Submission to the Senate Standing Committee on Community Affairs

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

Submitted by: Martin McLean Date: 25th May 2026

Who I am:

I work in the media industry. I’m not on the NDIS myself. I’m writing on behalf of a close friend of mine who is. I’ve known him for fifteen years — the last four years of which, I’ve been one an ‘unofficial support’ during his diagnosis. I’m keeping him unnamed in this submission, but these experiences are real, and my beliefs come from an informed first-hand experience.

My friend is happy for me to write this and to tell you about his situation. I’m writing because I’ve had a front-row seat to the great things the NDIS has done for him, and because the proposals in this Bill would negatively impact his life, and many lives like his.

About my friend:

My friend has relapsing-remitting multiple sclerosis. Before he was diagnosed, he was a firecracker— one of the most driven, energetic people I’ve ever had the privilege of knowing. After a traumatic medical episode, I watched his health and independence fall away faster than I’d have thought possible. Getting the groceries, getting to and from work, keeping on top of the housework—all turned into things that cost him more energy than he had most days.

MS doesn’t hold still. Some weeks are alright; then a relapse hits and knocks him flat. And it never shows up as just one thing—it’s the fatigue and the mobility and a handful of other symptoms all at once, and they don’t keep to a schedule. On top of all that, he lost his job around then to an invalid termination, right when he could least cope with it. He ended up moving in with his grandparents. One works full-time and the other is disabled himself, so they help where they can but there’s only so much they can do.

This is the exact situation the NDIS is supposed to be for. It has provided him the ability to remodel parts of his grandparent’s home to be accessible—which not only benefits him, the NDIS Participant, but his grandparents in their old age. NDIS helps him with much of the housework, the errands, and driving him to the supermarkets and multiple doctor’s appointments he has per month. It also provides reduced cost medications and therapies he relies on—so he gets to live his own life instead of having it shrink around him. Within a year, my friend went from hardly getting out of the house… to working part-time, contributing to his communities and being an upstanding and productive member of the Australian economy. The Supports are what has made this all possible. And it’s those Supports this Bill puts at risk.

What worries me about the Bill:

1. The eligibility test. As I understand it, the threshold for getting in: ‘functional capacity’ would be set in policies outside of the Act, so it can be changed without Parliament having a say, or any fair due process.

Because the bar can be lifted at any time without scrutiny, a Participant who qualifies today could find themselves shut out next year by a rule change they never saw coming, with no chance for anyone to argue against it first. People can’t plan a life around an entitlement that can move.

A possible compromise: Set the threshold in the Act itself, or at the very least require that any change to it be disallowable by Parliament and subject to consultation before it takes effect.

2. Only funding the ‘entry condition’. In the proposed changes, Supports would only be funded for the single impairment that got a person approved, and anything else they’re dealing with stops counting.

For someone like my friend, whose fatigue and mobility pile on top of one another, this means support for daily needs simply disappears because those needs are filed under the ‘wrong’ condition. The disability does not get any smaller; the funding just stops matching it.

A possible compromise: Keep funding tied to a Participant’s assessed functional need, even if access is granted on a primary impairment — so ‘co-occurring conditions’ that affect daily life are still counted.

3. Letting the Minister cut categories of support. I understand the Minister would be able to scrap entire categories of support — community, social, capacity-building — without touching the Act.

The Supports that keep my friend connected to his work and community, are exactly the kind that look easy to cut when standing out the outside… because you can’t see what they’re doing until they’re gone.

A possible compromise: Require that removing or narrowing a category of support go through Parliament as an amendment; or at minimum be a disallowable instrument with a transition period or ‘grandfathering’ approach.

4. Returning unspent money at renewal. Money goes unspent for reasons that have nothing to do with rorting this good system. There have been a few times my friend has been unable to book services for reasons outside of his direct control. Not to mention the waitlists of some providers. Returning unspent funds only punishes people for being unwell, or for lack of capacity from local providers. In fact, I believe that this change will only pressure some Participants to spend funds they don’t yet need, just to avoid losing them. A possible compromise: Let the unspent funds roll over where the Participant can show certifiable proof of the legitimate reason they went unspent. Illness or flare-up, hospitalisation, a provider waitlist, self-management, etc. I urge you to not treat every unspent dollar as forfeit.

5. Scheme sustainability.

I see budget sustainability would become part of the ‘reasonable and necessary’ test, which until now, has asked one thing: what does this person need?

With this proposed change, you give the Provider a way to say No to something a person genuinely needs, for no other reason but the price — the very thing the original Act was written to stop. A possible compromise: Keep the ‘reasonable and necessary test’ as-is. Pursue scheme sustainability through better fraud control and pricing.

6. Making you exhaust ’all appropriate treatment’ first.

This is the biggest point for me. It took years before my friend could even get a MS diagnosis. He was never taken seriously. Hand-waved away by every excuse a doctor could lazily muster, scans not reviewed correctly, all these ‘small things’ kept slowly building up.

Even after a seizure in my car and a trip to A&E, all the wrong treatments were prescribed. It took many months to work out what we had already concluded (in our un-professional opinions). Even then, his original application to the NDIS was denied and more rounds of trying different therapies and medications continued.

It wasn’t until after my friend got the full Supports he deserved, that the correct treatments began and his quality of life improved.

A possible compromise: Drop the ‘exhaustion’ wording and instead ask only that a person’s treatment be clinically reasonable in their personal circumstances. In most cases, Disabled People can make a more-informed decisions quicker, than even some of the best professionals.

7. Broad information-gathering powers.

I understand the Agency would get much wider powers to collect information. Even with the greatest of intentions, there is nothing said about warrants, limits on passing data to other agencies, or even telling the Participant that it is happening.

Without any limits, deeply personal information that a Participant handed over could be repurposed and shared anywhere. I believe this is a huge privacy intrusion, especially considering my friend had no choice but to disclose these details to gain NDIS access. A possible compromise: Write reasonable safeguards into the Act: a warrant requirement on behalf of the Participant (or a next of kin/someone with authoritative powers) to use, clear limits, and notify the person whose information is being accessed (except where a court orders otherwise).

8. Missing paperwork becoming automatic debts.

Missing records would now automatically become a debt, with the burden on the Participant to prove otherwise. People already at a disadvantage, who struggle to manage a disability, should not have the onus of proof, to avoid debt which would just compound their hardships further. We’ve been here before with ‘Robodebt’. Let’s not do it again.

A possible compromise: Keep the onus on the Agency to establish that a payment was improper before any debt is raised. Allow reasonable substitute evidence where records may be incomplete.

9. Automated decisions.

On the topic of ‘Robodebt’, we have all learnt that some decisions cannot be automated well.

I suggest reviewing the findings of the related Royal Commission, and what they warned against. If a decision to reject access or continued access is made automatically, then that must be made transparent to the person for a fair repeal.

10. Handing price-setting to the Minister.

The price of Supports will decide whether services are worth providing and whether they exist at all. Nobody knows the necessity of a service better than my friend and his healthcare team. And so it goes for every individual Participant. Moving this into a politi cian’s hands, means that prices set too low simply makes Supports vanish from the Provider market. A possible compromise: Price setting should be with an independent body, who are informed by cost evidence. If it was to move to the Minister’s discretion, then require all pricing decisions be made transparent against published criteria.

To conclude: My friend is exactly who the NDIS was built for. With the right support behind him, he lives his own life, contributes to the Australian economy, and is a pillar of his communit ies.

Put all these changes together and they make that support harder to hold onto and easier to lose - not because of anything he’s done wrong … but because the policies start treating complex disabilities such as MS, as if was someone rorting the system.

I’m not asking the Committee to throw the Bill out entirely; but I please ask that the above points be looked at closely, and some of my suggestions be taken onboard.

Thank you for your time and giving me a chance to have a say this on behalf of my mate. I’m glad for this letter to be published if you so wish.