Informal Supports and Carer Burnout: What Does the NDIS Need to Understand?

What are informal supports?

Informal supports are unpaid supports provided by people such as family members, partners, friends and other people within someone's existing support network.

Almost everyone relies on informal support to some extent. The important question in an NDIS context is whether the level of assistance being provided is reasonable, appropriate and sustainable.

“They live with family” doesn't tell the whole story

Living with another person doesn't automatically mean that person can provide unlimited disability-related support.

Consider an adult participant living with their mother. She might currently:

• prepare every meal
• complete the laundry and household cleaning
• prompt showering and personal hygiene
• manage medication
• drive the participant to appointments
• organise their weekly schedule
• communicate with providers
• provide emotional regulation
• respond when the participant becomes distressed
• remain available because the participant cannot safely be left alone

On paper, this can simply appear as “Participant lives with mother.”

Functionally, however, the participant could be receiving many hours of unpaid support every day. That distinction matters.

What does the NDIS consider?

When considering informal supports, the NDIA looks at more than whether a family member technically exists and is currently providing assistance.

For adults, relevant considerations include the capacity of informal supports, the intensity and type of assistance required, risks associated with relying on informal care, and whether those arrangements are sustainable over the longer term.

This is particularly important where carers are ageing, have their own responsibilities, or where the level of disability-related support required has increased.

What does “sustainable” support actually mean?

A support arrangement can be working today without being sustainable.

• A parent might currently be physically capable of assisting with transfers but be unable to safely continue doing so as they age.
• A partner might be managing overnight supervision while also working full-time.
• A sibling might have gradually become responsible for appointments, finances, transport and crisis management.
• Parents might have reorganised their entire employment and family life around providing care.

The fact that someone has been providing support doesn't automatically demonstrate that they can reasonably continue providing it indefinitely.

What is carer burnout?

Carer burnout can occur when the physical, emotional and practical demands of providing ongoing support exceed someone's capacity to maintain that role.

In an FCA, we're interested in the practical consequences of an unsustainable support arrangement. For example:

• Is the carer providing supervision throughout the day?
• Are they regularly waking overnight?
• Have they reduced employment?
• Are they unable to leave the participant alone?
• Are physical support requirements becoming unsafe?
• Are other children or family responsibilities being affected?
• Is the participant's independence restricted because they rely almost entirely on one person?
• What would happen if that person became unavailable tomorrow?

These questions help identify the actual support structure surrounding the participant.

Why is this relevant to functional capacity?

Functional capacity isn't just about what happens when everything is going well. We need to understand how the participant is currently achieving their level of function.

Imagine two participants who both arrive at appointments well dressed, have eaten breakfast and have taken their medication.

Participant A independently selected their clothing, showered, prepared breakfast, took medication and organised transport.

Participant B required their mother to wake them, repeatedly prompt showering, select appropriate clothing, prepare breakfast, administer medication and drive them to the appointment.

The outcome looks similar. The functional capacity required to achieve it is completely different.

Without identifying the informal support occurring behind the scenes, Participant B's independence could easily be overestimated.

What should an FCA document?

A comprehensive Functional Capacity Assessment should identify not only who provides informal support, but what they actually do. This can include:

• the activity being supported
• how frequently assistance is required
• whether the participant requires prompting, supervision or physical assistance
• what occurs when assistance isn't provided
• whether the participant can safely be left alone
• whether assistance is required overnight
• the impact of caring responsibilities on the informal support
• whether the arrangement is sustainable
• what risks exist if the informal support becomes unavailable

This creates a much clearer picture than simply writing that someone “has good family support.”

Building independence doesn't mean removing family

Formal supports aren't necessarily about replacing relationships with family members. In many situations, appropriate formal support can allow family relationships to return to being exactly that — family relationships.

A parent can spend time with their adult child without every interaction involving personal care, prompting, transport or supervision. A partner can remain a partner rather than becoming the person's sole support worker.

Appropriate supports can also provide opportunities for participants to develop skills, establish routines, access their community and increase independence outside their immediate family.

What happens if the primary carer becomes unavailable?

This is one of the most important questions when considering long-term support arrangements. If the participant's entire support structure depends on one person, what happens if that person becomes sick, is hospitalised, returns to work, moves away or can simply no longer maintain the caring role?

A sustainable support model should consider both the participant's current circumstances and foreseeable changes to their informal support network.

Identifying these issues before a support arrangement reaches crisis point allows participants, families and treating teams to plan more effectively.

How can Occupational Therapy help?

An occupational therapist can assess the participant's functional capacity while also identifying the amount and type of assistance currently being provided by others.

At Today & Tomorrow Allied Health, our Functional Capacity Assessments look beyond diagnosis alone. We examine what everyday life actually requires — personal care, domestic activities, cognition, community access, safety, self-management, social participation, and reliance on informal and formal supports.

Where informal support is substantial, we clearly document the participant's functional dependence, the assistance currently being provided, sustainability considerations and the risks associated with insufficient support.

We provide a 10-business-day FCA report turnaround, with assessments available by Telehealth anywhere in Australia and in person across South East Queensland, Northern Rivers, Mackay and surrounding areas.

If your current support arrangement relies heavily on family or carers, a comprehensive Functional Capacity Assessment can help ensure the full picture of everyday support is properly documented.