I-CAN v6 and Motor Neurone Disease

Preparing for a progressive condition

Disclaimer: This article reflects publicly available information about the I-CAN v6 framework as at October 2026. It does not constitute professional disability support, medical, or legal advice. For personalised guidance, contact the NDIA on 1800 800 110, your Support Coordinator, or a disability advocacy organisation.

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Motor neurone disease (MND) is one of the most challenging conditions to navigate within the NDIS — not because the scheme cannot support people with MND, but because the rapidity of progression creates a structural tension with a planning framework that is built around periodic reviews.

For most conditions, an assessment produces a plan that is adequate for 12 months. For MND, particularly ALS, functioning can change significantly over six months. A plan that accurately reflected your needs at assessment may be significantly inadequate by the time it is reviewed.

This guide covers the specific preparation approach for MND: how to document current function and anticipated trajectory, how to plan for communication deterioration before it arrives, what respiratory management means for support needs, and how to use the NDIS system's review mechanisms proactively.

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Understanding MND Types for I-CAN v6 Purposes

ALS (Amyotrophic Lateral Sclerosis): Both upper and lower motor neurons affected. Typically involves progressive weakness across all muscle groups, eventual respiratory involvement, and in many cases bulbar involvement affecting speech and swallowing. Most common form. Median survival from diagnosis is 2–5 years, though some people live much longer.

PLS (Primary Lateral Sclerosis): Upper motor neurons primarily affected. Slower progression than ALS; spasticity is a prominent feature. Functional impact on mobility and fine motor function over years, often with less respiratory involvement in earlier stages.

PMA (Progressive Muscular Atrophy): Lower motor neurons primarily affected. Weakness and wasting, often beginning in one region. Slower progression than ALS for many people.

PBP (Progressive Bulbar Palsy): Primarily affects bulbar muscles — those controlling speech, swallowing, and tongue movement. Communication and swallowing are the most immediately significant functional domains. Respiratory involvement typically follows.

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The Core Preparation Principle: Current Function AND Anticipated Decline

For most I-CAN v6 preparations, describing current functional capacity is the primary task. For MND, it is equally important to document what you could do six months or twelve months ago and what your treating team anticipates in the next twelve months.

The "where have I come from, where am I going" structure:

1. Six to twelve months ago: What could you do independently that you can no longer do?
2. Now: What can you do, and what requires support?
3. Expected over the next twelve months: What does your neurologist or palliative care team anticipate will change?

This structure does not allow the assessor to build a plan that only works for today. It signals that supports need to be planned with trajectory in mind, not just snapshot.

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Domain-by-Domain: Motor Neurone Disease

Communication

For people with ALS with bulbar involvement, or with PBP, communication is often the first significantly affected domain — and planning ahead matters enormously.

Current communication: Describe your current speech intelligibility in different contexts. Is speech clear with familiar people in quiet settings? Does it deteriorate with fatigue, in noisy environments, over extended conversations, or with unfamiliar listeners?

Trajectory: If there is any bulbar involvement, communicate with the assessor that speech deterioration is expected and that the I-CAN v6 plan needs to account for AAC assessment, trial, procurement, and learning.

Voice banking: If you have not yet voice banked your natural speech, this should be done now, while speech is still functional. It is not a support the NDIA funds but it should be noted as part of your communication planning history.

AAC planning: Even if you do not currently need AAC, if you have bulbar involvement or expect it, your plan should include speech pathology funding for AAC assessment and learning now.

Mobility

Progressive weakness in limbs, balance deterioration, and fatigue combine to create increasing mobility support needs over the course of MND.

What to document:

• Current mobility capacity — what can you walk, transfer, or manage independently?
• Changes over the past 12 months
• Equipment in use (walking aids, wheelchair — manual or power)
• What assistance is currently required for transfers, community access, vehicle use
• Anticipated trajectory based on specialist guidance

Self Care

Personal care needs in MND increase progressively, typically tracking the pattern of limb weakness.

What to document:

• Current assistance requirements for showering, dressing, grooming, eating
• Fine motor limitations affecting self-care tasks
• For PBP/ALS with bulbar involvement: any swallowing difficulties affecting eating and drinking safely
• Time required for morning personal care and the fatigue it creates

Physical Health

This domain carries significant weight for MND.

Respiratory management: For many forms of MND, respiratory muscle weakness is one of the most medically significant features. Document any respiratory supports currently in use (NIV, BiPAP), respiratory function measures (FVC), respiratory specialist appointments, and any anticipated changes.

Medical management: Frequency of neurologist, respiratory specialist, palliative care, and allied health appointments; medications and management; the overall health management burden.

Nutrition and swallowing: For people with bulbar involvement, swallowing assessment by a speech pathologist, any dietary modifications, and the support needed to manage nutrition safely belong in this domain.

Mental & Emotional Health

MND diagnosis and progression involves profound psychological demands. Depression and anxiety are common and understandable responses. Describe any mental health supports currently in place, their adequacy, and what you believe you will need as the condition progresses.

Domestic Life and General Tasks and Demands

As upper limb weakness progresses, domestic tasks become increasingly difficult or impossible without assistance. The combination of fatigue and physical limitation means that meal preparation, household cleaning, and daily management tasks progressively require more support.

Document the current assistance requirements and the trajectory — this is one of the areas where planning ahead in the plan is most important.

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Communication Deterioration: Planning Before It Arrives

For people with MND who have bulbar involvement or who expect bulbar progression, the most important preparation action is to begin communication planning now, while speech is still functional.

Why this matters:

AAC devices suitable for MND take time to assess, prescribe, fund, and learn. If speech deteriorates before an appropriate device is in place and the person is comfortable with it, there is a period of critical communication loss that causes profound harm to quality of life, safety, and relationships.

What the I-CAN v6 plan should include for communication planning:

• Speech pathology for regular monitoring and AAC assessment
• Funding for an appropriate AAC device (this is a Capital Support — Assistive Technology funding)
• Learning and programming support for the AAC device
• Transition planning so that carers and support workers learn the communication system alongside the person with MND

Voice banking: Volunteer-based voice banking services (ModelTalker, Acapela Voice Banking) allow people to record their natural speech before significant deterioration so that voice output from AAC systems sounds like them. This is enormously important to many people. Document that voice banking has been or is being undertaken.

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Respiratory Support: Safety and Management

Respiratory muscle weakness is a feature of most forms of MND as they progress. Respiratory management creates specific, significant support needs.

For the I-CAN v6, document:

• Current respiratory function (FVC)
• Any respiratory support currently in use (NIV, BiPAP, CPAP)
• What management or monitoring respiratory support requires
• Any anticipated respiratory support needs in the next 12 months
• Safety considerations if respiratory support fails or is not managed correctly

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Using Plan Review Rights Proactively

Given MND's progression, waiting for a scheduled 12-month plan review before addressing increased support needs is not appropriate.

Under the NDIS rules in effect since August 2026, you can request an unscheduled plan reassessment when there has been a significant and ongoing change to your functional capacity and support needs.

MND-related deterioration clearly meets this threshold. Participants with MND should review their plans proactively — when support needs have materially increased, not only when a plan date arrives.

Your Support Coordinator plays a critical role here. Engage them early to monitor your functioning and help you prepare reassessment requests when appropriate — remembering that under the August 2026 rules, only you, your plan nominee, or a child representative can make the request.

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Evidence That Carries Weight

Neurologist's report: Current functional status, rate of progression, expected trajectory, respiratory function, and medical management requirements.

Speech pathology assessment: Current communication capacity, trajectory, AAC recommendations, and swallowing assessment if relevant.

Respiratory assessment: FVC measurements and trend, any current respiratory support, and anticipated needs.

Occupational therapy assessment: Current functional capacity across daily activities, equipment needs, and assistance requirements — framed in I-CAN domain terms.

Palliative care team documentation: If you are working with a palliative care team, their perspective on your current function and trajectory is relevant and valuable.

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ICANReady guides you through all 12 I-CAN domains, with prompts designed to capture the progressive nature of MND — including both current capacity and trajectory — in the language the I-CAN v6 needs.

Try ICANReady free →

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Sources: Centre for Disability Studies I-CAN v6 framework, MND Australia (mndaustralia.org.au), NDIA support needs assessment guidance (ndis.gov.au), Disability Advocacy Network Australia (dana.org.au)