Dear the Select Committee on Autism
My name is and my wife and I are loving parents of an autistic son. I thank the
committee for the opportunity to submit my experience and the challenges we have faced as a family in obtaining the best care for our wonderful son. More than 4 million Australians are classified as disabled, which represents 18% of the Australian population. Despite this, many families feel they are let down by a system that is needlessly difficult to navigate from the very start.
In my personal experience, I found our biggest challenge was the lack of support, funding and access to the specialists that hindered our ability to obtain the best support for our son. At the
time when we suspected my son had a disability, we were living in in a mining town in
Queensland, with a population of 8000 people. To see the specialist, we had to drive hours for him to get a diagnosis. Once we had a diagnosis, the constant bureaucratic red tape, the waiting times for services was something we truly struggled with. If you have always been self reliant, it is hard to understand what you need from different departments such as Centrelink and NDIS. We paid thousands and thousands of out of pocket expenses until our NDIS support came in, which was very financially difficult for us as we are a family of five.
I am obviously incredibly grateful that families like myself have access to the NDIS and the social safety net of a program like Centrelink. However, more can be done to ensure that more social support programs and educational programs are available to families with disabled children. Families with autistic children have to become their fiercest advocates to ensure their best possible chance of success in life. We, as a community need to acknowledge that not all parents have the financial or emotional needs to meet these challenges. Without additional support, we are hindering the ability of disabled Australians to achieve full and productive lives.
Of particular concern to me, is that there is an inadequate amount of resources provided to regional centres. If we lived in the capital city, my son would not have had to wait so long to be diagnosis. Quite frankly, my son and other regional families deserve equitable access to
services. In - where we now live has a population of 178,000. Despite this
comparatively huge population, - has one special needs school . His school -
and his teachers are excellent and we are grateful that he has a place where he is thriving. But what about the next child who misses out because there are not enough places for them? Or the family that can’t afford to relocate to - to get their child into this school? Regional families are often forced to face the decision to leave their lives behind in order to get their children the best care. This is a heartbreaking decision and its one no family should be forced to make. We need to be supporting our regional communities and not deserting them in times of crisis.
It is of no question, that caring for our child with autism is both challenging and rewarding. However, I respectfully ask the committee to factor in the financial, social and economic implications of the inadequate support systems for our disabled community members and their families. Furthermore, I ask you to critically review the needs of regional communities and ensure that the regional families like mine, are given equitable access to the services needed to help our autistic children thrive.