Lived Experience Forum

[eth]

Sorry to hear that @Queenie   Glad to hear you didn't get scheduled.  It's much better if you go voluntarily, as I know from experience - I've had both in my past.  I'm sure this is a good enough reason to ask NDIS to postpone.  I would be calling them and telling them in advance just to be sure they reschedult and don't try and have the meeting without you present.  Sending you all my best wishes for good support when you do go in, and good follow-up support when you come out.  Hang in there mate.

If you want to talk with me about your fears you can.

Take care.

[Queenie]

Good point @eth . I'll give the LAC and NDIA a call in the morning. 

[CheerBear]

I'm meeting with a new support coordinator this morning with the hope that they will be able to provide the kind of support I need to make my way through my NDIS mess, including finding a support worker/s who is suitable and helping me get through my plan review (whenever that happens).

I've been having so much trouble with my current support coordinator that it has reached the point where I can't think about it at all, or talk to anyone to try and sort it out, without getting myself so worked up I become totally fried. I've almost completely given up on the NDIS and am just about done with it. So far my experience has been nothing but frustrating, confusing and incredibly disheartening. The only benefit that has come from my plan yet seems to have gone straight into the pocket of an organisation profiting from a wonky system and my inability to navigate it.

I'm very much crossing my fingers and hoping that this new person/organisation can work with my needs. I think I have a bit riding on this working out today.

Big breaths 😖

[eth]

Hi and good morning @CheerBear   I'm sorry I didn't see your post yesterday.  I really hope your meeting went well and you've found a good CoS this time.  I understand your frustration with the whole shebang totally.  It really takes a toll on our mental health, which is why we have it in the first place.   Is the new CoS appointed by NDIS or did you choose them?  Soooo hoping it works out for you this time and that you get some good sw's as a result.

One of my sw's stopped coming over a month ago and my CoS still hasn't arranged for me to meet the one they want me to have instead.  Having a meet and greet before going out with someone I haven't met has been one of my stipulations since the start of my plan.  I'm getting frustrated with it too.  There's another issue about what line item numbers (from NDIS pricelist)  I am being billed for too.  Some item numbers haven't been used and some have had to be juggled (within core funds can be moved from 1 category to another).  I'm concerned how this will affect my review for my next year's plan which happens in about 9 weeks.  I want them to start using the unused line items  so it doesn't look like I don't need them.  They're all doing a range of stuff with me including daily living activities and health and wellbeing activities on top of community engagement, but are all charging it all as community engagement.  I shouldn't even have to deal with this, but CoS and plan manager don't seem to think it's important.  I'm sure it is, based on other people's experience in the fb groups I'm in.

Sending strength and perseverance to all on this thread.  @CheerBear @Queenie @saturnzoon @Appleblossom 

[CheerBear]

Hey @eth and thanks for your reading my vent and for your reply 🙂 I was flipping out yesterday worried about it all but it turned out to be one of the most fun and chilled meetings I've had with a new worker person!

I found the organisation myself. It is one that only does support coordination which was really important to me so I could try and avoid the conflict of interest that seems to be happening so much when big organisations focus on in-house referrals even if they're not in the best interests of the person needing them. He was really easy to talk with (he had a potty mouth which I do well with 😆) and lots of similar views about the NDIS, mental health services, mental health etc. I think it is going to work as well as anything so I had a really enjoyable moment sending my old support coordinator a message to stop supports. It was a big relief and a big ✔ off one of a few tricky but important things I am working on this week 😁🎉

I'm sorry you're having trouble as you are. It's so not right to have to deal with the issues you are when you are supposed to be receiving support to manage it so you don't to go through all of that stress.

It's all a bit 😐:face_with_rolling_eyes: sometimes!

[eth]

  @CheerBear !!  So glad to hear you have found a good match and are feeling hopeful again.

[Appleblossom]

Hi @Queenie @saturnzoon @Former-Member @CheerBear @eth 

I finally have a date for a plan and will attend with my current mh worker, which is great.  It will be the first time in my life that I have had a companion with me for major decision making.  That alone is huge for me.

I am very sad and concerned that my son has had a lot of difficulty communicating with ndis people and is losing hope of it being helpful.  He does not want my help to manage it, which is fair, given his age,  and I respect him being determined to deal with it himself.  I did have to send a panicked email over a month ago to his provider.  We will see how things proceed.

[eth]

That's excellent news about you having a date for your planning meeting @Appleblossom . Let me know if you want any suggestions about preparing for it and what to take with you.  Endeavor Foundation has a great booklet that helps get ready for it.

Hoping the situation improves for your son.  I get that he wants to do it without your help, and hope that works out for him.  My adult child is the same on that.  I can't even discuss my own NDIS stuff with them.  Mind you over recent months our conversations have been very one-sided - it's all about them  They don't even say 'how are you Mum?'.

[Appleblossom]

thanks @eth 

I began by asking gp to do a letter of support and gave her a pro forma letter.

My son just had a call with his co-ordinator and seemed optimistic about getting some benefit from it.  Today is the happiest he has been in a while.  He even offered me a hug this morning before he got the good ndis news.

Will focus on ndis in next few weeks. I have a few books about planning.  Hearing about your social worker supports helps, as although I am a battler and keep putting my foot in the ring... some people wanna take a swing at my mug ...lol ... need to keep processing stuff... have to learn the teflon deflect ... in the moment ... and not weeks later ... getting better at it tho.

[eth]

That's lovely about your son today @Appleblossom .

Sorry if I confused you, sw is support worker (most often a peer with lived experience and not much educational qualification) , not social worker.  The latter will not be covered by NDIS unless all mainstream funding options have been proven to be exhausted and a clinician reports that they are needed and why.

Glad to hear you have resources about planning.  p56,57 or 58 (can't remember exactly) of this thread has a list of questions you will be asked by the planner.  It's almost exactly what I was asked by mine and an invaluable way to prepare.  Best wishes for feeling strong and clear about what you need from them.