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Re: A long rave

@eth thank you for sharing your info about NDIS with me. You are the top expert on it of all the membership from my point of view, having gone through a painful path that pioneered a way for people with mental illness so early on in the development of the NDIS applications process. That in itself, and also that you shared each step of the way with us at the time.

 

By comparison, I feel almost embarrassed about how easy it has been for me to be approved for it some years later from your initial trial by fire with NDIS. Pretty much all the work was done by the organisation that took on the advocacy for me, specifically my lovely support co-ordinator, who was so very happy about the positive outcome for me. The main thing I had to do was manage my anxiety and ambivalence about it, not get too attached to the idea so that I wouldn't have a pile more emotional and psychological baggage if the outcome was no.

 

Support co-ordinator/advocate (I don't really know her official title) and I had an initial meeting of two hours, during which she got to know my situation in detail. She made initial contact with my doctors (GP, psychiatrist, psychologist) about their part in the application. I had one appointment with GP specifically relating to it. Bit of a chat during our normal session with my psychologist. My psychiatrist just told me in passing during one session that he had signed off on it as well.

 

I'm not sure what exactly was provided to NDIS. I know that when NDIS asked for more info about me and sent a new giant form to be filled out, my support co-ordinator filled out the form herself and sent it to my doctors to sign off on. One of the things I imagine would have helped with the smoothness of this process is that I have been with my GP, psychiatrist and psychologist for years and years, and so they know me very well, my ups downs and in betweens, and are all solidly supportive and keen for me to get the extra help. No idea yet how long my plan will be for.

 

I think I may be like you with the anxiety over review processes and possible tightening of NDIS policies in future. I will be avoiding a recovery coach if it is someone appointed to me by NDIS itself. Is that the case with a recovery coach, do you know? Will be avoiding anyone who comes from NDIS itself, probably do not want to self manage but want a big role in discussions and ultimately the final decision on how the funds are used. If it is my choice, I may not be against my old support worker from those years ago taking on a recovery coach role (need more info about it though). In any case hopefully the overall benefits will outweigh the sustained anxiety provoked by NDIS processes. The clear benefits for you make me feel more hopeful now that it will all be worth it.

 

I have downloaded the price guide, it is indeed a huge document. It may be helpful though so I plan to read the parts that specifically list categories and items.

 

Gut pain has settled, thank goodness.

 

Really love the discussions we are having about writing, performing and creative processes. Seems like another synchronicity between us that we are both now mostly engaged creatively with writing poetry at this time.

 

Hope your days are going well this week, my friend. ox

Re: A long rave

p.s. @eth I just found out the meeting I have on the phone with NDIS on 17 March is called a pre-planning meeting, after which they decide how much they will fund my support. If you have any specific suggestions about that meeting, I would be more than pleased to hear them. ox

Re: A long rave

Hi @Mazarita  just finishing a report I had to send before 3pm today.  But here.  Haven't read your posts yet but will in a few minutes.  Just wanted to catch you xx

Re: A long rave

There's a group on fb for DSP seem to be very knowledgeable @Mazarita

Re: A long rave

Hi again @Mazarita !

Firstly about your pre-planning meeting - if I were doing it again I would still make sure the NDIS know you want it face to face in person (if in fact you do).  And whether you do that or do it on the phone I would make sure your wonderful advocate who has done so much so well is there with you.  Sounds like she's done a fantastic job and really taken a lot of the pressure off you.  What a find!  EDIT :  everything you ask for has to relate directly to one or more of your stated goals.  I found that I had about 7 separate goals (with multiple specific things for each) that were summed up by NDIS into 3 quite broad goals, which actually worked in my favour in that it increased the range of things I've been able to use funds for.  I was really stumped at first with the whole idea of having to come up with goals as I hadn't had any for so many years ... but I had help from my bro and sil to come up with some. You could do it with your advocate.  At this stage the stated goals in my plan are 1. to continue to improve my health and wellbeing including giving up smoking (which I havent managed yet but I am a lot healthier);  2. to increase my social and community participation and build relationships; and 3. to have a more engaged and independent lifestyle.  That's what NDIS summed them up into.  The first 2 considered short-term, the 3rd a longer term goal.  But my list that I took to my meeting was quite long as I worked thru' the price guide to help me form the goals (I didn't tell them that!). End Edit.

I haven't been through having a recovery coach so can't really tell you if NDIS will appoint one for you or not.  They did appoint my initial Coordinator of Supports tho' but it's really important for you to know you have the right to find a different one if not happy with the one appointed.  It took me a long time to find that out, the info came to me when I started getting involved with the disability alliance locally.  It's an aspect of your right to CHOICE and CONTROL, which is NDIS speak but one of the most important things for you to bear in mind whenever choosing anyone to be part of your team.  I do believe recovery coaches, as with Coordinators of supports, are either employed by an organisation separate from NDIS (e.g. Flourish or One Door - but I don't recommend either of them from bad experience) or sole practitioners - which is what I now have.  They aren't directly employed by NDIS even if appointed by them at the start of your first plan.  As far as I know recovery coaches do a fair bit of the same stuff a CoS does (but not all, they are different in some ways) but they get paid less.  I personally much prefer to continue with my current CoS, but I've heard it is possible to have both.   

Not sure how your plan will be managed - if you go with a plan manager (as opposed to either agency or self managed) then I could have more useful info for you.

 

Ah, the value of having a great mainstream medical team that works together in your best interests.  Yours sounds fabulous and reliable, as is mine.  You might find it valuable to ask for copies of any reports written about you by them for possible future reference.  As I say, nothing about me without me.

I do believe that my case became a precedent with NDIS and has possibly paved the way for an easier journey for people with psychosocial disabilities, particularly when bipolar and cPTSD are both involved.  They eventually realised they would lose at an AAT hearing and conceded to accept me only 2 days before the hearing was scheduled!

 

Re the writing - I love that we're both into it currently too.  I've also been challenging myself to write short stories the last 2 years.  Still no dates for the residency thing yet.  Wouldn't mind getting inspired to work on something larger but uncertain about what that might be.  I'm interested in the theory of the stages of isolation and maybe weaving them into exerpts from the journal I've kept daily since early March last year when we first went into covid restructions ... hmmmm.  Just don't know how to get that to have any appeal to a reader.  Or then there's the multiple stories I've written that are largely memoir but with poetic license thrown in and maybe linking them into a body of work.  My mum calls my style fact-ion!

 

Look forward to hearing from you as always.  Lovely to see all the well wishes you have received about your NDIS approval.  And good to hear your gut problems have eased somewhat.  Take care xx

Re: A long rave

❤️ @Appleblossom .....

 

@Mazarita, the advice I received was to ask for as much as you can - aim very high - with as many medical reports, quotes for services etc that you (reasonably) can, because the planners are obliged to knock some of it back.  Therefore asking for the maximum of what you need / can use, and having it (maybe) reduced, will still see you right.  Better to have "too much" funding while you work out how your needs will be met on your NDIS plan, than not enough.

 

I hope this is helpful 💕

Re: A long rave

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Re: A long rave

Good morning, @Adge @Faith-and-Hope @eth @Appleblossom and all. Smiley Happy

Thank you to those of you have given me some thoughts and advice about NDIS, really appreciated. Will process and post later in more detail. Need to go to sleep as soon as I can after a bit of a tough all nighter. Have a good one today. Heart

Re: A long rave

@Mazarita A lot can vary with individuals who fill the role, but to start off with the labyrinth of NDIS, be focussed on your goals and the roles.  Some people will gell more than others.

Hugs

Apple

Re: A long rave

Hi @Appleblossom just read your latest post in our conversation on Exo's thread. Thought I might pick it up again here. 

 

Oh yes, @eth has had a huge role in her own recovery including big sacrifices in the 18 months leading up to receiving funding. Any of us need to put work in to get the benefits. We are the main drivers of changes. As my old psychiatrist used to say at the times when I was inclined to express gratitude for his huge help, he used to say 'you did it yourself'. It was his way of teaching me the power of my own efforts and my capabilities in relation to my own healing.

 

Me too with the trying to be contributory to society as much as I can, despite inability to work for money. My creativity plays a massive role in my sense of contributing something to the world. Similar to you, I was also told a long time ago by someone at Centrelink that I should be on disability pension, my mental and physical health struggles warranted it. It surprised me at the time (I was on newstart sometimes not able to even afford bus fare). I wasn't ready then to think of myself as disabled, though I look back now and see that I should have been receiving it from in my 20s.

 

Also relate to your words about being grateful to live in Australia with the welfare support here, compared to the lack of it in so many parts of the world. I really like that idea of seeing it as a kind of universal basic income, a concept I agree with for the world, as long as it is actually livable.

 

May there be times of enjoyment in your day, Apple. Heart

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