Wednesday, 29 July 2009 00:00
New documentary reveals full impact of autism therapy waitlist crisis
Film developed by Ontario families exposes harm caused by provincial government’s neglectful policies that force children to wait years for vital therapy
A new documentary on the challenges of one child with autism in trying to access publicly subsidized autism therapy effectively captures the Ontario government’s inadequate, harmful and discriminatory autism intervention policies, and raises fresh concerns about the ongoing and extreme neglect of all children with autism in Ontario waiting to receive this essential treatment.
Jaiden’s Story: The Struggle for ABA Therapy in Ontario is a brief and compelling portrait of three-year-old Jaiden, who has been waiting for provincially funded applied behaviour analysis (ABA) therapy since September of 2007, and whose family is trying to cope with the government’s abandonment of their son and with the high cost of private ABA therapy.
“Jaiden needs ABA therapy to learn how to communicate and socialize appropriately with others, and to function in society. By making my son wait for years for this crucial therapy, the government is neglecting his basic developmental needs, severely compromising his future prospects, and ultimately, violating his fundamental human rights,” says Sharon Aschaiek, mother of Jaiden.
ABA is the most established, scientifically proven and effective autism intervention that is widely used by children with autism worldwide. Children with autism benefit most from ABA when they receive it intensively—about 30 hours a week of one-on-one instruction—beginning in their early years.
As demonstrated in Jaiden’s Story, which can also be seen on YouTube (www.youtube.com/watch?v=IgLJrIJsOvs), while Jaiden languishes on the waitlist for the Ontario government’s intensive behavioural intervention (IBI) program—IBI is the early and intensive application of ABA—Aschaiek helps her son in the only way she can—by paying for private ABA therapy. However, early intensive ABA is costly: currently, Aschaiek spends about $20,000 a year, and that cost will increase as Jaiden gets older and is able to participate in more therapy.
As a single mother of limited means, Aschaiek was forced to move with her son into her parents’ home in Thornhill to save on cost-of-living expenses. She now spends almost every cent she makes on therapy for her son, but she says it’s entirely worth it, as Jaiden is making significant developmental gains with ABA. However, because the Ontario government will continue denying subsidized intervention to Jaiden for many more months or even years, Aschaiek worries about how she’ll pay for Jaiden’s future therapy.
“Even with the minimal amount of ABA therapy I can afford, Jaiden has advanced so much. Thanks to ABA, he can now express himself much better, and he’s more interested in family and friends,” Aschaiek says. “However, when Jaiden will require $30,000 to $50,000 worth of therapy a year, I won’t be able to afford it. Without receiving enough of the ABA therapy he needs to develop and function, Jaiden will be at serious risk of losing the skills he’s gained, and failing at school and in adulthood.”
Jaiden is far from alone in his lengthy wait for vital ABA treatment: currently, about 1,500 children with autism in Ontario are waiting to participate in the provincial government’s subsidized IBI program. Disturbingly, that’s more than the number of children actually receiving it—about 1,300. About another 400 children are actually waiting to wait—that is, they are waiting to qualify to get on the IBI program waitlist.
“The wait for my family has meant that my wife had to resign from her job, my mother exhausted her retirement savings, and we have exhausted all our savings and retirement funds—all to self-fund/deliver our son’s therapy,” says Mississauga-based Barry Hudson, father of Barry, 4. “So, not only does my son’s therapy still need funding, but I, my mother and my wife will require income supplements in our retirement. In summary: the ABA wait list crisis equals pay much more later.”
Aschaiek and Hudson are just a couple of the hundreds of highly motivated parents across the province who are involved Autism Resolution Ontario (ARO), a new grassroots, non-partisan advocacy initiative working to make publicly funded ABA therapy more accessible, and to achieve social justice for children with autism. ARO is leading an ongoing, high-impact, province-wide public awareness campaign to promote the benefits of ABA as the most proven and effective autism intervention; to expose the provincial government’s neglectful and discriminatory autism intervention policies; and to promote practical and cost-effective solutions—based on existing studies and reports—to resolving the autism crisis in Ontario.
Jaiden’s Story is the first documentary in what is planned to be a three-part series that will fully explore the most pressing ABA inaccessibility issues facing children with autism in Ontario and their families.
Aschaiek echoes Hudson’s sentiment that, ultimately, the
Ontario government’s denial of early intensive ABA to children with autism is a problem that affects everyone, because taxpayers will have to pay millions of dollars more down the road to sustain these individuals as adults.
“With sufficient ABA, our children have much better chances of becoming independent and contributing members of society,” Aschaiek says. “Without it, the government is condemning them to a lifetime of dysfunction and social services dependency.”