Thursday, July 30, 2009

Liberal Premier Dalton McGuinty's Autism Therapy Wait Lists Harm Ontario's Autistic Children

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 sharon@autismresolutionontario.com



Bookmark and Share

6 comments:

farmwifetwo said...

Sorry.. the taxpayer got what he wanted... the list now never ends. That's what he promised 5yrs ago.. that's what the voter got. So all those kids after the age of 6 a few years ago went back on it AND they went in in order and not only that you have to wait for your turn to come up to see if you qualify or not... severe kids only... there is no priority for small children... All those "non-children"....

And.. they also got what he promised too ABA in schools - PPM 140.

You get what you ask for.....

Come fall, I'm sending out my "epic" once more to the Province this time...

I did notice that you didn't give the # of children receiving ABA therapy when McGuinty went in vs today...... Gotta make it sound good... Gotta play the sympathy card.

Not only that... you didn't list how many are on that list that can learn in regular settings, with 1:1 service, nor how many are getting speech and OT while they wait so therefore there was no reason for their parents to pay IBI out of pocket....

etc etc.

farmwifetwo said...

P.s.

Still waiting for the peer reviewed journal article to prove it works.

Sandy said...

Harold, I wrote about this a couple of weeks ago. The numbers and sources are in this post about the Ontario waiting list being years long.

http://www.sandracruxblog.com/2009/07/06/ontario-waiting-list-for-autism-therapy-yrs-long/

I may repost on it tomorrow given what you have written.

Sandy said...

I decided to publish the update now and changed the title slightly from "years long" to "shameful."

http://www.sandracruxblog.com/2009/07/30/ontario-waiting-list-for-autism-therapy-yrs-long/

Autism Reality NB said...

farmwifetwo

I believe Sandy at Crux of the Matter has provided the information your seek:

http://www.sandracruxblog.com/2009/07/30/ontario-waiting-list-for-autism-therapy-yrs-long/

Suzanne said...

Why don't we just set up a foundation to give people grants to fund this?

Waiting on the government to help...bah.