Lessons from the death of a little girl



The Sydney Morning Herald

7 October 2009

Lessons from the death of a little girl

By Kathryn Wicks

In sentencing the mother of Ebony - the seven-year-old girl from Hawks Nest who died of starvation - to life and her father to 12 years, Justice Robert Hulme of the NSW Supreme Court got one thing right. Their crime was reprehensible. No lesser sentence would have done. Nothing excuses her parents' inaction.

But it was also reported that although Ebony, who was autistic, had seen medical specialists about her disability, her parents had failed to follow through on therapies to address her speech and developmental deficiencies.

How could they? It seems apparent her parents did not have the financial means, and lacked the parental instinct and determination, to do the best for their child. Therapies for speech and developmental delays are of no use until an autistic child has been taught to behave appropriately and listen effectively.

In 2002 Ebony would have been two years old. Signs of her autism would have been visible: speech delay; failure to interact with others; failure to look anyone in the eye; uncontrollable behaviour.

Some baby nurses, GPs and pediatricians still wave away children with these signs and tell parents to come back in a year. Many mistake a lack of response for deafness, shifting the burden of telling parents their child is probably autistic on to audiologists.

But in 2002, when it could have made all the difference in the world to Ebony, there was no funding for behavioural therapy for children with autism. If waiting lists were as long as they are now it would have been 18 months before she might have seen a departmental speech therapist. And still she would not have been able to respond.

Somewhere between then and her death in 2007 Ebony's family gave up. Some parents do. While the strain from the cost and time of running a therapy program is just too much, many continue to take proper care of their children. Others, like Ebony's parents and Xuan Peng, a Canadian mother who drowned her four-year-old autistic daughter Scarlett in 2004, do not cope at all.

Shortly before Ebony's death the Howard government announced its Helping Children with Autism program. The new Labor Government picked it up and last October families with autistic children finally got some help: a child aged up to six now has access to $12,000 of therapy over two years. Except guidelines accepted by the Government say 2000 hours of therapy is the minimum needed, and that costs about $80,000.

Parents can get six hours of counselling a year. There are other, small amounts for speech therapy and the like. But information for parents is scattered across myriad websites, and exhausted parents have to jump through endless hoops to get their child's funding.

While it is not perfect, it is much better than when Ebony could, and should, have had access to intensive early intervention.

Yet effective therapy remains out of reach of most parents faced with this diagnosis. For others it means working unimaginable hours to pay for it.

Others again will empty their savings accounts, withdraw superannuation, redraw their mortgage; borrow; or undertake training to turn themselves into therapists to reduce the cost. Or all of the above.

My son is autistic. I hear his swimming teacher say: ''He's better behaved than a lot of other kids.''

I hear his preschool teacher say: ''He's just one of the crowd.'' I hear him sing the alphabet and count to 20, like every other four-year-old (just don't ask him to draw a cloud).

And when I hear that, I know it has been worth every minute, and every cent. It is not a bad outcome for a child who, when aged two, could not, or would not, say ''Mum'', would not look anyone in the eye and was oblivious to those around him.

Autism Awareness says there is no cure, but there is hope.

It is time for the Federal Government to offer that hope to parents by funding fully the cost of effective treatment. Is $80,000 too much for the taxpayer to bear? Not when a 1998 US study, published in Behavioral Interventions, found the estimated saving to the education system alone of early intensive behavioural intervention to be worth more than $274,000 a child.

So means test funding; use a sliding scale; make insurance companies pay.

Anything. But don't let Ebony's death be in vain.

Kathryn Wicks is a Herald journalist.