No, this isn’t a post about the Great Beardy Sky man – so back away with your precious bibles and sit down.
Nor is it an Outlander reference (IYKYK) because frankly I’ve dealt with enough emotional turmoil this week and I have no desire to self inflict anymore on myself right now. (Look at me taking the advice of my Therapist and not punishing myself! Whoo- Hoo! Go me – Oh.. wait.. No …wrong kind’ve … You know what? Never mind. Don’t mind me… I’m FINE!)
Despite the image header chosen for this blog ( Why do I do this to myself – JHRC) this week’s blog title stems from the fact that this week was a week I lost faith in not only the system ( The NDIS) but also people in general.
To begin with, on Thursday Aug 3rd 2023 I had my Change in Situation meeting via the NDIS. For those that are not aware, a Change in Situation occurs when someone’s NDIS funding has either run out early or is deemed inadequate for the person’s needs. Evidence needs to be provided of course and if successful- the application is renewed and funding is increased. That is the short version . And, in a perfect world, the short version would be all it would take to get you over the line.
Unfortunately, this is the NDIS and naturally if you’re not prepared to jump through hoops while trying to make sense of something that have been lost, found, copied, faxed to a completely different office, left sitting on a desk for three months before being buried outside, forgotten about, remembered again only to be made triplicate and then those triplicates duplicated for security reasons before being handed to you to sign off on with a BIC pen that ran out of ink 2 weeks before your scheduled appointment.
Okay .. so I may have exaggerated that slightly but given that this is my second Change In Situation application that took seven months to complete and submit- (even the submission was not without its complications) it’s closer to the truth than anyone would care to admit.
Anyway, my Support Coordinator G and the her Manager J joined the NDIS representative and I for the meeting at the required time ( G in person J via TEAMS) and off we went.
The next 3 hours were excruciating to say the least. I swear as I sit here and write this – I have never heard someone speak so much unnecessary gibberish in all my life! As the meeting wore on – I could honestly feel my brain packing a suitcase and telling me that I was entirely on my own as it DOES NOT get paid enough to put up with that type of shit! (And honestly, if it left at any point during those three hours – I would’ve given it a standing ovation)
By the time all was said and done – Myself, G and J felt we’d been pulled through the ringer and the three of us spent the next hour trying to figure out what the heckin’ heck just happened and what the next steps were moving forward. (Hint: We still don’t know and there’s still another 14 days to wait. With that and a provider of mine with two unpaid invoices outstanding due to my funding allocation being exhausted – the next 14 days are gearing up to be a whole lot of fun indeed)
If you asked me just a few days ago what I had hoped to achieve with that Change in Situation I would’ve told you the following:
- Access to the community via a broader range of activities ( Over time. Small steps required given that I’ve spent the better part of 3.5 years at home unable to get out without help)
- Respite – The ability to be able to go away on holiday and enjoy myself with friends. ( I’ve not done this in almost the same amount of time)
- More help via Support Workers
- Eleanor Wheelie! (My long awaited electric wheelchair)
- Proper time frames for when things were going to be happening/taking place
Instead, what I got was :
- A whole lot of gibberish that made no sense
- The feeling that the NDIS representative had no clue what they were talking about
- The moment I heard the rep say the words ” Oh wow… I’m just .. trying to ..Imagine your life” I knew the entire conversation was a lost cause and that G and J would have to go in and fight harder for what it was I wanted.
- Being told a whole bunch of things weren’t going to be requested because the NDIS delegate wasn’t going to approve them due to ” trying to find the best value for money”
- Being made to feel like I was being ignored and overlooked
- No idea about the when/ where/ how and why of anything
That night I fell into a funk and I haven’t really come out of it . I’ve learned not to get my hopes up. I’ve learned that you cannot rely on a system that was designed to help those of us with lifelong disabilities ( Thanks a lot Liberal Government) and that just makes me really sad.
If I’m honest, at this point in time, I expect my funding to be cut to even less than it was the first time around and the whole things just turning to shit . I’ll keep everyone posted with updates as things progress…
But for now .. I wait.
In other, less stressful news (I hope) I have taken a mini Social Media hiatus for the month of August. The last time I did this was a few years ago and I found it very beneficial for my mental health. I have deleted TikTok, Tumblr, Facebook and Twitter (X) because, with the exception of TikTok which was proving a distraction than anything else…. The other platforms were making me angry. For a number of reasons ( A majority of which have to do with the Outlander Fandom – and while I will not be discussing specific situations today – let’s just say I am better off not having access to those platforms at the moment. For everyone’s sake.. Not just my own.) and so, taking a well deserved break is just what I need to refocus and recharge the batteries.
At the beginning of this blog I said it’d been a week where I’d lost my faith in people but that to is also Outlander Fandom related BUT… given that it’s almost 3:30pm on a Sunday afternoon … I am going to put that off till next time. You’ll want to pull up a pew for that one, I assure you!
Thanks for reading
Have a great weekend
Ceej
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