My name is James Davies, I’m 20 years old and I have spastic quadriplegia cerebral palsy.
I’m currently studying commerce at Curtin University. I am also working as a marriage celebrant and aspiring author.
My condition means I require 24-hour care which is currently provided by my parents. My disability affects all four limbs. I’m unable to walk at all, I can’t stand. I use an electric wheelchair to get around and I need help with feeding, dressing, toileting, bathing and that kind of thing.
It’s very difficult to plan things because I’m always having to rely on other people and fit in with their schedules and possibly if I had a bit more assistance and funding and it wasn’t such a battle to get additional care provided it would be easier for me to live my life the way I want to.
The future is a concern because my parents are in their sixties now so basically I think maybe they have less than ten years of looking after me and then from that point on I’m not sure what will happen, I may need to go to some sort of nursing home or other out-of-home care.
So that prospect is really quite scary for me as time goes by. It can be quite terrifying. But that’s why the NDIS would give people the opportunity to plan for the future. And not to have to worry about these transitions all the time.
My biggest issue to date with the system has been acquiring care for post-school study. At school I had a carer with me full time which was provided by the Education Department and when I left school in 2007 I assumed that things would just continue – I thought a similar thing would happen at TAFE and then at Uni.
When I went into TAFE for an orientation I asked the disabilities services officer what sort of care is available for people who need personal care, for toileting, opening doors, getting things out of my bag and so on, and she said “oh, we don’t have the funding for that” and so over the next 6 months or so it was a bit up in the air what was going to happen with that, because if I couldn’t go to the toilet, I couldn’t go to TAFE.
So I wrote to the Premier, the Minister of Education, the General Director of TAFE and the Director of Disability Services and the policy was changed at TAFE, but then I encountered the same problem again at Uni, so I had to repeat the same process and I had to write to the Premier, the Prime Minister this time and the Federal Minister for Disabilities and Children’s Services Bill Shorten and the Vice Chancellor as well. The issue is with these institutions is that because of red tape, their hands are tied.
I think the NDIS would be good in terms of smoothing out the way for people, removing those speed bumps that I’ve encountered. So there wasn’t this battle all the time. My mum had to attend Curtin University with me at night. For a person working full time that was very demanding for her and she was just trying to assist me in being integrated into the community here but I really felt very excluded, and all of that was due to red tape.
Transitions are usually the issue because that’s when you switch over funding models. So with the NDIS that wouldn’t have been a problem because you know what funding is already available and you’d have choice about how that funding is allocated so you could plan for 10-15 years in advance, you could have a lifetime care plan.
The one thing that I like about this plan is that it wouldn’t be crisis driven, it would be focusing on what you can do, not what you can’t do. Because I don’t like to fill out forms and have to focus on the negatives all the time and paint a bleak picture, because I’m not a bleak person, I’m about what I can do and the things I want to do and how to get there, not what’s holding me back.
As somebody said during one of the Productivity Commission hearings it could be any of us tomorrow. You know you could go out in the street and get hit by a bus – not that we want that to happen – but any number of varied things could happen, or you could have a child with CP as my parents did.
So I guess you just have to look at it from the other perspective and that’s what I try to do as well. I think able-bodied people don’t come across these issues and so it’s unfair of me to think woe is me, you know, I just have to think they live a different life and this is my circumstance and that’s theirs.
Together we’ve just got to do the best we can and integrate as much as possible, to close the gap.
James, 20, studying at Curtin University
The NDIS would give people the opportunity to plan for the future. You would know what funding is available,
and you would have choice about how that funding is allocated. You could have a lifetime care