National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1229
Submission re National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I urge the government not to pass current 2026 bill with current wording in relation to definition of an impairments “permanence”. Under the new bill an impairment is only considered permanent if “all appropriate treatments to materially improve, reverse or alleviate condition have been undertaken with no further treatments expected to help”
While this sounds sensible there are problems “
- The words “improve” and “alleviate” are open to interpretation.
- NDIS in the past has never disclosed what are all the treatments for conditions and yet excludes applicants. So how can applicants know what treatments to try??
- NDIS has previously stated that General Practitioners would know all treatments and this is often not true.
- Even treatments are known there can be serious limitations to access treatment eg bedridden, lack of access in regional and remote areas, lack of finances and indeed being to impaired to organise treatments.
- NDIS works on out of date data for some conditions. Eg recommending Graded Exercise therapy (GET) and Cognitive Behaviour Therapy (CBT) for applicants with impairments from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Currently applicants can be excluded from NDIS if they have not tried these treatments Note ME/CFS has no cure and there are NO Australian recommended clinical practice guidelines for ME/CFS. Guidelines are currently being developed by the National Health and Medical Research Council ( NHMRC) but none exist now.
In relation GET and CBT treatments the former can be harmful and neither are recommended by the major global organisations Emerge Australia, Bateman Horne Centre (US) and National Institute for Health and Care (NICE) in United Kingdom. If these treatments are embedded in the algorithms of acceptance into NDIS then deserving applications will be excluded. And there will be no course of redress if higher appeals are abolished or diminished.
- The onus of proof on the applicant to NDIS would place a heavy burden on already ill and impaired people and likely lead to pursuing unlikely treatments just to apply to NDIS. This would likely lead to an industry of medical/allied health report writing .
Personally being the carer of a severely disabled daughter with ME/CFS I have witnessed this exclusion process even in its current form. Note my wife and myself are in our late 70’s with our own health issues and the care of our daughter is not sustainable.
My wife and I are currently carers for our adult daughter who is totally bedridden and dependent on us for all her activities of daily living. She has great difficulty with speaking and the processing of visual information to the extent that she has not opened her eyes for months. She has been diagnosed as having very serious ME/CFS and we have a statement from her GP that it is likely that her condition with be permanent.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1229
She has applied for access into the NDIS but the application was rejected on the basis that all possible treatments have not been attempted. That is despite there being no instructions given on the application form that asked for a list of all treatments attempted. It only asked for examples of treatments which are currently in progress or were administered in the past.
There are two major problems with this procedure. First, there was no request in the instructions for the application for a detailed list of all treatments which were attempted, or for medical opinion that all appropriate ones had be attempted, Furthermore, they would not divulge what treatments they would regard as appropriate. This lack of transparency makes it very difficult to rectify a wrongful rejection by either providing evidence of the treatment having been attempted, or by producing medical evidence that the treatment absent was not appropriate, or could be harmful, in the applicants particular situation.
Second, the judgement of whether there exist additional treatments which would be appropriate was left to a junior NDIS administrative staff with no medical training and no familiarity with recent recommendations about the appropriate management of my daughter’s medical condition.
The above problems are mostly likely to worsen with the introduction of the proposed changes to the guidelines for access to the NDIS.
In particular, the reduction of appeals in Amendment will not allow decision based on interpretation or incorrect lists of appropriate treatments used by the NDIS to be challenged.
Thank you for the opportunity to participate in submission process. Do note I support the need to cut NDIS spending to ensure the sustainability of NDIS.
28/5/2026