Co-design and lived experience in the NDIS: why it matters

Co-design puts disabled people at the centre of decisions that affect them. Here is what that means in practice, why it matters for NDIS participants, and what to look for in a provider.

If you have ever sat through a consultation where the decisions were already made, you already understand why co-design matters. In the disability sector, co-design is the practice of involving disabled people and their families as genuine partners in shaping the services, policies and systems that affect their lives. It is not a box to tick. Done well, it produces supports that actually work. Done poorly, it is window dressing that wastes everyone's time.

This article explores what co-design and lived-experience leadership really mean in the context of the NDIS, why they are worth caring about as a participant or family member, and what you can look for when you are browsing NDIS providers in your area to find organisations that genuinely walk the talk.

What does "co-design" actually mean?

The term gets used loosely, so it is worth pinning down. Co-design means that the people most affected by a decision are involved in making it, not just consulted after the fact. In a disability services context, that might look like:

Disabled people helping to write intake forms so they are not confusing or demeaning.
Family carers sitting on the advisory board of a support organisation.
A wheelchair user testing a provider's new app before it launches, not after.
Autistic self-advocates helping to train support workers in how to communicate effectively.

The opposite of co-design is the traditional "expert knows best" model, where service designers, clinicians or bureaucrats decide what disabled people need, build it, and then offer it. That model has a long and uncomfortable history in disability services in Australia, one that the NDIS was partly created to move away from.

Co-design sits on a spectrum. At the shallow end, an organisation might run a survey and call that co-design. At the deeper end, disabled people hold paid leadership roles, have genuine decision-making power, and can veto directions they believe are harmful. Most providers sit somewhere in between, and the difference matters enormously to the quality of support you receive.

Why lived experience is different from professional expertise

"Lived experience" refers to the knowledge that comes from personally navigating disability, whether your own or as a close family member or carer. It is distinct from clinical expertise, policy expertise or management expertise, though it can coexist with all of them.

A physiotherapist may know a great deal about spasticity. A person who has managed spasticity for thirty years knows something different and equally important: what it feels like to be told to "just stretch more," what adaptations actually help at 2 am, and which clinical recommendations are impossible to follow in a real household. Both kinds of knowledge are necessary. The problem is that for most of the sector's history, only one of them was treated as authoritative.

Why this gap has consequences

When lived experience is absent from service design, predictable problems follow:

Support rosters are built around organisational convenience rather than participant routines.
Communication tools are designed for neurotypical users, then retrofitted for autistic participants.
Intake processes assume a level of literacy, internet access or executive function that many participants do not have.
Behaviour support plans focus on compliance rather than communication.

None of these failures require bad intentions. They simply reflect the blind spots that appear when the people making decisions do not share the experience of the people affected by them.

What good lived-experience leadership looks like

Lived-experience leadership is not just about having a token consumer representative on a committee. It means:

Disabled people and family members in paid, senior roles with genuine authority.
Remuneration for consultation that is fair and not tokenistic.
Decision-making processes that are accessible, including for people who communicate differently.
Feedback loops where participants can see how their input changed outcomes.
A culture where "nothing about us without us" is a working principle, not a slogan.

Providers who have genuinely embedded lived-experience leadership tend to show it in their documentation, their staff profiles, their service agreements and the way their workers communicate. It is often visible before you even make an enquiry.

The NDIS framework and what it says about participant voice

The NDIS was built on a foundation of choice and control. The scheme's design assumes that participants, given good information and genuine options, are best placed to decide what supports will improve their lives. That is a significant philosophical shift from the block-funded, provider-driven system that preceded it.

The NDIS Quality and Safeguards Commission, which oversees registered providers, includes participant feedback and engagement as part of its practice standards. Providers seeking registration must demonstrate how they involve participants in their own support planning and in the broader governance of the organisation. In practice, the depth of that involvement varies considerably.

Support coordinators play an important role here. A good support coordinator will not just find you a provider who has capacity; they will help you identify providers whose values and governance structures align with your own. If you are a support coordinator looking for tools to help with that kind of shortlisting, the support coordinator workspace on OpenWay is designed with exactly that workflow in mind.

How to tell if a provider genuinely practises co-design

This is where things get practical. When you are comparing providers, here is a checklist of questions worth asking or things worth looking for.

In their public profile and documentation

Do they mention lived experience or co-design in their organisational values or about page?
Are there disabled people or family members named in leadership roles?
Do their service descriptions use plain language, or are they full of clinical jargon?
Do they publish participant feedback or outcome data?

In your initial contact

Is the intake process accessible, with options for phone, email or in-person contact?
Do they ask about your communication preferences before your first meeting?
Do they offer to meet in a location that suits you, rather than defaulting to their office?
Do they give you time to ask questions, or do they rush to sign a service agreement?

In the service agreement itself

Is there a clear, accessible complaints process?
Can you exit the agreement without unreasonable notice periods or fees?
Are the supports described in your language, or in generic provider language?

Questions to ask directly

How do participants or family members contribute to decisions in your organisation?
Do you employ people with disability in your team?
How do you handle feedback when a participant is not happy with their support?
Can you give me an example of a time participant feedback changed how you do something?

The answers to these questions will tell you a great deal. A provider who struggles to answer question four, or who gives a vague non-answer, may not have the culture you are looking for.

The broader movement: disability rights and self-determination

Co-design does not exist in isolation. It is part of a broader shift in how Australian society understands disability, one that has been driven largely by disabled people and their allies over many decades.

The social model of disability, which holds that disability arises from the interaction between a person's characteristics and a disabling environment rather than from the person themselves, underpins much of this thinking. Under the social model, the question is not "how do we fix this person?" but "how do we remove the barriers that prevent this person from participating fully?"

Co-design is the practical application of that principle to service delivery. If you believe that disabled people are the experts on their own lives, then it follows that they should be centrally involved in designing the systems meant to support those lives.

In Australia, peak bodies run by and for disabled people have long advocated for this approach. Organisations led by people with disability have pushed for greater representation in policy development, service governance and workforce planning. The NDIS, for all its imperfections, created conditions where individual participants could exercise more direct control over their supports than ever before. Co-design extends that logic to the organisational and systemic level.

What this means for you as a participant or family member

You do not need to become an advocate or a policy expert to benefit from these ideas. But understanding them helps you ask better questions, recognise good practice when you see it, and advocate for yourself when something is not working.

Some practical takeaways:

You have the right to be treated as an expert on your own life. Any provider who dismisses your preferences or experience is not a good fit.
You can ask for adjustments to how services are delivered. Reasonable adjustments are not a favour; they are a standard expectation.
If a provider's intake process or service agreement is inaccessible to you, that is information about how they will treat you as a client.
Your feedback matters. Providers who genuinely practise co-design want to hear from you, including when things go wrong.

If you are in the early stages of exploring your options, the participant guide on OpenWay outlines how the marketplace works and what kinds of providers are listed, which can help you get oriented before you start comparing.

Frequently asked

What is the difference between consultation and co-design?

Consultation usually means an organisation asks for your opinion after it has already developed a plan. Co-design means you are involved from the beginning, shaping the plan itself. The key difference is timing and power. In genuine co-design, participants have the ability to influence outcomes, not just comment on them.

How do I know if a provider employs people with disability?

Some providers are transparent about this in their staff profiles or organisational values statements. You can also ask directly during your initial enquiry. Questions like "do you have staff with lived experience of disability?" or "are there people with disability in leadership roles in your organisation?" are reasonable and appropriate. A provider who is genuinely committed to this will be happy to answer.

Can I raise co-design concerns through the NDIS complaints process?

The NDIS Quality and Safeguards Commission handles complaints about registered providers and has the ability to investigate and take action. If you feel a provider is not involving you meaningfully in your own support planning, that is worth raising. For issues about broader organisational governance rather than your individual plan, peak disability advocacy organisations may be a more appropriate avenue. Your support coordinator can help you work out the right pathway.

How OpenWay can help

Finding a provider whose values genuinely align with yours takes more than a quick internet search. OpenWay is a free marketplace for NDIS participants, families and support coordinators, designed to make it easier to compare providers, read their profiles and send enquiries, all in one place.

When you browse NDIS providers on OpenWay, you can filter by support type, location and other criteria to build a shortlist that makes sense for your situation. Provider profiles give you the kind of detail that helps you assess fit before you commit to a meeting, including information about how organisations describe their approach to participant involvement.

Support coordinators can use OpenWay to manage shortlists, share options with participants and track enquiries without juggling spreadsheets and inboxes. If you are a coordinator looking for a more efficient way to find and present options, take a look at the support coordinator tools on OpenWay.

OpenWay is not part of the NDIS, NDIA or NDIS Commission. Final scope, pricing, travel, cancellation rules and non-face-to-face charges must be confirmed in a written service agreement between the participant (or their authorised support person) and the provider.

This article was written by OpenWay editorial with AI assistance. We review for accuracy + tone but the framing rules of the NDIS apply: nothing here is medical, legal or financial advice. Always check the NDIS Commission and your plan for the latest rules.