My experience with the NDIS is that as a person on my own who doesn’t have family or friends to help it was really difficult to get onto the NDIS. Not being able to use the phone made it even more difficult, although I will say that the people who answer emails did a very good job (in my opinion).
I’d like to mention that although my disability means I cant use the phone, the NDIS still rang me to tell me something during my access request but as I don’t use the phone and they didn’t leave a message I didn’t find out they called until my doctor rang them 6 weeks later to find out what was happening. I’m getting Phonecalls at the moment that have a private number, and I am wondering if it is the NDIS trying to get in touch or if its just a telemarketer! Who knows!
When I was finally accepted onto the NDIS it was difficult to understand all the NDIS speak that is needed in order to create my goals. It would be so much simpler if I could have written a list of goals in my own words, and then work with the planner to create a draft plan that we could both be happy with. I’m not happy with my goals but the planning process is another whole long story.
I’m not happy with the transport funding as it doesn’t allow me to do anything or go anywhere, even though when I applied for the NDIS I was working 20 hours a week. Unfortunately, the delays and stress involved with getting onto the NDIS have affected my work to the point that I’ve been cut back to 6 hours a week now and I look very much like losing my job!! Thanks NDIS, it’s my first job in 20 years and I told you from the start of my application (18 months prior) that I needed help desperately for my work! I wasn’t joking.
Other than those few things I am very happy with my first NDIS plan. If I could have a little more ttransport funding I would be able to work out my time and experiences so that I could put the funding to really good use.
I’ve been on the NDIS and had my plan for 6 weeks now and being on my own have found that it is difficult to work out who to trust to provide my services. I found my first support coordinator by posting on facebook and asking for recommendations. I found that the lady I chose, who seemed really professional, was more interested in telling me that I needed to get my plan reviewed so that she could get more support coordinator hours than she was in getting me some actual supports! Thankfully, after a month when there were still no supports in place and the SC wanted to charge me $98 per hour (plus travel) for her to help me go to the chemist for my cancer tablets that I had run out of, I complained and her boss agreed that it was unfair and refunded the hours the SC had claimed so that I could start fresh.
So now I’ve been on the NDIS for 6 weeks and the only supports that I have in place are the ones that I have figured out myself. Support coordinator, plan manager, and transport (a company I had already used who helped). I need social support to get out of the house but don’t have a carer yet so I haven’t been out in 6 weeks except once to my doctor and once to the beach when my 80yo parents (who live 90 mins away) came down to take me to the chemist to get my medication then took me to the beach. Thankfully this second support coordinator is getting things done faster, but still she does it mostly without consulting me, so I feel really left out of the process.
I would really like to see the NDIS bring in a case worker for people to have for the duration of their NDIS experience. I really like my LAC but have heard that her company is being replaced as LAC’s in our area so I am really worried that I will be left with no supports and no help if this support coordinator doesn’t work out.
I would like a case worker to be a person who is responsible for making sure that I am okay. They should be in regular contact, mostly via email but with real life visits when needed. I should be able to contact them in an emergency for help. As I am on my own, and my parents are elderly and not in regular contact, I worry about what will happen if I get sick or end up in hospital. What if I fall over and cant get up? Noone will find me at home because I’m on my own. Or what if I go out with a support worker and don’t come back? They could do anything. What if my transport drops me somewhere and doesn’t pick me up? I feel so very vulnerable in this position. I could just disappear and no one would know. Or my supports could disappear and I could be left all alone. We need a single contact who makes sure that we are okay. Maybe an app where we press a button each day? If we don’t press the button to say we are okay someone checks on us? That would be good for people who are alone.
There should be very trusted, well trained Support Coordinators that are knowledgeable about the supports available in my area who can help put us in contact with immediate care. Or at least so people aren’t waiting 6 weeks to go to the shops like I have been. I hope I get there soon but I don’t even know if there is a carer on the horizon.
There should be a private hub for support reviews so that people with a plan can see what experiences other pwd have had with services so that we know who we can trust, or who might be suitable for us. At the moment there is only facebook, and you can be anyone on facebook.
Thank you for listening. Have a nice day.