Delay, Distract, Deter, Deny, Distress...Is this the mantra of the NDIA?
I am afraid that my sense of humour is either non-existent or entirely black at present. Last week was pretty full and hinted of some hard-fought promise. A diagnosis of Severe Obstructive Sleep Apnoea, followed by appointments with the GP and a sleep specialist made for a very hectic few days. We hoped that a financial millstone around our necks named Wanerie might be sold so we could free ourselves of that disaster. And then, on Friday, Alex's new NDIS (National Disability Insurance Scheme) plan arrived in the mail...dated 1 September 2021.
This bureaucratic document is so complicated that I didn't fully understand the contents for a couple of days. This plan was instigated by Alex's need for reverse cycle airconditioning in his Housing Authority unit to improve his quality of both life and daily functionality. Plus, I had begged for Support Coordination to assist us both in our adventures in NDIS Land. I had gathered quotes, reports, supporting medical letters. All this was delivered to the Local Area Coordinator in the first week of July. She didn't submit the revised plan until 3 August.
The Housing Authority had come to the party and were supportive of Alex's airconditioner installation. The only point they insisted on was the removal of the airconditioners should he ever leave his unit...
Snag 1 was recognised by good friend, Stacey. There was absolutely no mention of airconditioning in this new three year plan. Plus, she informed me that flexible funding could only be used on items up to $1500. Alex's airconditioning quotes had come in at $3700...
Snag 2 was the amount of Support Coordination funding - $2400 over thirty-six months. As this service normally starts at around $100 per hour, we were to be funded for eight hours each year. Like throwing a bucket of water at a firefront.
Snag 3 were the number of typos - my name, Alex's name, his Dad's name. The LAC, who wrote the plan, explained these kinds of errors are common and would not cause any issues with the plan. Oh, cynical me...
Snag 4++ was the final clincher. After contacting the LAC, she informed me that the NDIA had rejected funding Alex's airconditioning needs. She was adamant she'd emailed me that information. She hadn't... And apparently, the only excuse given for refusing the airconditioning was lack of medical evidence. What an absolute joke.
Eighteen months after beginning this journey, I am back to Square One. However, in spite of my dismay, I had tottered back on top of the horse. I have changed Plan Managers to a local group in Perth. They have actually provided me with a Service Agreement without me having to ask! I am researching Assistive Technology assessors to reproduce in NDIS jargon on an NDIS form all the daily functionality information that was gathered in a comprehensive assessment in June. I have requested the background notes for how Alex's plan was structured. The new Plan Mangers are exploring advocacy on my behalf. I have found, buried in the annals of NDIA gobbledygook that mid-range assistive technology items can be funded up to $5000. I just have no idea (as ever) on this process.
I am still in my dressing gown at half past three. I have done nothing else today apart from water my courtyard after I struggled out of bed at ten-thirty. Michael has fed me and looked after my needs. He should really be running as my mental state is so frayed, I have snapped at him frequently over the last couple of days. He is truly my knight in shining armour.
I shall leave searching for Support Coordinators until I hear back from an advocate. My major priority is securing an Occupational Therapist who can perform the AT assessment and complete the form, so I can be ready for the coming review and desired reversal of the NDIA's decision on funding these needed airconditioners.
I am so tired. My sleep study recorded I had breathing interruptions thirty-eight times an hour and had no deep sleep whatsoever. Michael's anxiety is high and his short term memory is erratic. We are back in the Gallery tomorrow and we are holding a Sundowner on Saturday evening. Yesterday I seriously considered just packing a bag and running away. Where? And why? All these issues were not going to be magically solved. And Michael and I are at our best together. So, I drowned my sorrows in vino and woke with a thumping headache.
I should get up from my chair. I think I will shortly, now that I have bared my soul throughout cyberspace. Maybe a spot of routine dishwashing and vacuuming is just what I need.
Stay tuned for my next riveting instalment. In the meantime, if anybody out there has a magic wand, I'd be quite partial to borrowing it!
And if the NDIA would actually lift its game and become relevant to people like Alex and me, I'd be most grateful...
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