I actually started this post last Sunday. Now, I am sitting at my laptop on a wintry Friday evening. Michael is constructing pizza. I am catching my breath with a glass of vino. Yesterday, I hit the wall by about nine o'clock and ended up in bed, sleeping soundly with breaks only for power surges and ablutions twice during the night. This was slightly embarrassing as we had friends Eric and Jayne visiting. But, there was no escape from my relentless weariness. Bed bellowed at me and I had no option but to comply.
The main cause of my fatigue can be tracked to my growing understanding of the National Disability Insurance Scheme. Sometimes, ignorance IS bliss. However, following my mantra that Knowledge Is Power, I have resolved to familiarise myself with this confusing, unwieldly and recalcitrant system that is supposed to be the saviour of the disabled and their families. What a crock of shit...
There have been some lightbulb moments in my quest to become educated about the NDIS. This week, I spoke to a compassionate, intelligent and empathetic chap at the NDIS call centre. I will not name him as he would immediately be moved elsewhere. Having repeatedly been told that was no avenue to apply for a reverse cycle airconditioner through the NDIS, this fabulous fellow revealed the way forward - a bulging 18 page, 3000 word document called the General Assistive Technology Assessment, that has to be completed by an Occupational Therapist. This assessment will be part of Alex's Functionality Capacity Assessment, a core part of his plan, which I have only just discovered was compulsory this calendar year...I have chased and secured an appointment with an OT in a couple of weeks.
My NDIS hero also informed me that I should have received Service Agreements from all Alex's providers as his Plan Nominee. Guess what, I have received 1 out of 3. When I asked for a copy of the service agreement from the crowd that pay his invoices, grandly known as Plan Managers, I was told they could find no evidence that I was Alex's Nominee. I found the document fairly swiftly and have emailed this info to the invoice company tonight. I can't believe they didn't just pick up the phone to the NDIS to confirm my status. *sigh*
Next week, I will contact his employment provider to gain a copy of their service agreement with Alex. Can we all see a pattern here? Tasks that I believe should take a couple of emails to facilitate take days to sort. We also visit Michael's orthopaedic surgeon, the Boy Wonder, for removal of stitches and an update of the latest surgery. Thursday, I am meeting Alex for his appointment with the respiratory specialist. Friday, I am supposed to be attending a Disability Symposium. I reckon I have Buckley's chance of three days in the Big Smoke.
In the meantime, I need to ensure his respiratory specialist spells out the rationale behind Alex's need for a reverse cycle airconditioner to keep the temperature in his unit stable and the consequences of this modification not happening. I'm afraid I feel rather skeptical about this process; last week, the NDIS asked an amputee if his amputations were permanent...Really?!
I understand that the NDIS is a recent system and that teething problems are inevitable. However, I fail to understand the lack of communication and the needless complexity of the NDIS. The disabled do not have any distinct advantage from receiving NDIS services. There is no level playing field, even if the NDIS did its job. Which it doesn't...
A young man wanting to attend TAFE to become a motor mechanic was taken shopping and given cooking instructions for three years before he spat the dummy. He has now cut his ties with the NDIS. An elderly lady who needs modifications to her bathroom for better accessibility has currently been waiting for a decision for over a year.
This mismanagement is not acceptable. How can we, as consumers, improve this system?
I thank the universe most days that we live in Heavenly Beverley and run the East End Gallery. Tomorrow is cause for celebration yet again. We will be holding yet another of our Famous Sundowners from 5.30 pm with LIVE music rocking on from about 6.30 pm. The theme is PIRATE. So, do your darndest and show up as your favourite watery scoundrel. Or not...Just come and enjoy great music, questionable company and an eclectic array of beverages and food. Plus fabulous art, of course.
Given the advanced ages of the founding artist and the front-of-house, the Sundowner will wind up at midnight. Those who wish to "stay up" will need to find an alternative venue. Michael needs to be compos mentis on Sunday in order to conduct a welding tutorial. Rising in the mid-afternoon on Sunday is just not an option.
The WA Day long weekend is upon us. The public holiday on Monday has no relation to the founding of Western Australia or Perth. However, do not allow logic to get in the way of a three day weekend. Enjoy the winter weather, rug up and visit Heavenly Beverley.
You are all very welcome!
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