National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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From Date Fri 10/07/2026 3:40 PM To

Submission to the Senate Standing Committees on Community Affairs Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

To Whom It May Concern,

I am writing as a person currently in the process of an NDIS application, to express my concerns about the proposed amendments to the NDIS.

As someone who has lived with post-viral Myalgic Encephalomyelitis (ME/CFS) for 24 years after a severe Ross River Virus infection, and who has been housebound for five years and bedridden for over a year following a COVID-19 infection, I have direct, lived experience with systemic neglect, institutional isolation, and the widespread medical dismissal of Australia’s ME/CFS community and with how legislative frameworks fail severely ill Australians.

The Critical Risk of the “All Appropriate Treatment” Rule

I am deeply concerned about the tightened permanency rules in the new Bill requiring applicants to prove that they have undergone “all appropriate treatment” options before an impairment is legally classified as “permanent.”

How does someone with ME/CFS do this when there are currently no regulatory-approved treatments or cures for the disease?

Australia is still working on guidelines, lagging significantly behind the US (Mayo Clinic) and UK (NICE). While they overhauled their guidelines several years ago to remove harmful treatments, Australia is in the middle of a multi-year process to update its framework, not expected to be completed until 2028.

Because there is currently no direct, government-run or mandated national/state ME/CFS education scheme for doctors in Australia, ME/CFS literate doctors are scarce and many GPs still rely on the outdated framework.

Until the guidelines are revised, which could be several years away, this potentially subjects patients to a harmful cycle where they may be forced to try Graded Exercise Therapy (GET) just to satisfy NDIS requirements. GET has proven to be potentially very harmful to ME patients, and both the Mayo Clinic and NICE guidelines recommend against it.

The Failure of a Rigid Functional Capacity Model on Dynamic Disability

Another serious concern I have is with the proposed shift to a strictly defined functional capacity model.

ME/CFS is a dynamic disability; it is not the same as being a paraplegic where your care needs are pretty constant. Just because I can wash my hair without support one week does not mean I will be able to do so without support the following weeks or months. My functional capacity, though very low overall, changes daily.

One day I can’t even make it from bed to my wheelchair, and making it to the toilet and back is extremely challenging, another day I can do it with more ease. This doesn’t mean my overall functional

CapacityNationalhas improved,

Disability Insuranceit just meansSchemeI mightAmendmentbe able(Securingto wheeltheoutNDISStofortheFuturekitchenGenerations)and makeBill a2026piece of toast for a few days, where I was unable to do so at all, for the three months prior. Then, it will swing back the other way and I will lose that capacity to do it again.

I might perform ok in a functional capacity test on the day, then go into severe PEM for the following weeks/months as a result.

How will this new model assess dynamic disabilities without overestimating functional capacity and subsequently underestimating the appropriate level of support that is actually essential for daily living? If dynamic disabilities are assessed in the same way the NDIS assesses predominantly static disabilities, it will make it even harder for people with dynamic disabilities to access the NDIS.

3. Flawed Static Budgeting and the “Use It or Lose It” Penalty

I have serious concerns surrounding budgets operating on a flawed, static assumption of disability. My care needs change entirely based on the fluctuating severity of my illness, relapses, and Post- Enterional Malaise (PEM). Just because I might use less one year, does not mean I will need less the following year.

Reducing a subsequent budget simply because funds were left unspent in a previous year, will punish me for periods where I am either too ill to physically tolerate therapy or am experiencing a temporary shift in baseline. This will put me at risk. An underspend in a dynamic illness does not equal a “lack of need”; it reflects the unpredictable nature of the condition.

It also creates a paradigm where participants may feel compelled to find ways to spend their entire funding allocation, even at times where they don’t actually need to, out of fear that the NDIS will assume a “lack of need” and reduce the following year’s budget—which might actually be a period where the participant needs it even more.

Policy makers might try and solve this issue with suggesting that the applicant applies for a ‘Change of Circumstance’ but this is unrealistic for people with dynamic disabilities as they can fluctuate back and fourth quite frequently and have very little capacity to go frequently jump through hoops to secure adequate support.

Ideally, if a participant with a dynamic disability does not use their entire allocated budget, the remaining funds could be reabsorbed back into the NDIS and the following allocation should remain the same to accommodate for potential downward fluctuations in baseline and higher needs.

4. The NDIS “Pay-to-Prove” Burden and Telehealth Obstacles

I have been in the NDIS application process for 8 months now. In my experience so far, the application process has been more like preparing to defend myself in court than obtaining supported access to the help I so desperately require. NDIS language is very specific. I have had to learn the language before even beginning to understand how to put together an application, expending energy that a severe ME sufferer can ill afford. At times it has sent me into week and months long flares.

Because ME/CFS currently has no diagnostic test available, patients must collect mountain-loads of evidence to prove their disability. This is incredibly difficult for someone with a severe energy limiting condition, especially when we are blocked from accessing Medicare rebates for telehealth simply because we are bedridden and literally too sick to attend an appointment without serious risk to our health.

Severe ME/CFS patients were not properly considered when the exemption criteria for the MBS were formulated and rules were changed to mandate in-person appointments for telehealth rebates. I have been denied a Medicare rebate for telehealth appointments with an Emerge Australia recommended GP and even with the GP my neurologist specifically referred me to, so that they could work together to cO manage my care, not because I didn’t want to make the effort to attend a face to face appointment, but because I was too unwell not safely do so.

Being denied a Medicare rebate while trying to gather supporting evidence has cost me thousands of dollars out of pocket. This places a heavy financial “pay-to-prove” burden on applicants, causing a significant barrier for individuals with severe ME to being able to access the NDIS at all.

Conclusion

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

The Australian government needs to designate more funding for research into ME/CFS, the development of a diagnostic tool, and approved treatment options, as well as a mandated national education scheme for all doctors. They must bring medical professionals up to speed before expecting us to provide evidence that we have undergone “all appropriate treatments” and revisit the MBS telehealth exemption criteria to include those of us that are literally too ill to attend in person appointments so that we can access basic care without putting ourselves at risk of deterioration.

With 250,000 Australians suffering from ME/CFS—\a number likely much higher since Covid—we cannot afford to be forced into rigid, static frameworks that put our health and survival at risk.

Thank you for considering my submission.

Your sincerely,