Wednesday, 25 March 2009 00:00

I am the single mother of 3-year-old Jaiden, a curious, joyful and energetic little boy who has autism. Jaiden has challenges with communicating, socializing and playing appropriately. My son has been waiting for government-subsidized ABA therapy since September of 2007, and we face at least another year or two of waiting. However, the time in my son’s life that he could make the most progress with early intensive ABA is right now. In order to help my son achieve maximum progress through early intervention, I am paying for as much of it as I can myself. In 2009, my son’s private ABA will cost $30,000, and that number will probably rise to about $50,000 next year. The only way I have been able to afford this huge cost, so far anyway, is by moving in with my parents.

Because of ABA, my son is making amazing developmental gains in communication and socialization. I think my son will continue to progress, but only for as long as I can afford private ABA; eventually, I will not be able to afford as much intervention as he needs. At this rate, with both the wait for provincially subsidized ABA and the number of people on the waitlist continuing to grow, I’m not certain my son will receive access to this vital life-enhancing therapy when it can make the most difference.

Denying my son timely and sufficient access to ABA, the only scientifically proven autism intervention with decades of science behind it, is a violation of my son’s civil rights and constitutional rights. I am stunned and deeply disappointed by the government’s neglect of and discrimination against children with autism, some of the most vulnerable members of our society. The government must provide our children with appropriate access to this essential intervention, as my son and other children with autism have as much right as anyone else to achieve their full potential.

 

Update: In January 2010, after 26 months on the waitlist, Jaiden was finally accepted into the Ontario IBI program.

Thursday, 26 March 2009 00:00

Sebastian was born in April 2003. He was diagnosed with autism in March 2005. Privately funded therapy started in July at 20 hours a week. The cost of therapy was too high for me, a single mother with little assets, so therapy was reduced to 10 hours a week; these hours could only be continued thanks to private sponsors. Government funding started in February 2007. The government decided to terminate Sebastian’s therapy after a September 2008 public assessment, in which they said that after 18 months, Sebastian improved by 89%, in spite of his severe autism. He is now learning to communicate using pictures.

Thursday, 26 March 2009 00:00

Jerry was born on Sept. 11, 2000. He was diagnosed with autism at age 30 months, after being on the wait list for a diagnosis for six months. We then went on the waitlist for government-funded IBI. As parents, we put everything we had into IBI therapy at thirty hours per week. Many of our family members gave us additional money to cover the $60,000 yearly cost of therapy.

 

After 30 months on the government wait list and $150,000 later, Jerry finally got his funding, but only enough to cover about 60% of the cost. For the next two years, we paid out of pocket an additional $48,000.

 

Once Jerry was old enough to attend public school, we held him back a year to give him more IBI therapy to allow him to better fit in at school, as well as to make sure there were adequate programs in the York Region District School Board. Once at school, we actually had his therapist working at the school with the teacher and EAs. This greatly assisted Jerry in minimizing his unwanted behaviours while reinforcing his good behaviours.

 

But last April, the school board put to an end his therapist helping him, and gave us a choice of him attending school or getting IBI. Jerry learns tremendously with IBI as his teaching method, so we choose IBI with reduced attendance at school. The Minister of Education told us that IBI is allowed in school if it’s in a community class. To this day, we do not have any reasons why he cannot have the two methods of learning done at his school. Politics at the Ministry and the YRDSB are simply getting in the way of Jerry achieving his best!

Tuesday, 28 April 2009 00:00

Our precious six-year-old-son, Mendy, is diagnosed with Autism. He is mostly non-verbal and a highly sensory seeking child. He can have unpredictable outbursts, spends much time jumping on his trampoline, and has times where he can scream for hours.

At two-and-a-half years old he regressed, and we were financially unable to provide him with the intensive ABA therapy that he so badly needed in order to function. We have been on a Kinark provincial ABA waiting list for over 3 years, while our son seems to regress further every year without this therapy.

We are always in debt, trying to provide at least a few hours here and there of ABA therapy, although it is clear that if he was given the hours he needs, he would make huge gains. His early years have almost gone, and we are devastated that our provincial government continues to ignore our precious children.

Wednesday, 29 April 2009 00:00

Barry II was diagnosed with PDD-NOS Autism just before his third birthday. On April 11, 2009, we went past our two-year anniversary on the IBI wait list.

Barry’s mom quit her job to be Barry’s lead therapist/program director/administrator, and every asset we have has been liquidated to pay for therapy, the annual cost of which is $50,000. In the two years that Barry has been receiving therapy (entirely self-funded), he has grown from a child who was disconnected from reality, to one who can now express his wants verbally and has the independence for self-care (dressing, feeding and toileting). Barry’s gains would not have occurred without therapy.

Our family was featured on W5 last year, and our story can be seen via the following link: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20080509/WFIVE_on_brink_080510/20080510?hub=WFive

The “funniest” experience so far on the waitlist (for us) has been the conclusion statement of the letter we received confirming Barry’s eligibility for funded therapy: “Beginning therapy as soon as possible and as early as possible is critical for the best success. Please be advised that the wait time for receiving therapy is 24 to 36 months.”

Barry was finally accepted into the government's IBI program in the summer of 2009, after 28 months of waiting.

Friday, 08 May 2009 00:00

Our son, Adam, was born August 12, 2002. When he was about three-and-a-half years old, he had his first eligibility assessment for the Ministry of Child and Youth Services’ Autism Intervention Program. After being told he wasn’t eligible, we requested an appeal, which was completed, and the decision wasn’t overturned. After significant pressure, a second assessment was granted when Adam was 5, and once again, eligibility wasn’ft granted. The assessment team didn’t feel IBI was the most appropriate intervention strategy. When we provided published data to show all ASD children benefit from ABA/IBI, and made a request for a trial, we were once again turned away.

It was suggested Adam would be best served by his school, and an ABA program developed and managed as part of his IEP by the school and school board. Our position is that the MCYS and the Ministry of Education have obligations to meet Adam’s needs, and neither ministry has been meeting their commitments.

The MCYS is unable to provide adequate funding for all children in need. It is managing this gap by extending wait times and, recently, not granting eligibility in the first place. The MOE is not holding school boards accountable to the Education Act’s requirements to meet the needs of Exceptional Students like Adam.

The evidence showing ABA/IBI as the best available intervention for ASD children is indisputable. The Ontario government regularly says funding is in place for programs to ensure children receive this treatment; it’s time to educate the public about the gap between these statements, and the reality our children experience every day. This gap is unacceptably large, and action needs to be taken to make our elected government officials accountable.