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Government 2.0 Taskforce Suggestion Box
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Autism Needs Data
I am the CEO of a privately funded charity which assists families in Western Australia affected by Autism. Western Australia is the only state which has a specific autism register. Even with this information the data you can access is over three years old and not specific enough to assist with the development of projects and identifying the areas of need. Current government funding ends at age 7 and those already over that age have had little to no assistance and are struggling in school and social areas (basically they have no social life and little chance of ever getting one us they are assited NOW). We would like this information gather in other states and shared extensively in Western Australia. We need details of ages, gender, suburbs (to know where to target activities), diagnosis and current school - with this information we can provide relevant and much needed programs that are not supplied by the government but are essential to making these children active and productive members of society. They can learn anything they just do it in a different way. With more information we would be able to do so much more, work with other not for profit organisations as well as disability services, school, hospitals and health care professionals. With 1 in 150 births being diagnosed with autism this is an issue society and the government need to deal with now and work more constructively by the gathering of sharing information with as many organisations as possible. It will take a whole village of people to help with the issues involved - no one can do this alone. These kids are important - please consider our request.
Comments
simonfj 5 months ago
with a (20 year old) nephew with autism my heart goes out to you. "They can learn anything they just do it in a different way". The same can be said of non profit carers in many other areas. The problem, we both know, is the fragmentation in this country, usually because everything gets funded all over the place and then 'a service is delivered'. Welcome to Australia.

Government (whichever of the 3) can't help you here. They are simply too busy delivering what they believe is a great service, incredibly efficiently of course. In NSW, my nephew has some terrific support, a pretty good social life, and his parents get respite from time to time, through a range of agencies (not sure who they are).

But if you want to create a National autism register, you'll have to find the state and local agencies responsible for their local database. Putting them all together is pretty simply, and government might help with funding. It's overcoming the closed culture which is the hard bit. For that, you'll have to go through a thousand large fish in some very small ponds. Good luck!

Brad Peterson 4 months ago
The concept is not miles apart from the Central Cancer Support Website in this same category. Maybe there could be some development funding for a generic "support" site structure which can be adapted for any community (cancer, autism, diabetes, etc) and populated with crowdsourced content.
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