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.
"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 won't necessarily get exactly what you want but you’ve got to be prepared to negotiate."
The more time you can spend in preparation the better your plan will be. Stephen thought about long and short term goals before he met with his planner.
"Don’t go to the meeting without doing preparation. Do think about what your lifestyle is, what are the things that you do, what are the things that you want to do, why can't you do the things that you want to do. All those sorts of things you do need to think about them before you get there.
I did think about my goals my likes and dislikes and what I’d like to achieve things in the area of education and something that was in the short term that I wanted to achieve."
Stephen had three meetings with his planner. He says the preparation he’d done enabled them to have an in-depth conversation.
"I certainly went in there with having sat down and gone through the form and converted it into a way that it had worked for me and written that down so that I actually had something to give to the planner so that we could start a conversation.
By having that copy of the plan that I had sort of come up with before him and before me that gave him the opportunity to engage in a dialogue with me which I think would’ve been much more difficult to do if I hadn’t done that homework.
I had actually three meetings in total the first planning session we ran out of time so that was fine you come back in two weeks and finish it. I was quite happy with that that we gave the session the time that it needed."
The majority of Stephen’s supports are managed directly by the NDIA but he also has a flexible budget to manage any supports or services as the needs arises.
I’ve transferred my existing supports to being managed by the agency and there’s also the self-directed supports which they give me a budget which I can use to purchase services I require, services which would be a more ad hoc and more difficult to plan for.
I’ve just received a new dog, his name is Selby. I’m in the process of doing a lot of training with him walking around the local area going to the local shopping centre which is about two kilometres away and trying to get both of us working as a team.
It hasn’t really changed my life yet but I think it’s going to. It’s going to give me the opportunity to do things that up till now I either didn’t do or I might have tried to get family or friends to help me with. It’s difficult to ask family members for example, to help you when they have got so many things they’ve got do, so many things pulling at them.
Self-managing of those certain services that are fairly ad hoc or are unusual. That’s certainly the change not that I’ve had now but it is the change that is coming. For someone like me who’s spent their life doing whatever they wanted to do – you just did it the hard way on some occasions or you just didn’t do it at all.
It's going to take a little bit of getting my head around that I can now purchase services to do things that I previously would’ve gone, ‘well I just can't do that’. It’s a great opportunity I think it’s really going to expand my horizons.
Source: Disability Loop