Personal Submission to the team handling the NDIS Review and Amendment 2026
A short introduc>on about myself
I am a person with no informal supports who lives with ME. I started as a NDIS par>cipant in
- I was not allowed to join earlier as it was not considered permanent un>l it had existed for at least 5 years. As a result of wai>ng my condi>on deteriorated. I was also a NDIS plan nominee and informal support for my adult child up un>l recently.
Responses to items in the terms of reference Part 1a) The user journey
Issue: 5 years as a NDIS par>cipant and s>ll no one will tell me what my impairments are. I am only ever told my disabili>es. I have asked the LAC and NDIS call centre staff, even an FOI request. Without that informa>on it is very hard for a par>cipant to make proper decisions or know what would be considered a reasonable support as they are based on impairments. Recommenda>on: When par>cipants ask, they must be told what their impairments are. They should not even have to ask. Impairments should be listed and accessible to par>cipants.
Issue: NDIS call centre staff get agitated and difficult when talking to people with disability. I need people to talk slower and in clear, minimal accent English due to cogni>ve difficul>es. Staff get frustrated, stop assis>ng and will not let me record so I can play them back slower. Some>mes they also demand answers immediately even if I state I do not understand. Recommenda>on: Call centre staff need proper training on working with people with disability, and the policy, procedures and KPIs that let them offer modifica>ons. Non English speakers can request someone who speaks their language, why can’t English speakers also ask the same thing.
Issue: The NDIS call centre does not keep records on previous conversa>ons, nor can they ac>on anything. All they can do is lodge a request with internal departments that call centre staff cannot call, or follow up, only lodge another request. This means the call centre can never help, requests are not ac>oned and no one is responsible. Recommenda>on: The func>on of the call centre, what staff members can see, what is recorded, how requests are handled needs a total overhaul. At the moment there is no call centre, they can do nothing. If this is improved then not only the user experience would improve but costs would ul>mately be reduced as not so many staff would be needed.
Issue: I cannot use the NDIS apps or properly access the MyGov NDIS portal. The reason being I was a nominee first and then the NDIS delegate did not check during my own registra>on and now I have two NDIS par>cipant IDs >ed to one MyGov ID. This breaks MyGov. I have tried for 2 years with the aid of support workers to contact the call centre to get it fixed. I have been told it will be handled by IT, by the merge
team, our special PACE team. It is not possible to follow up and nothing is ever fixed, with each aZempt star>ng again because no one can see history. Recommenda>on: How was this even possible. It is above my knowledge on how to suggest a fix for this. NDIS staff need to be responsible for seeing requests through so that there is accountability.
Issue: The NDIS complaints department refuses to help resolve complaints. This is not new however one experience is related to the dual IDs above. Eventually I lodged a complaint and some>me later I was called repeatedly for a few days, even though I have stated only email. The agent would not help, would not check or follow up and only kept asking me to close the complaint. I refused. They closed it anyway. Recommenda>on: There is something deeply wrong with the KPIs of the staff or the policy and procedure they are required to follow. It needs a complete overhaul.
Part 1a) Assessment and Review Processes
Issue: Cogni>ve Capacity. Assessment dura>on even with the new model being introduced exceed my physical and cogni>ve capacity. I have asked for people to talk slower; to give me ques>ons in wri>ng; to let me record them, slow them down and answer the next day, even to break the assessment into small parts. It is always ignored or refused. Modifica>ons are meant to be made for people with disability, but the NDIS workers and contractors don’t comply. I asked to join the trials for the new assessment model, and even the trial team refused to modify to suit. Recommenda>on: The NDIS policies are very clear about modifica>ons for disability being a requirement, yet they are always refused. We need to have choice in how assessments are done based on our impairments.
Issue: OTs lack knowledge about disabili>es. I understand there are many condi>ons but not one OT has understood my condi>on. I have to provide them with research materials that they seem not to always read. The new model of assessment makes this even more likely as it will u>lise even less knowledgeable staff and an automated system. Recommenda>on: They need extra funds to have the >me to read what par>cipants provide, to have >me to read up on condi>ons they do not understand. I realise they are being removed, so the need will be even greater. They charge to even fix their mistakes, there needs to be a clear guide laying out what things costs and what can be charged for. Unscrupulous contractors are bleeding money and doing liZle.
Issue: NDIS demands instant responses, which is not fair on people with cogni>ve limita>ons. This is a massive issue for me. It is deeply upse^ng the number of >mes I have been forced to respond when I was not even sure what the ques>on was as it was said too fast. I have asked for modifica>ons, and these are o_en refused Recommenda>on: NDIS policies specify reasonable modifica>ons. This needs to be honoured up though the administra>on stack. If a person needs a day or so to think
about it, it is reasonable. Make the penal>es suit ‘being slow to answer’ because a person is disabled. Why is it designed for abled folk and not for the disabled.
Issue: It is not possible to add impairments without the en>re plan being reviewed and risking funding being cut. My Myalgic Encephalomyeli>s has steadily worsened (as it does), meaning I am now easily overwhelmed by noise and sensory issues. These are not new disabili>es. They are new impairments developing from my disability and I do not feel safe to ask the NDIS for assistance. Recommenda>on: We are told that we are able to make small changes, but it is not true. The reality is that any request, update or change leads to a full review and in quite a few circumstances cuts to the budget. There needs to be clarity about what does and does not happen in a ‘light touch review’ or whatever it I called these days. Par>cipants need to feel safe to communicate with the NDIA about such adjustments.
Part 1a) Planning
Issue: No errors can be fixed, as any change requires a full plan review. There was one minor mistake made by the NDIS delegate when I ini>ally had my planning session with the coordinator and NDIS. I have asked for my support coordinator to be plan managed, but the delegate wrote it down wrong or checked the wrong box, and made it agency managed. I emailed them immediately, and it was not changed. I have asked and been told it will require a review. I know if the plan is looked at for even a minor change, the whole plan can be changed and funding cut. It was a mistake by the worker and there is no recourse! Recommenda>on: We are told that we are able to make small changes, but it is not true, even staff errors cannot be fixed. The reality is that any request, update or change leads to a full review. There needs to be clarity about what does and does not. Par>cipants need to feel safe to communicate the NDIA.
Issue: Support coordinators lack available hours to properly assist. This needs no further explana>on. They use up most of their hours induc>ng you and that’s it. The burden then falls to support workers. Recommenda>on: Support coordinators need to be beZer funded, so they can actually coordinate and help par>cipants.
Part 1b) the fiscal sustainability of the scheme, including the longer-term fiscal trajectory
Issue: The scheme costs are blowing out and increasing annually, if this keeps going the NDIS will financially damage Australia. The solu>ons suggested are to provide less funding to par>cipants and harshly limit their social access. This runs counter to the mandate of the NDIA and the NDIS. Experience with the scheme tells anyone the cost over-runs are in the administra>on and the ror>ng. Recommenda>on: From my experience. 1) There is a na>onal call centre, that cannot do anything and has to lodge an untrackable request to a laundry list of sub departments. This duplica>on and the required message passing alone creates massive financial waste. 2) What about LACs, apparently, we are meant to
communicate with them, whole companies bleeding money and try and get LAC’s in some areas of Sydney to return a call or email. 3) The unscrupulous providers who max rate everything and design their services to use every cent of a par>cipant’s money, mostly on admin, least on being present and assis>ng. Stop your own people from ripping the scheme off, not par>cipants.
Issue- being forced to buy from a disability store which costs much more
Recommenda>on – allowing purchases from any store that is cheaper and meets the requirements needed rather than a costly disability store.
Issue- Some support coordinators owning Support work companies and SIL accommoda>on. This can lead to fraud. Recommenda>on- not allowing this to happen. And ensuring their partners or family members don’t own the other companies.
Part 1d) The NDIA and NDIS Quality and Safeguards Commission and DSS
Issue: A loss of the decision review process and tribunal removes the par>cipant’s right to ques>on NDIS delegate decisions against them in a fair and independent way. As a nominee of my daughter, when her funding was cut 40% with no transparent reason, we were able to use these processes to overturn the decision. This will allow NDIS workers to have even less accountability. Recommenda>on: The tribunal and review process needs to be kept to protect the government against ‘robodebt’ type events. Just in the same way other industries have ombudsman and they are not being removed, nor should this, and for the same reasons.