Submission 1972

Submission to the Senate Community Affairs Legislation Committee

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

I’m writing as a person with significant disability and complex medical needs, and as someone who’s deeply concerned about the proposed and recent changes to the NDIS.

I oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 in its current form.

I understand that the NDIS needs to be financially sustainable. I also understand that fraud, poor provider conduct, inflated pricing, and misuse of public money need to be dealt with properly. Those problems are real, and they shouldn’t be ignored.

But I don’t believe the answer is to make access harder, reduce supports, narrow eligibility, remove appeal rights, or give the government and NDIA broader powers in ways that place disabled people at greater risk.

The NDIS was created to support Australians with permanent and significant disability to live with dignity, safety, independence, and connection. It shouldn’t be reshaped mainly as a cost-cutting program.

I have clinically diagnosed hyperkalemic periodic paralysis, a rare neuromuscular channelopathy that causes episodes of severe weakness and full-body flaccid paralysis. During attacks, I’m conscious and aware, but I may be unable to move, speak, open my eyes, or respond normally.

Submission 1972

can have difficulty swallowing, breathing deeply, and communicating what’s happening. These episodes are frightening, disabling, and can create real safety risks.

My disability and health conditions aren’t always obvious from the outside, and my capacity can vary significantly depending on symptoms, triggers, recovery time, and the supports available around me.

This matters because disability isn’t always simple, visible, or easily captured by a standardised assessment. A person can look “fine” at one appointment and still live with a serious permanent impairment that affects daily functioning, safety, participation, independence, and family life.

My concern is that these changes move the NDIS further toward rigid eligibility rules, reduced individualised assessment, narrower support categories, and less ability for disabled people to challenge unfair decisions. For people with complex, rare, fluctuating, or poorly understood disabilities, that’s dangerous.

I’m particularly concerned about proposed changes relating to “permanence” and the expectation that a person may need to have pursued all available treatments before being accepted as having a permanent impairment.

For many disabled people, including people with rare or complex conditions, “treatment” doesn’t mean cure. Management may reduce risk or improve stability, but it doesn’t remove the underlying impairment. In my case, the fact that I may use medical management, pacing, trigger avoidance, emergency planning, or other strategies doesn’t mean my disability isn’t permanent, significant and fluctuating.

There’s also a serious practical problem with treating “available treatment” as though it’s genuinely accessible. A treatment might technically exist but be unaffordable, geographically unavailable, unsuitable for the person, too risky, not supported by local specialists, or only theoretically relevant. This is especially true in regional areas like Gladstone and Central Queensland, where access to specialist care can be limited, delayed, expensive, and exhausting.

Submission 1972

Disabled people shouldn’t be denied NDIS access or support because a theoretical treatment exists somewhere, at some cost, under some circumstances. The test should be whether the person has a permanent and significant functional impairment in real life, not whether someone can point to an intervention that might theoretically help.

A related problem is the constant need to re-prove permanent disability. For people with lifelong or long-term disabling conditions, the system should not keep requiring fresh rounds of expensive evidence to prove the same underlying reality again and again.

This is especially frustrating when assistive technology is needed. Every time new AT is required, excessive amounts of funding can be spent on additional lengthy reports that essentially say what has already been said before: the person has a permanent disabling condition, their functional impairment is real, and the requested support is connected to that impairment. That money could be used far more sensibly on the actual support, rather than repeatedly paying professionals to re-document the same facts.

I’m not suggesting evidence should never be required. Of course supports need to be justified. But there needs to be a much more practical, common-sense approach where existing evidence of permanent disability is recognised, and new reports are only required where they genuinely add something useful. Otherwise the system burns money, time, clinical resources, and participants’ already limited energy for very little benefit.

I understand the desire for consistency in assessing functional capacity. Consistency can be good if it leads to fairness. But consistency becomes harmful if it turns into rigid standardised assessments that don’t fit complex disability.

Rare conditions like mine don’t fit neatly into normal check boxes. My capacity can change dramatically, and a standardised assessment may completely miss the seriousness of what happens during an attack, the safety risks involved, or the recovery time afterwards. I may be able to do something sometimes, but not safely, reliably, repeatedly, or without consequences.

A narrow assessment might record that I can complete a task while missing the fact that doing so may trigger serious symptoms afterwards, require recovery time, or be unsafe without support. Any assessment framework must account for fluctuating conditions, rare and poorly understood

Submission 1972

disabilities, invisible disability, safety risk during episodes, fatigue, brain fog, weakness, paralysis, and the difference between doing something once and doing it reliably.

The NDIS shouldn’t punish people for having good days, supportive families, or partial coping strategies.

I’m also concerned about proposed powers that could reduce funding for whole groups of supports, including social, civic, and community participation and capacity building daily activities.

These supports are sometimes spoken about as though they’re optional extras or lifestyle luxuries. For many disabled people, they’re not. They’re a crucial part of staying connected, building capacity, reducing isolation, maintaining mental health, participating in community life, and preventing deterioration.

For people whose disability limits independence, communication, energy, mobility, safety, or confidence, community participation isn’t simply “going out”. It can be the difference between being part of ordinary life and becoming increasingly isolated at home.

Reducing these supports may look like a saving on paper, but the long-term cost can be much higher. Isolation, loss of function, carer burnout, crisis presentations, increased health needs, and greater dependence don’t disappear because a support category has been reduced. They simply move somewhere else — often onto families, health systems, emergency services, and already stretched communities.

Capacity building supports also matter because the goal of the NDIS shouldn’t only be survival. It should help people develop skills, maintain function, safely participate, and reduce avoidable dependence where possible.

If capacity building supports are reduced, delayed, or made harder to access, people may lose opportunities to become more independent. That’s the opposite of sustainability. Good early and ongoing support can prevent people from needing more intensive support later.

Submission 1972

For disabled people with complex conditions, capacity building also needs to be individualised. A generic program or mainstream service may not be safe, suitable, or available. Foundational supports may have a place, but they can’t be treated as a replacement for individualised NDIS supports unless they actually exist, are accessible, are appropriate, and meet the person’s real support needs.

In regional communities, the gap between “this service should exist” and “this service actually exists and can meet my needs” is often enormous.

I’m concerned about tightening access to unscheduled plan reassessments. Disabled people’s lives can change quickly. Health can deteriorate, informal supports can break down, housing or family circumstances can shift, and support needs can increase unexpectedly.

A system that only responds after needs become severe enough, formal enough, or administratively convenient enough isn’t person-centred. It also risks creating more crises. This approach will put people at increased risk of harm.

I’m also concerned about changes that would require a stronger link between funded supports and the impairment for which a person originally met access.

In real life, disability doesn’t always fit into neat administrative boxes. Conditions interact and symptoms overlap. People often more than one impairment. Functional needs may arise from the combined effect of disability, health, environment, support availability, and safety risk.

For people with complex or multiple conditions, this kind of narrowing could create unfair outcomes where real support needs are dismissed because they don’t fit neatly under one original access label.

The NDIS should assess the whole person and their functional support needs. It shouldn’t force people into artificial categories that don’t reflect how their disability is actually lived.

Submission 1972

I’m especially concerned about any proposal that removes or reduces a person’s ability to appeal an NDIA decision.

That is not a small administrative change. Appeal rights are a basic safeguard against unfair, incorrect, unreasonable, or poorly made decisions. Disabled people are already dealing with a system that can be confusing, stressful, inconsistent, and exhausting. Removing or weakening the right to challenge a decision would make the power imbalance even worse.

If the NDIA makes a decision that affects a person’s safety, independence, housing, care, mobility, communication, participation, or daily life, that person must have a meaningful right to appeal it.

Mistakes happen. Evidence gets misunderstood. Complex disabilities get oversimplified. Functional impacts get underestimated. Participants are sometimes assessed by people who don’t understand their condition, their risks, or their day-to-day reality.

The answer to those problems can’t be, “Bad luck, you can’t challenge it.”

Removing appeal rights would be absurd, unfair, and discriminatory. It would disproportionately harm the very people least able to navigate the system without strong procedural protections: people with complex disabilities, cognitive impairment, communication difficulties, psychosocial disability, limited informal support, limited money, or limited access to advocacy.

A fair system doesn’t fear review. If decisions are sound, transparent, lawful, and evidence-based, they should be able to withstand appeal. If they can’t withstand appeal, then the participant shouldn’t be forced to live with the consequences of a poor decision just because the system wants to move faster or spend less.

I accept that the NDIS must be sustainable. But sustainability must not become a reason to deny reasonable and necessary supports to people who genuinely need them.

Submission 1972

The scheme won’t be made fairer by shifting costs onto disabled people, unpaid carers, families, state health systems, or charities. A support doesn’t become unnecessary just because the budget is under pressure.

The better approach is to directly address waste, fraud, poor pricing, provider exploitation, thin markets, and administrative inefficiency without reducing the rights and supports of participants who rely on the scheme to live safely and with dignity.

I’m also concerned about the speed and complexity of these changes. Many disabled people, families, and carers are trying to understand significant legislative changes in a very short timeframe, while also managing disability, work, caring responsibilities, medical appointments, and ordinary life.

Legislation affecting disabled people should be developed with disabled people, not simply explained to them after the key decisions have already been made.

Trust matters. Many participants already feel anxious, exhausted, and afraid of losing supports. Changes of this scale need proper consultation, plain-language explanation, genuine co-design, and safeguards that protect participants from harm.

I ask the Committee to recommend that the Bill not proceed in its current form.

At a minimum, I ask the Committee to recommend amendments that:

• Protect access for people with permanent, significant, complex, rare, invisible, and fluctuating disabilities.

• Ensure “permanence” isn’t interpreted in a way that requires people to pursue every theoretical treatment option before being recognised as disabled.

Submission 1972

3. Make clear that a treatment shouldn’t be considered genuinely available if it’s unaffordable, geographically inaccessible, clinically unsuitable, unsafe, or only theoretical.

4. Stop requiring participants with permanent disabling conditions to repeatedly re-prove the same diagnosis and functional impairment when existing evidence already establishes permanence and disability.

5. Require additional reports for assistive technology only where they genuinely add new, necessary information, rather than forcing participants and the scheme to keep paying for lengthy reports that repeat what’s already known.

6. Ensure functional capacity assessments account for rare, complex, fluctuating, and invisible disabilities, rather than relying too heavily on standardised tools that may not capture real-life risk and impairment.

7. Require functional assessments to consider whether a person can perform activities safely, reliably, repeatedly, and without serious consequences.

8. Protect individualised supports, including social and community participation and capacity building supports, where they’re necessary for independence, dignity, safety, connection, and participation.

9. Ensure foundational supports aren’t used as a reason to remove NDIS supports unless those alternatives actually exist, are accessible, are appropriate, and meet the person’s needs.

10. Preserve meaningful access to plan reassessments when a participant’s circumstances or support needs change.

Submission 1972

• Avoid narrowing supports so severely that people with complex or multiple conditions are denied help because their needs don’t fit neatly into one administrative category.

• Protect the right of participants to seek review and appeal NDIA decisions.

• Ensure any powers to reduce funding for groups of supports are subject to strong safeguards, transparency, consultation, and parliamentary scrutiny.

• Ensure automated decision-making isn’t used in ways that remove individual judgement, clinical context, participant voice, or review rights.

• Address fraud, exploitation, inflated pricing, and poor provider behaviour directly, rather than reducing supports or rights for participants who rely on the scheme appropriately.

The NDIS isn’t just a budget line. For many disabled people, it’s the difference between safety and risk, participation and isolation, stability and crisis, dignity and dependence.

I’m asking the Committee to listen carefully to disabled people, families, carers, clinicians, and communities before allowing changes that may permanently reshape the NDIS.

The scheme can be improved. Fraud can be addressed. Provider behaviour can be regulated. Pricing can be made fairer. Administration can be strengthened.

But disabled people shouldn’t be made to carry the cost of reform through reduced access, reduced support, narrower definitions, unnecessary reporting, fewer review rights, or increased fear.

Please do not support this Bill in its current form.