In Australia, the support someone with motor neurone disease receives is decided less by how sick they are than by how old they were when they applied. Apply to the National Disability Insurance Scheme before turning 65 and you are in the disability system. Reach 65 without having applied and you are in aged care instead, where the funding available is a fraction of it — for the same disease, at the same stage.
How large a fraction depends on which figures you use, and we set both out below. On MND Australia’s modelling the gap is roughly threefold. On the aged care rules as actually written, the highest ongoing home support rate works out at around $72,000 a year, plus capped accounts for equipment and home modifications.
That is not a loophole. It is how two separate systems, written under separate laws, happen to meet.
It matters acutely for MND, because MND does not wait. The average time from first symptom to diagnosis in Australia is 13 months. Average life expectancy after diagnosis is two to three years. By the time most people have a name for what is happening to them, roughly a quarter to a third of their time since the first symptom has already gone. Every week spent waiting for an assessment is a week of support that will never be delivered.
In June 2026 the Australian Government moved on part of this. It amended the aged care rules so that MND is recognised as a condition warranting priority for Support at Home. This article explains what that change does, what it does not do, and what families can actually act on now.
Key takeaways
- An estimated 2,752 Australians were living with MND in 2025, projected to reach 4,304 by 2050 (MND Australia, Every Moment Matters, May 2025).
- Age at application decides the funding system. Applying before 65 means the NDIS; reaching 65 without having applied means aged care. The condition, prognosis and care needs are identical.
- The priority applies retrospectively to 1 November 2025, written into the Rules as a transitional provision — which is why reassessment campaigns use that date.
- The funding gap is large on any measure. MND Australia’s May 2025 modelling put average NDIS funding for people with MND at about $302,000 a year against an estimated aged care maximum of about $108,000. The Aged Care Rules as made set the highest ongoing home support level at about $72,000 a year, plus capped equipment and home modification accounts.
- Most people with MND are on the lower side of that line. Modelling for MND Australia estimated 63% of people living with MND in 2025 were aged 65 or over at diagnosis — 1,734 people — against 37% eligible for the NDIS.
- MND is now worth 5 priority points in the Aged Care Rules — exactly the threshold for “Urgent”. A June 2026 amendment added it to the points table, and a July 2026 amendment extended MND priority to assistive technology and home modifications.
- The Rules set a target wait of “within 1 month” for the Urgent category. That is a target, not a guarantee, and it applies to the priority queue rather than to the funding level someone is assessed at.
- Priority is about speed, not amount. Moving up a queue does not change the package level someone is assessed at, and that distinction is where most of the remaining criticism sits.
- Time to diagnosis is 13 months on average, against a life expectancy of two to three years — which is why access speed is not an administrative detail for this condition.
What is motor neurone disease?
Motor neurone disease is a group of progressive neurodegenerative conditions in which the nerve cells controlling voluntary muscle movement gradually fail, so that walking, speaking, swallowing and eventually breathing become difficult. There is no cure, and no single diagnostic test.
MND is not one disease. The most common form is amyotrophic lateral sclerosis (ALS); others include progressive bulbar palsy, lower motor neuron predominant ALS, primary lateral sclerosis, and MND with frontotemporal dementia. They differ in where symptoms begin and how fast they move, but all lead to progressive loss of muscle function.
It predominantly affects adults aged 50 to 70, though it occurs across a wider range, and it affects slightly more men than women. MND Australia puts prevalence at roughly 1 in 10,030 Australians.
Rarity is part of why diagnosis takes so long. A general practitioner may see one or two cases in an entire career, or none. Early symptoms — muscle weakness, cramps, fatigue — look like many more common things. The result is an average of 13 months from symptom onset to diagnosis.
Hold that figure against the prognosis. The average life expectancy after an MND diagnosis is two to three years. MND Australia estimates that life expectancy for people living with MND is 18 years below the Australian average, with 15,760 years of life lost to premature mortality in 2025 alone.
Why does the age of 65 decide MND funding?
Because the NDIS and aged care are separate programs under separate legislation, and the NDIS has a statutory age limit on applying. A person must apply to the NDIS before they turn 65. After that, the aged care system is the funded pathway.
For most conditions this is an awkward but survivable boundary. For MND it falls almost exactly on the age at which people are most likely to be diagnosed. A condition that predominantly affects people aged 50 to 70 is split unevenly by a rule written for a different purpose, with the larger share falling on the aged care side.
MND Australia’s modelling puts the split at 37% NDIS and 63% aged care in 2025. As the population ages, that is projected to shift further: by 2050, 33% NDIS and 67% aged care.
How the two pathways compare
| NDIS | Support at Home | |
|---|---|---|
| Eligibility | Applied before turning 65 | Aged 65 and over |
| Contributions | None | Income and assets tested, though personal care has carried no contribution since 1 October 2026 |
| Funding | No cap, not means-tested; average $302,000 per person per year (2025 estimate) | Estimated maximum about $108,000 per person per year (2025). The Rules as made set the highest ongoing home support level at about $72,000 a year, plus capped equipment and home modification accounts |
| Services | Personal care, therapies, assistive technology, home modifications, support coordination | Personal care, limited therapy, basic equipment |
| Time to an eligibility decision | Fast-tracked for MND, typically 2–5 business days | Not separately reported |
| Time to a funded package | Follows plan approval | Earlier home care packages: up to 15 months |
| Share of people with MND | 37% — 1,018 people in 2025 | 63% — 1,734 people in 2025 |
| Annual cost to the Commonwealth | $305.68 million | $187.45 million |
Source: MND Australia, “Every Moment Matters”, 30 May 2025, Table 1, developed by Evohealth from multiple sources. Two cautions on the funding row. The $302,000 average is an estimate derived from MND Victoria’s service experience and stakeholder validation, rather than from scheme-wide administrative data. The $108,000 maximum was modelled before the Support at Home rules commenced, and assumes a person receives the maximum of every component.
The two access rows measure different things, and it is worth being explicit about that because the distinction recurs later in this article. A 2–5 business day turnaround is a decision about eligibility. A 15-month wait is a wait for a funded package. They are not comparable, and anyone who places them side by side as though they are — including us, if we had left them in one row — is flattering one system and maligning the other.
Read the bottom two rows together. The Commonwealth spends more in total on the smaller group. That is the inequity in a single line: 1,018 people attract $305.68 million, while 1,734 people attract $187.45 million.
What changed for MND in June 2026?
In early June 2026 the Australian Government announced it would amend the Aged Care Rules to recognise motor neurone disease as a discrete, specific condition warranting urgent priority for Support at Home. The amendment was registered on 5 June 2026 and commenced the following day.
The announcement set out three things worth separating, because they are often reported as one.
First, priority access. MND was added to the rules as a circumstance triggering priority for Support at Home. In the Government’s words, the change “will give all older Australians with MND priority access to the Support at Home Program”.
Second, retrospective effect. The change was not limited to new applicants, and the mechanism is written into the Rules rather than left to a press release. Both amendments carry express transitional provisions — sections 610-1A and 610-1B — stating that the amended sections apply “on or after 1 November 2025”, the date Support at Home itself commenced. That date is why the current reassessment campaign uses it as its cut-off, and it reaches considerably further back than the June announcement alone suggests.
Third, a review. The Government directed the Department of Health, Disability and Ageing to conduct a rapid review of the Support at Home prioritisation mechanism, with advice due back within three months.
A second instrument followed on 17 July 2026, commencing 18 July, which extended MND priority into assistive technology and home modifications — the wheelchairs, hoists, communication devices, ramps and bathroom changes that determine whether someone can stay in their own home as function is lost. For a condition that takes mobility and speech, that second change is arguably the more practical of the two.
How the priority actually works
The detail is more interesting than the press release, and it is worth knowing because it tells you what to argue about if the system gets it wrong.
Support at Home sorts people into priority categories using a points score. Section 87-5 of the Aged Care Rules 2025 sets out both halves of it: a table of circumstances that earn points, and a table converting a total score into a priority category.
| Priority category | Points required | Target wait time |
|---|---|---|
| Urgent | 5 or more | Within 1 month |
| High | 4 | Wait time factor × 0.25 |
| Medium | 2 or 3 | Wait time factor × 1.5 |
| Standard | 1 or none | Wait time factor × 2 |
Source: Aged Care Rules 2025, s 87-5(1) and the definitions of “queue rate” and “target priority category wait time” in s 5-5, Compilation No. 12 (1 October 2026).
The June 2026 amendment added a single row to the circumstances table: item 7, “The individual had motor neurone disease at the time the individual’s most recent aged care needs assessment was undertaken” — worth 5 points.
Five points is exactly the threshold for Urgent. In other words, an MND diagnosis on its own now carries a person into the highest priority category, without needing any other circumstance to be present. For comparison, the row covering a need for urgent access to ongoing funded aged care services through the home support service group is worth 2 points.
Two details matter practically. The row itself is silent on age — though aged care eligibility still applies, so this does not open the aged care system to someone younger. And the priority attaches to MND being recorded at the time of the most recent aged care needs assessment, which is why getting the diagnosis explicitly onto the assessment record is the single most useful thing a family can do.
There is also an MND-specific provision that predates all of this and goes almost entirely unreported. Under section 211-10(2) of the Rules, a medical practitioner’s certification that a person has motor neurone disease extends the period of an assistive technology account from 12 months to 24, and up to 48 months on provider notification. For a condition where equipment needs change faster than funding cycles, that is a practical lever worth knowing about.
One footnote for anyone who checks the Federal Register and gets alarmed: the June instrument itself now shows as “No longer in force”, repealed on 8 September 2026. That is routine. Amending instruments are automatically repealed once spent, under section 48A of the Legislation Act 2003; their amendments live on inside the principal Rules. The MND row is still there in the current compilation.
The Government framed all of this as importing a lesson from the disability system into aged care — taking an approach that already existed for MND on the NDIS side and applying it to Support at Home.
What the NDIS side already had
The aged care change was explicitly modelled on an existing arrangement. In 2024 the Government stood up a dedicated NDIS team for new applicants with MND, and MND Australia records NDIS access for people with MND as typically fast-tracked within 2–5 days.
That is the benchmark worth holding in mind. On the disability side of the line, a person with MND can expect a decision in under a week. The June 2026 change was an attempt to bring the aged care side closer to that standard.
Does priority access fix the problem?
Not on its own — because priority changes when you are assessed, not how much you are assessed for. This is the single most important thing for families to understand, and the point most coverage of the announcement glosses over.
Support at Home allocates funding in classification levels. Being moved up a queue gets a person to the front faster; it does not change the level they land on when they get there. If the assessment places someone at a level that does not reflect how fast MND moves, arriving sooner at the wrong number is a smaller win than it sounds.
This is where the advocacy sector has pushed back hardest, and it has numbers. In September 2026 MND Australia reported that of 71 assessments examined by State MND Associations, 60% resulted in Level 4 support or below, and only about one in five reached the highest level, Level 8. For a condition that reliably progresses to total physical dependence, an assessment distribution weighted towards the lower levels is the heart of the complaint.
There is also a measurement question worth being careful about, because two very different numbers circulate.
- The Rules set a target wait time for the Urgent category of within 1 month. A target is not a guarantee, and it governs the priority queue.
- The Government has reported median times from referral for assessment through to support plan completion as consistently under one month.
- MND Australia’s own account of the period before the change described average waits of up to nine months for people with MND.
These measure different things. One is a target in the Rules. One is how long the assessment process takes. One is how long a person waits for support to actually start. Priority access operates on the first two. A family’s experience is governed by the third. Any provider or article that quotes one as though it answers another is misleading you — which is why we have not put a single headline “wait time” number in this article.
Where does this stand now?
The priority is law, but the assessment process behind it is contested. Anyone reading about the June announcement should know what happened in the five months after it.
The June commitment included a rapid review of the Support at Home prioritisation mechanism, with advice due back within three months. On 17 September 2026 MND Australia stated publicly that the three-month deadline “has passed without findings being made public”.
On 27 October 2026 MND Australia went considerably further, calling for the Integrated Assessment Tool — the instrument that determines Support at Home funding levels — to be suspended. It did so citing what it described as “the Commonwealth Ombudsman’s damning findings that the system is unfair, unreasonable and lacks adequate human oversight”.
We should be careful here, and we would rather be careful than dramatic. That characterisation is MND Australia’s. We have not been able to read the Ombudsman’s report itself to confirm its exact findings, and we are not going to quote a government report we have not read. What is on the public record is that MND Australia is asking the Government to:
- immediately suspend the Integrated Assessment Tool for determining Support at Home funding levels;
- establish an interim assessment process led by skilled assessors;
- urgently reassess everyone with MND assessed since 1 November 2025, using human assessors, with additional funding where allocations were inadequate; and
- formally apologise to people with MND left with insufficient care.
MND Australia also states that the Government’s response so far includes further reviews and an escalation pathway from January, which it does not regard as adequate — “People with MND cannot wait until January.”
For a family reading this now, the practical implication is the third point. If someone with MND was assessed for Support at Home at any time since 1 November 2025 and the funding level looks wrong, that is precisely the cohort a national peak body is publicly campaigning to have reassessed. That is a reasonable thing to raise, in writing, with My Aged Care and with your MND association.
It is also worth noting what is not in dispute. The priority provision itself is in the Rules and operating. The argument is about the funding level people land on once they get there — which is exactly the distinction the previous section drew.
What does this mean in practice for a family?
The honest answer is that it depends which side of 65 you were on when you applied, and the practical steps differ.
If the person was diagnosed and applied before turning 65, they are in the NDIS, and the MND pathway is designed to move quickly. The thing to watch is not access but reassessment — MND changes month to month, and a plan written for the person’s function in March may be wrong by September. Plans can be reassessed when circumstances change; for MND, they usually should be.
If the person was 65 or over, they are in aged care, and three things are now worth doing:
- Make sure MND is explicitly recorded in the aged care needs assessment. The priority provisions turn on MND being identified at the time of assessment. If it is not on the record, the priority cannot attach.
- If they were assessed before June 2026 and are still waiting, say so. The change applies retrospectively. Being already in the queue is exactly the situation it was written for.
- Treat the funding level as a separate question from the queue. If the assessed level does not match how the person is actually functioning, that is a review question, not a waiting question — and MND Australia has been actively campaigning on precisely this point.
If the person is approaching 65 and has symptoms but no diagnosis, this is the situation that costs families the most. Given an average 13-month path to diagnosis, someone who first notices symptoms at 63 can easily be diagnosed at 65 — on the wrong side of a line worth nearly $200,000 a year. It is worth raising NDIS access with the treating team early rather than waiting for diagnostic certainty.
What do the numbers show about neurological conditions?
Very little specifically about MND — it is not counted as a category of its own. This is worth stating plainly, since it shapes what anyone can honestly claim.
Per our analysis, MND does not appear as a separate category anywhere in the participant figures available to us for the year to 30 June 2026. The closest grouping is a disability group called “Other Neurological”, which also contains Parkinson’s disease and muscular dystrophy — both of which, unlike MND, are counted in their own right. Nationally that group covers 26,612 participants with it recorded as their primary disability; in Victoria, 6,428.
So when a provider website tells you how many NDIS participants have MND, be sceptical. That figure cannot be derived from what is actually counted.
What our analysis does show is instructive anyway. It puts the Other Neurological group’s average annualised committed plan budget at $207,000 — among the largest in the scheme, alongside spinal cord injury, acquired brain injury, stroke and cerebral palsy. These are big, complex plans.
And they are not fully used. Participants in that group spent 73% of their committed budgets in the year to 30 June 2026, against a scheme-wide average of 74%. On an average $207,000 plan that is roughly $56,000 a year committed and not spent.
Two honest caveats. This is not MND data — it is the closest published group, and the pattern is suggestive rather than evidence about MND specifically. And underspending has several possible explanations, including plans that start part-way through a year, periods in hospital, and budgets set above what a person actually needed.
Even allowing for all of that, the direction matters. Where time is the scarcest resource, funding that is approved and not used is not a budgeting curiosity — it is support that did not arrive while there was still time to use it.
Per SESI Care Services’ own analysis of participant data for the year to 30 June 2026. “Other Neurological” is a mixed group and is not a proxy for MND.
Questions to ask any provider supporting someone with MND
These separate a provider who understands the condition from one who does not.
- How quickly can you start? With MND, a four-week onboarding is not a neutral administrative fact.
- What happens when needs change between reviews? MND changes faster than most review cycles. Ask what the escalation path looks like in practice, and who makes the call.
- Who actually comes to the house? Ask whether workers are employed or subcontracted, and how many different people a client sees in a month. Continuity matters more than usual when communication is becoming harder.
- What can you not do? A provider that names its limits — and tells you who covers them — is more useful than one that claims everything.
- How do you work with the MND clinic and the treating team? Multidisciplinary clinic care is associated with better quality of life and survival. A home support provider should be coordinating with it, not operating separately.
- What happens if funding runs short before the next review? Ask the question before you need the answer.
How SESI Care Services supports people with MND at home
SESI is a registered NDIS provider, and we deliver Support at Home services across Victoria as an associated provider — meaning the client keeps their agreement and budget with their registered Support at Home provider, and we deliver the support. So we work on both sides of the age-65 line, in different capacities. We are honest about what that covers.
What we provide is the everyday, in-home support that makes staying at home possible: personal and domestic activities, cleaning, meals and household tasks, travel and transport, community participation, and support through life stage transitions. On the aged care side, the same support is delivered through Support at Home.
What sits elsewhere is the clinical layer. Neurology, respiratory care, speech pathology and the specialist MND clinic lead the medical side of this condition, and the everyday support we provide is built around what they recommend rather than in place of it. We would rather be clear about that than imply we lead care we do not lead.
Three things about how we work matter particularly for MND:
- At least two familiar workers for every client. When speech becomes difficult, a worker who already knows how someone communicates is not a convenience. Rotating unfamiliar staff through a home at that stage undermines communication at exactly the wrong moment.
- Our own employed staff — no subcontractors or labour hire. Continuity is something we can actually control.
- Support seven days a week, at any hour. MND does not confine its needs to business hours.
Our team includes speakers of Dari and Persian who can be rostered, and the wider team speaks Hindi, Punjabi, Bengali, Tamil, Malayalam, Mandarin, Sinhalese, Gujarati and Farsi. Whether a particular speaker is available for your suburb and days is something we confirm on the phone rather than promise in advance.
Frequently asked questions
Is MND covered by the NDIS or by aged care?
It depends on age at application. A person who applies to the NDIS before turning 65 is supported through the NDIS. A person diagnosed at 65 or over is supported through the aged care system, primarily the Support at Home program. The condition is the same; the funding system is not.
How much funding does someone with MND get?
MND Australia’s May 2025 modelling put average NDIS funding for people with MND at about $302,000 per person per year, and estimated the aged care maximum at about $108,000. Both are estimates: the NDIS figure comes from MND Victoria’s service experience rather than scheme-wide administrative data, and the aged care figure was modelled before Support at Home commenced. The Aged Care Rules as made set the highest ongoing home support level at about $72,000 a year, plus capped equipment and home modification accounts. Actual amounts depend on individual assessment.
What changed for MND in June 2026?
The Australian Government amended the Aged Care Rules to recognise MND as a discrete condition warranting urgent priority for Support at Home. The amendment was registered on 5 June 2026 and commenced the next day, and applies retrospectively to people already assessed and waiting. A further amendment in July 2026 extended MND priority to assistive technology and home modifications.
Does priority access mean more funding?
No. Priority affects how quickly someone is dealt with, not the funding level they are assessed at. Those are separate questions, and a package level that does not match someone’s needs is a review matter rather than a queue matter.
What happens to an NDIS participant with MND who turns 65?
Turning 65 does not by itself remove someone from the NDIS — the age rule applies to when a person first applies. Anyone in this position should get advice specific to their circumstances rather than relying on a general article.
How long does an MND diagnosis usually take?
MND Australia reports an average of 13 months from symptom onset to diagnosis, largely because MND is rare, early symptoms are non-specific, and there is no single diagnostic test.
How many Australians have MND?
An estimated 2,752 people were living with MND in Australia in 2025, equivalent to about 1 in 10,030 people, projected to rise to 4,304 by 2050 (MND Australia, 2025).
Does SESI Care Services support people with motor neurone disease?
Yes, for the in-home daily living component — personal care, household tasks, meals, transport, community access and carer respite. SESI is a registered NDIS provider. For aged care we are not a registered Support at Home provider; we deliver Support at Home services as an associated provider, so the client keeps their agreement and budget with their registered provider and we deliver the support. Clinical and allied health care for MND sits with your treating team and MND clinic; we coordinate with them rather than replacing them.
Who provides the clinical care for someone with MND?
The medical and allied health side is led by the treating neurologist and the specialist MND clinic, usually with respiratory, speech pathology, occupational therapy and dietetics involved as the condition progresses. In-home daily living support, like the support SESI provides, sits alongside that clinical team rather than replacing it.
Where to start
If you are supporting someone with MND and are not sure which system you are in, or you have been assessed and are still waiting, those are two different problems with two different next steps. We are happy to talk either of them through, including if the answer is that someone else is a better fit.
Make a referral: sesi.com.au/referral · Call: 1800 017 374
SESI Care Services · Registered NDIS provider 4050144347 · ABN 47 672 963 405
Sources
- MND Australia and Evohealth, Every Moment Matters: Addressing the human and economic toll of motor neurone disease in Australia, 30 May 2025 — https://mndaustralia.org.au/advocacy/every-moment-matters/
- MND Australia, MND research statistics — https://mndaustralia.org.au/research/mnd-research-statistics/
- National Disability Insurance Scheme, Priority aged care support for Australians with MND, 4 June 2026 — https://www.ndis.gov.au/news/11558-priority-aged-care-support-australians-mnd
- Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026 (F2026L00693), registered 5 June 2026 — https://www.legislation.gov.au/F2026L00693/asmade
- Aged Care Amendment (Motor Neurone Disease Priority for Assistive Technology and Home Modifications) Rules 2026 (F2026L00982), registered 17 July 2026 — https://www.legislation.gov.au/F2026L00982/asmade
- Aged Care Rules 2025 (F2025L01173) — https://www.legislation.gov.au/F2025L01173/latest/text
- MND Australia, MND Australia calls for immediate halt to flawed aged care assessment tool following damning Ombudsman findings, 27 October 2026 — https://mndaustralia.org.au/articles/mnd-australia-calls-for-immediate-halt-to-flawed-aged-care-assessment-tool-following-damning-ombudsman-findings/
- MND Australia, MND Australia calls for urgent action on aged care assessment tool, 17 September 2026 — https://mndaustralia.org.au/articles/mnd-australia-calls-for-urgent-action-on-aged-care-assessment-tool/
- Legislation Act 2003, s 48A (automatic repeal of amending instruments) — https://www.legislation.gov.au/C2004A01224/latest/text
- MND Australia, MND to receive specialist pathway in the NDIS (specialist NDIS pathway from 1 July 2024) — https://mndaustralia.org.au/
- MND Australia, MND Australia welcomes landmark commitment to fast-track support for people living with MND, 3 June 2026 — https://mndaustralia.org.au/articles/mnd-australia-welcomes-landmark-commitment-to-fast-track-support-for-people-living-with-mnd/
- SESI Care Services, internal analysis of disability participant data for the year to 30 June 2026 (participant counts by diagnosis; committed supports and utilisation)
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