My Experience with the NDIS
Hi, I already put in a submission but it mentioned planning and getting onto the ndis.
I forgot to mention what its really like for me now I’m on it.
I’m 6 weeks into my first ever NDIS plan. I have a psychosocial disability and cant keep up with people. I don’t have family or friends who are helping. Its just me on my own.
I’m onto my second support coordinator already. I found the first one via asking for recommendations in a facebook group, but the one I chose did nothing for a month. When she said she’d charge me $98 per hour to take me to get my cancer medications I complained to her boss and they apologized and refunded my NDIS money so I could start over again
I decided to go with a support coordinator from a company that I had trusted to do my transport care under the community care program. I had set up transport, plan manager and support coordinator on my own. I got my advice for a plan manager and support coordinator from facebook.
So far I havent even taken a step towards my goals. 6 weeks in and I still don’t have any social supports. I have only left the house twice in that time. Once ot go to my doctor and once when my 80yo parents drove 90 mins to take me to the chemist and go to the beach for lunch. Other than them and the support coordinators I haven’t spoken to a single person in real life in real life. It’s just me, at home alone. I want to go out, but I can’t without support and I have none.
When I applied for the NDIS 20 months ago I told them I needed help at work. It took me 18 months ot get onto the ndis, and another month to get a plan, and without help my work situation has deteriorated so that I am just clinging onto my minimum wage job. I still don’t have any employment help yet. I know my bosses are treating me unfairly, they asked me to buy an iphone a few months ago but I don’t use the phone and then they cut my hours right down to almost nothing. I suspect they will cut them further soon. My support coordinator has sent an email to a DES company, but I don’t know if they can help or if I needed more specific help. Noone is in any hurry to help, it doesn’t matter its only me.
My glasses are broken. I don’t have support to go out and get them fixed. My house keeps making strange noises and I can see cracks that are starting to appear in the walls & even one in the bricks that hold it up, and I don’t mean a gap that is meant to be there its an actual crack. I cant contact anyone to look at them for me. Until 3 years ago I lived with my parents and they would look after this stuff. Then I had community care, now I have no one.
Prior to the NDIS I had 2 hours care some weeks and then 3 hours the next, fortnightly. Today I have no care at all.
My new support coordinator isn’t working out. She is making decisions for me, and telling me that I need a cleaner but my goals are to go out and do exercise and to keep my job. I don’t have any say. We had a meeting at the start and she talked quickly and I don’t think I was heard or listened to. I even gave her a list of the supports and sorts of things I would like, but she isn’t following it. She wants me to get a cleaner, but I can clean the house myself. I didn’t want that, I wanted to go out and do things. I wanted to go to the beach. Other than that first meeting, our communication is all via email as I cant use the phone. So I cant say stuff without it costing more NDIS money. We cant have a conversation.
I’m on my own. I’m not good with people and don’t have family or friends helping.
I’ve started crying so hard that I can’t even breathe, every day. It’s hopeless. No one will help, no one understands. They don’t take the time to listen. The only people getting benefit from my NDIS plan so far are my support coordinator and plan manager. They get paid whether I get help or not.
Whenever I ask my support coordinator to do something, she does her own thing or puts it back on me. I don’t know how to do all this stuff. I can’t do it on my own, that’s what I thought I had a support coordinator for. But services are so busy saying they have to “teach” us or we will lose our independence these days. I don’t need teaching, I am not a child or a dog. I need help and support. It’s really demoralizing, and I’m stuck. I had a good think about my goals and wrote them down at the start, but the advocate changed them. I wrote out a list of the supports I need, and the support coordinator changed them. There’s no point trying.
No one checks on me. No one says “are you okay?”. I could fall over or hurt myself and no one would know. Between work and the NDIS my confidence levels have disappeared totally. My illness is far worse now than when I was on community care.
I keep my front door shut all the time now, there is the world and then there is me.