Submission 3324 — Ms Deanna Sketcher — NDIS Future Generations Bill | External submission

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

Hello,

My name is Deanna. I am currently an NDIS participant.

I am writing with serious concerns and in opposition to this bill.

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

2026

Submission Time Frame

Firstly, I would like to point out that the time frame given to the community to submit responses is inadequate and inaccessible. I didn’t even learn of this bill until last weekend.

I personally am in the middle of an ART hearing with the NDIS currently, so to write this submission has been a balancing act for time which is causing me significant distress and burn out.

Cyda Aus & Disability Advocates – The new bill

Babes with mobility aids

I reached out to QAI to see if they had had a chance to look over the bill and could provide me with an overview of it, however again due to the time constraints and they’re current workload, they had also not had a chance to properly read over it themselves. Instead, they could only send me resources.

Having the Submissions close on the 29th May 2026 is not enough time for everyone to put in a submission, if they wish to do so.

Further, not notifying people of the extension until Monday inhibits people from being able to respond with the minor time adjustment.

Court Case Reversals:

This proposed bill significantly alters the legislation and decisions already in place. In several cases it actively goes against the decision.

These include:

❖ Federal Court decision in McGarrigle v National Disability Insurance Agency [2017] FCA 308 (‘McGarrigle’) ❖ Federal Court decision in NDIA v Sutherland [2026] FCA 3 (‘Sutherland’) ❖ Federal Court decision in NDIA v Davis [2022] FCA 1002 (‘Davis’) ❖ Federal Court decision in CEO of the NDIA v Eastham [2026] FCA 147 (‘Eastham’)

“While Parliament has the power to make laws that override court decisions, many of these decisions established precedents that benefitted people with disability. By overriding these cases the Bill will make the NDIS harder to access and/or reduce supports for participants.” 1

1 Justice and Equity Centre

Functional Capacity Changes

As stated, I am currently undergoing the ART process with the NDIS (2025-006-990). A significant part of their argument is to do with functional capacity and permanency of impairments over permanency of the diagnosis/conditions causing said impairments.

Despite the NDIS already recognising that there are impairments with functional capacity, they argue that it’s not severe enough in those categories and ignore the impairments in others.

An example I have from my own case being sleep. The NDIS says it’s not relevant, that disturbances in sleep are not relevant. This simply isn’t the case. Sleep is a requirement of living. You can die if you do not get enough sleep. This has been medically proven. Further, sleep is how the human body repairs itself physically, cognitively and emotionally. How much sleep you get the night before determining the fatigue and capacity you will have for that day. If you suffer from constant sleep difficulties like I do due to pain, then that fatigue and exhaustion is accumulative, and your body isn’t able to recover.

Despite this, the NDIS ignores that information when determining a person’s functional capacity.

“Many people with disability say a standardised assessment would be inappropriate. We have also heard concerns from the community and experts that a standardised assessment tool will not be able to capture the full range of disability, resulting in some people being overlooked or disadvantaged.” 2

Further, 10 News even did a spotlight on the concerns with the changes to functional capacity.

I also found this person who lays out the problems specifically in regard to functional capacity for those with Autism. The NDIS has already been trying to push those with autism off the NDIS.

Is sleep going to be a part of this standardised functional capacity tool that’s being suggested? What things are going to be missed because it’s not deemed relevant.

“Courts have used the NDIS Act’s objects and principles to guide how the Scheme should be applied. Together, these changes shift the focus of decision-making about ‘reasonable and necessary’ supports away from the individual needs and goals of participants and toward the financial sustainability of the Scheme.” 3

2 Justice and Equity Centre 3 Justice and Equity Centre

Whole of A Person

“The Bill undoes the ‘whole of person’ approach to funding supports that the disability community secured in the 2024 amendments to the NDIS Act (proposed section 34(1)(aa) and accompanying note). These amendments addressed a longstanding issue in NDIS decision making concerning how people with multiple impairments should be funded for supports, where only one or some of their impairments qualify for access to the Scheme.” 4

“The proper application of these provisions was confirmed in February 2026 by the Federal Court in the case of CEO of the NDIA v Eastham [2026] FCA 147 (‘Eastham’). In Eastham, the Court described this approach as ‘commonsense’ and made clear the law requires supports to be funded even if the need for the support has multiple causes, as long as one cause is the impairment that gave the person access to the NDIS.”5

“The Explanatory Memorandum to the Bill says the outcome in Eastham represented an ‘unintended expansion’ of the Scheme (page 24). But this does not reflect the Government’s position set out in the Explanatory Memoranda to the 2024 amendments, or the understanding of the disability community from discussions at the time.” 6

I myself have multiple conditions, which I’ve included below.

Psychosocial            Skin / Severe Pain       Musculoskeletal        Other

Asperger's (Now ASD    Hydradenitus Supretiva   Scoliosis (x2-3)         Chronic Suppurative

lvl 2) Lung Disease

Eczema (Atopic Musculoskeletal

ADHD                   dermatitis)              Aetiology            Compromised

Immune System

Sensory Processing     Dermatographia (Skin    Tennis Elbow -left

Disorder                Writing)                                        Lazy Right Eye

Bakers cyst-left knee

Generalised Anxiety Aphthous Ulcers

Disorder Costochondritis

Executive Dysfunction Raynaud’s

Phenomenon

POT’s (Unofficially)

I was recognised originally only for my ASD, and I am still fighting to have my Scoliosis and HS recognised by the NDIS. Making it even harder is unfair to participants and will make the NDIS inaccessible.

4 Justice and Equity Centre 5 Justice and Equity Centre 6 Justice and Equity Centre

“Permanent” Forced Treatments

These changes will force participants to have to undergo invasive procedures. It removes bodily autonomy and participants choice and control.

For Example, I have a skin condition called Hidradenitis Supretiva. I was discharged from my specialist’s care in 2023 as we had run the full gambit of treatments, and was referred back to my GP for pain management. I now use opioids (codeine & oxycodone) for pain management as well as lidocaine gell. Despite having provided all this documentation to prove my condition is permanent, the NDIS argues that the impairments aren’t permanent if they pain can be managed. The pain is not managed when I still end up in the Hospital’s emergency department requiring surgery every 3-4 months. Again, this information has been provided to the NDIS, and yet they still argue the permanency.

The other fear is being forced to have even more invasive surgeries than the ones I’m currently already having to do, such as a full auxiliary deroofing. There are severe complication that can arise from this surgery. It is a full deroofing, meaning everything in the area. Not only would this cause significant scaring, muscle and tissue damage, there is no guarantee it would help. Especially when the smaller surgeries haven’t proven to be effective. Further, as has been proven by the marginally smaller surgeries I have repeatedly undergone, it doesn’t actually stop the HS from coming back. In fact, it makes it worse as the scar tissue and tissue damage gets progressively worse.

To be forced to do a surgery or a specific treatment that may not be safe in the individual case removes a participant’s bodily autonomy. It removes the choice and control over there own body and life. And is inhumane to subject someone to that forced pressure.

Others have likely already provided their own reasoning, and Dash has provided a video as well explaining the fear of forced treatments.

This video explains the fear for “permanence” participants now have because of the need to “exhaust all other options.”

“The Bill introduces several provisions that would prevent people accessing the NDIS if there are treatments that could improve or reduce the effect of their impairment(s). One of these provisions would reverse the Federal Court’s decision of NDIA v Davis [2022] FCA 1002 (‘Davis’).”7

7 Justice and Equity Centre

Reduced funding for types of support

There are significant fears in regard to the cutting of NDIS funding.

As mentioned, I am currently in the process of arguing with the NDIS for supports in the ART. I previously had to do so through the AAT pack in 2022-2023.

The NDIS has cut my support several times already, and having to go back and argue again and again for the same basic supports such as Physiotherapy is exhausting. It breaks a person’s spirit down, and I speak from experience.

“Ministerial reductions are not made on a plan-by-plan basis and cannot be appealed. The reduction applies even if it leaves the participant with insufficient funds to purchase the support.”8

Further the bill is creating its own cuts which are causing further fear. If a decision cannot be appealed, what process do participants have to argue for necessary supports?

8 https://teamdsc.com.au/resources/legislation-deep-dive-access-and-planning 9 Justice and Equity Centre

Maximum funding

Setting maximum amounts of funding for a support does not work, especially with fluctuating conditions. More support may be needed in one period than in others.

This change also reduces the choice and control participants have over their own supports.

“Additionally, the legislation would give the Minister the power to specify the highest amount the NDIS will fund for a particular support. This includes deciding for a support or group of supports…”10

10 https://teamdsc.com.au/resources/legislation-deep-dive-access-and-planning 11 Justice and Equity Centre

End Dates and Plan funding carry over

Plan funding carrying over is essential, especially with the NDIS terrible current system of 3-month funding periods.

To get Mid cost or High-Cost assistive technologies, you have to say up the funding over time to have enough o buy the support item you’re requiring.

For example, a Hi-Low Bed (accessible bed) which has all the functions of a hospital bed. These cost several thousand dollars to get, including things like safety guards, hospital grade mattress covers, back up batteries for safety. Once you’re OT has conducted the test and you’ve found a specific one to meet your safety needs (eg. Pressure wounds. Height adjustments) It takes time to save up that amount.

Not allowing participants to save funding to access supports they need is going to cause more problems for the NDIS and harm to participants.

Unscheduled plan reassessments

Removing the ability for participants to request a plan change is dangerous, especially with the new plans being made for 3-year periods. A lot can change in that time. It is dangerous to be so restrictive to change when supports are needed.

“Under the proposed changes, only participants, their plan nominees or a person who with parental responsibility for a child will be able to request plan reassessments. Support coordinators, plan managers and other providers won’t be able to make this request on the participant’s behalf.” 12

The Explanatory Memorandum makes clear that if a participant runs out of funding early, but their support needs have not changed significantly, their request for reassessment will be refused (page 22).

12 https://teamdsc.com.au/resources/legislation-deep-dive-access-and-planning

No Privacy Protections for Information Requests

This bill provides no protections for Participants where the NDIS is invasive about information being requested of a participant.

Jordon Steel John

Whistleblower Protections

It also still does not contain any whistleblower protections, to make the NDIS a safe place.

Jordon Steel John

Being forced off the scheme

Forcing participants of the scheme if they are uncontactable for 90 days is inhumane.

“The Explanatory Memorandum suggests that ‘reasonable attempts’ might include writing to the participant, giving them ‘enough time’ to respond, and ensuring they are not unable to reply due to circumstances such as hospitalisation (page 58). However, the Bill does not require these attempts to meet a participant’s accessibility needs. It also does not require the NDIA to consider whether plan suspension would pose a risk to the participant (even though the Explanatory Memorandum suggests risks should be considered).”13

Further, there is no note on how the participant requests to be contacted.

I have my own notes to be contacted via email, due to sensory issues with processing noise making phone calls difficult. However, the NDIS has ignored this SEVERAL TIMES, and has attempted to call me despite it being noted on my file.

“A person can seek a review of a decision to suspend their plan.”14

I have had to put in the requests for internal reviews every time I have had to argue with the NDIS through the AAT and ART. It’s meant to be 90 days for a response, 3 months. That means a participant will be left without support for a MINIMUM of 3 months. Again, I speak from experience about it being a minimum 90 days. My last response the NDIS cancelled the internal review and didn’t bother with it because we were already past the minimum time and I had started the ART process.

This will cause severe harm to participants, and likely deaths where safety supports cannot be provided during that time.

13 Justice and Equity Centre 14 Justice and Equity Centre

Overuse of “Parental Responsibility”

The shift and changes to force more responsibility onto parents for the medical care of their children is severely damaging to the relationships these disabled kids will have with their parents. The parents will end up resenting their own kid for the physical, emotional and financial burden they will become.

When my mother tells the story to me or her friends about fighting for an ASD diagnosis for me, she explains her reasoning as “I knew something was wrong with you.”

This video covers the concerns with the multiple jobs now being forced onto parents for the care of their children: Too much work on parents

Additionally in this video Cydas goes over this concern, and the problems that have already begun to

show: Cyda Aus – Parental Responsibility

The NDIS is trying to push the below listed items onto parents as their parental responsibility for “Substantial care and support”

Supervision
Personal Care
Transport
Emotional Support
Behaviour support These services should be provided by those trained to do so, including:
Support workers
Nursing staff and support workers
Transport funding
Psychologists
Occupational Therapists This push of medical care onto parental responsibility will be damaging to the carers, and dangerous to the participant. Parent’s are not trained psychologists, or nurses, or occupational therapists. They do not have the training to safely deal with those issues, let alone the time to be parents and all those other roles.

This will result in kids being abandoned at hospitals and other places when the carers are burnt out. Further, it could result in the death of participants if carers have mental breakdowns because of the stress and harm their children.