I-CAN v6 and Rare Diseases

When your condition doesn't fit the standard picture — and how to prepare anyway

Disclaimer: This article reflects publicly available information about the I-CAN v6 framework as at August 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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Approximately one in 17 Australians will be affected by a rare disease at some point in their lives. For those with permanent rare conditions — genetic disorders, rare neurological conditions, rare immunological diseases, ultra-rare metabolic conditions — the NDIS is often the only source of significant disability-specific support.

The I-CAN v6 assessment is designed to measure functional support needs, not diagnoses. In principle, this should work well for rare disease participants: the 12 domains capture daily functioning regardless of what condition causes the need. In practice, several specific challenges arise.

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The Core Challenges for Rare Disease Participants

1. Assessor Unfamiliarity

An I-CAN v6 assessor is accredited to conduct the assessment tool — they are not required to have specialist knowledge of every disability. For rare diseases, this means the assessor may:

• Not know your condition at all
• Have heard the name but not understand the functional presentation
• Apply assumptions from more familiar conditions that do not apply to yours

Why this matters: An assessor who does not understand your condition may not ask the right questions, may not understand why certain functional limitations exist, and may underestimate support needs that make more sense in context.

How to address it: Do not rely on the assessor's prior knowledge. Your preparation document should include a brief, clear plain-language description of your condition and why it affects each domain it does. Think of it as briefing someone who is intelligent but unfamiliar with your specific situation.

2. Limited Evidence Base

For rare diseases, specialist reports are often harder to access — there may be only one or two specialists in Australia who treat your condition, appointments may be infrequent, and general practitioners may not fully understand the condition's functional implications.

How to address it: When specialist reports are limited or generic, your own documentation becomes the primary evidence. A daily diary, a carer statement, and an occupational therapist's functional assessment (an OT can assess functional capacity regardless of the underlying diagnosis) can together provide a strong evidence base.

3. Multi-System Complexity

Many rare diseases affect multiple body systems simultaneously, creating a complex presentation that spans many I-CAN domains at once. A rare metabolic condition might simultaneously affect cognitive capacity, physical strength, gastrointestinal function, immune response, and fatigue tolerance. Standard questions may not capture this complexity.

How to address it: Prepare domain by domain, even if the cause of the need in each domain is the same underlying condition. The assessor needs to understand not just that you have a complex condition, but specifically how it affects each area of your life.

4. Progressive Trajectories

Many rare diseases are progressive — conditions that worsen over time rather than remaining stable. For the I-CAN v6, this means current support needs may not reflect the full picture if the condition is declining.

How to address it: Document both current functional capacity and the direction of travel. Describe what has changed in the past two or three years and, if there is specialist guidance about expected trajectory, reference it explicitly.

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Focusing on Function, Not Diagnosis

The single most important principle for rare disease I-CAN v6 preparation is this: describe what your condition does to your daily life, not what your condition is.

An assessor who does not know your condition can still assess your support needs accurately if you describe:

• What you cannot do that a healthy person your age could do
• What you can do, but only at significant cost (time, pain, effort, fatigue, risk)
• What you need assistance with and how often
• What the consequences are when support is not available

The diagnosis is context. The functional description is the assessment.

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Domain-by-Domain: Key Considerations for Rare Disease

Mobility

Describe your actual daily mobility — not best-case but typical. For rare diseases with fatigue components (many), describe the "energy budget" structure: how far you can move in the morning vs afternoon, what activity triggers limitation, and recovery time.

Self Care

For complex medical conditions, morning self-care often includes medication management, medical monitoring, symptom management routines, or clinical care tasks. Document the full time and support requirements.

Physical Health

This domain is often the most directly relevant for rare disease participants. Document all conditions, all medications, all management requirements, all specialist appointments. Describe the daily burden of health management — even for people who appear "managed," the management work itself is significant.

General Tasks and Demands

Cognitive impacts, medication complexity, safety concerns — including vulnerability to deterioration if routines are not followed precisely — belong here. For conditions with significant cognitive components, document these specifically.

Mental & Emotional Health

Living with a rare disease that is often misunderstood, that may lack effective treatment, and that may be progressive carries a significant psychological burden. Anxiety, depression, and adjustment difficulties are common and legitimate support needs.

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Building Your Evidence Base When Reports Are Limited

When standard evidence is hard to access, build from what you have:

Occupational therapy functional assessment. An OT can assess functional capacity regardless of the underlying diagnosis. Ask your OT for a functional assessment framed in I-CAN domain terms. This is often the single most useful document when specialist evidence is limited.

Your own daily diary. Four or more weeks of daily entries documenting what you could and could not manage, fatigue levels, and what support was needed provides specific, dated functional evidence that no specialist report replaces.

Carer or family member statement. A detailed observer statement from someone who sees your daily functioning is powerful evidence — particularly when clinical contact is infrequent.

What your GP can provide. Even if your GP does not fully understand your rare disease, they can write a letter describing your functional limitations and health management requirements from their clinical contact. Ask them specifically for functional language, not just diagnosis.

Rare disease organisation support. Your disease-specific organisation may be able to connect you with specialists who can provide reports, or may have prepared materials that help clinicians write appropriate assessments. Rare Voices Australia (rarevoices.org.au) can provide connections and general guidance.

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What to Say About Your Condition to an Unfamiliar Assessor

At the start of your assessment, offer a brief orientation:

"I have [condition name]. Most people haven't heard of it. In plain terms, it affects me by [brief description — e.g., causing significant fatigue, affecting my muscles, affecting my immune system]. The most important things to understand are [2-3 key functional impacts]. I've written this up in my preparation document — I hope that helps give you context."

This is not lobbying or coaching — it is providing context that helps the assessor do their job accurately.

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How to Describe Progressive Conditions

If your condition is worsening over time, document the trajectory alongside your current status:

• What was your functioning like 2–3 years ago? What could you do then that you cannot do now?
• How has the rate of change been — slow, steady, accelerating?
• Is there specialist guidance about expected future trajectory?
• Are there specific milestones ahead (e.g., "my specialist expects I will need a power wheelchair within 2 years") that should influence plan design?

A plan designed only for today may be inadequate by next year if your condition is progressive. The assessment should capture the trajectory, not just the snapshot.

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ICANReady guides you through all 12 I-CAN domains with plain-language prompts that help you describe the functional impact of your condition — regardless of how rare or unfamiliar it is. The tool is built around functional description, not diagnosis.

Try ICANReady free →

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