Hi,

A quick recap. I am a 55 yo participant with a long term psychosocial disability. I live on my own with no family or friend support. My elderly (80yo) parents live 90 min away (I lived with them all my life until a few years ago). I was struggling with my first job in 20 years, and I’ve also been struggling to deal with support coordinators who took advantage of me being on my own and took my support coordination funding without putting supports in place, and my house was flooding whenever we got heavy rain.

I’ve been on the NDIS for 2 years, 3 months now and had my first plan review about 2 months ago. I got my new plan earlier this month (October 2021). I still don’t have a reliable support coordinator.

It has been an absolute struggle and certainly not the NDIS we were promised that was all about getting help to reach our goals and live “a normal life”. When I was switched from community care to NDIS there was even a Government Guarantee that noone will be worse off under the NDIS!

Unfortunately I lost my job after 15 months of being on the NDIS as despite having had 5 support coordinators not one of them put any work supports in place. It was my first job in 20 years, and I lost it due to not having support to fight discrimination and bullying. My managers daughter got my job despite having no experience.

As of last week my house is still flooding in heavy rain, this has been going on for 2 years now. I did have some support to help with this when Covid caused a lockdown locally early last year and my support worker provider briefly had someone with building experience who could project manage for me and helped sort out some of it, but as soon as the lockdown finished he went back to his normal job, and my support provider said this is outside their abilities and couldn’t help anymore. Since then I’ve only had help from my normal support workers who take me shopping & for walks, though one did come over during the flooding and helped me call the SES. The NDIS has offered no help or support with this, even in my new plan when I asked for it. I am not asking the NDIS to pay for the repairs, just for a project manager with building experience to help me organize tradies & sort out insurance which is way out of my understanding and normal SW’s cant do either. I don’t use a phone and my brain can’t organise it all.

My Experience With the NDIS Plan Review

I was completely on my own with noone to support me at my recent plan review. I didn’t have a trustworthy SC, and my main support worker quit without warning (to go to a full time job) just 10 days before my review. I had organized an advocate but she didn’t really have time and pulled out 3 days before the review leaving me completely unprepared. She told me I’d be fine as I had plenty of reports for what I needed. I believe it is the enormous strain that advocates are under that caused her to not be able to help me. She cancelled 3 out of our 5 appointments. She was just too busy and no one else was available.

I had a little to do with my LAC earlier in the year when my SW and I asked for her help and had thought she was okay (though overworked) but on the day of the review she came across as quite hostile and curt. The whole meeting was over in under an hour and basically she just kept cutting me off when I spoke and said no to everything that I asked for, even to go to the beach for a daytrip! She sat about a metre away from the holes in my walls where the water floods in (right next to electrical points) and told me that the NDIS won’t help with that, “they only help with things like grab rails” she said. I told her I don’t want the NDIS to pay for the repairs, just the support to get it done and sort out the insurance, and she said no. She was not helpful nor supportive nor friendly at the meeting, and I was on my own.

As she was leaving at the end of the meeting I asked her about doing the WHODAS. That’s when she said she didn’t have a dongle with her so had no internet access and she’d do it for me later. I never heard any more about it so I don’t know how she answered it for me. I wasn’t included.

I have never felt more alone. I felt sick.

So to be clear .. the NDIS is fully aware that I live on my own and don’t have family or friend support and can’t talk on the phone, and the NDIS doesn’t think it’s reasonable or necessary to help me stay safe inside my home during heavy storms. The NDIS is quite happy for a middle aged woman, on her own and not able to use the phone due to an anxiety disorder, to be on her hands and knees using towels to try to soak up floodwater that’s pouring through the walls right near power points every time there is heavy rain, and not offer even a scrap of help? The water has gotten into the electricity once before, its incredibly dangerous. The carpet is wrecked, as well as the walls & skirting boards and the LAC could see it all and even asked how far the water got in, than answered herself when she saw the outline of the stain. But the NDIS won’t help.

You cant even imagine my anxiety when it rains.

That plan review meeting left me feeling so worthless and horrible that I came close to committing suicide for several days afterwards. I genuinely considered suicide as a more appealing idea than continuing with the NDIS.

Needles to Say When My New Plan Dropped It Had Nothing To Do With My Goals

The NDIS in their wisdom has decided that the safety devices I have in place so that I can call 000 for help in an emergency (I don’t use the phone and live on my own) were not reasonable or necessary, so they weren’t funded at all.

The NDIS thinks its not reasonable or necessary for me to even get help in an emergency!

Also, they calculated my funding hours on housekeeping support which is $5 cheaper per hour then social support, and they only allowed me 14 hours per month social support. Considering most of my support needs to be social as I rarely leave the house alone, and a visit to my parents is at minimum a 6 hour social shift, that means I have to choose between visiting my parents, getting my house fixed, or going out for a walk/shopping/doctors appointments.

People have used the phrase “cutting plans by stealth” and that is exactly what the NDIS is doing when they use wrong line codes to create plans, and then make lengthier plans and don’t take into account annual price rises.

Even my LAC says that my safety supports should have been allowed, but she cant help me … I have to do a review. I don’t blame the LAC, she’s just a pawn in the NDISs game. I have been told by a few exLACs that the NDIS actually trains LAC’s not to give us any care or compassion. LAC’s get into trouble if they care! What sort of system is that? I fully blame the politicians and people who are higher up in the NDIS who are making these horrid decisions to treat people with disabilities so poorly. If its not a deliberate attempt to harm us, then they are certainly incompetent fools.

I did ask the advocate if she’d help me with a review but she said they don’t have time and she closed my file. I’m on my own.

This is getting long, and I havent even started on the people who’ve taken advantage. Support coordinators who don’t put supports in place but get paid anyway. I need to do long OT reports even though without the NDIS I wouldn’t have any need to see an OT, oh and they want travel money to come out and do the report that I wouldn’t get if it wasn’t for the NDIS. Lots of people are benefiting from my plan but I still don’t have help and support when I need it, and the NDIS didn’t take much notice of the reports anyway. If the NDIS is running over cost perhaps its because its so poorly run.

There are a growing number of us who believe that the goal of the NDIS is to make it too impossible for us to get any support so that we just die. The NDIS is so complicated it is impossible to navigate, and those who can attempt to navigate it have to fight at every point. Someone like me, with no supports, has no chance at all. Very few people that I talk to trust the people running the NDIS or politicians behind it. Many say it feels like a war, politicians and the NDIS against us. I know I don’t have any trust in either the NDIS or the politicians.

I’ve even heard that politicians are talking about deciding on what treatments we must have if we’re on the NDIS! How dare you! Our trusted doctors who have known us for years are being pushed aside. The politicians and NDIS decide what we can and can’t do. You even want to put our funding on cards so that we are restricted on who we can use for our support. We have to give total control of our lives to politicians and the NDIS. This isn’t Australia anymore, it’s a disgrace.

So much for the government guarantee that “noone will be worse off under the NDIS”.

I remember Senator Reynolds talking about how people on the NDIS were getting worse and needing more support and she exclaimed that she didn’t understand why. Well, I can tell you my disability is 1000% times worse due to all the stress I have been under the past few years. The NDIS has been a nightmare, and I’ve been pushed to think about suicide more than once. Every time I turn around you are all putting out more documents that are impossible to understand and making it harder. My self esteem has evaporated. I have to constantly apologise for my existence so that faceless people can pass judgement on me. Everyone passes judgement on me, even the ones that do see me, and I am supposed to smile and say thank you.

I’ve given up on my original goals … to keep my job, to be safe at home, and to get out and about and be fit & healthy. It was stupid to think that the government would help. There’s no point asking for help anymore, the politicians and NDIS will just keep trying to make us feel like rubbish. They want to keep pushing us down until we cant get up anymore. But I have to keep trying, I don’t have a choice.

I will leave you with this one thought. After the protests in Myanmar I saw the Prime Minister, Scott Morrison, proudly talking about how here in Australia people can protest without getting shot. My immediate thought was “Well Mr Prime Minister, I can tell you that bullets are not the only way that governments can harm people.” The way the politicians and NDIS treats participants is just as harmful as firing bullets into a crowd. Some forms of violence are just invisible and more subtle than bullets.

Thank you for reading.