05-06-2019 01:20 PM
Thanks @greenpea Yep I've got that. Such a dichotomy between what we need to present to NDIS (our worst days and episodes) and trying to live focussed on models of recovery.
05-06-2019 01:29 PM
@Appleblossom you're right, it doesn't revolve around the total $$ value of one's plan, as I know only too well. It's about how you can use each category of funding, and really comes down to what line item numbers your service providers invoice for. e.g. almost all my support has been billed as community engagement, when actually a fair bit of it has been with daily living activities. Plus there was a chunk in Capital (for equipment and consumables) that I did not need and have not used. In actual fact even tho' I've had as many hours a week of support as I was told I could use right at the beginning of my plan (by the LAC), I have used less than half the funds allocated to me. It will be interesting to see how that affects what is allocated this time.
So many unknowns at the moment.
Glad to hear your GP has listened to you at last and sent you for some more in depth diagnostics. I really hope they get to the root of your neck problems and you get some treatment and real relief.
05-06-2019 01:38 PM
I had to change Gp to get that. Only seen her twice. She is super logical and had mentioned her interest in mental health, She has a separate psychology degree on top of medicine and about 70.
I was so upset about the support letter my old gp did for the NDIS, and so glad that @Zoe7 said she doubted the gp was really working for me. So it was Zoes support that gave me the impetus to mention it out loud, otherwise it would be relegated to more of my inner ambivalence and inner turmoil.
Thanks to both of you in helping me raise my expectations and my quality of life. I am inclined to settle too easily.
05-06-2019 04:35 PM
I am glad my support helped you @Appleblossom but it was you who made the decision and did what was right for you - you did that Hon and that is a very brave and reasonable thing to do so well done you. The outcome has certainly been a good one for you and that I am super happy about. So glad you have that support now Apple
06-06-2019 08:31 PM
eth Hey there, thanks heaps for responding to my dilema. I am there with you when you go in a couple of weeks for your review (in spirit). Try and read the pricing guide and get some sort of understanding of what things are and how they might apply to you, this is where I am at the moment. Speak to people who know the nasty side of the NDIS and who come across as super confident to support you in your plan. Reherse your review meeting to establish any areas which might be glitches. Write down points that you want to emphasise for the closing and have them printed out as a copy if you think they would help. Ensure the LAC is actually taking notes the whole time you are talking in the review and can reiterate what you said verbatim, OK. This shows they are listening and are putting in all the information you feel is important. With anything to do with home mods, capital purchases make sure that she/he repeats each item that you have noted and supply all OT support documentation and quotes. This is as much information as I have in my head... afraid my head doesn't hold much information anymore, sorry, but I hope this little bit helps. OK... Be ready to have your plan cut, they are cutting everyones plans and removing travel unless you can put and damn good justification up front. If you do this they won't be expecting is... OK. I am wondering if we can all get together and do a class action against the Government for failure of duty of care through non supply of funding and facitilies as and when necessary. It might be something a solicitor who has the you know what's would tackle....... blah..blah... sorry Just me talking out of turn. Good luck. OK
07-06-2019 09:04 AM
Apple I'm proud of you for asserting and advocating for yourself - and with good results by the sound of it. It's not easy to do that when dealing with an authoritarian organization like NDIS, or someone like a Dr who can seem to be in a position of power. Well done!
@PurpleKathy sorry for the delay but I only get notified if I am tagged - you did mention my name, but to tag in a way that I get notified about you need to put @ first and a drop-down box will appear where you can select my name. Hoping it starts to work for you as I see you have a lot to contribute here. Thanks very much for all the suggestions - I'm onto most of them but there are a few I haven't done yet and also no chance now to have a rehearsal. You give such good advice and I'm certain your post will help lots of other people. Thanks again. I'm really glad you've joined this discussion.
P.S. no such thing as talking out of turn here!! This thread is open to any and all NDIS chat.
11-06-2019 07:19 AM
I have a support worker today and have the psychologist for the first time in 3 weeks. Usually I see her weekly but she's been off sick. I really wish I'd had those sessions while I prepared for the NDIS review tomorrow but so be it. I don't get to talk about it much as sil and bro are really busy and also supporting 2 other family members now. So different from the level of involvement of sil and bro and disability advocate and even solicitor last year getting ready for an administrative appeals tribunal hearing. Last night my brother asked to read a couple of my reports and hopefully we'll get to talk about them this morning. I guess I'd been waiting for him to show his interest rather than taking it to him. I also very belatedly asked him if he wants to come to the meeting. He didn't reply last night so I don't know what he thought. I should have asked him sooner but he's been away a lot. Sil is def coming with me, and my coordinator of supports, but I don't have much faith in the latter. Hopefully she'll surprise me on the day. I had hoped for some kind of meeting of 'my team' before we go to the NDIS planner but it's not going to happen. I asked sil last night and she said let's have lunch on the day. The meeting is at 2pm. Talk about leaving it til the last minute. One of the reports I need hasn't been done at all. And there is some stuff to clear up about funds not used from this first year and why that has happened. But the main issue for me now is wanting to be across all aspects and on the ball verbally on the day. I find it hard to be assertive and advocate for myself once I'm face to face with an authority who has some power over me.
Plus I just feel like escaping from the whole matter. Should be reading all my prep this morning but am postponing it til this afternoon and hoping I'll have the energy to do it then.
11-06-2019 01:48 PM
Hello and welcome @PurpleKathy
Best of luck with meeting eth.
My last session with support worker from pre NDIS org has just finished. I was really impressed with their approach and staff. I am open to learning about how the CoS and OT will be able to help me. My plan is not quite as extensive as yours, but still substantial, so I am starting with hope. In the meantime in a bit of limbo .... I have seen it as mostly a fun dance, but ...
12-06-2019 06:24 PM
Must be the time of year for plan review meetings. Mine is this Friday. I’m going to ask for support coordination and also Ndis funded (with a copayment from me) dietician as I’ve been formally diagnosed with metabolic syndrome as a result of medication. I figure the worst they can say is no.
12-06-2019 08:25 AM
Hi @Appleblossom so good to hear you are feeling hopeful about it all. That's great.
Hey @Queenie will be thinking of you tomorrow. Hoping you are feeling reasonably prepared for it. I have metabolic syndrome from meds too. Dr said "pre pre diabetes". The pdoc has put me on a med that increases insulin response and lowers blood sugar. Since I've been on it I've snacked less between meals and craved sugar less. Lost a small bit of weight, but it's a step in the right direction.
I've just realised I don't have the final versions of 2 important documents that detail my current goals and steps needed to reach them. If I can get hold of them this morning from sw and CoS I'll feel a lot more confident at the meeting being able to refer to them. Have just msgd them both about it. Have to wait til they start work today (not even sure if the sw does work today) and hope for replies. Just one more glitch in a long series. The other support org that gives me a sw hasn't done a report at all despite being asked to weeks ago. I will be cancelling my service agreement with them pretty soon. The only reason I stayed with them is that the sw herself is really good. But her team leader is useless. I didn't want to put him offside before the meeting because I needed his report, which he hasn't done anyway. It's the last straw. That sw has now registered with another platform that manages freelance sw's so I'll still be able to have her and she'll even get paid a little more.
Counting down the hours now .....
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