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Stephen's NDIS Story

Meet Stephen

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Stephen has Usher Syndrome, which means he has both hearing and sight impairment. He says the NDIS works at its best with cooperation between participants and planners.


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Hi, I’m Stephen and my disability is deafblindness. It’s actually called Usher syndrome which means I have congenital deafness or hearing impairment really and blindness which comes on from around about puberty.

Different people have different ideas from both sides – participants and planners. It’s really all about letting people know. Doing that cooperative exercise so we all get the best that we can out of the scheme.

The main thing is to know what you want and negotiate that with the agency – you wont necessarily get exactly what you want but you’ve got to be prepared to negotiate.