Christina and Tim Heinrichs are looking at remortgaging their home to pay for an intensive, $3,700-a-month therapy for their autistic preschooler Myles, because early intervention is essential but government funding is lagging by at least a year.
Experts say Windsor is actually fortunate compared to elsewhere. The wait here for this widely lauded program called Intensive Behavioural Intervention — a year to a year-and-a-half — is better than anywhere else in the province. But they agree it’s still too long for parents of newly diagnosed kids who should be entered into IBI right away.
“He needs these programs,” Christina said of her two-and-a-half-year-old son. “They can help him respond to his name. I want him to be able to open up a book and point at a cow and say ‘Cow says moo.’ They can teach him that stuff, those basic things we take for granted.”
Myles had hit all the developmental milestones — sitting, crawling, walking at appropriate ages — but by 18 months he wasn’t talking except for a couple of words. The Kingsville couple sought help from local agencies whose experts noticed other red flags: he lined his toys up, didn’t make eye contact and didn’t respond to his name. Around his second birthday last fall Myles was diagnosed with moderate to severe autism, a serious neurological disorder that impairs how you communicate and relate to people and the world around you.
Though there’s no cure, “hundreds and hundreds of research studies” show that IBI is the most effective treatment for young children, said Marcia Gragg, an assistant psychology professor at the University of Windsor who studies autism and is clinical director of the Summit Centre for Preschool Children with Autism.
![Myles Heinrichs, 2, his father Tim Heinrichs, left, mother Christina Heinrichs and sister Isabella, 7 months, are pictured in their Kingsville home on Feb. 4, 2016.]()
Myles Heinrichs, 2, his father Tim Heinrichs, left, mother Christina Heinrichs and sister Isabella, 7 months, are pictured in their Kingsville home on Feb. 4, 2016.
What makes it expensive (about $39 an hour for 25 hours a week) is the one-on-one attention provided by qualified staff. To help a young child learn to talk, you may start with the goal of getting the child to pick up a picture of something you ask for (chocolate pudding, for example) and giving it to you. If you make progress, you advance to other items, like a favourite toy, or pictures of the father, mother, brother and sister.
“And you repeat that with every goal, over and over again, for at least two years,” Gragg said.
Gragg said the government has been increasing its spending on IBI, but the number of kids being diagnosed is also growing. When she first started in the autism field in the late 1980s, the rate of autism in the population was said to be 4.5 per 10,000. By the 1990s, that number was one in 1,000. The current rate in the U.S. is one in 68, which has more than doubled since 2007.
Most experts believe the dramatic rise is largely due to rising awareness among parents and professionals — that more kids with autism are getting diagnosed. Previously, children with autism were diagnosed with other developmental disabilities, girls weren’t diagnosed nearly as much as boys, and kids who did well academically weren’t diagnosed as frequently. Studies looking at some possible environmental factors, such as exposure to pesticides and herbicides, have been inconclusive, she said. But there’s an increased incidence of autism among children who have older parents, who were born prematurely and whose parents used fertility drugs — factors that are on the rise.
While she’s heard talk that Windsor has a high incidence of autism, Gragg said she’s never seen the numbers to back that up.
She said while the waits here for treatment aren’t as long as elsewhere, they remain too long.
“If it was someone in my family who had a two year old diagnosed and was told to wait a year, I’d definitely say ‘Go private, get whatever you can, start today, don’t wait a year,'” she said.
That’s what the Heinrichs did. After looking into government-funded centres and discovering the wait list was a year or longer to get in, they put Myles in the Therapeutic Learning Centre, a private Windsor centre that opened for business last month. There’s no wait list, the people are fantastic, but there’s a catch, said Christina: it costs $3,700 a month.
![Myles Heinrichs, 2, greets his father Tim Heinrichs, who had just come through the door on Feb. 4, 2016.]()
Myles Heinrichs, 2, greets his father Tim Heinrichs, who had just come through the door on Feb. 4, 2016.
The Ministry of Child and Youth Services funds IBI programs two ways: it directly funds centres, which all have waiting lists for qualified kids; and it provides money directly to parents who can spend it on programs at private centres like TLC, but there’s more than a year wait to get the money. The Heinrichs haven’t yet jumped through all the hoops required before they can get on the list. So they’re at least a year away from getting money to pay their monthly bill at TLC.
“It takes that long because there are limited funds available for children who require it,” said Veronica Vanderborght, director of autism services at the Thames Valley Children’s Centre — the London-based agency that runs autism programs out of the John McGivney Centre in Windsor and co-ordinates autism services (including the wait list for funding) for Southwestern Ontario.
“It’s an expensive service and there are limited provincial dollars available and there seems to be an increase in the number of children overall who need the service.”
A spokeswoman for Child and Youth Services Minister Tracy MacCharles said ministry officials are concerned about the wait lists and committed to making improvements. Aly Vitunski said funding for autism programs has increased from $14 million in 2000-01 to almost $190 million this year, and since 2005, the number of kids getting IBI has increased 115 per cent to 2,200.
“We recognize that while a lot of progress has been made … there is still more work to do and we will continue to make progress to improve services for children and their families,” she said.
Myles has been going to TLC for a month and his parents are marvelling at his progress. He used to have a “huge conniption” when he didn’t want something, but now he will shake his head. When you call “Myles,” he’ll turn around and look at you, something he never did before. When he wants to go to bed he’ll say “Bah,” and occasionally now, he’ll point to things he wants.
“Something so little, it means so much for him to do that,” said Christina, who has received $1,500 in financial help from the Neighbourhood Charitable Alliance to help pay their February bill. Tim works as a mechanic at a Windsor dealership, while she stays at home with Myles and their seven-month-old daughter Isabella.
“Early intervention is the most important, but to be able to pay for those services, some families have to take out loans or they are at the mercy of these wait lists,” said TLC’s clinical director Courtney Vonella.
Parents who discover their young child has autism also have to contend with this huge bill — tens of thousands of dollars, said Livia Congi, the program manager for Autism Ontario’s Windsor chapter, who has a son with autism.
“It’s pretty much university tuition for your kid, but you’re not prepared for it,” she said.
“Early treatment is the most effective thing to do, but sitting on a wait list, no one’s getting any treatment.”
The NDP reported in November that 16,000 kids with autism are on wait lists for either IBI or a similar approach called Applied Behavioural Analysis. And yet the government seems to think the situation isn’t that bad, said MPP Lisa Gretzky (NDP — Windsor West).
“These kids have their own special abilities, they have the ability to excel, they just need the right supports to do that,” said Gretzky, the party’s education critic. She said if kids don’t get the treatment and are then put into the school system, “they’re just not going to succeed.”
bcross@postmedia.com
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