I-CAN v6 and Down Syndrome

A guide for participants, families, and supporters

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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Down syndrome is one of the most common chromosomal conditions in Australia, and one of the most well-represented in the NDIS. People with Down syndrome typically have complex, lifelong support needs spanning cognition, communication, daily living, health, and social participation — needs that often increase with age, and that an I-CAN v6 assessment needs to capture fully.

This guide is for people with Down syndrome, their families, carers, and supporters — covering how the assessment works, which domains carry the most weight, how to describe support needs when verbal self-reporting is limited, and what evidence matters most.

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What Makes Down Syndrome Distinctive in the I-CAN v6 Context

People with Down syndrome present a distinctive preparation challenge because their support needs span almost every I-CAN domain simultaneously — and because the most important evidence often comes from the people who know them best, not from the participant's own verbal account in an assessment room.

Several features of Down syndrome are particularly important to understand for I-CAN v6 preparation:

Cognitive disability is present in everyone with Down syndrome, but varies significantly. The degree of intellectual disability ranges from mild to severe. How the assessment plays out depends heavily on the individual's cognitive capacity — particularly their ability to self-report experiences, understand questions, and engage with the structured assessment process.

Communication differences are nearly universal. Most people with Down syndrome have speech and language differences that affect their ability to communicate in an unfamiliar, structured assessment setting. This does not mean the participant cannot participate — but it does mean the assessor needs supporting information and the assessment needs to be appropriately adapted.

Support needs are often long-term and stable. Unlike some acquired disabilities, the support needs associated with Down syndrome are permanent and typically well-established by adulthood. Assessors should understand that assessments for most adults with Down syndrome should confirm and accurately capture long-standing needs, rather than identify emerging or changing needs.

Age-related changes can be significant. Older adults with Down syndrome face a substantially elevated risk of early-onset dementia (see below). For participants over 40 or 45, any declining functional capacity deserves explicit documentation.

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The Key Domains for Down Syndrome

While all 12 domains are assessed, the following domains are most commonly significant for people with Down syndrome:

Self Care

Many people with Down syndrome require support with daily personal hygiene, dressing, eating, and toileting — the level depending significantly on cognitive capacity and fine motor function.

What to document: The full picture of personal care support — bathing, dressing, grooming, toileting, eating. How much assistance is needed? How long does it take? What prompting is required? What happens if support is not available?

Example: "Requires full step-by-step verbal prompting for the entire morning personal care routine. Cannot sequence tasks independently. Without prompting, will not initiate showering. Dressing takes 30 minutes with verbal instruction for each step in sequence."

Domestic Life

The ability to manage a household — shopping, cooking, cleaning, maintenance — is typically significantly affected by the cognitive demands of planning, sequencing, and executing multi-step tasks.

What to document: Whether the person can shop, cook, clean, and manage their home. What level of assistance is required for each task? What specific safety concerns exist (kitchen safety, managing appliances)?

Communication

Communication differences in Down syndrome span receiving communication, expressing oneself, conveying emotions, and managing complex or formal conversations.

What to document: Intelligibility in familiar versus unfamiliar settings; use of Makaton, AAC, or other communication supports; the gap between communication in familiar one-on-one settings and communication in formal or high-demand environments; speech fatigue; literacy level; ability to communicate in emergencies.

Important: Many people with Down syndrome communicate well with familiar people but struggle significantly with unfamiliar people, clinical settings, or formal questions. Document this gap explicitly — the assessment may see the participant at their most familiar-setting best.

Learning & Applying Knowledge

What to document: Current educational or structured learning participation; ability to learn new information; retention; what adjustments and supports are required in learning settings; any history of supported learning programmes.

General Tasks and Demands

Daily routine management, medication, and safety.

What to document: Ability to follow a daily routine independently; medication management (complexity, monitoring, what happens without support); safety awareness; vulnerability to exploitation (people with cognitive disability are at significantly elevated risk); ability to respond to changes or emergencies.

Interpersonal Interactions & Relationships

What to document: Social skill repertoire; ability to seek help and cooperate with support workers; vulnerability in social settings; any history of exploitation or unsafe relationships; the effort required to manage social interactions.

Community, Social & Civic Life

What to document: What community activities the person currently participates in; what participation requires in terms of direct support; ability to manage finances; ability to advocate for themselves or need for others to advocate on their behalf.

Physical Health

Down syndrome is associated with significantly higher rates of cardiac conditions, thyroid disease, respiratory conditions, hearing loss, vision problems, obstructive sleep apnoea, and gastrointestinal conditions.

What to document: All current health conditions and their management requirements; medications; specialist appointments; how physical health management affects daily life and what support it requires.

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Describing Support Needs When Verbal Self-Report Is Limited

For participants with significant cognitive disability who cannot fully self-report, the preparation process works differently — and the supporter's role becomes central.

Practical approaches:

Keep a daily care diary. For two to four weeks before the assessment, record what support was provided each day, for each domain — what assistance was given, how long it took, what the person could not do without support. This creates an evidence base from real daily life.

Use structured observation. For each I-CAN domain, ask yourself: "What do I see every day?" rather than "What does [participant] tell me about their needs?" Your direct observations are often more accurate than recalled summaries.

Be specific about prompting. One of the most important things to document for people with cognitive disability is the level of prompting required — verbal cues, physical guidance, step-by-step instruction. Distinguish between: does this independently, needs verbal prompting, needs physical guidance, cannot do even with prompting.

Document what happens without support. For each task, describe specifically what happens if you are not there to prompt or assist. "Would not shower," "would not eat a full meal," "would leave the house unsafely" — these consequences are powerful evidence.

Describe the person's best setting vs an unfamiliar setting. The assessment will likely occur in an unfamiliar environment with an unfamiliar person. For most people with Down syndrome, this is not where they communicate or function at their best. Help the assessor understand the gap.

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Age-Related Considerations: Down Syndrome and Early-Onset Dementia

People with Down syndrome have a significantly elevated risk of developing Alzheimer's-type dementia, typically at much younger ages than the general population. Research suggests:

• The majority of people with Down syndrome will develop dementia if they live into their 60s
• Many are affected in their 50s
• Some show early changes in their 40s

For participants who are 40 years of age and older, the possibility of cognitive decline related to early-onset dementia is relevant to I-CAN v6 preparation.

What to document for older participants with Down syndrome:

• Any changes in memory, orientation, or daily functioning compared to two or five years ago
• Increased confusion or disorientation, particularly in new environments
• Changes in communication capacity — if verbal communication was previously better than it is now
• Increased anxiety, sleep disturbance, or behavioural changes that may reflect early cognitive changes
• Increased support needs across Self Care, Domestic Life, and General Tasks and Demands that represent a decline from previous capacity

Even if dementia has not been formally diagnosed, documented functional decline in an older person with Down syndrome is important evidence for plan design — because the plan should reflect not just current needs but a trajectory that is likely to require increasing support.

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Common Gaps in Down Syndrome Assessments — and How to Avoid Them

Understating financial vulnerability

People with Down syndrome are at elevated risk of financial exploitation and being taken advantage of by others. This vulnerability is a legitimate support need that is frequently absent from preparation documents. Document explicitly if the person requires support to manage money safely and to avoid being exploited or manipulated in financial situations.

Presenting only the best-case communication picture

Many people with Down syndrome present better in familiar, supported settings than in formal assessment environments. If you accompany the participant to the assessment, gently advocate for an accurate picture: "At home, [participant] needs more prompting than you may see today."

Omitting health comorbidities

The physical health burden of Down syndrome is significant and often under-documented in NDIS assessments. Ensure all health conditions — cardiac, thyroid, respiratory, gastrointestinal, and others — are documented with their functional management requirements.

Not documenting the "without support" picture

Preparation documents for people with high support needs often describe what is provided. Equally important is what happens without it. For each significant support, describe specifically what would occur if that support were not available.

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Evidence That Helps

Psychological assessment — current psychometric assessment documenting cognitive and adaptive functioning, using tools appropriate for people with Down syndrome. Should be conducted by a psychologist familiar with Down syndrome presentations.

OT functional assessment — describing daily life functional capacity across I-CAN domain areas in practical terms.

Speech pathology report — describing communication capacity across settings, use of alternative communication strategies, and functional communication limitations.

Carer statement — a detailed, domain-by-domain written statement from the primary family carer or support worker describing daily support needs from direct observation. For many participants with Down syndrome, this is the single most important document.

Daily care diaries — specific, dated records of support provided, with frequency and duration.

Medical summary — comprehensive summary of health conditions and their management requirements.

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ICANReady can be used by family members and supporters to build a structured preparation document for a person with Down syndrome — working through all 12 I-CAN domains with prompts that help capture daily support needs in the specific, functional language that the assessment requires.

Try ICANReady free →

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Sources: Centre for Disability Studies I-CAN v6 framework, Down Syndrome Australia (downsyndromeaustralia.com.au), Alzheimer's Australia — Down Syndrome and Dementia resources, Council for Intellectual Disability (cid.org.au), Disability Advocacy Network Australia (dana.org.au)