NDIS stress is it worth it

Hi @Serenity1 welcome to the forums. Sending you strength and clarity including around NDIS stuff. I've had it for nearly a year. One of the really good aspects of having it has been funds for support workers to go out with (I have agoraphobia and social anxiety as part of complex PTSD with bipolar 1) and funds for weekly psychology. There is a thread I started called 'Anyone started with the NDIS? https://saneforums.org/t5/Our-stories/Anyone-started-with-the-NDIS/m-p/157210?advanced=false&collapse_discussion=true&filter=location&location=category:lived-experience-forum&q=Anyone%20started%20with%20NDIS%3F&search_type=thread

which might be helpful to you. It journals my journey from first applying until a few months after I got it and has some really useful information in it, especially pages 56 and 57 for getting ready for your planning meeting. Quite a few other people have shared about their NDIS journeys there too.

Feel free to ask me specific questions about it if you want to. When I first started out it felt like learning a foreign language, plus the NDIS website is huge and hard to navigate, quite overwhelming at first. There is so much I could tell you but I think answering specific questions you might have would work better.

It was a long battle for me, a roller coaster of emotions, but overall I'm very glad I persevered - I got $55000 worth of support in total.

I am sorry I will be honest and say I didn’t read your whole post as I am struggling a bit atm but the ndis is worth it once all the supports are in place and setup and ready to go but it is a huge hassle trying to set it up and honestly I think that is half the problem I have some funding that I cant use because I am having to much trouble doing the admin side of things and no one is around to help so I am just not getting support. But if someone is helping you set it up then I would say go for it. Also they don’t share any medical records with anyone else unless you give them permission.

@Serenity1 @Eden1919 I have a coordinator of supports and also a plan manager. I highly recommend asking for both. They have been crucial for me in finding supports, communicating with support organisations and taking care of the invoicing/payment part of it all, especially getting me support for things I didn't know I could use NDIS for.

@Serenity1 even a GP can diagnose complex PTSD - that's what happened for me. But you have to tell them your history in detail and how it effects you for that to happen. Same goes for psychologist and psychiatrist, both of which a good GP will refer you to. I had one GP for many years who didn't, but as soon as she left and I saw someone younger I was referred for both. However, my diagnosis of bipolar 1 was not until I was 46 years old (10 years ago) and it took a psychotic episode and involuntary hospitalization for that to happen. Long story short.

Re coping with the NDIS roller coaster - all I can say is that some days you just have to remember to breathe, deep and slow, and rely on your support person as much as possible. And tell them what you are going through. It might support your application for NDIS supports. It is hard, was for me at several turns in the journey, and still causes me much anxiety as I'm preparing for my 1st year plan review atm. There are fb groups that can support and advise you - just put NDIS on your fb search bar. I'm not allowed to say their names here for reasons of anonymity. I found them really helpful and a good source of resources and advice. I also reckon a psychologist is virtually essential as reports from clinically qualified people really help. They need to write a report that states your MH is 'lifelong and significant' and go through 5 areas of functional impact (the same 5 are on your initial access request - application form). I also recommend keeping copies of every single document and communication with NDIS (even the ones other people like your support worker do) so you can have a 'paper trail' of all interactions with them, deadlines etc. My policy on paper work is 'nothing about me without me'. If you are unsuccessful you can appeal their decision with further evidence and after that if you still don't get accepted you can get a Disability Advocate (google them) and do an external appeal through the Administrative Appeals Tribunal (google it too). I did all of these things.

I use it for support workers a few days a week to get me into the community, to essential appointments and errands, to exercise more, have a transport allowance, weekly psychology on top of that possible with the mental health care plan; too many goals I'm working on to list here - but having clear goals is also essential for your application process. I also get reimbursed for a physio based water tai chi group twice a week. And it also pays for the coordinator of supports and the plan manager.

That's enough for now. I still recommend reading the other thread as there's answers to a lot of the questions you will have in there.

Take care.

@Serenity1 yes some of the funding i can acess but some i can't very frustrating.

Hi again @Serenity1 My support was from my brother and sister-in--law - they were amazing. I couldn't have done it without them as I'd been isolated and house-bound for many years before moving into a cabin they built for me in their back yard. They are very special people. With having a support worker help you, just remember the NDIS is all about you having 'choice and control' and I believe that includes getting to see and have input on any forms or reports going to the NDIS to support your application. And keep a copy of everything if you possibly can.

I'll be away for a few days so if you tag me I won't see it til Monday. Take care.