May 11, 2016 · 0 Comments
By Angela Gismondi
Schomberg parents are fighting to get their autistic son the treatment he needs to improve his quality of life.
David and Lisa Lehtinen recently learned their six-and-a-half-year-old son will not be getting the intensive therapy he has been waiting years to receive. The Lehtinens, along with hundreds of families across Ontario with autistic children over the age of five, recently learned their children will be deemed too old to benefit from government funded Intensive Behavioral Intervention (IBI) therapy and denied the crucial service.
As part of the 2016 budget, the provincial government announced it will be investing $333 million into the Ontario’s Autism Program over the next five years to provide more effective services. Over the past five years, the government has invested $928.4 million, which indicates a decrease in funding. Under the new program, the government announced that children five years and older are being from eliminated from eligibility for IBI therapy based on “expert suggestions” that optimum learning occurs between the ages of two and four, and older children are less likely to benefit from the program.
Hundreds affected by the changes gathered to protest at Queen’s Park last Thursday.
“I was really encouraged, along with the other parents, about the strong show of union and support by those who attended the protest to denounce Kathleen Wynne’s discriminatory plan for special needs children,” said David.
Lucas has been on the waiting list for IBI therapy ever since he was diagnosed two and a half years ago. The Lehtinens recently got a call from the Ontario Autism Program, notifying them that their son would be eligible for treatment in the next few months.
“We were so excited when we got the news,” said Lisa. “We have been waiting so long for this therapy that he needs. We have been paying for our own ABA (Applied Behavior Analysis) therapy but it’s not as intensive and not as many hours. That’s what our child needs for it to click in. He needs the intensive treatment that IBI provides … its life-changing therapy that will help him fulfill his potential.”
They were devastated when they heard about the Liberal’s provincial budget a few weeks after receiving the call. Currently, Lucas receives six hours of therapy a week. What he needs is 20 hours a week, which is what IBI therapy provides.
“We have lost a lot of sleep over this,” David explained. “We were in shock. It was even more devastating than we got the initial (autism) diagnosis. The hope we had for so long had been taken away. He is full of unlocked potential. With IBI therapy he could be far more advanced than where he is right now. These children are being denied a better potential and self-sustainability.”
The Lehtinen’s argue there is no evidence to justify the claim that older children are unable to benefit from IBI.
“IBI therapy will give him the skills he needs to become more independent, more self-sufficient,” added David. “We’re not expecting miracles. We know our son has autism and that’s going to be a life-long struggle for him.”
“We want the therapy we were promised without arbitrary age cut offs,” Lisa added
IBI therapy costs roughly $50,000 per year. For the many children who are now being taken off the wait lists or phased out of programs, the service will be replaced by a one-time funding of $8,000 per child, which is equivalent to roughly two months of IBI therapy.
“We were promised a year-and-a-half of therapy, now it’s questionable whether or not we will get a month-and-a-half of funding,” said Lisa, adding in some cases, IBI kick starts a child’s skills and abilities and allows them to attend regular school.
“If we knew this was going to happen we would have planned differently,” stated Lisa, adding a direct funding model in Ontario would be more effective. “There is money in the system but it’s not being used in the most effective way. It should be deployed in a reasonable and effective manner. In a wealthy country, he (our son) has a service that is working against him.”
The new program aims to reduce wait times for diagnosis from two to four to six months and provide earlier intervention to those in need. However, setting an arbitrary cut off at age five – despite the evidence that the average diagnosis age is four – will ultimately see the majority of kids age out of the program before they begin.
“Autistic children don’t learn the same way as other children, they learn through the repetition that IBI provides,” explained Lisa. “All children deserve an education and we believe our child deserves one too.”
The family has signs around their home stating “Every child deserves a chance” and “Autism doesn’t end at five.” They will continue to provide a voice for their son and be life-long advocates for all children with autism.
For more information or to sign the petition, check out the Alliance Against the Ontario Autism Program website at www.allianceagainstoap.wordpress.com or visit their Facebook Page.