Anyone started with the NDIS?

[eth]

Sorry to hear that happened with the paperwork for your NDIS application @JasJac.  I would encourage you not to give up.  I was knocked back a few times (including internal appeal to their decision)  before my external appeal through the Administrative Appeals Tribunal was successful.. .  Long story there which I've already told here.  It's a roller coaster of emotions and very hard at times but so worth it if you are successful.

Do you have any 'informal' support (family or friend usually) to help you with it all?  That made all the difference for me.

[CheerBear]

Hi @eth and anyone who might be reading along with this (very helpful) thread.

Today I took a call from the NDIA to book in my planning meeting. A little while ago I was accepted into the NDIS then was hit with the frustration of being told it would be 6-9 months until a planning meeting. Last week I called to check how it was going and was told the time had been extended to up to 12 months wait for a meeting. I don't know what happened but I now have a meeting booked in for about 2 weeks from now.

I feel a little overwhelmed as I haven't done any of the preparation I would have liked to yet because it looked like I had a lot of time until it was here. It's also a pretty bonkers time (when is it not though) and I don't know if I am really up to dealing with NDIS stuff right now. Hoping it will ll be worth it though. I have a bit of work to do I think 😏

I'm going to go looking for the planning meeting questions you posted a while ago eth. Wondering if you know whether they're still the same? Also planning on reading through this thread again as I know there is some great info in it.

[eth]

Hi @CheerBear  good on you for being proactive with NDIS.  2 things spring to mind.  1.  you can ask for a different date postponing  your planning meeting if you're not ready for it and 2.  lots of people on fb recommend having a face to face meeting rather than doing it over the phone.  I did and it worked out really well.  I had a (free) disability advocate helping too (google them, they're in every state).  If you've got a planning meeting it sounds like they have accepted you already.  The questions at my planning meeting in early July were almost identical to the ones I posted here.  The focus was entirely on daily function and I stress you need to present to them what your worst days are like.

The primary focus is proving permanence (lifelong) of your 'psychosocial' disability (mental health diagnosis)  even if it is episodic,  and going into detail of the way it effects your function in the five areas that are on the initial application form (which I hope you kept a copy of).  There has to be significant functional impairment in at least one or two of those areas.

To prove permanence my psychologist had to report something like .... even with ongoing therapy it would only 'ameliorate' my symptoms and help me manage better daily, that it would not be a cure as such. 

Truly hoping that there is plenty that helps you in this thread and wishing you well  for this stage of the process.

[eth]

For anyone preparing for a planning meeting or starting their application I found the page numbers on this thread of really helpful suggestions that were spot on for me

p56  Mapping My World booklet, Endeavor Foundation

p57  List of questions you will be asked at the planning meeting

@CheerBear I realized you already saw them.

@JasJac @Queenie @Tight-Control

[eth]

I've only had to go on the myGov website once, to activate my plan.  NDIS sends you an access code when you get your plan.  My Plan Manager helped me and since then she takes care of all invoices, getting the funds from NDIS and paying them.  If you ask to be plan managed and it is approved it will be funded in your plan.  It gives you the most freedom about what supports you use (compared to Agency managed where NDIS does it all and you have to use NDIS registered providers), while at the same time removing the daunting and stressful tasks of self-managing.  There is information about these 3 choices re managing your plan on their website.

[eth]

Hi @CheerBear  did you get a good plan with enough funds to do what you need and want to do over the next 12 months?  How are you going with putting supports in place?

[CheerBear]

Hey @eth. I received significant funding in my plan (I mentioned an approx amount in another thread when it came through) which was enough to kind of shock me a bit and I'm really thankful for.

I am self-managing but have been funded for some support coordination to get me started so very recently I met with a support coordinator. We realised that a big chunk of my funding (around half I think) had been allocated to support I didn't ask for, don't need and won't use which would have been much better placed in a different area which I was given no funding for (as far as I can remember as I was a bit batty at the time) despite asking for and giving evidence of needing 😖 The support coordinator was fabulous though and seemed pretty confident that with a plan review we should hopefully be able to switch it over and make it more helpful for me.

While I wait for that I can still use some of my plan including funding for my psych which was really important to me and some social stuff but that one will need to wait until the kids go back to school. I have enough to see psych more than once a fortnight but will use it fortnightly unless I need. I have no idea how to go about doing it all though and with the Christmas break there's a bit of a gap as far as support to do that, so I'll either get another mental health care plan to get me through (funny considering how much is there in the ndis plan to use if I could just figure out how to use it!) or I will wait until someone can help me.

I am yet to see any benefit from the ndis at all but am slowly getting there maybe (not without some hiccups and bumps along the way!).

Long story sorry! Thanks for asking though 🙂

[eth]

Hey @CheerBear  congratulations for your overall result - you deserve it.  

As far as I know (from something that happened with my plan) funds that are in 'core supports' (ie not capacity building or assistive technology) can be moved between categories within core.  Maybe that will help you.  

I hope self-managing works well for you.  I know it would be beyond my capabilities.  You might want to look at HireUp for support workers.  They are all independent.  It's a brilliant set up and has plenty of people available over the festive season.

[CheerBear]

Thanks @eth 🙂 We had a look at whether it could be transferred and I don't think it can. I think it needs to be changed from core to capacity perhaps (I have no idea really as it is a jumble of words at the moment - I was in a kind of lala not listening land at the meeting 😏)

I have my plan in my hands and can see that it isn't half the funding as it can be switched between things like daily activities and social and community participation, but it is way more than I need in that area and not enough in another. The words "line items" is something I do remember from the meeting. It'll come back to me, or not, but I'll figure something out eventually.

My big worry with the ndis which is kind of where I sit at the moment with my plan, is that my needs fit somewhere between assistance and support with daily activities, and crisis support (area mental health services). I need community mental health outreach kind of support which I will no longer have, at least until I can get things sorted through my plan.

The self-managing is beyond me unless I have some support to learn and familiarise myself with it all, but once I do it a couple of times I should be right. Right now it is waaaaay overwhelming though!

Thanks for the suggestion about HireUp. When I next properly look into it all I'll try and remember to check it out.

Thanks again for all your support and encouragement with this eth. It's been so helpful to have you share your experiences and knowledge.

[eth]

Maybe searching for mental health trained support workers might help you bridge that gap @CheerBear.  Or your psychologist might help you put that kind of support in place.  

Also I think if you have funding for a Coordinator of Supports part of their role is to help those self-managing to learn how.  It's probably a capacity building line item that they'd charge for on top of getting their payment for CoS direct from NDIS.  Dunno, just maybe.

It's such a steep learning curve isn't it... brave you!