Parents of autistic children refuse to give up their fight to save an intensive program that helps make their kids productive taxpayers.
A rally of Okanagan parents last weekend drew loud condemnation of Victoria‘s plan to kill the early intervention program on Jan. 31. They‘re scrambling to book time with other professionals and bracing for a painful adjustment.
“It‘s so hard,” said Lisa Watson, whose five-year-old son, Brett, has moderate autism. “There‘s a one-year wait-list on average for speech and occupational therapists in Kelowna.”
Brett has made substantial progress in his ability to communicate and relate to people since he started the early intensive behavioural intervention (EIBI) program 13 months ago, Watson says. He speaks in five-word sentences
instead of blurting one or two words. His parents can talk him down more easily from temper tantrums, he looks adults in the eye and he wants to engage more.
The program is available in Penticton and Kelowna. At the Central Okanagan Child Development Association, a behavioural interventionist works one-on-one with each child for 20 hours a week. A speech therapist spends two or three hours a week with a child, and an occupational therapist, one hour.
It‘s an effective program with numerous benefits, said executive director Wendy Falkowski. Many kids who‘ve graduated from the program at age six enter the school system, get jobs and become taxpayers, she said.
The problem is it‘s expensive. The program costs $70,000 per child each year and serves only 70 children in seven communities. The other 800-plus young kids with autism in B.C. get about $20,000 worth of services a year. They get nine or 10 hours of direct intervention a week. About 140 children were on a one-year wait-list to get into EIBI, Falkowski said.
B.C. Children‘s Minister Mary Polak announced last month her government is scrapping the $5-million program to make it more equitable. She says EIBI serves one per cent of all children with autism in the province but receives about 10 per cent of all autism funding.
“How do you provide the most funding you can for the largest number of parents possible?” she said this month in Kelowna. “With autism, (EIBI) is something we can‘t afford.
“We need children to have services as soon as they‘re diagnosed. That means looking at a program that has 10 times the funding it did in 2001 and saying how can we most fairly distribute that?”
The ministry plans to bump up service funding to $22,000 per child from $20,000 by next spring. It will spend $1 million on an outreach program to train professionals and attract them to rural regions, Polak said. The rest of the dismantled EIBI budget could go to higher caseloads and to help EIBI families adjust to the lower funding.
Autism spectrum disorder (ASD) is a developmental condition that affects normal brain development and occurs in one of every 150 births. It influences social relationships, communication, interests and behaviour.
The London School of Economics calculated this year that the lifetime costs for someone with autism without intellectual disability is $1.4 million, and more than $2 million for someone with autism who is intellectually disabled. The report identified EIBI and behavioural approaches as the leading treatments for children with autism.
Watson believes the B.C. government would save more money in the long run by spending $40 million a year so all autistic kids under six can access early intervention. Children who graduate from the EIBI program are less likely to require an education assistant in school and more likely to live independently as an adult, she said.
“Couldn‘t the ministry increase fairness for other families instead of shutting it down for families already getting EIBI?” Watson said.
If the government refuses to save the program, it should distribute all of the $5 million among families with autism so they get the equivalent of $26,000 instead of $22,000, she said.
Providing the EIBI program to all families who want it would be too expensive and “undoable,” Polak said. The province can‘t pay $70,000 a year to every family, but it can give them the most funding possible to try to offset their costs, she said.
Symptoms of autism vary. Sandie Smith, a single mom in Armstrong, says doctors diagnosed her teenage son Harl as “autistic-like.” Other kids continue to tease him at school.
“He sees the world differently. He‘s definitely an outcast and a loner. He‘s been bullied every day of his life, but he‘s resilient,” she said.
For some, early intervention programs like EIBI aren‘t necessarily the answer. Smith found that changing Harl‘s diet and paying a naturopath to work with him helped alleviate his symptoms.
She acknowledges that many kids with autism benefit from what she calls behaviour modification, but she applauds the government for cutting the EIBI program because it allows parents to find a therapy that works for them.
“With behaviour modification, you force the person to change in a certain way that‘s acceptable to society. You lose the individual person,” she said. “Parents need a choice. They need to understand there are other ways to help children with autism – not just behaviour therapy.”
Watson agrees that government funding should cover other therapies, as long as they‘re proven to work. Naturopaths and a gluten-free diet didn‘t make a difference for Brett, she said. The EIBI program was his best option.
“Behaviour therapy is proven to work for many children with autism,” she said. “It‘s complicated for parents when they have to hire a service provider.”
Everyone agrees the adjustment for affected families will be hard. However, child development centres will benefit because parents will have $2,000 more a year to spend and can pool their money to pay for an extra staff member, said Polak. Some parents can choose their own setup. Others will gather as a small group and buy the services of a consultant or a speech pathologist.
“Our aim is to allow parents to do this with as much flexibility as possible. The issue of trying to find providers is one we have to wrestle with irrespective of whether we‘re dealing with EIBI or not,” Polak said.
The Central Okanagan Child Development Association could lose as many as 20 staff once the program ends. It plans to design new programs that fit the funding parents get, Falkowski said. Staff also hope to provide programs that parents can pay for out of pocket.
“(EIBI) is a wonderful program, and we wish we could deliver it to all children with autism. However, we‘re not giving up,” she said.
Parents opposed to the program cut vow to keep up the momentum. They‘ve started a letter-writing campaign and joined with Mothers on the Move, which advocates for special-needs children. They may even organize a day of action, said Watson.
“We want a solution. It‘s awful the program is being cut. What can we do to keep it running?” Top of Page
