I try to keep this blog site focused on autism and I try to keep it non-partisan despite being a life long Liberal. (With Prime Minister Stephen Harper washing his hands of Canada's autism crisis it is hard to present non-partisan commentary about federal autism initiatives. or lack thereof). In recent elections, provincially and federally, I have shifted toward a strategic voting mind set voting for the candidate, and the party, that is most likely to represent hope for autistic children and adults. As someone who has been a Liberal though I am seriously disappointed by the autism record of the Ontario Liberal government of Dalton McGuinty.
I am proud of New Brunswick's political leaders, both Conservative and Liberal, for what they have done on behalf of autistic children although much remains to be done. Both Conservative and Liberal governments in New Brunwick have failed to date to address the crisis in adult autism residential care and treatment.
One of the best things that happened to my autistic son Conor, was moving from the Toronto (Burlington) area back to New Brunswick in 1997, the year before he received his autism spectrum disorder diagnosis at age 2. At that time there was little in the way of autism services available here in New Brunswick. Determined and focused parent advocacy, access to amazing, community involved academic and professional help and conscientious, responsive political leaders from both Conservative and Liberal parties, have resulted in an autism service delivery model for autistic children in this relatively poor province that has earned national and international recognition. Such sweeping change for the good of autistic children has not taken place in the much larger, and wealthier, province of Ontario. Had we stayed in Ontario in 1997 Conor would not have enjoyed the autism services he has received here in NB. Liberal Premier Dalton McGuinty may be many good things but he has not been a friend of autistic children in Ontario.
Attached hereto is a news release from Autism Resolution Ontario which speaks to the situation confronting autistic children in Dalton McGuinty's Ontario:
TORONTO, July 29 /CNW/ - 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 now be seen on the News section of the ARO site ( www.autismresolutionontario.com ) or 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 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 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 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."
For further information: To learn more, or to book an interview with Sharon Aschaiek or other ARO family members, contact Sharon Aschaiek at (416) 352-8813 or firstname.lastname@example.org
Im not sure how relevant this is for this site given I am in Northern VA, but I find it interesting as a newly joined group of independent providers, available to provide services to families on these extensive waiting lists, that there isn't a place to reach out to these families, and how often contacting agencies that we are aware have extensive waitlists results in nothing. My natural feeling would be that agencies would be pleased that these families that are waiting could finally get quality services and constantanly be seeking other agencies to refer families to, this has not been the result and it is quite disheartening. We have several staff available, and if a parent calls me and I feel another agency may be in better proximity for them, or provide some services (like social groups) that we have not yet started I immediately recommend the other options, even if we would love to work with the families, there has to be a better way to come together as a community of providers that work together to help these families rather then keeping them on the wait lists for a benefit I can not even identify...