Multiple sclerosis (MS) is a chronic autoimmune condition in which the immune system attacks the myelin sheath that protects nerve fibres in the brain and spinal cord. Australia has one of the highest rates of MS in the world, with more than 33,000 Australians living with the condition. MS typically affects people in their most productive years, with diagnosis most common between the ages of 20 and 40. The functional impact of MS is highly variable, both between individuals and within the same individual over time, producing specific challenges for NDIS planning that require comprehensive, condition-specific assessment.

What is multiple sclerosis?

When myelin is damaged in MS, nerve signals slow down or are blocked entirely in the affected areas of the central nervous system. The location of the myelin damage — which can occur anywhere in the brain or spinal cord — determines which functions are affected. Because MS can damage myelin in many different locations, symptoms vary significantly between people with MS. One person may be predominantly affected by walking difficulties and fatigue, while another may be primarily affected by visual disturbance, cognitive impairment or bladder dysfunction.

MS is not directly inherited, though genetic factors influence susceptibility. It is more common in women than men, in a ratio of approximately 2:1 for relapsing forms. MS is not a direct cause of death in most cases, though it significantly affects quality of life and independence, and progressive forms can lead to severe disability over time.

Types of multiple sclerosis

MS is classified into four types based on the pattern of the disease course. Understanding the type of MS is clinically important for NDIS planning because different types have different functional trajectories and different implications for how the NDIS plan should be structured.

How MS affects daily functioning

MS can affect virtually every domain of daily functioning. The combination of physical, cognitive, fatigue-related and emotional symptoms produces a functional profile that is both highly variable and highly individual. A Functional Capacity Assessment for MS must address each of these domains specifically in the context of the person’s actual daily life.

Fatigue

Fatigue is the most common and most functionally significant symptom of MS, affecting approximately 80 per cent of people with the condition. MS fatigue is qualitatively different from ordinary physical tiredness. It is a profound, neurologically based exhaustion that arises from the damage to the central nervous system itself and from the additional effort the nervous system must expend to route signals around damaged areas. It does not respond to rest in the way ordinary tiredness does. It can be present even when the person has not been physically active.

MS fatigue is worsened by heat (see Uhthoff’s phenomenon below), by infection and by cognitive and emotional effort as much as by physical exertion. The functional consequence is that a person with MS may have a severely restricted daily activity capacity. They may be able to perform a morning routine but be entirely unable to engage in any further meaningful activity by the afternoon. Plans, appointments and activities cannot be assumed to be achievable based on the person’s apparent capacity at the best time of day.

The Functional Capacity Assessment must specifically address MS fatigue: how it presents for this person, what triggers it, when across the day it is worst, what functional activities it prevents and what the cumulative effect is on the person’s ability to manage daily life across a full week.

Uhthoff’s phenomenon — heat sensitivity

Uhthoff’s phenomenon is the temporary worsening of MS symptoms when body temperature rises. It occurs because damaged myelin conducts nerve signals less efficiently when the temperature increases. Exposure to environmental heat, physical exertion that raises core body temperature, hot showers or baths, fever or emotional stress can all trigger a temporary deterioration in functioning that can be dramatic and disabling.

A person with MS who appears to be functioning relatively well in a cool, air-conditioned clinical environment may be significantly more impaired in a warm home, outdoors in summer or after moderate physical activity. The Functional Capacity Assessment must specifically assess heat sensitivity and its implications for the person’s home environment, their capacity for daily activities across different seasons and different times of day and the home modifications or environmental controls that may be clinically indicated.

Mobility and physical functioning

Mobility difficulties are common across MS types and can range from mild gait disturbance to complete inability to walk. Spasticity — increased muscle tone and stiffness, particularly in the legs — contributes to walking difficulties, pain and reduced range of movement. Balance impairment increases falls risk and affects the safety of all mobility-dependent daily activities. Upper limb tremor and coordination difficulties can affect fine motor tasks including writing, using utensils, managing buttons and operating technology.

In RRMS, mobility may be significantly worse during a relapse than between relapses. The NDIS plan must account for the full range of mobility capacity across different phases of the condition, not only for the person’s best period.

Bladder and bowel dysfunction

Bladder dysfunction affects the majority of people with MS at some point in the condition’s course. It may present as urinary urgency, urinary frequency, difficulty initiating urination or urinary incontinence. Bowel dysfunction, including constipation and bowel urgency, also occurs. These symptoms have direct implications for daily life, community access, personal hygiene support requirements and the design of the home bathroom environment. They must be specifically assessed and documented in the Functional Capacity Assessment.

Pain

Chronic pain affects a significant proportion of people with MS. This includes neuropathic pain, which arises directly from nerve damage and is typically described as burning, stabbing or electric in quality; musculoskeletal pain arising from spasticity, abnormal gait patterns and postural changes; and headache. Pain directly affects the person’s capacity to sustain daily activities, maintain sleep and engage in community participation, and must be assessed and documented as a functional impairment in its own right.

Cognitive impairment

Cognitive impairment affects approximately 50 to 65 per cent of people with MS and is present across all disease types, including in some people with relatively mild physical disability. The pattern of cognitive impairment in MS commonly includes slowed information processing speed, difficulties with working memory and episodic memory, reduced attention and concentration and problems with executive functioning. These impairments are often not apparent in brief social interactions and are frequently underestimated by both the person with MS and those around them.

The functional consequences of cognitive impairment in MS include difficulty managing the administrative demands of daily life such as finances and appointments, difficulty following multi-step instructions and retaining new information, challenges with employment that requires sustained concentration and information processing, and difficulty navigating complex systems including the NDIS itself. The Functional Capacity Assessment must specifically assess cognitive functioning in the context of actual daily tasks rather than relying solely on the person’s self-report of their cognitive capacity.

Depression, anxiety and emotional wellbeing

Depression affects more than 60 per cent of people with MS over the course of their illness — a rate significantly higher than in the general population and higher than for other chronic neurological conditions. Anxiety is also common. Both depression and anxiety directly affect cognitive functioning, fatigue, motivation and the capacity to engage with support and treatment. The psychological impact of living with a condition that is unpredictable, progressive and without a cure is a clinically significant contributor to functional impairment that must be documented in the Functional Capacity Assessment.

The unique NDIS planning challenge in MS: variability and progression

Variability: a person with RRMS may function relatively well between relapses and be unable to perform basic daily activities during a relapse. An NDIS plan based only on the person’s presentation during a stable period will be completely inadequate during a relapse.

Heat sensitivity: the same person may function significantly differently in summer versus winter, or at different times of day. Seasonal and thermal variation must be documented.

Progression: for people with SPMS or PPMS, functional capacity is declining over time. The plan must be designed to meet current needs but must also anticipate the trajectory of progressive disability.

Invisible symptoms: fatigue, cognitive impairment, bladder symptoms and pain are not visible to others and are frequently underrepresented in NDIS plans. The FCA must specifically document each of these.

The full range: the Functional Capacity Assessment must document functioning across good periods, typical periods and relapse or high-symptom periods, and must provide clinical opinion on the support required across each phase.

MS and NDIS eligibility

Multiple sclerosis is included in NDIS Condition List B. A confirmed diagnosis of MS does not automatically establish NDIS eligibility — the person must demonstrate that the condition results in substantially reduced functional capacity across one or more NDIS functional domains. Given the variability of MS, the Functional Capacity Assessment plays a critical role in documenting the actual functional impact of the condition in the person’s daily life, particularly the impact of fatigue, cognitive impairment and heat sensitivity that may not be apparent from the diagnostic report alone.

Research from MS Australia found that among 156 people with MS participating in an Australian study, approximately 49 per cent were receiving an NDIS package, and there was significant variance in the level of NDIS support provided, particularly for people with less severe physical disability — the group in which the invisible symptoms of fatigue and cognitive impairment are most likely to be underrepresented in documentation.

What a Functional Capacity Assessment covers for MS

• Assessment of MS fatigue: its severity, what triggers it, its pattern across the day and week, and its functional impact on the capacity to sustain daily activities and community participation
• Assessment of Uhthoff’s phenomenon: how heat sensitivity affects functioning and what environmental modifications or behavioural strategies are clinically indicated
• Assessment of mobility, gait, balance, spasticity and upper limb function in the home and community environment across different times of day and different symptom phases
• Assessment of bladder and bowel dysfunction and the support and environmental modifications required for continence management
• Assessment of pain and its functional impact on daily activities and sleep
• Assessment of cognitive functioning in the context of actual daily tasks, including executive functioning, memory and processing speed
• Assessment of depression, anxiety and emotional wellbeing and their functional impact
• Documentation of functioning across the full range — good periods, typical periods and relapse or high-symptom periods — with clinical opinion on support requirements across each phase
• For SPMS and PPMS: prospective assessment of the likely functional trajectory and recommendations that account for anticipated progressive deterioration
• Assessment of assistive technology requirements including mobility aids, pressure care equipment and environmental controls such as air conditioning where heat sensitivity is clinically significant
• Assessment of home modification requirements including bathroom modifications and other accessibility changes
• Specific recommendations across each NDIS functional domain grounded in direct observation in the home and community environment

The 2026 NDIS context

The Securing the NDIS for Future Generations Bill 2026, introduced to Parliament on 14 May 2026, strengthens the requirement that NDIS supports must have a direct causal connection to the eligible impairment. For people with MS, this means the Functional Capacity Assessment must clearly document how the specific features of the MS presentation — including fatigue, heat sensitivity, cognitive impairment and the fluctuating course — cause the functional impairments documented and justify the support requirements identified. A Functional Capacity Assessment that captures only the physical symptoms of MS while leaving the fatigue, cognitive and emotional impacts undocumented will not provide an accurate or adequate evidence base under the current and forthcoming legislative framework.

Who can refer?

Referrals are accepted from participants and families, support coordinators, neurologists, MS nurses, GPs and legal representatives involved in NDIS appeals. Sina OT has completed Functional Capacity Assessments for individuals with multiple sclerosis across a range of disease types and stages across Adelaide, Melbourne and Sydney. All assessments are completed in person in the participant’s home and community environment.