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The NDIS and me: one year on

22 May 2018

It’s hard to believe I’ve been an NDIS participant for almost twelve months!  But I had a text from them recently, letting me know I needed to book in to have my plan reviewed before my first year was up.  I owe you all an apology for not providing an update on how I was finding the system after a few months using it.  Sorry! I believe a number of things may have changed since my first plan was put in place, but I decided I’d still give you a brief update on how the NDIS has worked for me so far.  This time I won’t make any promises about the timing of the next update – but if I get my act together, I will aim to let you know what happens after my plan is reviewed next month.


I blogged last year about the process of applying to participate in the NDIS and how I found that experience. I wasn’t sure whether someone like me, who is mainly affected by invisible symptoms of MS and who still lives and works independently, would be accepted on the program.  It turned out well for me.  I was interviewed by a planner who clearly understood that disability is not always obvious to the observer, and that symptoms including fatigue and impaired balance have very real impacts on daily function.  Based on her assessment of my goals and how MS affects me, I was accepted as an NDIS participant.  Looing back, I think that the fact I had read everything on the MS website about the NDIS, downloaded the pre-planning resource provided there, and filled in carefully all the sections about how MS affects me and what supports I have or would like to have, was a major factor.  Doing this meant I had ready answers to most of the planner’s questions, and made it easy to show her the impact my symptoms have on my life.  I’ve recommended using the pre-planning resource to friends who have “mild” (ie not visibly obvious to others) MS.  In each case, they have also had good outcomes.  Some of them even gave a copy of the information they’d written down about themselves to their planner, and it seems to have made a real difference to have everything set out clearly like that.


I decided to “self manage” my plan.  This means I purchase my own supports and then put in an online claim to be reimbursed.  I know what my annual budget is in each area such as “daily life” and “consumables”, and I just have to stay within that amount.


For me, the most confusing thing about my NDIS plan is that I was not given any instructions on how to use the allocated funds.  Within the heading “capacity building”, for example, I know how much money I have available to me.  But there is absolutely no indication of how I am expected to spend it.  I rang the NDIS hotline twice to try to get more information, and on both occasions was simply told that the money could be spent on “any of the things discussed in your planning meeting”.  Hmmm.  In that meeting we talked about everything I have previously self-funded and my ideas on what other supports might be helpful to me.  Nothing was said by the planner about what the NDIS would consider reasonable and necessary.  I’m not sure how I can be expected to know which items the allocated funds are intended for!


In the end, I have been cautious in my decisions about what to claim on my plan – putting in payment requests to cover anything that I am totally sure I asked for in my planning meeting and where I thought the planner was nodding away as if that was appropriate.  Where I’m not sure, I either haven’t purchased the support or have paid for it myself.  The fact that I’m going to get to the end of the year with about one third of my budget unspent, suggests I may have been too cautious.  I am told that the process has changed over the last twelve months, and that plans now include much clearer directions about exactly how any allocated funds should be spent.  Here’s hoping the services I have chosen to purchase (and which have been fantastic!) will be covered for me in my revised plan!


Apart from the lack of clarity on how a self managed plan should be used, I remain someone who has had a uniformly good experience of the NDIS so far. No doubt that’s partly driven by the fact that I do not need a high level of support, and was not previously receiving anything much other than the support of the MS Disability Employment Service (who have continued to work with me since I became an NDIS participant).  So, for me, pretty much everything in my plan feels like a bonus.   My situation is very different from the highly publicised stories in the media recently about people with very severe disabilities whose support needs have apparently not been adequately met.  My plan might be a relatively modest one, but it serves my needs really well and there is no question I am better off under the new system. 


My experience of “NDIS logistics” has also been great so far.  I have never had to wait long to speak to someone if I dial their number – and I called them this morning, so this is a current experience.  Once I got through the initial recorded messages, I went straight to a helpful operator without even hearing any music!  The on line claim system is similarly efficient.  Every time I have purchased anything towards my plan, the money is paid into my bank account the day after I put in an online claim. I have never had to carry the cost of a service longer than one working day, provided I submit claims promptly.  In case I am ever audited, I always upload the receipt the same day I put in the claim; so there is a very clear record of what I purchased and how much it cost.


Clearly my experience is just that.  My experience.  But it’s been good so far.  I’d encourage anyone affected by MS who is aged under 65 to consider becoming an NDIS participant.  After my own experience, and that of a few similarly affected friends, I particularly urge those of you who may think you are “not disabled enough to qualify” to think about it.  Read the information on the MS website.  Take a look at the pre-planning resource provided.  Think about how MS impacts on your life and function.  Unless you are lucky enough to be truly unaffected by your MS, write it all down and get your head around admitting to a planner that it’s not always simple to live with “mild” MS.  Maybe the NDIS could help?