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Thread: My nightmare with the NDIS process.

  1. #1
    Join Date
    Jul 2012
    Location
    Tecoma Vic
    Posts
    8,493

    My nightmare with the NDIS process.

    I have lost 6 months of valuable time due to a very difficult NDIS planner who is uber anal and sends every thing to a revue panel and an OT supposed to be representing me. Things like I wanted a walking stick holder for my Wheel chair. NDIS planner sends it to a review panel , comes back justify why the tax payer has to pay about $150 for this, My OT didnt explain that I use a stick to hobble to the chair and use it to open shop doors or gates. My OT was on an ego trip, instead of just justifying the reasons ,no she said they don't really need to know and were being difficult.

    We sacked the OT and now have a really good one and has addressed all the NDIS justification requests with back up evidence.
    We have complained to the NDIS and have requested another Planner and have lodged a complaint.
    My plan manager is disgusted in how things have dragged out through no fault of my own and how I have become a victim of the system that is there to help people like me.

    So far I am waiting on Bathroom modifications so I can use a wheeled commode for toilet and showering. At present I have to sit on a chair inside a small blowup baby's swimming pool whilst Heather sponge washes me and rinses me off .
    I have funding allocated for outside help to come in to shower me, NDIS asked why I hadn't spent any of the funding?
    Hey I DON'T HAVE A SHOWER BUILT BY THEM YET, Being high risk I couldn't have people in the house due to COVID risks. Specialist orders.

    I cant access out side safely and take a risk, due to no safe exits from house. Waiting on mods, so I can get wheel chairs into house. Doors need widening for wheel chair access, I have to park the hire wheel chair in the garage as I cant get it into house and have to struggle
    to and from garage without passing out and failing. I'm a high fall risk. Waiting on my own bed, I need help with toileting ( embarrassing)

    We have requested a special unscheduled review of my plan, which they have agreed to but there is a wait until mid December.
    I can have a personal assistant in my funding, but what's the point if I don't have the aids I need to use.
    I am deteriorating at a fast rate and it's effecting my mental state, I've been patient, but now getting fed up as I have to deal extreme pain as well and all these things I am supposedly getting would just make it a bit easier on me and Heather, Covid has played a part in it, now Christmas in upon us and tradies wont be available when the green light is given.


  2. #2
    Join Date
    Nov 2011
    Location
    Brisbane
    Posts
    385
    Hi Mario,

    Keep the chin up, you will find with NDIS there are good and bad people at every step, you just need to make sure you keep the good ones. We have been through many OT's, plan managers for my daughter, and every time NDIS touch the plan they let say they right royally screw the plan up.

    We are waiting for a full review again as the last one who touched it at NDIS decided to go back to the original plan and takeout everything we had managed to get into the plan over the last couple of years because they were still using the assumption that she was at school and didn't need all of the care she was receiving.

    I know when we get to do the review it will get fixed, like the last time they did this.

    Just don't let it get you down.

    Richard

  3. #3
    Join Date
    Jul 2012
    Location
    Tecoma Vic
    Posts
    8,493
    It's also the humiliation you have to go through.
    Having some one wipe you bum because you cant, wash you and dress and undress you, needing someone put you to bed and tuck you in, this is the stuff I mentally struggle with.


    My plan is very generous , but being unable to spend the funding due to circumstances beyond my control, it was brought up that I hadn't spent much, at the upcoming review my manager is going to make sure I don't loose anything.

    I used some funding, I now have a really clean garden, It's got too much for us, so we had 2 people for 7 hrs each do my garden, hardest workers I've met. That made me very happy to see weeds and my 3 lawn areas mowed bushes trimmed back etc etc.
    House cleaning, dish washing general help , personal assistant , companion, are also funded, I didn't want strangers in the house during covid too risky.


  4. #4
    Join Date
    Feb 2010
    Location
    Melbourne
    Posts
    4,838
    Ring your local pollie Mario. If they don't help call the opposition one. Keep kicking until what should be done is done mate.

  5. #5
    Join Date
    Jan 2013
    Location
    Mt Barker SA
    Posts
    1,145
    Oh gosh Mario, I'm sending a gentle hug, NDIS definitely need to fix some problems like this. Its really awful that they don't seem to have specialist staff trained in disability care, needs etc. (They hire 'bankers' according to a report I read) So it's all whose desk it falls on definitely some good folks in there too. Glad you fired your OT, they were not doing their job at all My nightmare with the NDIS process.
    I hope things start happening for you now and the things you need are built. Do you have consumable in your plan? If so, you can use that for the walking stick holder, low cost AT they can't question. I am self managed though but am sure that area of your budget is the same across all plan methods.
    The personal care stuff is the most difficult challenge to feel ok about My nightmare with the NDIS process.My nightmare with the NDIS process. but you are no less of you for the care and help you need there. It might feel it, and the loss of dignity feeling, (I understand from requiring help similar at times) but those who provide that for you do so without a second thought and do not see it as a burden or a loss of dignity, they share and feel your heartache in needing the help, and will feel good that they can help in such a way

    Im sending an extra butt kicking ndis way My nightmare with the NDIS process.

  6. #6
    Join Date
    Jul 2012
    Location
    Tecoma Vic
    Posts
    8,493
    Quote Originally Posted by Epic_Dragon View Post
    Oh gosh Mario, I'm sending a gentle hug, NDIS definitely need to fix some problems like this. Its really awful that they don't seem to have specialist staff trained in disability care, needs etc. (They hire 'bankers' according to a report I read) So it's all whose desk it falls on definitely some good folks in there too. Glad you fired your OT, they were not doing their job at all My nightmare with the NDIS process.
    I hope things start happening for you now and the things you need are built. Do you have consumable in your plan? If so, you can use that for the walking stick holder, low cost AT they can't question. I am self managed though but am sure that area of your budget is the same across all plan methods.
    The personal care stuff is the most difficult challenge to feel ok about My nightmare with the NDIS process.My nightmare with the NDIS process. but you are no less of you for the care and help you need there. It might feel it, and the loss of dignity feeling, (I understand from requiring help similar at times) but those who provide that for you do so without a second thought and do not see it as a burden or a loss of dignity, they share and feel your heartache in needing the help, and will feel good that they can help in such a way

    Im sending an extra butt kicking ndis way My nightmare with the NDIS process.
    I have heaps of consumables funding, heaps of Core, its the other stuff which is NDIS has to approve that is the hold up.
    The other night I was sitting on the toilet with a hired over toilet chair, which is really unless for my situation, I can only go once a week with over doses of laxatives which take 4 days to have an effect, I started to get excruciating back and neck pain, the ones were you scream. I was unable to stand up and get some where to lay flat to relieve the pain. It's stuff like this, if they would hurry up with the special $9K wheeled commode we trialed Heather can wheel me in and out.

    I wrote to the NDIS a while ago about personal Hygiene, I soiled myself and not having a shower to use, I asked them how long do they expect me to sponge wash for? It fell on death ears, another reason we asked for another NDIS planner. The old OT would say to me you are very patient, well my patience has reached its limit. I don't want to live like this . I don't want to go to a care home. I want what we agreed to in my planning that allowed me to access the community and live life as independently as possible,


    hooray I finished typing this as i keep losing what I type due to knocking buttons, My hands no longer work that well. I'm losing speech also.


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