National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 167
NDIS review - Getting the NDIS back on track
Hi, I am a 58yo female NDIS participant with a lifelong psychosocial disability. I live on my own in a townhouse and have no informal supports. I don’t use the phone, drive, and rarely leave the house on my own due to my disability. My parents live 90 minutes away and are both in their mid 80’s. Dad (85) has dementia, and Mum (83) has heart problems. I do not consider them informal supports, as its me who should be supporting them at this stage of their life, especially with their health concerns.
I have already made a submission prior to the amendments being tabled, it was submission number 121.
I have looked at the amendments and tried to understand them (be honest, does anyone actually understand all of this?), and I wanted to put this submission in to say how disappointed I am that this bill is being rushed through parliament with so few details. There is no way that anyone can make an informed decision about this bill, so I am totally against it. I would hope that politicians who lead our country make decisions based on facts, and not based on the unfair media representation that have been occurring since the NDIS began, or on unseen rules and regulations that will be made in the future. If you wouldn’t sign a blank document in your private life, then you shouldn’t sign one as a professional politician especially when it has such a negative effect on peoples lives.
As a psychosocial participant who has lived with my disability all my life and finished treatment, I am concerned that there is no information that says which psychosocial participants will be put on an early intervention plan. How can it possibly be early intervention when I have lived with my disability for so long and have had years of treatment?
I am also concerned that the co-design will be done with “peak industry groups” and advocates and not participants. I’m not a member of any “peak industry groups”, they don’t represent me. I did hear via facebook of a state mental health organisation that was being included in discussions so I reached out to them and asked if they had considered that many people who have had a psychosocial disability for a long time have exited all mental health services and groups, and they said they hadn’t even considered it!! They agreed that the people they were representing where the ones who were still in treatment or actively in the mental health system. That means that people like me with long term psychosocial disability aren’t being considered. We are invisible.
I’m also concerned about the powers being given to Ministers. When did they become disability specialists? Anyone with a disability can tell you that although you may empathise with us, you do not know what its actually like or what we really need. We are not boxes of cereal on a shelf, we are real people, with real needs that are individual to each of us. I have a huge concern that the personal, and political, views of Ministers will override our needs. We shouldn’t be used for political point scoring.
I have many other concerns regarding lists of supports etc, but I know that others who are smarter than me will be voicing those concerns. Time is too limited to voice all my concerns.
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 167
I’d also like to say this. Prior to the NDIS I had never watched parliament or got involved with anything other than an occasional political survey. But now I sit glued to my screen watching what’s happening with the senate’s estimates, the committee hearings, and the senate etc and I whilst I appreciate those of you who are digging for the truth so that you can make an informed decision, and I am horrified by the lack of understanding of so many politicians who are making these decisions, and the way they are using disabled people and the NDIS to try and promote themselves politically.
This bill will affect real people. We are human. We should matter. The NDIS has been life changing. For the first time in my life I am getting the support that I need, and that’s not mental health based support its just non judgemental acceptance of a support worker. I can tell people what I need without them trying to “fix me” because they think they know everything. That has helped me more than anything. I never got that support under state supports, and I know that with all the cost cutting I will lose all support and be completely isolated.
The NDIS has also been life changing in that I was able to move away from living with my parents. We made this decision because although the NDIS hadn’t rolled out in QLD at that time, it was rolling out in other states and I thought I would have support. Not that I could move back in with my parents now that they’ve moved further into the country (and got older). Many people have made life changing decisions because they thought they had the support of the NDIS, and this bill just wipes all that out and puts us in real danger.
I do understand that the NDIS is costly and politicians are looking for ways to decrease that cost. I don’t believe this bill does that, cutting people off the NDIS won’t save money. It just transfers the costs to States, or leaves people without support.
If you want to save money my suggestion would be to look at the number of reports that we have to do, and the providers who are ripping us off. I know I have had to spend approx. $10,000 of NDIS money on reports that weren’t read. I was also rorted by a support coordinator to the tune of $2500. Many disabled people are on low incomes and are skilled at spending money wisely. If you really want to save NDIS money while still supporting us, then ask us where we think you could save money. A current example is a provider who added a hidden fee on my invoice 3 weeks ago, they know it was wrong but its taken 3 weeks of fighting to get them to reissue a correct invoice. If I didn’t have a good financial knowledge and check my invoices carefully they would have taken an extra $25. Its not much, until they do it to 1000 people.
We all want the NDIS to be sustainable and we need to work together, but this bill does nothing other than taking away our rights and our supports.