One community member’s experience
HSP community member David from regional New South Wales is located in one of the five trial areas where the National Disability Insurance Scheme (NDIS) is being tested around Australia. Here is an account of his experience.
I have been an NDIS participant since April 2014 and overall it’s been a positive experience for me. As background, I was first diagnosed with HSP in the late 80s when I was in my 20s. I now use a wheelchair to get around mostly, but can still stand and walk with assistance over very short distances. I am married with two stepchildren, I work a nine day fortnight and am studying part-time at uni as an off-campus student. I also drive my own vehicle with hand controls.
I originally registered with the NDIS through the “My Access Checker” as I’m in the current NSW trial area and I wasn’t receiving any funded supports. The NDIA, that’s the National Disability Insurance Agency who administer the scheme, then sent me the application pack. I completed the forms which included a report from my Neurologist about my HSP diagnosis and the impact on my life. I was accepted as a participant pretty quickly. The NDIA then sent me a planning preparation package to get ready for my meeting with my Planner. What I needed to do was write down: all of my equipment; who helps me out, both paid and unpaid; and what my goals were around health, education, work, lifestyle, independence and living arrangements. The more effort you put in here, the better and easier the planning session goes. I did a review of my plan in March 2015. The structure of the plan had changed a bit, but the actual process was pretty similar.
The main areas I get help are around the house, with physical therapy and with better equipment. I have had grab rails installed which has made the bathroom and toilet a lot safer for me. I also get help with garden maintenance. I self-manage this part of my plan, as I have a good yard guy who does a great job. The NDIS doesn’t cover all of his cost, but every bit helps. I cracked my wheelchair at the end of last year, one too many wheelies I suppose. I had a proper OT assessment for a new wheelchair that better suited me. I have been using it for a couple of months now and it is a vast improvement on my old one. I got physical therapy included after my review in March 2015. I needed to work with the physio in hydrotherapy to prove that I really benefited from regular hydro, I used the five subsidised appointments through my GP care plan to help me do this. The physio wrote a report with a recommended number of hours for a year and most of this was approved in my current plan. Everything in the NDIS is based on ”reasonable and necessary” and sometimes you need to be prepared to go the extra step to prove that what you really need helps.
It took me the first year to get used to how things worked, but with the new Participant Portal it’s a bit easier to keep track of how things are going. The Participant Portal takes a bit of getting used to as well, but if you get on it a few times when your plan first kicks off, it makes it a bit easier. The big change is that you are now in control of what happens with your funding once it’s approved. I get good help from both my Planner and my Business Support Officer from the NDIA, but I need to be the one who chases things up.
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