Nancy Sadka with her two sons James, 5, and Andrew, 14, both of whom are autistic. Picture: Stuart McEvoy.
WHEN her son Andrew was diagnosed with autism in the US 17 years ago, Nancy Sadka put her career on hold.
She invested her time, energy and money into caring for him. She even flew in experts every three months to train local therapists.
For two years, Andrew received intensive intervention 40 hours a week. It took Sadka more than a decade to creep out of the resulting $150,000 debt.
She reckons it was worth it. Although Andrew, 19, doesn't speak, he communicates using a computer-based program. He uses public transport, shops, cooks, goes bowling or to the movies, and is an independent member of the community.
Sadka, though, is again navigating the health system, this time in Melbourne. James, her youngest son, now five, was diagnosed with autism three years ago.
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This time around Sadka hasn't had to make the same financial sacrifices. James qualified for $6000 a year for two years under the federal government's $220 million Helping Children with Autism program, available to children diagnosed before age six.
He's also enrolled in a group-based autism-specific intervention at La Trobe University that costs the same as ordinary child care.
But with diagnosis of autism continuing at unprecedented rates and services varying widely, not every family is so fortunate.
A report in last September's American Journal of Psychiatry estimated the prevalence of autism spectrum disorder at about 2.64 per cent, or one in 38 children, in the South Korean population studied. That is more than double previous estimates of 1 per cent. Although the researchers' methodology has been criticised, most experts agree autism is increasing. Wider awareness and better diagnosis are one reason, but other environmental factors may be at play: for example, the older age of parents, particularly fathers, has been implicated.
But for many families the most pressing concern is getting their child diagnosed and treated in as timely a manner as possible, without incurring long-term debt.
Recent Centrelink data shows only one in four children on the so-called autism spectrum is diagnosed before age six, the cut-off age for HCWA assistance.
Most children aren't diagnosed until they are seven or eight, says Flinders University associate professor Robyn Young. Kids who are "high functioning" are often not identified until school age, when socialisation problems emerge.
"Parents often seek professional help early, but the waiting list for diagnosis is huge. They might be on it for six to nine months before they can even get someone to see them," she says.
"Some families are spending $50,000 a year for intervention in private practice. One family in Perth mortgaged their house."
A review published in 2008 by the US National Institutes of Health found that regardless of symptom severity, earlier intervention was more likely to have an optimal outcome. Yet, like Young, associate professor Cheryl Dissanayake says that's seldom how it works out.
"Once the child is diagnosed, 12 to 18-month waiting lists are common, and then when they do start, it might only be two to three hours a week of intervention, when best practice recommends at least 20," says Dissanayake, director of La Trobe's Olga Tennison Autism Research Centre.
Young notes that for older children, options for federal funding are also decreasing. Previously, children with mental healthcare plans were eligible for six visits with a therapist. This could be extended to six more, and in complex need cases even further, for a total of 18 visits. But in November that was reduced to six, with a possibility of four more.
University of Sydney health economist and professor Glenn Salkeld says while the dedicated federal funding is significant, the system is fundamentallly flawed.
"What we need is a longer-term political commitment, one that goes beyond reimbursement of fee for services rendered and offers comprehensive evidence-based care provided by government-funded centres."
That's beginning to happen. The program James Sadka attends is one of six federally funded autism-specific early learning and care centres for kids aged from one to five years. Therapists use multiple teaching tactics to improve the children's social communication behaviours.
"We're using this model in a group-based program and are the first to do so," Dissanayake says. "Our preliminary results are showing improvements across all areas of functioning."
So despite the slow and uneven pace of advance, Dissanayake says up to 90 per cent of children develop some functional language if their intervention begins early. "When I came into the field nearly 30 years ago, it was expected that 50 per cent of children would remain mute throughout their lives. That's changed."
When James began the program, his inability to express himself led to behaviour issues and frustration. A year later, he's not only able to show or tell his mum what he wants, he's surprising her with his friendly cheer.
That's a great start for one youngster, but as Dissanayake says there's still a long way to go: "With only 20 full-time funded places per autism-specific early learning and care centre the, majority of families don't have access to these critical services."
source: theaustralian
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