Anyone started with the NDIS?

I understand your worry and feel for you @Bunniekins. Some sort of supported living arrangement might be possible as you approach that time of life. Probably worth researching and maybe talking to a psychologist and/or social worker about. That might put your mind at ease somewhat. Your local Carers organization might also be able to help identify options. I'm in NSW and don't know where you are so I hope some of these suggestions are helpful to you.

@eth Your suggestions have been a huge help thanks eth. I was planning to talk with his new psychiatrist about all of that when she takes over from Dr G. I am thinking for too long I have been hiding behind my computer screen ... it is about time that I started to deal with some matters.

I'm very happy my suggestions help @Bunniekins. And happy to encourage you any time. It's good to be as proactive as you can with both NDIS and doctors - I find making a list of questions before I talk to them is useful. Then you can refer to them if you lose the plot in discussion. And also ask for time to answer questions they put to you. Even get them to put their questions in writing (I tell them I have memory problems). I know it's really hard to be forward like this and that's why I get things in writing whenever possible.

@eth I have just started organizing myself with asking questions by writing them down otherwise I completely forget. I never thought to ask them to write down their questions ... that is a brilliant idea as it is great to look back on. I will do that from now on. For awhile there I would walk in and just smile and say 'I am alright' when clearly I was not. Thanks again eth 😄

@Bunniekins. I might not have told you but my adult child is legally blind so I was a disability carer at home full-time for over 18 years. They are just starting with the NDIS process now. They also have cPTSD, anxiety, depression and some other physical problems and are feeling overwhelmed and debased by the NDIS process already.

The big issue is that you have to tell NDIS how it is on the worst days, while trying to have better days yourself. Putting the focus on things as bad as they can be and trying to maintain a hopeful attitude is nigh on impossible.

Time for me to go now @Bunniekins but happy to continue this chat any time. Take care.

@eth Thanks eth. No you hadnt told me about your child. I always thought being blind would be the worst disability to have. The hardest to deal with. Kudos to you and your child.

Dont worry I have told them in how bad it can be and I must say the NDIS worker look shocked when I told in graphic details some of the things that my poor kidult has done because of his disability.

eth it really is bad at times ... really bad ... sometimes I fear for my life because he is so out of control. I love my son but I hate his disabilities.

Sorry to hear that @Bunniekins. I think I actually do understand how you feel. My kidult went through a couple of years of outrageous angry outbursts too, and I also feared for my safety a lot of the time. At one stage I couldn't stay in our home for a few months (while they completed year 12) - I would visit every 2nd or 3rd day to make sure they had food and bills were paid etc (neighbours were watching them for me and keeping me informed) - and I ended up having to get a behaviour order from court so I could return home. For the 12 month behaviour bond they were more reasonable but the very day the order expired it all hit the surface again. Not long after this they went to their boyfriend's place after a row and never came home. Here we are 10 years later, they've been married for 6 years and they are 'fighting fit and fiercely independent' and are now a parent ... but still have many issues and ongoing therapy. And also just starting the NDIS pathway.

I really hope you find some support from some of the things I've suggested in my other posts.

Thanks @Former-Member just saw your post edit. Plodding along, giving it my best shot and extremely grateful for the support I have. Maybe give your PIR person a prod (reminder) to try to move things along for you, or go direct and ring the NDIS yourself if you have your case number.

Sorry to bug you with the edit, @eth … just thought I’d better take out some stuff that had the potential to get me in trouble. I’m pushing for local supports now that I am staying in this area. I just hate that I have to fight for them. The public health system should help those who need it.

On the NDIS side of things, my support facilitator is taking me to meet with an advocacy group next week that specialises in NDIS appeals. They’re going to review my giant file and try to work out why it was rejected. They prefer appeals over re-submitting so I’m not sure what will happen there … I guess I’ll know more after the meeting.

I’m glad you’ve got some people on your side to help you, @eth. I really hope it all gets sorted (and in your favour) soon. We shouldn’t have to fight for help.