It may be no huge surprise to families in Canada affected by autism that this “niche issue” has rarely been on the lips of any of our politicians leading up to the federal election. But it should be a surprise, since autism affects as many as 1 in 94 children age six to nine years (current Canadian data) or the more commonly cited 1 in 68 kids (according to more comprehensive U.S. data).
Such wide prevalence means there aren’t too many communities across the country that don’t know someone – in their class, their extended families, their workplaces and neighbourhoods – who is affected by this neurodevelopmental disability which has wide-ranging severity and can affect verbal and social communication, motor skills and present behavioral challenges.
In fact, according to science journalist, Steve Silberman, autism is now one of the largest special interest groups in the world. We have clout, in other words. Unfortunately, we rarely come together to flex our collective political potential.
Part of the reason may be there is no shortage of debate within our autism communities on where valuable public resources for autism services should be spent or who should be delivering these services, where, when and for how long. But there’s certainly something almost all autism families can agree on, and which a recent needs assessment survey of autism caretakers and professionals across the country found: Canadian autism families are struggling to get the critical services they need but can’t afford.
So what do our federal political parties promise to do? Below is a summary of publicly available party platforms and promises
We’ve had three terms and more than nine year to witness the Harper Conservatives cede leadership for health and educational issues to provincial and territorial bodies. They have repeatedly refused to heed calls from various organizations for a national autism strategy.
However, before the election was called they did appoint a new “Autism Spectrum Disorder Working Group” with a two million dollar budget to develop a plan for a “Canadian Autism Partnership” to address autism research, information sharing, early detection, diagnosis and treatment.
For several years now, they’ve also made available a Registered Disability Savings Plan (RDSP) – a legacy of the late Finance Minister Jim Flaherty. The RDSP is a savings plan that helps caretakers of those with a disability save for their future, with some matching grants and direct government contributions for those in certain income levels. It’s a terrific plan and if you don’t have one, you should get one, but it’s cumbersome to set up, complex to understand and the uptake has been less than 15 percent of eligible Canadians thus far. If re-elected the Conservatives promise to streamline the process and increase of the maximum annual Canada Disability Savings Grant for low- and middle-class families from $3,500 to $4,000/year.
The Conservatives have also supported autism research with approximately $39 million investments through the Canadian Institutes of Health Research (CIHR) and the creation of Chair in Autism Spectrum Disorder Treatment and Care Research. They have also recently set up a National Autism Surveillance System via the Public Health Agency of Canada (PHAC) to track estimates of those living with ASD so we’ll no longer have to rely on U.S. statistics.
According to a letter sent to the Canadian Autism Spectrum Disorders Alliance (CASDA), the Liberal party will fully implement the UN Convention on the Rights of Persons with Disabilities and in their platform, have made a commitment to pass a National Disabilities Act. Canada is an outlier among developed countries for not having a Disabilities Act, so this would be an important step forward.
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The Liberals have also consistently supported the creation of a national autism strategy. I couldn’t find any mention of this in their raft of policy documents, but party headquarters confirmed this commitment with me in an email. They also voted in favour of a resolution to establish a national autism strategy at the last Liberal party convention.
The Liberal handbook also commits to dramatically increasing the number of disabled youth who receive help to transition to the workforce. Generally, the Liberals have also promised to make homecare, prescription drugs and mental health care more accessible.
In the past, Liberal Senators were instrumental in spearheading a comprehensive cross-party Senate report on autism, Pay Now or Pay Later: Autism Families in Crisis (2007). Liberal Senator Jim Munson also introduced a successful private member’s bill in 2012 that was passed with cross-party support to institute World Autism Awareness Day annually on Parliament Hill.
New Democratic Party
Similarly, in a letter to CASDA, the NDP has committed to implementing the UN Convention on the Rights of Persons With Disabilities. They also commit to establishing a Canadians With Disabilities Act to promote “accessibility, effective participation and equality of opportunity for persons living with disability.”
The NDP has also publicly supported and highlighted the need for an effective national autism strategy, and are committed “to put a national autism strategy in place as quickly as possible.” They pledge to work cooperatively with CASDA and other non-profits and agencies working on autism to that end.
Generally, the NDP have pledged a national pharmacare program to make prescription drugs accessible and have also committed to improved homecare and mental health care services.
Of course, when it comes time to vote, autism families, like most Canadians, will select their candidate based on a number of issues, not just those that affect us personally. But it is worthwhile making an informed decision before you vote – and that includes knowing where the candidates stand on autism.
It’s time autism families in Canada flexed our political muscle.
Kathleen O’Grady is a Research Associate with the Simone de Beauvoir Institute, Concordia University. She is the mother of two young sons, one with autism.
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