TORONTO – British Columbia mom Angie Robinson killed herself and 16-year-old Robbie, who suffered from autism, after her son became increasingly violent and Robinson was unable to access the support she felt she needed.
Respite care provided by the government hadn’t worked for their situation, so Robinson asked for a residential placement for Robbie. Family said she was told nothing was available.
In a portion of her final Facebook post, the Prince Rupert resident wrote:
“More, more, more needs to be done for our teens with special needs. They are neglected.”
Autism advocates say the tragic story is an example of how funding for autism and help for families is nowhere near what’s needed.
“The wealth of services that are available—including respite and behaviour consultation and intensive behaviour programs—there just isn’t enough funding to serve all of the kids as the incidence continues to grow,” said Toronto’s Geneva Centre for Autism CEO Debbie Irish.
She said funding doesn’t match the need now, and it won’t meet future needs, either.
“The numbers [of those diagnosed with autism] over the last three years have moved significantly from one in 100 down to one in 88 down to one in 68. There’s talk out there of one in 50,” said Irish. “So I don’t know that you can ever really be prepared for those kinds of numbers shifting as drastically as they are,” though she gave the government credit for “trying to make a dent.”
Wait times for various services vary: Intensive behaviour intervention can take years to access, said Irish, but occasional respite care typically won’t have a wait list—though it’s not always possible to access as much help as families need.
“If a parent required every weekend, that would be difficult to fulfill or if they needed every day after school, or every evening,” said Irish. “You would have to look at a variety of providers to kind of map it together, to fill those gaps.”
Residential placements—like the one that the Robinson family was not able to access—tend to be both short in supply and difficult to get into, said Irish, who noted a number of factors play into how people are prioritized.
“It could be the age of the caregivers, the health of caregivers, if the caregivers have passed away, those kinds of things would raise an individual’s priority…the risk of harm to other members in the family.”
But what Irish suggests is a range of service options; a collaborative approach with various providers to best cover a family’s needs.
“The reality is that all agencies are struggling with what they’re trying to serve themselves and the funding envelope that they have,” she said. “A plan that might look at: If this is the need here, somebody might give us staff for it, and somebody else might provide training around it or consultation around it, and somebody else might provide the bed, for instance, depending on what it is that we’re looking to resolve.”
And Irish isn’t the only one calling for a larger-scale strategy.
University of British Columbia professor Pat Mirenda recently called attention to the need for a national strategy with stable funding and provincially transferable treatment options.
“There is a move toward a national surveillance system that would give us Canadian numbers and allow tracking of prevalence. That would be useful to plan ahead,” she told Global News on Monday.
Autism Community Training executive director Deborah Pugh told Global News that Robinson’s situation doesn’t surprise her.
“When you reach out for help and there’s no prospect that it’s going to become available, when you’re given no encouragement…no it doesn’t surprise me and to be frank, all over the world this happens to our families. So it shouldn’t surprise us in the absence of services that it happened here,” said Pugh Thursday. “Here we are in 2014; we still don’t have a system.”
WATCH: Autism advocates Deborah Pugh and Faith Bodnar join Global BC’s Aaron McArthur to discuss what can be done to avoid a tragedy like Angie Robinson and her son Robbie.
Faith Bodnar, executive director at Inclusion BC, has been in touch with Robinson’s family, and highlights long wait lists as one area that could use help from increased funding.
“This family was told, ‘Well maybe at 19 [years old] we can count on some more services.’ Three years in such a desperate situation is not an acceptable wait time,” she said, referring to Robinson’s 16-year-old son. “So the fact that we are here talking about the lack of supports I think speaks to a lack of appropriate funding. …This is an investment we make in people, it’s our duty and responsibility to support the citizens of this province and all of them, including citizens with developmental disabilities and autism. It’s their right.”
Health Canada has acknowledged better information is needed to help Canadians address the health, social and other impacts of Autism Spectrum Disorder (ASD).
“The Public Health Agency of Canada is working with its partners in the provinces and territories to develop the infrastructure necessary for a national autism spectrum disorder surveillance system,” it said in a statement to Global News.
The government said the initiative will provide important data needed to improve policies and programs for those impacted by ASD; the first data findings are expected to made available in 2016.
The government said $33 million has been invested in ASD research since 2006.
With files from Amy Judd and Yuliya Talmazan
© Shaw Media, 2014