30/5/2026
My name is Carly and I am an NDIS participant.
Background
I 1st applied to NDIS in June 2020. At the time I was struggling with daily tasks due to pain, fatigue and muscle weakness. I was denied because the person assessing me said ‘it doesn’t matter if a task makes you bedridden for days, if you can do it in some capacity, you’re not eligible.’ By September 2020 my disability had progressed from just needing help with a few asks & physio to keep my functional capacity to now requiring hospitalisation and full time care. With limited support in state programs I applied again, and was denied again. I lost my job. My independence, my friends and family.
This continued for 5yrs, including 8 denials, the cessation of state based help (defunded) and finally Tribunal. I finally won acceptance after new NDIS funded assessments backed up the 250pages of evidence id already submitted.
It then took 7months and countless escalations to get a plan. The assessor saw no need for wheelchair hire or support work despite now 300+ pages of evidence showing I am a non- ambulatory aka full time wheelchair user who cannot use her legs!
I was told my FCA from Jan wasn’t relevant in July. They requested a new one (2nd one). My plan was dangerously underfunded, and I only got support workers after I asked to escalate and that she would leave me worse off on the NDIS then in state program. I was also only funded 4months of wheelchair hire in a 12month plan and promised if I came back in 4months with a FCA id have a new plan
I gathered my evidence as requested and put in a COS Jan 2021. It took til June to get a plan meeting.
Majority of my evidence was yet again ignored. I was told to go get another FCA (3rd ) plus reports from many allied health practitioners and come back in 4-6months for another COS. Attempting to get all this done quickly increased my fatigue and caused burn out. Im still in the process of getting evidence so I can stop surviving and start living. All my hours are used for everyday tasks/personal care etc. I’ve had no actual social participation because my hours all go for appointments and food shopping.
You might ask why all this is applicable to why this Bill is not ok.
Your pushing that participants are wasting funds, yet here i tell you that I have 8 denials (NDIS admin hours), tribunal (admin hours, legal fees, $5k report) + I declined so much my support needs are now substantially higher (6-10x) and will be for the duration of my life. But NDIS chose to fight access to someone who is deemed ‘high support needs’ across every category. My quality of life was permanently damaged. Participants aren’t the ones getting the money. So please don’t blame us for ‘budget blowouts’ when they’ve made me get $20,000 in reports within 18months .. then mostly ignored them!
- Your yes/no list – costing you money.
Plan manager will not put through an item from a non disability provider for $30, but happy to process exactly the same from an ndis provider for $300 more! Plan manager demanding a $200 report for a $50 item (when its already in a FCA but its 6months old so ‘doesn’t count’. Plan managers gate keeping necessary yes items because they are scared they’ll have to pay it back.
With your proposed changed I will have to start this fight for access all over again. I shouldn’t have to just because you don’t understand my disability and are trying to save money. I don’t have the capacity to fight. Our vulnerable community shouldn’t have to fight for basic needs.
You bill says every treatment needs to be tried, regardless of whether the person can access it financially or geographically. So you’re essentially saying if someone says there is a $50k a session treatment in Africa that might slightly improve symptoms. not cure, that we would be denied access to NDIS because we haven’t tried it? This is not accessible to the majority of disabled ppl. There needs to be allowances for the disabled community. If we literally cannot access something, or the risk is too high don’t force us to try under threat of no care. No care for some = death.
Sweeping cuts are harmful. You will not save money by slashing 30% community participation. I get a very small amount. The majority is used for ndis appointments. The rest is errands and food shopping.
Ndis was funded to improve social access. Without social access we are isolated. Studies show higher incidence of mental health problems when you isolate ppl. Think back to COVID.. did you enjoy being trapped at home? That’s the reality of so many of us
If you reduce this by 30% and I actually get to stay on, I will have to get my therapists to do home visits. This will cost considerably more than having a support worker take me.
Ill also have to choose between getting a food shop or seeing a doctor with limited funding. You are blocking access to healthcare too.
I haven’t even been able to use my social access for things I would like to do, like meet new people, try new hobbies, see family etc. So I am trapped in my house 98% of the time. Alone. Underfunded with falls and choking risks.
There is a lot more to say. But this alone has caused a massive migraine and my symptoms to flare. Again, highlighting how many people will not have capacity to speak out about this highly dangerous and flawed bill.
If I am removed from NDIS, with no formal supports (no state based programs exist) and no informal supports (live alone) I will be left unwashed, unfed, and alone, to die slowly from neglect trapped in my house. You’ve already seen this happen before. This bill will make it common.
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This Bill is a human rights violation. It’s a violation of the UN Convention on the Rights of Persons with Disabilities (CRPD) by taking away fundamental support. Our lives matter. Stop this bill and show our lives matter.
Thanks.
Carly