I-CAN v6 and Muscular Dystrophy

A guide for participants — navigating a progressive condition

Disclaimer: This article reflects publicly available information about the I-CAN v6 framework as at September 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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Muscular dystrophy encompasses a group of neuromuscular conditions characterised by progressive muscle weakness. While the specific pattern and rate of progression varies significantly between types — from the rapid childhood-onset trajectory of DMD to the slower adult presentations of BMD or FSHD — all forms share a core challenge for I-CAN v6 preparation: your needs are not static.

For a person with muscular dystrophy, the assessment should capture not only current functional capacity but also the trajectory of decline that will shape what support is required over the life of the plan.

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Understanding Your Type: How MD Presentations Differ

Duchenne MD (DMD): The most severe form, affecting primarily boys. DMD involves progressive loss of ambulation typically in early adolescence, followed by increasing requirements for respiratory support, and later cardiac management. For current participants in their late teens or twenties, the rate of change in support needs may be rapid.

Becker MD (BMD): Slower progression than DMD. Many people with BMD remain ambulatory into adulthood and have longer windows of relative functional stability. The I-CAN v6 should still document trajectory, including the slower decline that is nonetheless occurring.

Facioscapulohumeral MD (FSHD): Primarily affects the face, shoulder, and upper arm muscles. Many people with FSHD maintain lower limb mobility but have significant upper limb weakness affecting self-care, domestic life, and fine motor tasks. The pattern is asymmetric and often variable between individuals.

Myotonic MD: Involves muscle weakness alongside myotonia (delayed muscle relaxation), cognitive features, cardiac involvement, and sleep dysfunction. The cognitive and cardiac aspects are important to document alongside physical weakness.

Limb-Girdle MD: Progressive weakness of the hip and shoulder girdle muscles. Presentation varies by subtype; many people have ambulatory difficulties, falls, and increasing need for mobility aids.

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The Core Principle: Current Function AND Trajectory

For most conditions, the I-CAN v6 focuses primarily on current functioning. For muscular dystrophy and other progressive conditions, trajectory matters equally.

Document what you could do 12 months ago that you can no longer do. This establishes that needs are increasing, not stable.

Document what your specialist anticipates over the next 12–24 months. If your neurologist or respiratory specialist has discussed expected progression, note this in your preparation document. Plan designers should understand where you are heading, not only where you are.

Describe the rate of change. Is decline gradual and steady? Have there been step-changes following specific health events? Is the current period of relative stability or active decline?

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Domain-by-Domain: Muscular Dystrophy

Mobility

Mobility is typically the most visibly affected domain in MD and usually warrants the most thorough documentation.

What to document:

• Current mobility aid (manual wheelchair, power wheelchair, walking aids, or ambulation with difficulty)
• Transfer ability — can you transfer independently? From what surfaces?
• Distance limitations — how far before fatigue prevents further movement?
• Terrain limitations — what surfaces can you navigate (flat, inclined, uneven, outdoor)?
• Whether mobility capacity has changed in the past 12 months
• Equipment needs that are not yet met — if your current equipment is no longer adequate, note this and the functional gap it creates

For people with DMD who have recently transitioned from ambulatory to wheelchair use, or who are approaching that transition, document this trajectory explicitly.

Self Care

Physical weakness in MD affects all aspects of personal hygiene, dressing, and eating.

What to document:

• Upper limb strength and how it affects grooming, hair care, washing
• Fine motor capacity and its effect on dressing, fastening, buttons, zippers
• Transfer requirements for showering, bathing, and toileting
• Eating and swallowing — for later-stage DMD and some forms of Myotonic MD, dysphagia may be present
• The fatigue cost of morning self-care — how much energy does it consume, and what is left for the rest of the day?

Domestic Life

Upper limb weakness, reduced reach, and fatigue significantly affect household management.

What to document:

• Cooking: what can you do independently with adaptive equipment, and what requires assistance?
• Lifting and carrying: virtually all household tasks involving weight become limited with progressive upper limb weakness
• Cleaning: vacuuming, mopping, and floor-level tasks are typically among the earliest domestic tasks to require assistance
• Fatigue trade-offs: if cooking a meal consumes most of the day's energy, what does not get done?

Physical Health

For MD, this domain carries significant weight and complexity.

Respiratory management: Describe all respiratory support currently used (NIV, BiPAP, CPAP, assisted cough, ventilator), when it is required, and what monitoring or assistance it needs. If respiratory function has declined — measurable through FVC (forced vital capacity) — document current FVC and the trend.

Cardiac management: Cardiomyopathy is common in DMD and some other forms. Document cardiac monitoring, medication, and any functional limitations arising from cardiac involvement.

Medication: Many MD-related medications have functional side effects. Document the management burden of complex medication regimens.

Specialist appointments: The frequency and complexity of medical oversight for MD is significant — document how many specialist appointments are required, what support is needed to attend them, and the preparation and recovery involved.

Communication

For most forms of MD, verbal communication is not directly affected. However, for later-stage DMD and Myotonic MD:

• Speech in advanced DMD: As respiratory function declines, speech volume and endurance may be affected
• Myotonic MD cognitive features: Processing speed, memory, and executive function difficulties are present in some forms of Myotonic MD
• AAC planning: For people with DMD approaching respiratory deterioration, planning for AAC before it becomes urgently needed is relevant to document

Mental & Emotional Health

Living with a progressive condition — particularly one diagnosed in childhood with a known trajectory — carries a significant psychological burden. Rates of depression and anxiety are elevated in people with MD and their families.

Document any mental health conditions and their functional impact. For young people with DMD who have experienced significant disability progression, this section of the preparation document deserves particular attention.

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Equipment and Assistive Technology: Document Both What It Enables and What It Doesn't

People with MD often rely on a wide range of assistive technology. For the I-CAN v6:

Document what each piece of equipment enables: "My power wheelchair enables community access and independent indoor mobility."

Document what still requires human assistance even with the equipment: "Transfers to and from the power wheelchair require physical assistance. The power wheelchair cannot access stairs, uneven terrain, or narrow spaces, meaning approximately 30% of community environments are inaccessible regardless of equipment."

Document equipment gaps: If your current equipment is inadequate for your current level of function, document the gap. This is relevant to plan design.

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Fatigue: A Cross-Domain Issue

Fatigue in MD is not simply tiredness. It is the result of the extraordinary energy expenditure of moving with weakened muscles, often compounded by respiratory inefficiency and the neurological aspects of the condition.

How to document fatigue effectively:

• What activities trigger significant fatigue?
• What is the day's functional arc — when do you have most capacity, when does it diminish?
• How does a fatiguing activity (showering, an outing) affect capacity for the rest of the day or the following day?
• What cannot be done at all on high-fatigue days?

This "energy budget" concept — that each demanding activity consumes part of a limited daily reserve — is one of the most important functional concepts for MD participants to convey in their preparation document.

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Evidence That Carries Weight

Neuromuscular specialist/neurologist report: Current functional status, rate of progression, expected trajectory, respiratory function, and management requirements.

Physiotherapy assessment: Strength assessments, mobility capacity, transfer ability, and recommendations for equipment or support.

Respiratory assessment: FVC, overnight oximetry, and recommendations for respiratory support.

Occupational therapy home and community assessment: Functional capacity across daily activities, equipment needs, and assistance requirements.

Daily care diary: Specific documentation of what support is provided and when, compiled over several weeks.

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

Try ICANReady free →

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