Before the ‘Pay Now or Pay Later’ Report … There was the Auton Trial
Last month I wrote a piece about some of the history surrounding Canada’s previous attempts at a National Autism Strategy. I started that story in 2006, just before Senator Munson’s often-cited Senate report ‘Pay Now or Pay Later: Autism Families in Crisis.”
It was only after I wrote the piece that I became aware of some pretty important history that happened just years before that.
For those of you who have been around autism for a long time, you may already know what happened, but for people like me, newer to the advocacy scene and learning as you go, I want to take you through it.
There are 2 important videos on the landing page of the link I shared above:
- A 42 minute documentary film from 2011 about the fight to get healthcare for children with autism in Canada. It was the winner of the 2013 Award of Excellence at the Canada International Film Festival.
- An extended 40 minute interview with Jean Lewis, the co-founder of Medicare for Autism Now, where she details more of the litigation history.
Both videos are well worth the watch if you can make the time.
Some history from BC:
When her son was diagnosed with autism in the late 1990s, Jean Lewis was told of an effective therapy (ABA) that could help her son. ABA is expensive, and the BC government did not fund this kind of therapy at the time, nor was it readily available. She describes autism therapy then as a “novel concept,” with the focus of government funding being solely on things like respite or child care.
Lewis became aware of an organization called FEAT BC (Families for Early Autism Treatment), founded in 1996 by Dr. Sabrina Freeman, dedicated to the goal of getting effective treatment like ABA covered by Medicare, and to make it more universally accessible in Canada.
She joined together with several other BC families to bring up a US-based behavioural consultant to design and oversee their children’s treatment program, and recruited colleges and universities to train students in ABA protocol so that therapy like this could be more available in the province.
The families then started to lobby their MLAs, showing them evidence of ABA effectiveness. They collected petitions, including one signed by a group of 63 psychiatrists, stating that ABA should be funded by the BC government (NDP, at that time) based on the data. Nothing came of their lobbying, so they were driven to the courts next.
A group of 30 parents banded together, lead by FEAT BC, to take on the BC government, arguing that not funding the recommended ABA therapy was unjustifiably discriminating against their children. The provincial government argued they were only obliged to fund “core” services provided by doctors and hospitals, as required by the Canada Health Act. Funding for non-core medical services was at the discretion of the provincial government, with no legal requirement to fully or partially fund the treatment.
Their Cause of Action was that by denying funding for ABA, Section 15.1 (Equal access to healthcare) of the Charter was breached.
For a detailed description of the legal events, here’s a good resource from the Ontario Justice Education Network:
Here’s a quicker recap of the Auton vs BC trial events.
- In July 2000, in a BC court, Justice Allan found in favour of the families
- In her judgement, the judge confirmed the Charter Rights had been breached
- The judge ordered the BC provincial government to fund treatment, also stating that failing to do so would breach the Charter
- The BC NDP government appealed the decision in the BC Court of Appeal, with the case heard by 3 judges in 2012
- This appeal failed, and the judgement was upheld. The Appeal court did modify the initial judge’s ruling to state that only the children involved with the case were entitled to government funding for ABA. Families not directly involved in the petition would have to sue to get similar funding
The Liberals had taken power in BC in 2001, so after the initial appeal from the NDP failed, the new Liberal government appealed the case to the Supreme Court of Canada, the highest court, where no further appeal could be made.
- The case was heard in 2004, and the Supreme Court of Canada unanimously held that the denial of funding for such a treatment did not infringe the children’s equality rights. The court, under Chief Justice Beverley McLachlin, ruled that the the Canada Health Act only guarantees funding for core services, of which the particular autism treatment was not one.
Here’s a CBC article posted just after the ruling that reviews some of those events:
In contrast to that, in 2004/05 there were several smaller cases brought to the courts of Ontario.
Here’s some background info on one of those cases:
After being cut off from government-funded therapy at age 6, the families took their case to court.
In the judge’s ruling on this case he stated:
Without IBI, Zachary and Travis were virtually out of control. The public school had neither the resources nor the training to allow Zachary and Travis to learn in the school environment. With IBI, the children are able to learn. Continuation of the boys’ IBI/ABA treatment is essential for their continued success – in their family, their school and in their community. At this time, the public and separate school systems are either unable or unwilling to provide the required level of support for children with autism.”
The judge ordered the province to fund therapy for those children involved.
There are a large number of court cases surrounding autism, including many in Canada. If you want to read more about those, you can find them here:
Common theme: The debate is usually not surrounding the effectiveness of therapy, but rather the government’s willingness to pay for it.
Over the last 20 years there have been some wins, but there have been some unfortunate losses.
This fight has been going on for far too long, and will likely continue until we see real change from the Federal Government.
Pay Now or Pay Later.
The right therapy at a young age can make a huge impact in the lives of autistic children, and ultimately save the government a great deal of money. Early intervention can reduce long-term care costs for these individuals when they become autistic adults, who may need continued high level support.
20 years ago Auton and other parents began a journey to try and urge the government to get evidence-based ABA therapy covered under Medicare so that all autistic Canadian children could have equal opportunity for support.
It’s time for the Federal Government to finish the job.
