable technologies, artificial pancreas to treat Type 1 diabetes, 3D-printed prosthetics and the introduction of effective vaccines for COVID. Exceptional accomplishments that have dramatically shifted both access to healthcare and quality of life. While we join in celebrating these life-changing advances, it does beg the question on how we are able to accomplish such significant feats, yet after 14 years of talking about Autistic people in crisis in Canada, and the need for a National Autism Strategy, one still has not been produced.
It may be understandable then, to appreciate why our team at the Canadian Autism Spectrum Disorder Alliance (CASDA), along with our members, are comparing yet another federal election to what feels like Groundhog Day.
Once again, we will ask each of the major federal parties to commit to a National Autism Strategy. Once again, they will agree to develop and execute such a Strategy, if elected to government. Once again, best efforts and well meaning intentions will be diverted to dwell in political purgatory. Rinse and repeat.
With the experience of a global pandemic highlighting the major gaps in supports for Autistic people in Canada, it is clear that a National Autism Strategy is needed now more than ever. Ironically, this statement is eerily reminiscent of the first formal call for a Strategy, “Pay Now, or Pay Later: Autism Families in Crisis,” tabled in 2007 by the Senate Committee on Social Affairs, Science and Technology.
In October 2020, after over a decade of advocacy efforts, the Canadian government finally announced their intentions to proceed with the development of a National Autism Strategy. Almost a year since, the process of building the Strategy has focused on more consultations.
If it seems like we are not overly optimistic about more consultation, you would be correct. There has been no shortage of consultation over the last 14 years since that Senate report. What has consistently been missing, is strong federal leadership and a demonstrated commitment to bring provinces and territories together to develop a cohesive approach to effectively support Autistic people living in Canada, no matter their postal code.
The drive and momentum for change is coming from the community itself, but we cannot do it alone.
While we are encouraged by the discussions around reviewing the disability tax credit and further investment into our Ready, Willing and Able inclusive employment program, it is not enough. We need federal oversight in addressing areas in which provincial and territorial governments are struggling, such as; early supports and services, inclusive education delivery, transition to employment, supportive housing, mental health programming, and recognition of the unique needs of marginalized communities.
Right now, Canadian provinces and territories are operating in silos, with very little consistency on programs and supports offered. This results in inequitable access to critical services and supports for Autistic children and adults between regions, provinces and territories and has a significant impact on families. Living in one province may mean access to faster diagnostic services and evidence-based programs and living in another province may mean paying high out of pocket costs to private service providers. This results in Canadians moving across the country to access a program or evidence-informed support that they believe will best help their child.
A Strategy would offer our provincial and territorial leaders with a much-needed reprieve; providing a pan-Canadian streamlined approach that relies on evidence informed decision-making and knowledge exchange and dissemination, making sure that Autistic people living in Canada have full and equitable access to the resources they need across the lifespan, when and where they need them.
Clearly, each of the major political parties agree—because come time for a federal election, they eagerly assure us that this time they mean it, they are not just saying it, they will really truly act on the call for a National Autism Strategy, and ensure it is delivered.
An Autistic child born in 2007, when the “Pay Now, or Pay Later” report was published, would now be 14 years old. Depending on where that child grew up, enrollment in early services, opportunities to be fully included in school and access to mental health support would all be dependent on where their family chose to raise them. Meaning, another child born with Autism in the same year in a different part of the country, could have been gifted with an entirely different reality.
This inequitable access to help cannot continue for more generations to come.
As we enter the closing weeks of this election cycle and see our community delivered another round of promises by politicians that we cannot be confident will be kept, we are reminded of an apt quote by Jim Rohn, author and motivational speaker, “Without a sense of urgency, desire loses its value.”