Motor Neurone Disease Aged Care: MND Priority Access

Older people with motor neurone disease (MND) often cannot afford to wait in a queue for home support, because their needs can change within weeks. For providers working in motor neurone disease aged care, an amendment to the Aged Care Rules announced on 3 June 2026 means these participants should now reach ongoing Support at Home funding and assistive technology much sooner than before.

The priority only works if the diagnosis is on the record, and it only helps if the provider can move as quickly as the funding does. This article sets out what changed, what to check for each person with MND, and how to plan care for a condition that can progress fast.

Key Takeaways

The Government amended the Aged Care Rules to recognise MND as a specific condition warranting urgent priority for Support at Home, and the change applies retrospectively.
If MND is recorded during the aged care assessment and the person is approved, they receive urgent priority access to ongoing Support at Home funding and immediate priority access to the AT-HM scheme.
A person diagnosed with MND after their assessment who is still waiting for funding can call My Aged Care on 1800 200 422 to arrange a reassessment.
Providers should check each MND participant's assessment record, fast-track assistive technology work and set shorter, event-triggered care plan reviews.
Care for MND participants should plan early for swallowing, communication and end-of-life needs, with workers escalating changes to clinicians rather than assessing them.

What changed for people with MND in June 2026

The Aged Care Rules now treat MND as a discrete, specific condition that warrants urgent priority for Support at Home. Minister Mark Butler's media release of 3 June 2026 said the amendment applies retrospectively and brings aged care into line with the MND prioritisation pathway in the NDIS.

The same release said the Department was directed to carry out a rapid review of the Support at Home prioritisation mechanism, with advice to Government within three months. The Minister also noted that median assessment wait times had fallen from a peak of around 10 months to consistently under one month after the Integrated Assessment Tool was introduced.

What the priority covers

Two benefits apply to a person whose MND is recorded at assessment and who is approved for care. According to My Aged Care's notice on priority care for people with MND, published 13 August 2026, they are:

Ongoing funding - urgent priority access to ongoing Support at Home funding
Assistive technology - immediate priority access to the Assistive Technology and Home Modifications (AT-HM) scheme

The notice says the priority applies to people already approved and to people approved in future. This article is general information about those changes, not legal advice.

Check the diagnosis was recorded at assessment

The priority depends on MND being recorded during the aged care assessment, so the first job for providers is confirming what the record says. If the diagnosis was known but not captured, the person may still be sitting in the general queue.

Identify every participant and prospective client with a known MND diagnosis, including transitioned Home Care Package participants and people waiting for an ongoing classification.
Ask the participant, or their registered supporter, whether MND was raised at assessment, and check the support plan and approval documents you hold.
Where it is unclear, help the person contact the assessment organisation, which My Aged Care names as the first contact when someone is unsure whether MND was recorded.
Record the outcome in the client file, including the date checked and who was contacted.

Prompting reassessment when the diagnosis came later

If a person was diagnosed with MND after their assessment and is still waiting for funding, My Aged Care says they should call 1800 200 422 to arrange a reassessment. Care partners are often the first to hear about a new diagnosis, so build a trigger into intake and review processes: a new MND diagnosis on file prompts a conversation about reassessment within days, not at the next scheduled review.

The participant makes the call or authorises someone to call for them. The provider's role is to explain the option, support the request and record that the conversation happened.

Fast-track assistive technology and home modifications

Immediate AT-HM priority is only useful if the provider's own prescription, quoting and installation processes keep pace. People with MND may need several types of equipment in quick succession, and an item ordered for today's needs can be outdated before it is installed. Tiers, evidence and claiming rules are covered in our guide to AT-HM scheme compliance, so this section focuses on speed.

Flag the file - mark MND participants in your AT-HM tracker so their requests are triaged ahead of routine work.
Prescribe ahead of need - ask the prescribing health professional to consider where the person is likely to be in coming months, within what the scheme allows.
Agree turnaround times - set expectations with suppliers and installers you use often, and escalate delays internally rather than waiting.
Plan for change - document loan, maintenance and return arrangements so equipment can be swapped as needs shift.

Your assistive technology and equipment policy should say how priority cases are identified, who approves expedited orders and how safety checks and maintenance are recorded.

Plan care for rapid decline

Care for a participant with MND should be planned on the assumption that needs will change faster than a standard review cycle allows. We are not aware of a review interval set specifically for MND, so frequency is a provider decision that should be documented and justified for each person.

Care plan and budget reviews

Set a short, fixed review interval for each MND participant and add event triggers. Typical triggers include a fall, new difficulty eating or drinking, changes in speech, new breathing concerns, a hospital admission or a change in what an informal carer can manage. Each trigger should lead to a documented review, not just a note in the progress record.

Budgets need the same attention. The Commission's Quality Bulletin #7-2026 reminded providers that section 155-50 of the Aged Care Rules 2025 requires them to review the budget with the older person when services, costs or contributions change, or when the person asks. For an MND participant, that may happen often.

Swallowing and communication

Frontline workers should recognise and report changes in swallowing and communication, while clinicians do the assessing. Workers may notice coughing during meals, longer mealtimes, weight loss or a voice that is harder to understand. They report what they see through your escalation process, and the GP or relevant clinician decides on assessment, so workers should never change food or drink textures on their own judgement.

Communication planning should start early. Record how the person prefers to communicate, what matters to them and who speaks with them about decisions, while they can still express it easily. Communication aids are often part of the AT-HM request, so link the two plans.

Advance care planning and the End-of-Life Pathway

Advance care planning conversations are best held early with a person living with MND, while they can take part fully. Your advance care planning policy should cover who starts the conversation, how documents are stored and how workers find them in an emergency.

When the person approaches the end of life, the End-of-Life Pathway under Support at Home may apply. My Aged Care lists it at about $25,736.57 for up to 16 weeks. Clinical teams should know the eligibility steps in advance so a referral is not delayed when decline is rapid.

Coordinate with MND Australia and state associations

Providers do not have to build MND expertise alone, because specialist organisations exist to support people living with the disease and the services around them. With the participant's consent, connect them and their family with MND Australia and the MND association in their state, and find out what information, advice and support each offers locally.

Agree who the main contact is and how changes are shared, and record this in the care plan so a new worker can pick it up quickly.

Boards and quality leads can track a few simple measures: the number of MND participants, whether each has a confirmed assessment record, the days from AT-HM request to installation and whether review intervals were met. Governa's policy templates and Norma, the AI assistant, can help map these steps against your existing policies and evidence.

Related Resources

Frequently Asked Questions

Does the MND priority apply to participants approved before June 2026?

Yes. The Minister's release said the change applies retrospectively, and My Aged Care says it covers people already approved as well as people approved in future, provided MND was recorded during their assessment.

What if MND was not recorded at the assessment?

If the person is unsure whether MND was recorded, My Aged Care suggests contacting the assessment organisation. If they were diagnosed after the assessment and are still waiting for funding, they can call My Aged Care on 1800 200 422 to arrange a reassessment.

Does the priority change a participant's classification or budget?

The priority affects how quickly funding and AT-HM access are allocated. Classification is still determined by an aged care assessor, so if the person's needs have grown, a reassessment is the way to seek a higher classification.

Can our care workers assess swallowing difficulties?

No. Workers should recognise and report signs such as coughing during meals or longer mealtimes, and the GP or relevant clinician decides on assessment and any changes to food or drink.

When should we raise the End-of-Life Pathway for an MND participant?

Plan for it early, as part of advance care planning, so the clinical team knows the eligibility steps before they are needed. The timing of any referral is a clinical and personal decision made with the participant and their family.

Record the diagnosis, then move quickly

The new rule gives older people with MND priority, but that priority depends on an accurate assessment record and a provider ready to act. Confirm the record for every MND participant, prompt reassessment where the diagnosis came later and treat AT-HM requests as urgent. Then set short care plan reviews and early advance care planning. This week, pull a list of participants with an MND diagnosis and check each assessment record.

Motor Neurone Disease in Aged Care: Priority Access Under Support at Home