I honestly don’t know how to start this blog .. other than by saying it has been one of the longest and most difficult weeks of my life
It’s been one of those weeks where I find myself wondering what it was I’ve done that was so God awful wrong that life felt like it needed to kick me in the teeth multiple times before throwing me head first into a bin and telling me to make sure I took myself out.
Pretty much, yep
At the time of writing this blog, I am all over the shop as far as the NDIS is concerned. In short, I have all this amazing funding – but no way of being able to spend it (How it NEEDS to be spent)
Allow me to explain.
I have been on the NDIS for approximately 15 months. In that time I have had more ups and downs than a Yo- yo and it’s not only left me exhausted to the point of delirium – but more confused than when I started and at a complete loss how some people are
A) Able to make their skin stay on and
B) Remain actively employed.
When I first applied to be a NDIS Participant (as we’re known) I was accepted due to the fact my Allied Health Providers had given sufficient evidence that proved they were, in fact, treating me for my Cerebral Palsy.
Cool beans. Excellent. So, I have my Exercise Physiologist, my Chiropractor, my Remedial Masseuse and my Podiatrist all covered by the NDIS. Hooray!
Over the next few months we bring in an Occupational Therapist, A Physiotherapist and a Psychologist and everyone is all going about their business and getting paid all while doing their bit to improve my mobility, my mental health and my overall well being.
(For most of my time on the NDIS I’ve been fighting for a Change of Situation- which means my current plan needs to be looked at, reassessed and a decision needs to be made as to whether or not an increase in funding is required. At time of writing this blog -I have been granted extra funding – we just need to remember that)
So, here’s where things stand.
In my new plan I have funding allocated for my Occupational Therapist, my Physiotherapist and some new dang-fangled individual called a ” Therapy Assistant” and between the three of them – they are supposed to better improve my life. Meanwhile, my Chiropractor, my Remedial Masseuse, my Exercise Physiologist, my Psychologist and my Podiatrist have all been given the ass with the NDIS claiming “There is no evidence to suggest that these services have helped prevent the deterioration of the Participants current condition”
In saying that, InstaCare – the NDIS provider who pay all my invoices for me – claim that all my Allied Health providers are there and accounted for and can, as per normal, submit invoices for payment and, according to them.. I have enough funding over the next two years to cover those costs.
Consequently, seeing as everything is as clear as mud at this point – it’s now pushed through what’s called an S100 (a review of a review) which means more letters of support, which means more documentation ( that may or may not be read) which means more waiting around while things are discussed, debated and determined which means I am yet again dicked around by a Government department who couldn’t organise a pissup in a brewry.
Thankfully, I have lodged a formal complaint with NDIS Minister the Hon Bill Shorten MP – or his office anyway- and they have informed me they intend to respond to my concerns no later than Tuesday this week.
I have no idea how long any of this is going to take- but it’s gonna be a long and bumpy road to get shit sorted out.
In other news, yesterday I got to go out with my Support Worker ‘Miss M’ and she took me to get some desperately needed underthings. Much to my delight,I found some that were brightly coloured and ridiculously comfortable! (Not to mention reasonably priced to boot. So yay that!) Shout out to the lovely staff at Femmeline in Main St Croydon for their helpful staff – especially since I was in a wheelchair- and amazing expertise in helping me find the most perfect fit! It was also while there that I found out that there are 28 Cafes in Croydon and ‘Miss M’ and I decided to visit one called “The Famished Wolf” for a bite to eat. ( Side note: Between leaving The Famished Wolf and getting back to my house we counted 9 Cafes in Main St. We’ve decided we’ll go back sometime soon and find the rest!)
I was having quite a good day until late yesterday afternoon when I received a message from my Sister telling me that our Grandfather (on my Mothers side) had passed away earlier in the week. Last Tuesday in fact. The only reason anyone in our family found out was due to the fact a distant relation contacted my Mother to pass on condolences.
We have since found out my Grandfather had not been well for quite some time – Throat Cancer – and a few weeks prior to his passing he had also had a fall and fractured his hip. Our family was not made aware of any of this, during this time, and I must confess to being a little upset about it. *
I’m sure His family had their reasons but still, when something like this happens you would think they would at least reach out personally and inform us themselves.
At this point we have not been made aware of any funeral details so we can do is wait.
I guess we’ll see what the week brings eh?
Ceej
*For those playing at home my Grandfather was Married twice. Once to my Grandmother (Dec) and then to Nanna P . Lovely woman I thought. **
** Full name not given for reasons
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