Anyone started with the NDIS?

[eth]

@CheerBear I know limbo land well!  Keep on them about getting access approved.  It's really unfair how they put time limits on us but don't have them at their end.

Stay strong!

[CheerBear]

I feel like I've had a teeny tiny little win today.

I did my weekly "squeaky wheel" call to the NDIA and had someone understanding take my call. They asked why I felt the need for my access request to be fast tracked and I mentioned my anxiety around losing my existing support (despite what the NDIA say about not losing existing support) once the NDIS rolls out, if my application doesn't go through. It's support that is documented as keeping me away from the need for invasive intervention and I know it plays a huge role in why I can (sort of) keep going. I need this support to continue for a while at least.

I was, once again, told that it was taking months for access requests to be processed so I mentioned the guidelines that the NDIA have set of 21 days for them to process access requests. I said that I believe it's important for them to adhere to their own guidelines as it allows people living with a disability some sense of clarity and certainty as well as time to ensure we are not left falling through the cracks of the (broken, wonky) system.

The person I was speaking with wrote an email to higher powers then read it out to me before sending it off to escalate my request. We'll see what, if anything, happens now ☺

It isn't fair @eth. I think many people out there know that but are stuck with a system that is much bigger than all of us. Hopefully one day it will be better for us all, but until then, I have no intention of giving up the fight either 💪😊

My advice to anyone stuck in limbo land with it all is to be a squeaky wheel if you can (nicely).

[Mazarita]

Hi @eth, so glad you survived your meeting okay, even though it was such a stressful process. I have to run this morning, off to a GP appointment and have only just got up. But I wanted to say congratulations for making it this far and for following through so well once again. Love. ox

Hi @CheerBear, hope to catch you later, when I get home from appointment. ox

A smooth day to all reading or passing through here. 

[Queenie]

@eth well done on conquering your planning meeting. I have mine next Wednesday. I have to admit I feel like I am ill prepared. I have only had minimal support from a disability advocate and support worker. I've been pretty much left to navigate the system alone. All the phone calls, reports (including a WHODAS which I got my psychiatrist to complete) was initiated by me. I am very frightened of losing support I do have (which is next to nothing as it is). I feel like I've fallen overboard and growing tired of treading the NDIA's water.

Keep blazing the trail eth!

[eth]

@Queenie  you might be in your meeting by now - I truly hope it goes well for you and that you are feeling clear and confident that you can give them a true picture of your life and ask for the right supports to be funded.  Thinking of you and sending my best wishes.  Looking forward to talking after it's done.

Oh, maybe it's next Wednesday, not today....??

@Mazarita @CheerBear @Twinklelight @Bunniekins and anyone else following here ...... another heads up .........

I had done a WHODAS previously with my psychiatrist too but they still wanted to do a fresh one.

Despite telling me she would have read ALL my reports and statements before the meeting, it was clear she had NOT.  Had only read up to the internal review and not several more recent ones that were done for the external AAT appeal that ended up not happening.  So yet again the head doesn't speak to the hands, so to speak.  i.e. the LAC assessor who did the planning meeting had not seen all the documents their (NDIS's)  own solicitor had requested.  So we have sent them all through yesterday.  The circus goes on.

What I'm saying by the above vent is take EVERYTHING you have to the planning meeting!

[CheerBear]

Hiya @Queenie. Wishing you the best with your meeting if it is today. Looking forward to hearing how it goes.

Thanks for the heads up @eth and sorry again that the circus is so the way it is for you. I've kept everything NDIS related including a WHODAS that I attached to my access request. I submitted my access request electronically so I have the original as well as a digital copy. Might scan all the letters too and keep a copy of them as well 🤔

[Queenie]

Hi @eth and @CheerBear, I think there's been some confusion, my big planning meeting is next Wednesday (not today). I am beginning to get nervous about it.

[eth]

Hi @Queenie sending those wishes to you for next week then!  And for the days in between - have some NDIS-free days if you possibly can.  I hope some of my suggestions in previous posts can help you feel somewhat prepared.  

@CheerBear  Sounds like you're going to be pretty organised by the time you have your meeting.  I hope you hear about it soon.

[eth]

Hi @Bunniekins and anyone else who already has an NDIS plan ........  

Have been having quite a bit of anxiety about the next phase after I get an NDIS plan - putting it into action, hoping I can do more than I do now but at the same time not knowing how I'll cope with that.  It's been so many years without any support until I came here and even here only going out for essential appointments, chemist and groceries. 

Hoping you won't mind me asking you some questions about it all.  Do you have a plan manager or are you self-managing?  How did you go about finding good supports?  Do you have a co-ordinator of supports?

[eth]

@Queenie @CheerBear@Twinklelight@Bunniekins@Mazarita and anyone else following this thread.  WOW WOW WOW - my NDIS plan came through about 1/2 an hour ago.  Only 3 days after the planning meeting!!  And everything we asked for was approved!!!  $55000 for the year in total!!!  Co-ordination of supports, plan management, travel training, travel allowance, support worker increased hours (tripled), weekly psychology for the year (possibly the most significant for me) (minus the 10 MHCP sessions) - can't think what else just now.  

Such a jumble of feelings.  On the one hand it's amazing good news, on the other it's going to mean heaps of challenging changes over the next phase.  Don't want to sound ungrateful at all, just a bit surreal right now.

Thankyou all soooooooo much for your support getting to now.  I'm more grateful than words can say.