Raising a child with autism in Ontario

Parents with children with autism protested once again Friday outside Lisa MacLeod's office in Barrhaven against changes to Ontario's autism program.

MacLeod, Minister of Children, Community and Social Services, announced earlier this month that in order to clear a backlog of 23,000 children waiting for publicly funded autism therapy, families will get up to $140,000intotal to pay for treatmentuntil a child is 18 years old. Thatfunding will be subject to annual caps that families and advocates say will fall far short of what's needed for intensive therapy.

MacLeod was not at her office Friday, however, she has said the new program allows for parents to choose what therapies they want for their children. She has said parents can expect to have money within 18 months of when the program starts April 1.

CBC Ottawa asked parents at the rally Friday to share their stories about raising a child with autism.

Lisa Lindia, mother of Dante, 5

He waited 26 months to get treatment. He has been 11 months in full-time [treatment]. He needs 40 hours a week right now. He was non-verbal when he started. Is now starting to say words... Can finally say 'mama.' Every mom wants to hear their child say 'mama.' He calls for me now when he wants to find me from across the house and doesn't know where I am, instead of throwing himself against a door or screaming or hitting or biting. Right now as it stands he's going to be cut down to somewhere between two and seven hours a week. He's going to lose his voice. Lisa MacLeod says 'hey buy an iPad.' We have an iPad. We hope he doesn't talk for the rest of his life using an iPad. I want him to go to a child and say 'can we play?'

Kids can't live like that. You can't put them out and in the future in 10, 20 years and expect them to have an iPad to speak or to tell you what they want or what they need. He's learned how to go to the bathroom by himself, brush his teeth. He's still learning right now to dress himself.

What [MacLeod's] giving is a grain of rice. When some kids need a full bowl of rice. So if you're going give me $5,000 a year and my kid's therapy right now, we double checked yesterday, is $98,000 a year. How do I come up with that? How does our family come up with that? We have two other kids too. We can't. We don't even own a house. We're living. We're surviving. But what do you do when you have to pay $93,000 out of your pocket? I mean we're looking at rallying around him right now and building a fundraiser for him, but not every family can do that. We can't expect everybody else to pay for him. We just need the government to step up.

Kate Logue, mother of Desmond, 5

My son ... is in full-time [therapy].... He's still non-verbal, but we're just starting to get some words out of him. He's been in for eight months now and the skills he's developing, it's amazing to see the changes in him.... We don't even know how much money we'll get. The other thing to note is myself as well as a number of other families while we were waiting for services, we spent tons and tons of money in the meantime. So it's not like at this point we have the ability to remortgage our house yet again, you know? The therapy is expensive. It's worth it, but it's expensive. And at the very most they're saying that we'll get $20,000 for him, but his therapy costs between $70,000 and $80,000 a year. It's not something that we can afford to do for too long, unless we sell our house. So I'm going to keep fighting for him because he deserves the chance, he really does.

Scott Corbett, father of Will, 9, and Sam, 12

We're going to be absolutely devastated with these changes that are going on. I have one son that's currently in full-time services and he's made absolutely amazing gains. He's gone from being non-verbal to having a large vocabulary. But he still has many, many goals to achieve. And essentially what this new program is going to do is take that all away from him on April 1.

It's actually extremely heartbreaking. It keeps me up at night. We just have so many hopes and dreams for our son. And they feel like it's ripping it away from them. My other son is on the waitlist and he deserves to get the therapy that he needs for him, not a $5,000 payoff, which is actually not going to be $5,000 because it's going to start being clawed back as soon as you start making over $55,000. It's absolutely atrocious.

This is crushing ... rationing off a pot of money and saying 'Here you go. Go find the services that you need.' And it's completely irresponsible and reckless. So that's why I'm so upset about this. I can't believe that the government would throw kids under the bus like this. It's devastating.