NDIS-Completely depressed feeling overwhelmed how can you beat them?

[PurpleKathy]

Hi there everyone, I have sure that you all have some terrible all the way through to horror stories when it comes to dealing with the NDIS.  At the moment I am having a really terrible time which is taking a toll on my mental health and you know that damn black dog is sitting real close everyday.  As a result, my depression is sinking further, crying daily is the new normal and the thought of NDIS brings tears.  I had a plan, a reasonable plan for the last two years.  This year a NEW LAC (Local Area CoOrdinator) decided to do my plan.  I usually have my support coordinator with me, but she had just had major surgery to her knee and was in considerable pain and not in the right frame of mind to support me on that day.  The LAC didn't ask many questions, I was so nervous I gave her the outline as per my support coordinators printout and was really happy the interview was over... Since then everthing has gone down hill.  The LAC appointed herself as my Support Coordinator.  I asked if I could have a copy of my plan before it went for approval, the answer was a flat NO, our system doesn't allow for this. So where is the flexability, the ability for the client to ensure what is being sent through is what you want, where is our control?  So how did the LAC become my support coordinator, I would NEVER have approved that if I could have viewed what was being sent through initially.  After a phone call this week, I was told that the LAC did not allocate herself as my support coordinator, rather the system did????

My question to you, has your LAC nominated themselves as your SUPPORT COORDINATOR, and if so did you ask them to be?

You see as a result of this LAC, her inability to communicate, to have a rapport with the client, to have any form of understanding of disability, my plan was effectively cut in half, my choices removed, my travel removed(even though I have no car, nor public transport for 50klms), but the worst of it all is that I now have NO VOICE as my support coordinator has been removed!  So now I have requested for a plan review and have been told that I will have to JUSTIFY why I need a support coordinator???? My support coordinator was my voice, I don't consider that I am able or willing to have the mental strength to attend a review, so what happens now?   Anyone in this situation, I truely understand that desperation of how the big organisation crushes you down to the point of utter hoplessness.  I am trying to stay strong but every waking moment is extremely difficult to say the least.

[outlander]

hi @PurpleKathy and welcome
i dont have any experience with NDIS but @greenpea and @eth have and may be able to help you. i think there is a NDIS and its challanges thread as well and your more then welcome to join in there if you feel comfortable too.

[greenpea]

@PurpleKathy @outlander  Hi PurpleKathy and outlander  🙂 Yes I have had a interesting experience with ndis .... from being continually frustrated and annoyed to feelings of just giving up like I am right now. It is all very overwhelming and we are definitely not alone. The formite who really has a grasp on all this ndis stuff is @eth  imho. She has a thread which has been going for awhile regarding her dealings with it. She is a lovely lady PurpleKathy who I know will be more than happy to help where possible. I wish you luck on your ndis journey. greenpeaxx

[eth]

Hi @PurpleKathy  and welcome to the forums.   Thanks @outlander  and @greenpea .   The thread the others refer to is called "Anyone started with the NDIS?"  here :   https://saneforums.org/t5/Our-stories/Anyone-started-with-the-NDIS/td-p/157210/page/73   but  you are further down the NDIS trail than I am so probably already know most of what is shared there.  I'm just preparing for my first annual review at the moment and what you are going through is some of what I fear.  

Initial thoughts re your situation :  Do you still have a current service agreement with the coordinator of supports you've had the last 2 years?  Can you do an appeal - 'request for review of a reviewable decision' they call it - ??  I totally understand how depressing the whole business can be and how that affects our ability to self-advocate.  Do you have any 'informal' supports (friends or family) that can help you while you go through this, even just with the paper work?  Otherwise I suggest looking at 'Disability Advocates' (google them) which are in every state and are free.  I had one and her support was invaluable.

In the course of my application I went through extra supporting evidence, internal appeal (review), complaint, and eventually external appeal through the AAT with a disability advocate who also got me a legal aid solicitor.  And the NDIS accepted me a day before the tribunal hearing was scheduled.  So I know what a'holes they can be.

And the roller coaster of emotions they keep you on.  I really feel for you.

In my plan review report that I did with my CoS this week we have requested CoS again, using the same words that are on my first plan where they were approved, but it seems you are approved for a CoS, but are disputing who it should be.  Have you had or can you have communication with your old CoS about whether they still want the job and if they can support you to get the change you need?  

I'm not sure what else to suggest but am happy to be a sounding board for you if needed.

Just tag me by typing @ in front of my name - a drop down box will appear and you can click on my name.  e.g.  @eth    Take care.

[eth]

@PurpleKathy  should add that if you do do a review application it will really help if you have a clinical psychologist or OT do a report on the functional effects of your diagnosis ('psychosocial disability') - in the 5 areas of function that are covered in your original access request - hoping you still have a copy of it and all documents to date.  I'm said to be OCD about keeping reports etc but have had to refer to them several times so I'm glad I'm that way.  As they say, 'nothing about me without me'.

[PurpleKathy]

Hi there,normally when not stressed and as disstressed as I have been I would be able to digest your message and understand it, however I just need to confirm what you are saying please. I still have a copy of the inital report from my psychologist and GP regarding my limitations and situation regarding both my physically and psychological health which was presented to the NDIS.  Like yourself, I keep ALL documentation, have it scanned and saved in my NDIS paperwork folder on my computer. Is this the paperwork you are speaking of?

Also, I don't know what games they are playing.  My son had his regular yearly review the otherday and I had to deal with the less that desirable LAC.  She spoke like nothings happed, very chery and happy.  However she pushed my buttons in making a statement that they didn't have the paperwork to show that my son was disabled.  I replied, 'well then there is a considerable amount of incompetency in the ranks of the NDIS isn't there, if you cannot find a file which initially permitted him entry in the first place.  I'm damn sure I'm not going to be representing the file based on your in ept paperwork failures'. The stopped talking about it.  By the way, when she was do the plan, the LAC has a person who was monitoring her performance, so she said. Hmmm.

[PurpleKathy]

Hi eth and thanks to @outlander  and @greenpea.

In response to your questions. I have a plan at the moment, this is the mess that the LAC left me with, which does not allow me to do much of anything. For example we are not considered remote even though the nearest town for shopping is 50klm away.  I do my shopping by catching a ride with my son, who is always rushed.  My previous plan allowed me to go shopping with carers, enjoy this time and actually have a nice experience.  I did this one a wee.  As a result of the LAC wrecking my plan and NDIS changes, I am no longer entitled to have TRAVEL. Next, my support coordinator was removed by the LAC nominator nominating herself as the support coordinator.  I have found out that she cannot do this, but no one who responds in the NDIS with let my preview coordinator act as my representative. This affects my mental health greatly as I depend upon my support coordinator to do all the chasing for me and to be on tthe end of the phone for a talk if there aren't quite going right.  I have put in an application for a Review of my Plan Review, this was back on the 24/3/19 and it is only now that I have had one email to try and let me know what my money can be used for. Good eh!!! 😞 I have some light given to me this week as a social worker has said she can help, so I now have someone who is on my side and who I think can act as my voice to get things straightened.  With regards to my support coordinator again, when I spoke to NDIS this week, they game me more greif, as they said I would now have to justify why I needed a support coordinator as I didn't have one on my current plan, even though that was the error of the LAC... seems they can move and change things according to their will.  My advice to you, tape the session, and keep it for your records.  Thanks for your support, every little bit helps as I feel so much like I'm fighting against the world, and they are gonna win. 😞

[eth]

Hi @PurpleKathy  very sorry for the delay in getting back to you, but as I was not @tagged  I did not get notified of your posts.   Yes that is the sort of documentation I was referring to.  Very glad to hear you now have a social worker helping you.  They could possibly be another person who could write a report for you, I'm not sure.  Worth asking them about it.  I really feel for you in the way you are being di**ed around by the LAC.  I fear a similar change being pulled on me - my annual review meeting is in one week.  I do have a few new reports that will be lodged with NDIS before then but I know there's no guarantee that anyone will read them before the meeting.  My current coordinator of supports (from an external organization) and my sister-in-law who was my carer last year will both go with me.  Really wish I was feeling hopeful about it but I'm too anxious to feel much else.

[Shaz51]

@Alone 

this might help you '

@eth, @PurpleKathy , @greenpea , @outlander 

[Karli]

Hi PurpleKathy,

I receive NDIS support as I am blind, I am self managed, however when my review is due I get assistance from one of the blind peak bodies. eg: Guide Dogs. The best thing I can suggest is contacting the peak body associated with your disability and they can generally assist with reviews and if you have complaints with the NDIS system. Also there are going to be a number of changes next year with they way reviews are conducted which I believe are going to affect many of us on the NDIS. check this web page out https://www.ndis.gov.au/participants/independent-assessments/independent-assessors