Autism cuts add one more burden to families

Cuts to government-funded programs are raining down in all directions. Alicia Ulysses gets that the end of free karate lessons for her 16-year-old autistic son is pretty small potatoes given all that.
But sometimes a mother just has to stand up and say: Hey, you guys, have you ever considered what you’re really taking away from the child at the other end of a decision like that?
In B.C., families can qualify for up to $20,000 a year in government funding to help pay for special services for a child with autism who is under age six. That amount will be increased to $22,000 next April. Nicholas Ulysses is 16, so the maximum his family qualifies for is $6,000 a year.
It’s a needed program, and here’s hoping nothing bad happens next year when the government makes changes to the way parents access the money. But the problem for families of older children is that the kinds of activities that would benefit their child often don’t qualify for funding - or not for long, at any rate. So it is for Nicholas, whose government-funded karate lessons came to an end this summer.
The kinds of autism services government prefers to support are therapies that target very young children, who benefit immensely from early intervention. Once a child moves into the “six to 18-year-old” category, however, they’re as developed as they’re going to get in terms of their autism. They qualify for considerably less support, and far fewer services that fit their changing needs.
Up until the latest rejection letter, Nicholas’s mom has been able to make a case to government that karate lessons qualified as an “other intervention recommended by a professional.” Even so, the decision has been revisited almost every year since the family was approved for $4,000 a year in funding in 2005. Each time, Alicia has to get yet another letter of support from a registered psychologist attesting that karate is beneficial for Nicholas.
It’s true that the teen enjoys both the sport and recreation of karate, and that neither of those activities qualifies for autism funding. He definitely needs the exercise, which Alicia is pretty sure the government would agree with if they’d ever actually met him.
But Nicholas’s karate is about much more than that, says his mom. When he’s at his karate lessons, he feels like he belongs. He’s got friends. He’s got purpose. Those are things that a lonely boy with autism doesn’t get to feel very often.
“At school, people treat Nicholas very nicely, because they know that’s what you’re supposed to do,” says Alicia. “But they never call once to invite him to a movie, or to a birthday party. These kids want to feel normal - they want to be involved in normal things. Not everything in their life has to be a therapy.”
Therapy is no longer the issue for a child the age of Nicholas, she adds.
“Now, it’s about coping. I took Nicholas for a job interview today and it went really well. But that’s because I did his resume. I got him in the right clothes and shoes. I made sure he brushed his teeth. He doesn’t need intervention anymore - he needs help with everyday things.
“OK, the research says that people with autism need this or that kind of service, and that’s what we’re supposed to want. But meanwhile Nicholas is a lonely boy, nobody’s calling, and he wants a girlfriend. Slowly, slowly, these kids learn to give up, because they feel the rejection.”
Laurel Duruisseau, of the Victoria Society for Children with Autism, says karate and gymnastics are two of the biggest bones of contention between her society’s 150 members and government. She says occupational therapists recommend such activities all the time, but government resists funding them.
“The funding is really intended for one-to-one intervention, which is fine for a four-year-old but not such a good fit for a 16-year-old,” says Duruisseau. “We’ve pretty much all been through it with our kids. Any activity that you can put a typical child in, chances are the funding won’t cover it.”
Her group created a new charity - Mosaic - just to try to get around the problem. It runs drama and art programs for autistic teens. “Karate is actually on the list for us to look at adding,” says Duruisseau.
A high-profile B.C. court case over funding for services kept autism in the headlines for a long time, until the case was lost at the Supreme Court of Canada in 2004. Alicia says there’s still “a lot of noise” about autism in the province, but little change. This week, the government scrapped a $5 million fund that paid for a particular kind of autism therapy for 70 B.C. families.
“When we speak up, I don’t think they want to hear it,” she says. “My case is a minor one, but there are others that aren’t. And it’s not fair. Every little thing adds another burden to a family that’s already stretched.”