Submission
No 41
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Shelley Fleming
Date Received: 17 March 2016
Submission S041 Received 17/03/2016
Family and Community Development Committee
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER
My son Matthew was born in February 2004, and was diagnosed with ASD in 2006. My husband and I had both realised somewhat before then that Matt was a little different. A social boy, at about 2 years old, he began to forget words he’d really only learnt so long ago, and the frustration he felt at being unable to adequately express himself started to become increasingly obvious, in the form of tantrums and some anxiety.
The governments Early Intervention Program was offered (about 1.5 hours a week and the waiting list was over 12 months long…..which then wouldn’t have been “early intervention” so we started to investigate other options. After consultation with Child Psychologists, our GP and various other people in the child health field, we then invested in Autism Behavioural Therapy (ABA) and, living in the Western suburbs of Melbourne, not only had to make the trips to Essendon to have meetings, but the therapists had to travel (often quite impressive distances) to us. ABA therapy cost us approximately $30,000 per year, and Matt was receiving 4 hours of therapy 5 days a week. This really did wonders for him- his speech improved immeasurably and we will always be grateful to Autism Partnership for what they have provided our son with. We painstakingly went through 8 other therapists, until one stayed with us; Laura, a brilliant (then) student who guided Matt to a wavelength where we and Matt could connect and- finally converse. ABA has been proven to have dramatic effects on children with autism, but it needs to be ongoing and intensive. So too does it need to be revisited and revised, otherwise the improvement of the child may drop off.
Though we believe that Matt’s improvements are priceless, we soon realised that selling the house would be a likely solution if we wanted to continue Matt’s therapy; otherwise we simply wouldn’t be able to. So in 2008, I claimed my superannuation, which was sitting at approximately $90,000. $25,000 of that was then claimed by the government in taxes. The $6,000 a year for two years, from the government was helpful (the ‘children with disabilities’ fund), but was gone within the first 2-3 months of therapy. So too were we provided with a ‘carer’ card that proved me as Matt’s carer and guardian; this was useless to us, and hasn’t provided any benefits or rewards. Although the carer payment is still helpful to this day.
In 2009, with our daughter Michelle beginning her first year of high school and Matt beginning prep, I spent months speaking to companies and local stores, asking for donations and any possible support for a fundraiser we planned to hold that year. We raised a little over $19,000.Which provided therapy for almost another year.
Matt is not severely autistic, and we felt that an autistic school might limit his learning, so instead we searched for a school that would cater more to his needs. We eventually came across Moomba Park Primary. With assisted learning in the ‘Foundation Room’, they have ABA therapy integrated into their system- perfect for Matt. The only issue happened to be that we live in Werribee, and the school is in Faulkner 45 kms trips twice a day, for my husband and I, now going in to our 7th year is not only expensive but can have a detrimental effect on the whole family. (The western ring road can be dreadful for traffic)
From my experience, I have found that Aides in schools are not provided with adequate training to deal with children with Autism, the school’s do not use the children’s disability payment correctly and have too much control over this, therefore it doesn’t get spent directly on the child. Schools also need to understand that if a course of therapy has been undertaken by the parents that is working, then the parents should be able to bring in therapists of their choice to the school to flow on with what works.
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