JULIA MEDEW
August 22, 2009
Liljana Simonovska and her son Filip. Photo: Luis Enrique Ascui
LILJANA Simonovska wants nothing more than to hear her son Filip speak. In recent years, her five-year-old boy has blurted out odd words here and there, but none of them have ever really made sense.
''He makes a lot of sounds but he can't connect them into words and speech,'' she said. ''He often communicates by taking my hand and showing me things instead. He also uses a picture exchange system to communicate sometimes too.''
Filip was diagnosed with autism, a development disorder characterised by impaired social interaction and communication skills, just before his third birthday. His parents were told that the sooner they could take him to a speech therapist, the better his chances of learning to talk.
But for Mrs Simonovska, finding the right help for Filip has been a constant battle. All of the speech therapists she contacted had waiting lists of up to two years, and to pay for private sessions was impossibly expensive.
Her sense of frustration was temporarily relieved by last year's Federal Government announcement that it would give parents $12,000 to spend on speech therapy for children under the age of six as part of its ''Helping Children with Autism Package''.
At the time, the Government's media release boasted that parents would be able to choose early intervention measures that best suited their children, and that the $190 million package would provide greater access for those in need.
But after qualifying for the program in June and contacting 32 listed providers, Mrs Simonovska has been given nothing but more huge waiting lists. ''It has made me feel so powerless. Filip's desperately trying to talk. He makes lots of sounds, especially when he is angry. I have all this money on paper to help him, but we can't do anything with it,'' she said.
Mrs Simonovska and her son are not alone. Autism Victoria chief executive Murray Dawson-Smith said many Victorian families had contacted him with similar complaints.
''The Government did this with the best of intentions, but … there have been significant shortfalls in terms of families getting the support they are after,'' he said.
Chris Saunders, the father of an autistic boy and member of support group ''Autism Angels'', said he knew 25 families who had not been able to use their money. He said the group had written to Bill Shorten, parliamentary secretary for disabilities and children's services, eight times requesting a meeting, without success.
''We want to work out ways for these families to access care for their severely disabled children,'' he said.
Mr Saunders said a group psychology session set up by Autism Angels for parents who could not access help last year had grown from 10 children attending on a Sunday morning to 30 this month because of the growing demand for care.
''The waiting lists keep getting longer. Why won't Bill Shorten give these parents the money to find the therapists they want? These parents would sacrifice their lives for their children; they won't waste the money.''
Mr Shorten told The Age last night that he was aware of families' problems and planned to allow more therapists to come on to the approved list of providers in October. He also plans to increase the age limit from six to seven.
''There's no question there are big waiting periods, so hopefully this will cut down some of that time,'' he said. ''Hundreds of children will be able to get more services more speedily.''
For Mrs Simonovska, these changes are not enough.
''I wish they would just give us a chance to find a speech therapist ourselves. I don't want the money for anything else, I just want someone to help Filip learn how to speak.''
from http://www.theage.com.au/national/mother-just-wants-to-hear-son-speak-20090821-etv9.html