u/dummymummys

NDIS Meeting, 1:00-2:00pm, 7 October, 2026, via Microsoft Teams.

Sign up for additional meetings here: https://www.ndis.gov.au/news/events

They went through the slides quite quickly and they were dense with information, some of it I already was aware of, and other things were new. I believe that they will be uploading the webinar to their site at some point, it seems that there are other presentations available there. (https://www.youtube.com/playlist?list=PLTwZ-K9vkmo4hiYd9JJ31HfJ5hkKYP7Mn) The provided information was helpful in some ways, but also just left me with even more questions than before. Some of the answers to questions were simply that they weren’t sure yet, and more information would become available as it was determined by the agency or other organisations that are responsible for the implementation. 

Links that were shared on slides during the NDIS Participant Webinar today:

https://www.youtube.com/watch?v=qZpeOQtF2gA

https://www.ndis.gov.au/participants/changing-your-plan/types-plan-changes/what-plan-reassessment#what-asking-for-a-plan-reassessment-is-like:~:text=in%20coming%20up.-,Plan%20reassessment%20request%20form,-Download%20the%20plan

https://ndis.gov.au/news/11695-changes-support-budgets-1-october

https://www.ndis.gov.au/participants/working-providers/your-rights-and-responsibilities/what-are-your-responsibilities

https://www.ndis.gov.au/changes-ndis/new-way-planning

https://engage.ndis.gov.au/projects/tell-us-what-you-want-to-know-about-ndis-reforms

https://engage.ndis.gov.au/projects/test-the-new-way-of-planning

https://engage.ndis.gov.au/

https://engage.ndis.gov.au/page/participant-first

These are the questions that I was able to capture from the Q&A window. Very few were addressed despite the many votes which were entered on questions from others. The questions submitted during the registration process did not seem to be addressed. I was pleased to see how many people were able to join the call and that everyone was active in addressing the many questions, concerns, clarifications, and issues that have arisen as this information is released to the public. Also some of the q's are incomplete and instead say “see more” as the text was condensed. Apologies! I’ve removed the names in case people are concerned for privacy.

Previously we have been advised to use SECP for employment support as its flexible. Now it will be cut, and yet we using it for employment training, skills, vol...see more

What does progressively reset mean?

If you have an established multi year plan (eg 5 year plan) that you are only 2 years through, will you be impacted by the SCCP cuts before the next scheduled plan review (in this example in 3 years time)?

Will funding be cut if we have a plan continuation before Feb 27?

In relation to the support determinations-Why is informal support not recognised when looking at 24/7 support for a plan variation for a participant who cannot be left alone for any amount of time? 

Plan Suspensions - Will this only happen if the Participant has been contacted by their nominated preferred method of contact or will calls still come from "private numbers" at odd hours with no direct return number to call back, and with hit and miss leaving of messages. Will the Participant's preferred method of contact be strictly adhered to?

Will Participant plan reassessment consider functional capacity impacts that are not necessarily directly related to disabilities "recognised" by NDIS.  e.g. how would a participant with ASD2 who also has other chronic health conditions which severely impact their day to day life (but which are not treatable) be considered at NDIS reassessment?

Some participants have 24/7 support, but not all of which is ndis support

If you have had a plan approval recently but are now going via the ART disputing only one section e.g. one support within Improved Daily Living budget. Will the entire plan be reviewed at the same time. i.e. could you lose in another area whilst seeking a review in a specific area. And then end up worse off. 

How do we know if supports will be 'cut' PRIOR to this occurring?

Information gathering powers and civil penalties - Participants & providers may need to give requested info etc - will Privacy Laws be adhered to eg. will participants and providers be required to hand over their phones or laptops or have all particular communications "subpoenaed"?

Does parental responsibility extend to disabled individuals over 18 years old?

Some participants are non verbal, have no plan nominee or guardian, they are not able to respond when ndis check in, will they be cut off after 5 attempts?

So under mandatory rego, will only registered support workers be able to do ADL's, no independent 1-person unregistered support workers helping at home?

can you still be self managed after October 2027?

Will Participants be still able to use cleaners, home maintenance, gardeners, hairdressers, meal preppers etc provided by specified businesses? Will they need to have an NDIS Workers Screening Check? Will they need to be registered with the NDIS? 

Plan Manager panel - how will it be determined which plan manager meet NDIA panel requisite?

What is the new criteria that will be used to decide what supports are reasonable and necessary?

Will people be able to continue to use independent unregistered providers if they are coordinating and scheduling supports as per the SIL registration?

Support coordination & connection service - what happens to a participant who has funds for this - do they then transition to the new service? OR does this get 'assessed' again?

If I use a registered SIL provider for half of my weekly support, can I still use my independent support workers (unregistered) if I am scheduling that part of ...see more

Can I continue to use my unregistered support worker (who charges less per hour than registered ones) for assistance within the home given that I have an establ...see more

If a plan has been 'rolled over' - when is this 'reassessed'?

No documentation I have seen addresses that community participation budget is often used to attend medical appointments. A 50% cut would have an awful impact on my ability to attend necessary medical appointments…

Is the 50% reduction based on what is funded in your plan now? So for example,  if a participant is funded to attend 4 days at a day program, their funding wil...see more

Do the changes also apply for children who are needing support to learn daily living skills?

In terms of SIL we have had a different answer for Q&S and another from the NDIA directly. It is very confusing when this is all done via email and noone will s...see more

Are we able to check with NDIS if a participant is 'High Support'?

How will u know if its employment supports when its in SCEP?

Do we need to have another functional capacity assessment done before the plan renewal date?

will evidence from treating medical professionals/support teams be considered during plan reviews under the new way of planning?

Are you going to be doing easy read info about who can request plan assessment as some people are not eligible is that correct

(I am going to email these unanswered questions to the NDIS and hope that someone from their Comms team will take ownership and attempt to answer as many as they are able to, I will report back if I am able to receive a response!)

Impression: 

I remain quite concerned that between the number of staff that they are meant to let go, plus the apparent annual plan “variation” or “reassessment” (please god someone help me understand what the difference is between these, and why they would create this confusing delineation, which they themselves have noted is confusing?!) schedule is going to create a tsunami of work that they are unprepared and ill equipped for. I can only imagine that this creates budget challenges for their staffing, as well as longer wait times and more mistakes as far as participants are concerned. I’ve also just realised that my lovely support coordinator will soon be out of a job, and they have been invaluable to me in learning how to navigate this system. It seems as though plan management will become required, and as a self-managed participant I am very against this, though it was inferred and not explicitly stated. I hope that I am mistaken! I have an unregistered AMAZING SW who is less expensive than the NDIS rate, which is what I would call “value for money” as they say, and I am going to attempt to cover the costs of their registration as it seems that it will be required. Does anyone have any visibility into what the registration requirements and/or fees are?

I’m glad that I found out about this session, from signing up for all of the email newsletters that I could find within the NDIS site. I will be attending as many as I can to try and document the information that is being shared, and I will do my best to share it here as well as I am able. I am petrified about the changes, and the announcement that they had been brought forward was alarming. Hopefully we can all support each other through this transition and work together to make sure that no one falls through the cracks during all of this. I am concerned that there will be awful consequences of all of this, these are people’s lives that are being rearranged and redefined, I hope that fact is always front of mind for anyone who is employed within the NIDA. I would imagine it’s quite difficult for everyone working there, as well, but I am choosing to focus on the vulnerable disabled community that will need even more support through all of these changes, for better or worse. <3

My written notes are too shoddy to share publicly, sadly, due to how fast they went through everything! Was anyone else in attendance, and did you leave with any different impressions? Would love to hear thoughts from others who were present, I may have been yelling at my computer during moments of it!

I have just submitted an official request letter to the NDIS FOI email address, requesting internal documentation regarding the acceptance and then removal of an impairment from my profile.

Has anyone else pursued an FOI request to the NDIS? Were you successful? Did you receive information that was helpful? How long did it take? Did they refuse? Was the information provided redacted?

Any insight or advice regarding this process would be helpful, even if it is negative.

Thank you.

I have submitted all of the documents for my Review of a Decision appeal with the NDIS for the removal of a physical impairment from my profile that was previously recognised.

The Internal Review Officer emailed me and said that a specialist team at the NDIS would review my documents to provide a “clinical perspective” before they proceed with the internal review.

Has anyone had experience with this happening during their review or have insight into the qualifications of the specialist team? I’m encouraged that the review has been referred for a clinical perspective, but I haven’t been able to find any official information about who this specialist team is or what qualifications they have.

Any information or advice would be appreciated. Did the specialist team contact you? Did you receive information about their input in your final review? Did it slow down your process?

I have multiple serious permanent physical disabilities and need to have these recognised again to pursue certain funding from the NDIS.

Thanks!

This popped up on my Instagram and I thought it would be helpful to share here. NDIS check in calls triggering plan reassessments without warning or notification.

I just finally bought the Ari Shaffir The End series through YMH studios. Does anyone know where it was filmed? The room is so beautiful. Only on the first episode but I am so psyched about it.

I was approved for my NDIS plan with two conditions, one psychosocial and one physical, last year in August. I’ve got a plan in place and have greatly benefited from having a support worker and the other supports that NDIS provides.

A little over a month ago the NDIS contacted me and said that they were removing my physical disability but not changing my plan budget. I am in the process of appealing this decision right now. The reason that they gave for removing it was “a mistake on their part approving it in the first place.” So nothing that I did.

Since I got my first plan, I have been diagnosed with two additional physical disabilities. I recently received my FCA report, a home modification report, and a car modification report, all written before the diagnosis of my two new neurological conditions. I spoke yesterday with the person who is reviewing my appeal, and they said that I could also submit the evidence for my new disabilities at the same time, so that I could potentially have all three of them recognised.

I am worried that without recognising a physical disability, I am unlikely to receive the funding for the home and car modifications that I so desperately need. So I’m really hoping that at least one of the three physical disabilities will be approved. Having these home and car modifications would allow me way more independence and save the NDIS money long term for support workers, as I currently rely on them for all of my transport and access to the upstairs of my home (I am hoping to get a stair chair lift as I have not been able to go upstairs in my own house for over a year!).

Does anyone have any experience with appealing a decision by the NDIS? Or adding on additional conditions after you have already received a plan? The new conditions are much clearer diagnoses that have measurable data supporting their existence, while my first physical disability is a diagnosis of elimination, with no ‘data’ that proves the condition.

I’m told that I have two weeks to submit evidence before they complete their review. I sent a number of pieces of evidence today, and am awaiting additional letters from a neuroimmunology specialist. With my original application, I submitted over 45 pieces of evidence spanning 4 years of diagnosis and treatment attempts. And now I have the FCA, home, and car modifications reports that reinforce the supports that I need access to.

I’ve been told that the NDIS is moving more towards functional impact rather than individual diagnoses in the future. They told me that they will review the evidence and provide a decision soon, and the next step would be a second planning meeting to develop a new budget. The person I worked with on my first budget gave me all sorts of incorrect information and I pushed back on them with documentation from the NDIS site. Will I have to meet with the same budget planning person the second time if my conditions are approved?

I am very thankful for having a very knowledgeable support coordinator who is helping me through this process, but even she was surprised that the appeal and new conditions would be evaluated at the same time. I feel much more informed about the supports available and the costs associated with them now than when I did my first budget planning meeting, which is reassuring, but I am so scared that I will end up with less budget somehow after this process.

I have two young children also on the NDIS for Autism level 2 and they are managed by my ex husband. I manage my plan myself with help from the support coordinator. I like managing my own plan so that I can make sure that everything is being done properly, and I do not want to be put on a plan managed budget.

Any previous experiences, advice, or support would be greatly appreciated. I don’t have any friends who are also on the NDIS so I’ve got no one to talk to about this incredibly complex and challenging process. It is so stressful to not know what the result will be and if I will lose the funding that has already had a really beneficial impact on my daily life, let alone being a single mother and managing my home. There’s no time for anything fun or social in my life.

I’m also in the process of applying for DSP and a carer allowance, as well as a concession card and companion card. It’s so frustrating that all of these are different application procedures that are purposely complex with long wait times. I have learned a ton through this process, but it feels like a full time job just managing the NDIS and my complex medical needs.

Sending love to everyone going through the struggle just to have a dignified quality of life. I’m frightened by reading about politics lately and proposals to eliminate or reduce the NDIS. It’s a crazy world and I fight every day to educate myself and advocate for myself. It feels like an uphill battle just to get help to have a semi-functional life.

💚💚💚💚💚

I was diagnosed in 2021 with complex regional pain syndrome (CRPS) due to awful pain in my right foot and ankle for no reason. In late 2024, it spread to my left side, and I now have awful pain up to the knees, and numbness and pins and needles up to the waist. I also have numb fingertips and mouth and throat. I am now 41 years old female.

I am awaiting genetic testing to see if I have CMT2 as my NCS show no response axonal damage in all of the sensory nerves in my legs, as well as slowing velocity of the motor nerves. So many things have been ruled out, but I’m on the wait list to find out if it’s CMT2. My sural nerve biopsy confirmed the axonal damage and ruled out a number of other conditions. I’ve been seen by general neurologists, neuromuscular specialists, as well as neuroimmunology specialists.

My motor nerves show increased slowing on NCS just three months apart which is alarming, I am terrified that what has happened to my legs will happen to my arms, and also worried that the motor nerves getting worse limiting my mobility even more. I know there’s no treatment or cure for CMT, I mainly just want to diagnosis with genetics because I have two young children and would then pursue testing for them.

Does anyone else have both CMT and CRPS? My doctors think that I have both, but there is no real testing for CRPS, just a framework of symptoms that you have to meet some of the criteria for.

My pain is constant and horrific. I take pain medicine but it barely takes the edge off. I’ve tried gabapentin but have awful side effects and no noticeable improvement. I can’t even put a blanket on my feet at night, it hurts to wear socks and shoes, and walking is excruciating.

Just curious if anyone else has both of these conditions and what their experience has been like. The CRPS diagnosis sucked enough, but it’s even scarier to see actual data on the NCS that show measurable progression. The symptoms have worsened really rapidly and I already use a 4 wheel walker for mobility.

Sending everyone strength wherever you are on your neurological journey.