Supporting People with Intellectual Disability: A Guide for NDIS Support Workers
This guide brings together current research and the practical experience we have gained supporting people with intellectual disability across South East Queensland. Our hope is that sharing what we have learned will help more individuals, families and support workers. The aim is support that is respectful, person-centred and evidence-informed.
Registered NDIS Provider · Gold Coast, Logan, Ipswich & Brisbane
Intellectual disability is a difference in how a person learns, reasons and processes information. It is not a reflection of a person's worth, potential or right to a full life. Effective support is not about deciding what is best for someone or moving them efficiently through their day. It is about recognising a person's right to make their own decisions wherever possible, and communicating in ways that genuinely make sense to them. It is also about building a relationship strong enough that they trust you to support their choices rather than replace them.
At Hearts In Action, these principles guide the way we support people every day. This guide combines evidence from the research with practical insights from our work alongside people with intellectual disability and their families. We hope it encourages thoughtful, rights-based support that helps people build autonomy, confidence and a genuine say over their own lives.
A note before you read on
Every person is unique, including every person with intellectual disability. The patterns in this guide come from research, but no two people experience intellectual disability the same way. Support needs vary enormously across the spectrum of severity and individual circumstance.
Use this guide as a way to build understanding while remaining open, curious and responsive to the person you are supporting. Their communication style, pace, preferences and goals should always guide the support they receive.
The Relationship Is the Vehicle for Everything Else
Research into the working relationships of support staff in supported living services found that a trusting relationship functions as "the vehicle" through which a person's actual needs get met (D'Sa et al., 2024). Trust is not a pleasant extra alongside good care. It is the mechanism that makes good care possible at all. The same study identified a "fine balancing act" support workers must navigate. They need to be close and familiar enough to build genuine trust, while maintaining the professionalism needed to support someone well over the long term. Support workers in the study described this balance as something learned over time through the relationship itself, not a fixed rule that could be taught. The right level of closeness looks different with every person, and it shifts as trust develops. A support worker who is inconsistent, rushed, or focused only on completing tasks undermines the very relationship that determines whether their support actually works. This is why our personal care and daily living support is delivered by familiar, consistent workers wherever possible. That way, trust doesn't have to be rebuilt from scratch every visit.
It's worth remembering
Invest time in genuinely knowing the person, not just their support plan. Small consistent things, remembering what they mentioned last visit, following through on a promise, showing real interest, build the trust that everything else depends on. Consistency matters more than intensity: showing up reliably over months does more for trust than one exceptional visit ever will.
Autonomy Is a Right, Not a Privilege to Be Earned
A systematic review synthesised 15 qualitative studies involving 246 people with intellectual disability (Sheerin et al., 2026). It found a consistent and confronting theme, captured in the phrase "we know what's best for you". Many participants felt decisions were routinely made for them without their input. The same review found that "the loudest voice gets heard." Family members, staff or services with the most influence often shape decisions, regardless of what the person themselves wants. It also found that people with intellectual disability frequently hold a clear, meaningful sense of what autonomy means to them. That sense holds even when the systems around them do not reflect it back. Participants across the included studies described autonomy not as an abstract right but as something felt in small, everyday moments. Those moments included choosing what to eat, when to go out, and how to spend money. Participants noticed keenly when those small choices were quietly taken away. This is not a minor oversight. It is a systemic pattern that this same body of research argues requires genuine person-centred practice, not just policy language, to change. It's the same principle our community access support is built around: real choices about where to go and what to do, not a fixed itinerary.
It's worth remembering
Before deciding, suggesting or acting on someone's behalf, ask whether they have been given a genuine opportunity to decide for themselves first. Notice whose voice is being heard in a room, and make sure it includes the person you are there to support. If a decision has already been made without them, ask whether it can still be revisited.
Practise Supported Decision-Making, Not Substitute Decision-Making
Supported decision-making is an approach where a person is helped to understand options and express their own will, rather than having someone else decide for them. It is grounded in Article 12 of the UN Convention on the Rights of Persons with Disabilities. One qualitative study implemented supported decision-making in a day program for adults with intellectual disability (Gudelytė et al., 2024). Over six months, participants became more expressive, more able to discuss and debate options, and reported feeling "more like a human." Staff found the approach fulfilling, and noticed it increased participants' sense of ownership over decisions. Staff also reported an initial adjustment period. They needed to slow down, and resist the urge to jump in with a suggestion, before the shift in participant confidence became visible. A broader review found that adults with intellectual disability consistently reported wanting to make their own decisions (Casey et al., 2025). Support workers, meanwhile, often struggled to balance the person's wishes against family concerns about safety. The review highlighted supported decision-making as a practical way through that tension.
It's worth remembering
Break decisions down into smaller, understandable parts, offer real choices rather than leading questions, and give the person time to consider before expecting an answer. Supporting a decision means helping someone reach their own conclusion, not steering them toward yours, even when their conclusion differs from what you would choose.
Guard Against Diagnostic Overshadowing
Diagnostic overshadowing is a well-documented bias. Symptoms of a separate physical or mental health condition, such as pain, depression or anxiety, are wrongly attributed to the person's intellectual disability itself (Dell'Armo & Tassé, 2024). When that happens, the underlying issue goes untreated. A 2025 study tested this bias with licensed psychologists (Dell'Armo & Tassé, 2025). Clinicians still rated conditions such as schizophrenia as significantly less likely when a client was described as having intellectual disability. Most clinicians did still consider a mental health diagnosis overall, which suggests the bias is real but more subtle than previously assumed. This matters directly for support workers. It means genuine, treatable conditions such as depression, chronic pain or anxiety can go unrecognised for years. Distress or behaviour change is instead labelled as simply "part of the disability." Whenever a person with intellectual disability shows signs of distress or behaviour change, current clinical guidance recommends a full, individualised health assessment (Dell'Armo & Tassé, 2024). It warns against attributing the change to the disability by default.
It's worth remembering
If someone's behaviour, mood or functioning changes, resist the assumption that "it's just part of their disability." Advocate for a proper health check, and share detailed, specific observations with clinicians rather than general descriptions. Specific information, what changed, when, and how, counters this bias more effectively than a general concern.
Communicate in Ways That Actually Work for the Person
Accessible communication includes Easy Read materials, plain English, and visual supports. It is not a simplification of respect but a practical requirement for genuine inclusion (D'Sa et al., 2024). It allows people with intellectual disability to understand information that directly affects their lives, and to participate meaningfully in decisions about it. Communication style needs to be individualised. Some people process written Easy Read materials well. Others rely on verbal explanation, pictures, or trusted people repeating information in different ways over time. What works for one person may not work at all for another. Assuming a person has not understood, or over-simplifying without checking, can be as excluding as failing to adapt communication in the first place. Both approaches remove the person from genuine participation in their own decisions. Getting communication right is not a one-off adjustment either; it typically requires ongoing attention as a person's preferences, context and confidence change over time.
It's worth remembering
Ask how the person prefers to receive information. Check understanding by asking them to explain it back in their own way, rather than simply asking "does that make sense?" Adjust your pace, format and language to the person in front of you, not to a general assumption about intellectual disability.
Recognise That Self-Determination Looks Different for Everyone
Self-determination is, broadly, the capacity to be the causal agent in one's own life. It is strongly linked to quality of life for people with intellectual disability. Even so, a 2025 inclusive study involving 33 co-researchers with intellectual disability found that participants' own definitions of independence varied significantly (Parchomiuk et al., 2025). Those definitions were shaped by their living situation, personal competencies, and the attitudes of the people around them. Crucially, the same research found that other people's expectations and support, or lack of it, directly shaped how much independence a person could actually exercise. That held regardless of their underlying capability. Two people with similar skills could have very different lived experiences of independence, depending entirely on who supported them. Participants also described independence as something that could grow over time when they were given real opportunities to practise it. It was not a fixed trait they either possessed or lacked from the outset. Independence is therefore not something a person with intellectual disability either "has" or "lacks." It is something that support, environment and relationships either enable or constrain. Creating real opportunities to practise independence, safely and repeatedly, is the entire purpose of our capacity building support.
It's worth remembering
Do not assume what independence should look like for someone based on general expectations. Ask them directly what independence means to them. Then look honestly at whether your own support is expanding or limiting their opportunities to exercise it, even in small day-to-day moments.
Address the Training and Systemic Gap
Programs designed to train support workers and family members in supported decision-making show that most existing training focuses narrowly on changing what supporters do (Gudelytė et al., 2024). Far less attention is paid to whether supporters' underlying attitudes and assumptions about capacity actually shift. This matters because scripts are not enough. A support worker can be taught to offer choices without ever examining their own assumptions about what the person is capable of deciding. Under pressure, that worker is likely to revert to old patterns, particularly when time is short or a decision feels risky. Genuine change requires ongoing reflection, not a single training session. The research suggests that lasting shifts in practice come from repeated, honest examination of one's own instincts, not from memorising a new set of steps.
It's worth remembering
Regularly examine your own assumptions about what the person you support is capable of deciding or doing. Assumptions formed early, or based on how someone communicates, are often wrong and worth actively questioning. That is especially true under time pressure, when it is easiest to default to deciding for someone rather than with them.
Families Are Partners, Not Peripheral
Family members are frequently a person's most consistent source of support and knowledge. But research into everyday decision-making found that care partners' concerns about safety and decisional capacity can sometimes conflict with what the person actually wants (Casey et al., 2025). That leaves support workers navigating between the two. This tension is not a sign that either party is wrong. Families often carry years of context about risk and past experience, and that context is genuinely useful. The person themselves still holds the right to make their own choices, including choices that carry some risk. This is not a reason to sideline families. It is a reason to communicate with them clearly and collaboratively, while keeping the person's own voice central. That holds even when family concerns are valid and worth taking seriously.
It's worth remembering
Where appropriate and with consent, keep families informed and involve them in problem-solving, while making sure the person's own preferences are never lost in the conversation. Good support holds both the person's autonomy and the family's genuine concerns at the same time. Neither is treated as automatically more important than the other.
References
- Casey, H., Trayer, Á., Desmond, D., & Coffey, L. (2025). Experiences and perceptions of everyday decision-making in the lives of adults with intellectual disabilities, their care partners and direct care support workers. Journal of Intellectual Disabilities, 29(3), 683–705. https://doi.org/10.1177/17446295231189020
- Dell'Armo, K., & Tassé, M. J. (2024). Diagnostic overshadowing of psychological disorders in people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities, 129(2), 116–134. https://doi.org/10.1352/1944-7558-129.2.116
- Dell'Armo, K., & Tassé, M. J. (2025). How intellectual disability may bias psychologists' clinical impressions: An examination of diagnostic overshadowing. Psychological Assessment, 37(4), 161–171. https://doi.org/10.1037/pas0001367
- D'Sa, R., Fletcher, I., & Field, S. (2024). Exploring the experience of working relationships for support workers of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 37(5), Article e13285. https://doi.org/10.1111/jar.13285
- Gudelytė, U., Ruškus, J., & Tyson McCrea, K. (2024). "Help me to decide": A study of human rights-based supported decision making with persons with intellectual disabilities. American Journal of Orthopsychiatry, 94(3), 297–310. https://doi.org/10.1037/ort0000724
- Parchomiuk, M., Żyta, A., & Ćwirynkało, K. (2025). Navigating self-determination: Perspectives of people with intellectual disabilities. Journal of Intellectual Disabilities. Advance online publication. https://doi.org/10.1177/17446295251335910
- Sheerin, J., Larkin, F., & Dockray, S. (2026). Perceptions of people with intellectual disabilities on autonomy and decision-making in daily life: A systematic review and synthesis of qualitative studies. Journal of Intellectual Disability Research, 70(3), 225–241. https://doi.org/10.1111/jir.70035