MND Over 65: The Age Bar and the $194,000 It Costs

MND over 65: the age bar, and the $194,000 difference it makes

Here is the arithmetic that governs Australian motor neurone disease care, taken from MND Australia’s 2025 report Every moment matters, which was independently prepared by Evohealth.

Of the 2,752 Australians living with MND, 37 per cent — about 1,018 people — are funded through the NDIS. Their average package is around $302,000 a year. It is not capped and not means-tested.

The other 63 per cent — about 1,734 people — are funded through aged care, now Support at Home. The maximum package is about $108,000: roughly $78,000 for the base package, $15,000 for assistive technology and $15,000 for home modifications. It is means-tested.

The difference between the two is roughly $194,000 a year. The clinical need is identical. The disease is identical. The only variable is how old the person was when they applied.

MND Australia’s own description of this is “simply unjust,” and its first recommendation to government is a nationally consistent funding pathway for people with MND regardless of age, with funding for people diagnosed at 65 and over aligned to the average NDIS package. The report’s blunter line about the aged care route is that the funding is “grossly inadequate and bureaucratically slow.”

And over 50 per cent of people with MND are 65 or over at diagnosis. So the majority of Australians who get this disease land on the wrong side of the line.

This guide explains the rule precisely, sets out what each system actually provides, and covers what can be done — because there is more than nothing, and some of it is time-critical.

The rule, stated exactly

You cannot become an NDIS participant on or after your 65th birthday. What matters is your age when you apply, not your age at diagnosis and not the severity of the disease. There is no discretion in it, nothing arguable on the merits, and no exception for terminal illness.

Three consequences follow, and the second one catches people:

Diagnosed at 63, applied at 64: you are in. Once you are a participant you stay a participant, including past 65. Turning 65 does not remove you from the scheme.

Diagnosed at 64, applied at 65 and two weeks: you are out, permanently. Two weeks of paperwork delay in a disease measured in months is the whole difference between $302,000 and $108,000 a year.

Diagnosed at 70: the NDIS was never available. Support at Home is the only route.

Because the average time from first symptom to diagnosis in Australia is 13 months, somebody whose symptoms began at 63 and a half can easily find themselves applying at 65. The delay was not their fault and it costs them everything. If you are anywhere near 65 and MND is being investigated — not confirmed, investigated — this is the moment to ask whether an access request can be lodged now on the basis of current functional impairment. It costs nothing to apply and the deadline does not move.

For an existing participant, NDIS participation ends in only two situations: permanently entering residential aged care, or taking up a permanent home care arrangement for the first time after 65. Which means an NDIS participant over 65 who is offered a Support at Home package should take advice before accepting it, because accepting can end the better arrangement. The same boundary question arises in other progressive conditions and is covered from a different angle in stroke over 65 and dementia and the aged care boundary.

What each system actually gives you

Two things deserve emphasis because they are where the cap bites hardest in MND specifically.

The $15,000 assistive technology allowance. A powered wheelchair with the tilt, recline and head support an MND user needs can cost more than that on its own. Add a ceiling hoist, a pressure-relieving mattress, a shower commode, a cough assist device and an eye-gaze speech-generating device, and you are several multiples over the allowance. In the NDIS, each of those is assessed on need. Under the cap, they compete with each other.

Overnight support. This is where the gap becomes unbridgeable. MND progresses to needing repositioning, suction, ventilation checks and assistance several times a night. Under the NDIS price limits, a sleepover is a flat rate per night with two hours of active support included, and active overnight support is charged hourly. Funded properly across a year, overnight support alone can exceed the entire annual Support at Home maximum. The practical result is that the over-65 cohort is far more likely to end up in residential aged care, not because their needs are different but because the funding cannot build an alternative.

There is also evidence that the age line affects clinical treatment, not just support. A survey analysis published by MND Australia found that being under 65 was associated with being offered and using non-invasive ventilation — the most effective life-extending treatment in MND — and the authors’ hypothesis was that the NDIS rule excluding over-65s from equipment and overnight support reduces uptake in that age group. NIV has been estimated to extend life by up to 13 months, and in some analyses up to 18. If the age bar is reducing access to it, the line is not only costing people money. See breathing and MND.

Support at Home, honestly

Support at Home replaced Home Care Packages on 1 November 2025. It is worth understanding on its own terms rather than only as the lesser option, because for most Australians with MND it is the system they will be in.

How it works. Assessment through My Aged Care, then classification into one of eight levels, with budgets released quarterly. There is a care management fee. Clinical care is fully funded. From 1 October 2026 personal care is fully government funded as well, which is a meaningful improvement for a condition that is overwhelmingly about personal care.

What it does reasonably well. Nursing, allied health, personal care and domestic assistance, at moderate volumes, for somebody living at home with family support. The clinical care funding is genuinely useful in MND, where nursing input is frequent.

Where it fails in MND. Three places. The cap, in a condition whose costs rise steeply and quickly. The assistive technology and home modification allowances, which are small relative to MND equipment. And speed — the report notes Support at Home waits of up to 15 months under previous pathways, against an average survival of two to three years. A 15-month wait in MND is not a delay in a service; it is a service that arrives after it was needed.

What to do about the speed problem specifically. Say the words “palliative” and “rapidly progressive” to My Aged Care and in every piece of paperwork, and ask explicitly for priority or fast-track assessment. Ask the MND clinic or GP to write that the condition is rapidly progressive with a limited prognosis and that assessment is urgent. ACAT assessments can be expedited. They are not expedited by default.

The things that help regardless of system

This is the practical core of the guide. Several of these are substantial, most people do not know about them, and none of them depend on which funding system you are in.

The state MND association, and its equipment loan library. The single most useful fact in this guide for an over-65 Australian with MND. State MND associations lend equipment — wheelchairs, walkers, scooters, hoists, specialised beds, pressure cushions, recliners, shower chairs, bed rails, communication aids and voice amplifiers, and in some states BiPAP machines — at no direct cost, for as long as it is needed, and without any requirement to have NDIS or aged care funding in place. MND Victoria will lend to Victorians waiting on a package, to people whose package will not stretch, and to people ineligible for either system. It also lends a wheelchair-accessible van for periods from one day to two weeks. Over-65s are explicitly eligible, and once somebody is a Support at Home client with High Tier assistive technology funding, the association can draw on that funding for their equipment instead. Other states run comparable services. This is how you get a hoist in a fortnight rather than a year. Your state association is reachable on 1800 777 175.

The MND advisor. State associations assign advisors who know the local clinics, the local equipment routes and the local funding workarounds. This is free. It is also the closest thing to support coordination available to somebody outside the NDIS.

The multidisciplinary MND clinic. Attending one is associated with longer survival — estimated at seven to twenty-four months — and with actually being offered the interventions that work. It is funded through the health system, not through either disability or aged care funding, so the age bar does not apply. Ask the neurologist for a referral and keep asking.

The health system generally. Diagnosis, neurology, respiratory medicine, ventilation prescription, riluzole, hospital care and palliative care are all health-funded. Medicare and the PBS do not have an age cut-off. A great deal of MND care sits here, and it is the part of the system that treats a 70-year-old and a 55-year-old identically.

Palliative care, early. Specialist palliative care in MND is not end-of-life care only; it is symptom management — breathlessness, pain, secretions, anxiety, sleep — and it is among the most effective services available. Referral is generally through the GP or the MND clinic, it is health-funded, and most people are referred far later than they should be. Asking for it early is not giving up on anything.

Superannuation and insurance. Many policies and super funds release benefits early on a terminal illness certification, and MND will usually meet the definitions. MND Australia’s report notes that definitions and eligibility vary between providers, that this produces inconsistent access, and that many people with a terminal diagnosis do not know these benefits exist at all. Its fifth recommendation is for standardised definitions across the industry. Until that happens, the instruction is: find every policy, request the wording, and get advice. This can release very large sums, and for an over-65 household facing a $194,000 annual funding gap it is sometimes the only thing that closes it. See planning ahead with MND.

Department of Veterans’ Affairs, where there is service history. DVA cover can be more generous than either system and is routinely not asked about.

Carer Gateway on 1800 422 737, for respite, counselling, coaching and emergency support for the carer. Not means-tested in the way packages are, and independent of the person’s own funding.

And the complaint, if it comes to that. The Aged Care Quality and Safety Commission handles aged care complaints, and the Older Persons Advocacy Network on 1800 700 600 provides free advocacy. For a rapidly progressive condition being handled too slowly, an advocate ringing on your behalf changes the tempo more than another phone call from the family does.

A worked example

Two people, same month, same diagnosis, same symptoms: bulbar-onset MND, speech deteriorating, early swallowing difficulty, a walking frame indoors, falling weight.

Margaret is 63. She applies to the NDIS the week she is diagnosed, flags it urgent, and gets a priority eligibility decision in four business days. Her first plan funds an OT assessment, a speech pathology assessment, a communication device, personal care, and support coordination. When her function drops in month five she requests a reassessment and the plan grows. By month twelve she has 24-hour support at home, a powered wheelchair, a ceiling hoist, PEG feeding support and an eye-gaze device. Her annual funding is in the region of the $302,000 average. She dies at home, eighteen months after diagnosis, with her own front door and her own bedroom.

Raymond is 66. He is referred to My Aged Care. Assessment takes time. He is classified and starts receiving personal care and nursing. His assistive technology allowance buys a manual wheelchair, a shower chair and some bed equipment, and is then exhausted; the powered wheelchair does not happen, and the ceiling hoist does not happen. His bathroom cannot be modified within the home modification allowance. Overnight support is unaffordable within his budget, so his wife does the nights, for months, until she cannot. At fourteen months he is admitted to residential aged care, where he dies.

Nothing in that comparison is exaggerated and nothing in it is anybody’s fault inside either system. It is the arithmetic.

What Raymond’s family could have done differently, and this is the practical point of the example: rung the state MND association in week one and borrowed the powered wheelchair and hoist free from the loan library; asked for priority ACAT assessment with a letter stating rapid progression; demanded early palliative care referral for symptom management; found the TPD and terminal illness provisions in his superannuation; and contacted Carer Gateway for respite before his wife reached the end of what she could do. None of that closes a $194,000 gap. All of it would have changed how the fourteen months went.

Asking for faster assessment, in the words that work

Speed is the thing most within your control in the aged care pathway, and the difference between a routine request and a well-framed one is substantial.

Say it on the phone and write it down. When you ring My Aged Care on 1800 200 422, state plainly: this is a rapidly progressive terminal neurological condition, the person’s function is deteriorating month by month, and we are requesting priority assessment. Ask for the reference number and the name of the person you spoke to.

Get the clinical letter to say it too. A GP or MND clinic letter that states the diagnosis, that the condition is rapidly progressive, that the prognosis is limited, and that assessment is urgent, carries far more weight than a family saying the same thing. Ask for those exact elements rather than for “a letter.”

Ask for the assessment to be done in hospital if the person is an inpatient. Assessments arranged before discharge happen faster than assessments arranged from home, and Transition Care can bridge the gap after a hospital stay. Ask while the person is still on the ward.

Ask what the highest classification available is and what evidence supports it. Being assessed into a low classification and then seeking an upgrade costs months. Getting the assessment right the first time is worth pushing for.

Ask about the assistive technology and home modification tiers specifically, since these sit separately within the package and are where MND equipment competes.

Escalate rather than wait. If an assessment has not happened within a few weeks, ring back, quote the reference number, and ask for the matter to be escalated. If that fails, the Older Persons Advocacy Network on 1800 700 600 provides free advocacy and will make the call on your behalf — which, in practice, changes the tempo more than another call from the family does.

And run the MND association in parallel from day one. Equipment borrowed free this fortnight does not depend on any of this going well.