Planning Ahead With MND: Documents, Money and Decisions

Planning ahead with MND: the documents, the money and the conversations

MND Australia’s 2025 report makes a recommendation that sounds administrative and is not. It asks government to standardise the definitions of terminal illness used by superannuation funds and insurers, because the definitions currently vary between providers, that variation produces inconsistent access — and because, in the report’s words, many people diagnosed with a terminal illness are unaware these benefits exist.

Sit with that. A disease that costs Australian households an average of around $133,626 in lost productivity, in which 63 per cent of people are funded through a system capped at about $108,000 a year while the NDIS average for MND is $302,000, and a substantial number of people do not know they are entitled to release their own superannuation early.

This guide is about everything that should be done while there is time to do it: the legal documents, the money, the treatment decisions, and the conversations. It is organised roughly by urgency, because in MND the order genuinely matters.

A blunt framing first. Planning ahead in MND is not pessimism and it is not giving up. It is the opposite — it is the thing that keeps decisions in the hands of the person they belong to. The alternative is not avoiding the decisions; it is having them made later, by other people, under pressure, in a hospital, at night.

First: the documents, and why the window is narrower than you think

Two documents matter more than everything else, and both must be signed while the person has decision-making capacity.

An enduring power of attorney, for financial and property decisions. Names someone to act on the person’s behalf. The exact name, form and witnessing requirements differ by state and territory, so get it done locally and properly.

An enduring guardianship, or its state equivalent, for health, medical and personal decisions — where the person lives, what treatment they accept or refuse, who they see. Again, the name varies: enduring guardian, medical treatment decision maker, enduring power of attorney for personal matters, depending on the jurisdiction.

Why this is first on the list, not somewhere in the middle. The assumption behind the usual advice — plenty of time, because the mind stays sharp — is wrong for a substantial minority of people with MND. Over half experience some change in thinking or behaviour, and up to 15 per cent develop frontotemporal dementia, with changes sometimes appearing years before any weakness. See cognitive and behaviour change in MND.

There is also a mechanical problem that catches people out. These documents require a signature, and MND takes hand function. Even with capacity perfectly intact, somebody who cannot hold a pen faces a procedural obstacle. There are lawful workarounds in every state — a direction to a third party to sign, specific witnessing arrangements — but they are more complicated, more expensive and more challengeable than signing while you still can.

So: see a solicitor in the first weeks. Not after the equipment, not after the NDIS plan. Use a solicitor rather than a template, especially where there are children from a previous relationship, a business, a complex estate or any family disagreement. Community legal centres can help where cost is a barrier, and some state MND associations can point you to solicitors who know the condition.

While you are there: review or make a will, and discuss advance care planning, below.

The money nobody tells you about

This section is worth real money to a lot of households and it is the most consistently missed part of MND planning.

Superannuation: terminal medical condition release. Australian superannuation can be released early, tax-free, where two medical practitioners — one a specialist — certify that the person suffers from an illness likely to result in death within a defined period. MND will generally meet the definitions. This can release a person’s entire superannuation balance.

Insurance held inside superannuation. Most Australians have insurance they do not know about, inside super funds they may have forgotten. Three types matter:

Terminal illness benefit, paid on a terminal diagnosis.

Total and permanent disablement (TPD), paid where the person is unlikely ever to work again. Definitions differ substantially — some policies test whether you can do your own occupation, others whether you can do any occupation you are reasonably suited to by training and experience. Which test applies can decide the claim.

Income protection, which pays a proportion of income during incapacity. Critically, many income protection policies require the claim to arise while employed. Resigning before lodging can extinguish a valid claim.

Standalone policies held outside super: life, trauma, TPD, income protection, and sometimes mortgage protection attached to a home loan.

The practical sequence, in order:

1. Find every policy and every super fund, including old ones the person stopped contributing to. Check myGov for lost and multiple super accounts. Insurance frequently sits in a fund nobody has thought about in a decade.
2. Request the full policy wording and product disclosure statement for each, in writing.
3. Read the definitions before lodging anything. This is where claims are won and lost.
4. Lodge income protection before resigning, if resignation is being considered at all.
5. Have the medical evidence drafted against the policy wording itself. A letter saying “diagnosed with motor neurone disease” is not the same document as one addressing the specific wording the policy uses. Give the specialist the policy wording and ask them to address it directly.
6. Keep records of everything — dates, names, every letter.
7. Get help, and get it free where you can. A financial counsellor costs nothing. Many community legal centres handle insurance and superannuation disputes. Specialist superannuation and insurance lawyers generally work on a no-win-no-fee basis for TPD claims. If a claim is declined, the Australian Financial Complaints Authority is free to use, and declined claims are overturned often enough to make complaining worthwhile.

And in parallel, Centrelink. Disability Support Pension for the person; Carer Payment and Carer Allowance for the carer. These are separate from insurance and from the NDIS, and a household may be eligible for all of them at once. MND is among the conditions where a DSP claim can be expedited on terminal illness grounds — ask Services Australia about the Manifest Medical Rules.

Department of Veterans’ Affairs, if there is service history. DVA entitlements can exceed what either the NDIS or aged care provides and are routinely not asked about.

And the thing people get wrong about the NDIS: it is not income. It buys disability supports and contributes nothing towards rent, food or a mortgage. Somebody can hold a $300,000 plan and have no money for the mortgage. The income side of the problem is super, insurance and Centrelink, and it is a separate exercise from the support side.

Work

Not everybody with MND stops working immediately, and the decision deserves more care than it usually gets.

Do not resign before taking advice. Resignation can cost an income protection claim, accrued entitlements handled properly, and sometimes a TPD benefit. Get the insurance position clear first.

Consider what adjustments would help. Under the Disability Discrimination Act, employers must make reasonable adjustments. Reduced hours, working from home, a different role, voice recognition software, a different workstation, accessible parking. JobAccess and the Employment Assistance Fund can fund workplace modifications and assistive technology.

Consider leave before resignation. Long service leave, annual leave, personal leave, and unpaid leave can bridge a period while claims are assessed.

Think about what work is for. Some people want to keep working as long as possible because it is identity, structure and company. Others are relieved to stop. Both are reasonable, and the only wrong version is the decision being made by default because nobody had the conversation.

Get advice from a union if there is one, or a community legal centre, or an employment lawyer. These are the cheapest hours anybody spends in this process.

Driving

MND affects driving through weakness, fatigue, reduced reaction time and, where there is cognitive change, judgment.

You must notify the licensing authority in your state or territory of a condition likely to affect driving. This is a legal obligation, not a suggestion. Failing to disclose can void insurance cover entirely — so an undisclosed diagnosis means that an at-fault accident becomes a personal financial catastrophe on top of everything else.

Notification does not automatically mean losing the licence. Fitness to drive is assessed against the Austroads Assessing Fitness to Drive standards as administered by your state authority, and a conditional licence with vehicle modifications or restrictions is sometimes possible. An occupational therapy driving assessment is the usual route.

What it does mean is that the decision is made properly, with assessment, rather than left to a family argument or an accident.

Giving up driving is one of the losses people with MND report as hardest, and it is worth planning for rather than simply absorbing: taxi subsidy schemes, transport funded in an NDIS plan, a disability parking permit for when somebody else is driving, and an honest conversation about who does the school run now.

Advance care planning and the treatment decisions

This is the part that matters most clinically and that people most want to postpone.

An advance care directive records what treatment the person wants and does not want, and appoints the decision-maker. The legal form varies by state. Completed properly, it is the document that governs what happens when the person can no longer say.

The decisions worth recording explicitly in MND:

Non-invasive ventilation. Whether to start it, and whether and when to stop. People do choose to withdraw it; that is lawful, ethically well established, and should be done with specialist palliative care involvement so that breathlessness and anxiety are managed. Saying in advance that you may want this makes it very much easier to arrange.

Tracheostomy ventilation. Invasive ventilation through a surgical airway. Rarely chosen in Australia. It can extend life substantially and it changes everything: continuous skilled care, usually loss of speech, and a trajectory in which the disease keeps progressing while ventilation continues. The time to decide is before a respiratory crisis, because a decision made during one — typically intubation in an emergency department — may not be reversible, since extubating somebody with MND afterwards is sometimes not possible.

Gastrostomy. Whether to have a feeding tube, and the timing. See eating, swallowing and PEG feeding.

Hospital admission. Whether the person wants to be admitted for treatable complications, or treated at home where possible. Without an answer, the default is admission.

Antibiotics for chest infections, late in the disease.

Resuscitation.

The place they want to be looked after, and the place they want to die. Home, supported accommodation, hospice, hospital. Being specific matters, because without a stated preference the default is whatever has a bed in a crisis.

Who they want making decisions, and just as importantly, who they do not.

Then distribute it. A directive in a drawer achieves nothing. Copies to the appointed decision-maker, the GP, the MND clinic, the local hospital, the palliative care team, the support provider, and — this one is often forgotten — a copy where the ambulance service will find it, usually on the fridge. Tell the family what it says, so nobody is surprised and nobody argues at the wrong moment.

Palliative care, early

The most under-used service in MND, and the one with the biggest gap between what people assume and what it does.

Specialist palliative care is symptom management: breathlessness, pain, secretions, saliva, anxiety, insomnia, constipation, emotional lability. Those are precisely the symptoms MND produces, and palliative teams are better at them than anybody else. Referral is through the GP or the MND clinic, it is health-funded with no age limit, and it does not mean stopping active treatment or abandoning anything.

Early referral is associated with better symptom control and with fewer crisis admissions. Most people are referred far too late or not at all, frequently because the word itself frightens families into declining. If that is the obstacle, ask for referral to a “symptom management service,” which is what it is.

Voluntary assisted dying

Some people with MND want information about this, and they are entitled to accurate information rather than evasion.

Voluntary assisted dying is lawful in all six Australian states, under separate state legislation with differing detail. The Australian Capital Territory has also legislated. The schemes are tightly conditioned: the person must have decision-making capacity, must be acting voluntarily and without coercion, must make the request themselves, and must meet residency and eligibility criteria including a prognosis requirement.

One detail matters specifically for MND. Most schemes apply a prognosis threshold of six months, but for neurodegenerative conditions the threshold is twelve months in several jurisdictions, in recognition of how these diseases progress. In NSW, for example, neurodegenerative conditions carry a 12-month prognosis threshold against six months for other diagnoses, and in the first reporting period neurodegenerative conditions accounted for 98 of 992 patients at first assessment — just under 10 per cent.

Capacity is required throughout, including at the point of administration in most schemes. For a condition in which up to 15 per cent of people develop frontotemporal dementia, and in which speech and hand function are lost, this creates real timing constraints: a person who wants to explore this pathway needs to start the conversation earlier than they might expect, and the loss of ability to communicate can itself close the door.

Health practitioners in some states are prohibited from raising the subject first, which means the person generally has to ask. If you want information, say so explicitly to your GP or specialist. Each state health department operates a voluntary assisted dying care navigator service, and those services exist precisely to answer these questions.

This guide takes no position on the choice. It is a decision for the person, and nobody else, and it sits alongside — not instead of — palliative care, which most people access and which is concerned with living as well as possible for as long as there is.

A fortnight-one checklist

1. Solicitor: enduring power of attorney, enduring guardianship, will.
2. Find every super fund and insurance policy; request the wording. Do not resign from anything first.
3. Centrelink: DSP, Carer Payment, Carer Allowance. Ask about expedited assessment.
4. Notify the licensing authority, and ask about an OT driving assessment.
5. Advance care directive started, with the ventilation, tracheostomy, gastrostomy, hospital and resuscitation questions answered.
6. Ask for palliative care referral for symptom management.
7. Voice banking, which cannot be done later. See communication and voice banking.
8. State MND association on 1800 777 175, for an advisor and the equipment loan library.
9. NDIS access request if under 65, flagged urgent. See MND and the NDIS.
10. Carer Gateway on 1800 422 737 for the carer, before they need it.