My Disability Matters Club

NDIS prison

So I was approved for NDIS funding to help with repairs to my mobility scooter and gardening. That is what is on the forms filled in by my specialist to get funding, and it said that I was fine with everything else. At the interview they said that was fine, if that is all I needed then that is what they would deal with and it would be easy.


They gave me funding with no instructions on how to access it. When I eventually managed to get to speak to someone, I was told that I needed to see one of the agencies that would tell me how to get started.


When you see someone from the agencies, they sign you up saying it is just so they have your details on file and is not binding. Then at the end they pull out a sheaf of papers saying they are the rights and obligations of your contract, but they have to go on your file and you cannot have a copy of them because NDIS say so.

BUT NDIS say they have an obligation to give you a copy of everything

The day after this, still with no information on being able to access the money, I emailed the office and told them I was not impressed with not being given any information or answers. They then informed me that I was signed up with them for the duration of the plan. First I had heard of it. I told them to rip it up because I was not agreeing to go with them and was told it takes 2 weeks to cancel it.

Then the harassment starts. I was “interviewed” by their staff on everything not relevant to my plan. They wanted to know how often I was using the toilet, how long I spent in the shower, why I was not using incontinence products (which is probably because I am not incontinent, and have never been since toilet training about 45 or so years ago), why I looked after myself instead of someone else (because I am still capable of it), who does my shopping, banking and bill paying (me) and other totally irrelevant intrusive questions. They would not accept that such questions were nothing to do with them

I was then told they they were going to take control of telling me when I was to have dosages changed or when I was to get different meds. I quite rudely informed them to shove it because I only take advice on meds from my doctors, specialist and pharmacist. According to them, an untrained person from their agency can tell better than a qualified person what I ñeed.

I was also informed that I was obliged to get a Companion Card under NDIS to take others out with me for free. One of the first qualifications for that is that you always need someone to help you. I do not need assistance, but they kept insisting it was just so you can take people out for free. I contacted Companion Card and they set out the criteria and confirmed that I was not eligible. I was then told that I was a liar, the email from them was wrong because she knew differently.

They then informed me I was to set aside a half day at least because they were sending someone into my home. This was after I had told them the contract was void and they were to not contact me. They wanted to come in and decide if I was allowed to live in my house or not, whether I was to be made to have someone move in with me, check on how I shower and use the toilet, decide if my bed and chairs are what they think I should have etc. I told them they were not to come and they would not be allowed in. They rang and told me when they were arriving, so I told them that if they set foot on my property I would have them arrested. I was sent a text to confirm they were coming. I contacted the police and they made sure the company was put on notice that they would be arrested if they tried to set foot on my property.

They then sent me an email telling me that I was to travel down south at my own expense and pay accommodation at my own expense to take part in some off road dune buggy event. This has never been of interest to me, and by now it was a month since I told them to cancel everything. Only after threatening legal action against them to get released did they eventually agree. That took from September 17 to October 14. Obviously they have no idea on how long two weeks is.

All this time I have been trying to get onto NDIS to have them arrange so I can use the funding as intended, because I needed some replacement tyres before hey burst from wearing out. The one time I did manage to get onto someone I was told that I could get it done as it was urgent and submit the receipt for reimbursement. Wrong again.

Yesterday I finally got a call back after 2 months of trying from NDIS. During this time they had a rep come to town (I am in the country) to tell us how well the system works for us because all the agencies say so. Every single person there had complaints about how we had all our rights taken away and were much worse off under he system. This is especially true because they do not have registered providers here, even though we were told they existed. For everything you have to travel to the city at your own expense or have your budget eaten into by paying their travel. The provides they use overcharge as soon as NDIS is mentioned. Oneclady said she took her husband for therapy that had been costing $60 a time. They charge his account over $150 for the same thing.

Another thing were told is that if agencies managing things does not work you can change,all or part to self managed. Yesterday I was informed that it is not possible because you are locked in for the duration of the plan. Changing would require a full plan review which is costly and takes to much time so they will not do it for such “trivial” changes, and I have to wait until at least next June.

They also said that when I was told I could get my tyres replaced as it was urgent I was told wrong. They now tell me they willl not pay the $115 I had to take that was for my power bill because I did not have an agency arrange it. To get a simple maintenance thing done I was told that I first have to have a physio and it assess whether I am allowed to have new tyres or if I have to replace the whole gopher. Their opinion overrides whatever the company that provides and maintains the equipment says. I also have to submit to having my whole lifestyle and house examined by them because they want to know exactly how I live. They also said they want to see if the gopher will fit inside and around the house. Except I do not use it inside, and it is stored in a garage when at home! That does not matter to them, all they want is to stick their noses fully into my business and take away my privacy, dignity and rights.

They have already tried to limit me in what I can do. Apparently being disabled means you are not even allowed to do your own washing or have any say in where it is done. I am supposedly not allowed to have the laundromat that has a laundry service do my bedding even. They will employ someone to do it. Of course, that will have to be taken from elsewhere in the plan, either gardening or gopher/mobility funding at a higher cost because it was not on the paperwork that I needed it. Currently I can get all my bedding (sheets, blankets, even pilows when I want) as well as towels  washed in industrial quality machines, dried, and folded all for under $25. And it is done within about an hour. But that is not good enough. I have to give funds to someone to take them to some unknown place where I do not know how clean or hygienic the machines are, have no control over whether they decide to use powders, liquids etc I am allergic to or anything else instead.

Sure, they keep telling me that the NDIS us great because it provides funding to do things for people living with disability. Except the funding is wasted by them and we lose our independence and dignity for not much gain. I am sure that it is fine for those willing to hand their life over to strangers and not do what they ate capable of. But do not sell it as better for all unless you say in advance all you are obliged to give up first.


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