Lived Experience Forum

[eth]

Thanks a lot @Alone   gotta go soon.

Hope it clears up quickly @greenpea .  Rest up and plenty of fluids.  Fresh lemon ginger and honey drinks are really good.  Some people even put garlic in it!!  Eeeewwww but it works.  I take a high dose of echinacea daily and had a flu shot too so hoping I'll escape it this year.  Take care xx

[greenpea]

@eth Thanks eth thinking I might go and chew on some garlic cloves 🙂 Hoping you are having a lovely day with your sw :Dxxx

[eth]

Hi @Appleblossom  wondering how you went today?  Hoping you're feeling hopeful about the outcome of your meeting and that you had a positive experience with the LAC or NDIS planner.  

[Appleblossom]

Thank you very much for remembering and checking in @eth 

It was good.

I had not met the LAC before, as a NDIA delegate had done my plan.  I saw him too  ... as the ndis and LAC were in separete offices in the same hub.  I think this is becoming a thing for me cos it is about me recognising others and being recognised, visibly, physically in return.  I mentioned at beginning on the forum that I felt invisible and it was a big issue for me .. I still dont think most people get it.  It is why the Forgotten Australians felt so forgotten ...ie Out of home .. state Care Leavers ...

But anyway I recognised him and him me ...  I did a cheerio and moved onto the Brotherhood office. The LAC was a new employee who was checking up as he thought it was taking too long for my plan to be implemented.  He was right. I had been promised 4-6 weeks before the COS would contact ... and they still have not.  I had been distracted with lots of busyness including getting my submission in for the MH Royal Commission in Vic and the bub.  I would not have phoned up for another month. SO the business of today is not finished ... we got the run around by the provider ... as the plan had been approved by end of May and still no action or plan to contact ... me ...so the outcome ... was I felt well cared for ... that both NDIS and LAC were looking out for me.   my transport budget still was not in my account ... so there are a few outstanding things from today ... and he said he will call tomorrow.  There is also in the back of my mind ... the situation with my son ... who has just about given up on the NDIS ... my LAC was concerned about that too ... so anyway .. patience here is the norm ...  without a Support Co-ordinator nothing can progress.  I may change provider as they had timely documentation ... but dragging their heels and talking too much airy fairy nicencess on the phone and not gettng to the point.

Thx again for asking.

[Ali11]

Sending love @Appleblossom, that sounds like a taxing day. Hope you're resting and looking after yourself tonight  

[eth]

Good morning @Appleblossom   that's great that you felt 'seen' and well cared for yesterday.  Sorry I'd lost track of the fact you already had a plan approved and were waiting for it to be issued - is that correct or do you have it and it's not up and running yet?   (Too focussed on my own stuff recently).  Has anyone helped you go on the myGov NDIS portal at all?  Or have you had a go at it yourself?  When your plan is first approved the NDIS sends you an access code so you can access it.  Then you set up your own password etc - or if you've ever used myGov for e.g. medicare or centrelink you will have that already.  Your plan may well be on there already but not sent to you also or not sent to your CoS (just a possibility I thought of).  That's where you set up your account details for your transport allowance to be paid into too.  That should be backpaid to the date your plan started.  If your nominated CoS still hasn't contacted you I'd be getting really impatient so well done that you're managing to be patient, especially considering your son's situation with them as well.   I'd be humbugging them in your position.  Hopefully the LAC has given you their direct  phone number or at least online contact details  and you will have more advocacy from them on your behalf.

On the NDIS website somewhere there's a list of NDIS service providers in different locations and what services they do.  You could find some alternative CoSs there to enquire with and maybe choose one of them to go with.  You have the right to do this.  "CHOICE and CONTROL"!

Are you plan managed?  I am and it's worked really well for me so far.  If you are plan managed and have chosen someone to do that you might well be able to start booking your own support workers through Hireup or there's another one called Mabel I think - that have freelance SWs - you can interview them too before using them. (You don't need a CoS to use them).  If you want to know more about this you can ask me.  I use a small company and they are prompt, personal, and good communicators.

I don't know where you are (Tassie rings a distant bell)  but I recently joined a community disability alliance group that's all PWDs helping each other and have been put in touch with a peer mentor who's had NDIS funding for 5 years.  She is a mine of information and very encouraging and confidence boosting about my rights to things like changing CoS, and how to go about it.  Maybe there is such a group where you are that could help you get your plan up and running despite the lack of active CoS.  

Sorry if the rave is too much this early in the day!!  If none of these suggestions are relevant to your situation just ignore them ... no need to respond why.... 

Hope you get some action soon.  NDIS can do a thing called 'escalate' your case which might be worth asking the LAC about.  Might also be worth getting a receipt no. every time you have a call with them, or even doing things by email so there's a paper trail if it gets to the point you have to do a complaint.

Hope today is a good one for you and you hear from the LAC and are able to put all this stuff to rest and trust that people are doing what they say they will on your behalf.  In case it isn't obvious, that's a huge bugbear to me, a number one button pusher.

[Appleblossom]

@eth 

Yesterday the LAC asked for permission to escalate.  I am on top of most of it.  It is the group I nominated that has dragged their feet. They put effort to getting me on side to build business for new ndis ready company, (before the planning meeting), but are not managing their referrals well.. hmmm.  They are not involved with my son, however, I know how sensitive my son is to getting the run around and I can see it is a big part of the system. Still have not heard this morning.  My patience is partly related to lack of desire to be on the planet.

Yesterday I had another job to "fix up" re medical receptionist who mucked up my osteo primary care Hicaps entry.  She was quick to blame Medicare but then after lots mucking around admitted she had input wrong number.  I get annoyed when people blame the government but dont ackowledge ... and are over confident ...so I try and give ticks.

As an ex public servant and company director I guess I am equiped to slowly do the rounds, if I feel I am worth it.  My son asked for space to do his own NDIS but maybe we need to escalate for him ....  My main issue is having too much on my plate and (NOT being RECOGNISED) it takes time to go slow and be thorough.  SO I have rest and get up do the daily grind again, but in some ways I can finally see I can take advantage of what I have accomplished.

[Doglover]

Hi @eth ,

Im glad things r falling into place re NDIS. Nice that the coordinator was able to take care of the paperwork for u. I thought all the support u get thru NDIS would be free, i didnt realise u had to pay for it. And like u say, their financial issues r not ur problem, nor do u need that sort of thing put on u 

I think uv posted a newer post so will check that out now.

I hope u r feeling a bit less  pressured and r doing ok.

💜 Doglover

[eth]

Very sorry to hear your comment about not wanting to be on the planet @Appleblossom 

You are amazing to me and I for one really appreciate your presence and all you contribute to the world.   Your last line of your post re taking advantage of what  you have accomplished is very reassuring.

Hoping you got the call you were anticipating today and some good news from it.

If your son nominates you to also communicate with NDIS on his behalf he is still able to do so himself too.  Wondering if this would work for you both.

How frustrating the HiCaps debarkle must have been.  It's a nuisance to me too when people blame either the gov't or the computer system for their own errors.  After all, computers and eft systems are still operated by people!

Sorry if I confused you @Doglover  no you don't have to pay out of your own pocket.  Coordinator of supports, plan manager and support worker hours and even psychology for 30 sessions a year are all covered in my current NDIS funds package which is for 2 years.  But in a way it's still me paying as whatever they charge comes out of my funds allocated and is then not available for other services I might need.   And I am the 'customer' employing the service providers.  Hope this makes things clearer.

[Doglover]

Hi again @eth , that makes sense. Basically thrs a bucket of money so if u r being charged more by a certain provider, thats more that comes out of the bucket of money and less available for u to use. I think i get it.