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Lessons from the death of a little girl

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 Sydney Morning Herald journalist.

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why oh why did the father only get 12 years, when the mother got life? Is it not his fault as well? These two people are both to blame for little Ebony not getting the right parenting. I noticed the above person mentioned maybe the parents did not have financial means, but, if you go to the hospital or ring around, you will find many a person who do not charge for the help of speech impediments, physio therapy, and such. My son who is now 16 years old, had to have the above done when he was three years old, and, I didn't have to pay a cent....It was all bulk billed. I was not working back then, so found this to be quite helpful. I believe the parents of this poor little girl, are guilty together of not providing for Ebony. Shame on them both.
Posted by shez, 8/10/2009 9:02:24 PM
My nephew is Austistic. It has been hard and a long journye for the family. They did not have finances or big money but he received education ,love and help. A lot of therapy, a good school in Wollongong,hard work and love brought him through. Today he works,has friends,a girlfriend ,and travels on the trains and planes.
Posted by jeanette1503, 10/10/2009 2:56:06 PM
I can understand parents who find it so frustrating trying to get help for their Autisitc child, and sadly those who have killed their children for fear of what will happen to them. However, I can't understand how anyone could see a child die slowly of starvation. It's far from a mercy killing by a despairing parent-it's torture and cruelty. I also believe that the Father needs to get life in prisonment as he stood by and let it happen, using the excuse that he "was off his face". Would he have been any better "on his face"? I don't think so.
Posted by pat G, 13/10/2009 10:33:18 AM
My nephew is still being tested for autism. Even now on the way to his 3rd birthday, doctors have not yet given a definite diagnosis. The payout may help some, but when the specialists in the field keep putting the decisions off, then many will miss out. He will be in school before any financial help arrives. His brother has downs syndrome, and the family can't even get in home help. How bad does the situation have to be before the decisions for financial help actually take place?
Posted by cilla25, 16/10/2009 10:19:16 AM
mine was not diagnosed until 13 - we just got on with the job of speech therapy, occupational therapy, trying to cope with severe behaviour problems, etc because she was behind in her milestones. If you don't get a good paediatrician etc you have to be very energetic, very motivated, have good family support (even though you are often criticised as being the problem, not the child), have a loving and supportive partner, and be educated enough to demand health services. These parents had none of these qualities, just the depression that is very common (perhaps through sleep deprivation), hopelessness and a poor coping mechanism as evident from their reported behaviour. The problem is also one of perception: they did not expect DOCS to help but to punish, which is a common enough response from parents who are reported. DADHC is also reluctant to spend money on disabled children, even though it is mainly their responsibility. Everyone was just happy to look the other way rather than deal with such a distasteful family. Middle-class values applied to people with less advantages in life.
Posted by ml, 24/10/2009 8:16:35 AM
Many children are diagnosed with autism, and don't have it. They become addicted to medication, and it ruins their lives. Many times correct dicipline will correct it, because they are lively, naughty and continuously testing the adults, no to mention fooling the. There will be many more autistic children diagnosed because of the lack of smacking and chastizing. This business of sending your kid to a room to think, only leads them to brewing over things, working up hate and resentment towards authority. How many times have we said there is more truth in old wives tales, etc. So, let's try some old fashioned cuts while we're at it.
Posted by Mamamia, 24/10/2009 10:08:21 PM

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