21 Mar 2018 Lupus, Transverse Myelitis, paraplegia and NDIS funding

Work hard, save, then spend. I was brought up on wise words and much to my son's frustration, he has to earn his wants...save for his ripstick, work for his phone, help the family. Here enters funding, it is not natural for me. It doesn't sit well with me ... money for nothing, begging isn't my style. So I swallow my wise words and remind myself we live in a commonwealth - wealth common to all, and try and not think about it too much.

NDIS (National Disability Insurance Scheme) rolled out officially in Nov 2017 in our area, we were contacted just before Christmas and a meeting was arranged 2 Jan 2018 in a temporary NDIS building, very discretely. No contact numbers, address given at the last moment, reluctantly. Maybe spies are a problem?

On the very positive side, without the new government initiative of NDIS we would have to self-fund, like many before us...unless of course, you are under TAC. So we are very thankful, albeit apprehensive of how the fledgling system works.

Yesterday, Elise, Poppy and I spent an hour with a Prothetist to create moulds for Elise's lower legs... new orthotics are needed (or Ankle Foot Orthotics) to reduce muscle/limb contracture and deformity. Not using the legs means that the long ligaments tighten and force the feet into an abnormal permanent position, something to avoid. NDIS stated ~$450 for this custom item, the Prothetist flicked through our NDIS plan...who nominated this amount? It costs $2800, to be replaced every 18 or so months.

 

NDIS plan sample - AFO's listed plus an adapted clock! Wrong button push from the NDIS planner.

Today has been a very frustrating day, the government kindly help but then make things very difficult. We have been allocated way too much for personal care/social inclusion and way too little for necessary things like a pressure care mattress. It is inflexible, so now we left wondering what to do. Stuart thinks we will have to contact someone higher up... hmmm.... not my style. At this moment, Stuart is looking up details of the Disability Services Commissioner.

The NDIS meeting was a new experience, government style. They were polite and sensitive but nearly all the allocated time was spent answering a mostly irrelevant lengthy online questionnaire... the lady was very apologetic.

Can she stand up?  No...she is a paraplegic
Can she walk? No ... she is paralysed
Can she button her top? Yes... she is only a paraplegic, not a quadriplegic
Can she feed herself? Yes... she is only a paraplegic
Can she handle money? Yes ... it is only paraplegia
Can she save money? Yes ... she is sensible, it is just her legs...

Then there was my question... do you know anything about paraplegia? ... "NO."

I felt sorry for the NDIS lady. So we finished the questionnaire and it was clear the meeting was to be wrapped up. What about her needs? What about the long list of things required for a paraplegic? So we handed her our extensively researched plan and hoped it would be enough.

First page of our detailed plan

The thoughtful NDIS lady... "we will give you a great plan, you will be really happy with it. You really will."

So we left the meeting with out heads spinning, having no idea what we were going to end up with. Our detailed plan was very detailed, in fact, it took over a month before they rang us and said Elise's plan was ready to go. Then the delay in waiting for the code to open it online, through the MyGov portal. Then the next delay with getting the Plan Manager signed up, then the delay in more paperwork for each and every provider of services :-(   Necessary evils.

I am slowly working through it. Today I received our first delivery of continence equipment. A relief as one of our sets is 6 months old, yellowed and mouldy (despite cleans) - they are meant to be replaced frequently but at $6k/year we have held out for funding. It was an exciting delivery.

This year obviously is going to be interesting - paperwork, negotiations, meetings plus 2 kids doing VCE subjects and one still on readers. Be calm, patient, use a cheery voice ... self talk is wonderful, it is good for my limited intelligence and brings harmony to the family.