Over 200 parents came together at Queen's Park in Ontario, Canada this week to express their anger over a recent decision by the government to remove intensive therapies funding for autistic children age five and older using the rationale that those children are too old.
Parent Heather Bourdon requested that the provincial Liberals "stop using our children like pawns in a political game" at a news conference at the legislature. Bourdon's son Jacob will turn five in just two weeks, meaning he will no longer qualify to receive intensive therapy.
The Ontario Autism Program was announced by the Liberal government only last week, with $333 million in funding. The program makes changes to a number of areas, including limiting Intensive Behavioral Intervention, IBI, for children between the ages of two and four. Families with children age five or older will be removed from the waiting list and will receive $8,000 to help pay for treatment instead, reports Errol Nazareth for CBC News.
The children are being removed from the list because clinical evidence shows that treatment is most effective in children of a young age, according to Peter Spadoni, with the Ministry of Children and Youth Services.
However, many parents argue that the treatment costs much more than the amount they are being given. Bourdon said her son's therapy costs $5,000 per month. She broke down as she told the room exactly what her family has had to go through to ensure that her son did not have to sit on the waiting list.
"We sold one of our cars, some of our furniture, used all our savings, liquidated the equity in our home, and moved our family of five into a one-bedroom apartment," Bourdon said, her voice breaking.
She went on to suggest that Premier Kathleen Wynne and Children and Youth Services Minister Tracy MacCharles had not had to give up "their possessions to uphold the dignity of their child."
Applied Behaviour Analysis (ABA) and IBI are currently the only known evidence-based practices effective at the treatment of Autism Spectrum Disorder, or ASD.
"The government is abandoning kids with ASD over the age of five, kids who've waited years and years for access and will never have that access," said Monique Taylor, the NDP's Children and Youth Services critic. "It's heartbreaking and devastating. This is about a government trying to save a buck by not providing life-changing treatments to kids with ASD and that's appalling."
However, Minister Tracy MacCharles called the decision a "historic investment." According to MacCharles, children will be immediately removed from the waiting list under the new program. At that point they will be moved to a new, enhanced ABA program that will be both longer and more intense, based on clinical assessments.
In addition, more funding will be invested into the program over the next five years.
He added that the decision was made in an effort to move away from creating IBI or ABA distinctions in order to ensure that each child is receiving the right treatment at the right time.
While Premier Kathleen Wynne did admit that it is unacceptable for children to be on the waiting list for as long as three years, she added that the new program will open treatment opportunities for 16,000 additional children, "and it will provide a continuum of intensive services."