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

If you have spent any time in disability circles, you have probably heard the phrase "nothing about us without us." It is a simple idea with a long history: decisions that affect disabled people should be made with disabled people, not just for them. In the NDIS context, this principle shows up under two related labels - co-design and lived experience leadership. Both terms get used a lot, sometimes loosely. This article looks at what they actually mean, why they matter in practice, and what participants and families can reasonably expect from a sector that claims to take them seriously.

The short answer is this: co-design done well produces supports that fit real lives. Lived experience leadership done well means disabled people and carers are not just consulted - they are in the room shaping policy, running organisations, and holding the sector to account. When either of those things is done poorly, the result is a system that looks participatory on paper but still leaves the people it is meant to serve on the outside.

What co-design actually means - and what it does not

Co-design is a process, not a document. At its core, it means involving the people who will use a service in the design of that service, from the earliest stages, in a way that genuinely shapes the outcome. That last part is important. Consultation - asking people what they think after the main decisions have already been made - is not co-design, even when it is labelled that way.

Genuine co-design in the disability sector might look like:

• A provider bringing together a group of participants with different support needs to help design a new community access programme before any staffing or scheduling decisions are locked in.
• A peak body paying disabled people for their time and expertise as they help draft a submission to a government review.
• A support coordination team asking participants to review their intake process and then actually changing the process based on what they hear.
• A technology developer working alongside wheelchair users from the prototype stage of a new assistive device, not just the testing stage.

What co-design does not look like is a survey sent out after a programme is already running, or a single community consultation event where feedback is noted but never acted on. Participants and families are often good at spotting the difference. The tell-tale sign of tokenistic co-design is that the people involved cannot point to a single concrete change that resulted from their input.

For NDIS participants browsing for suitable providers, it is worth asking directly: how do you involve participants in designing or improving your services? A provider who can give you a specific, honest answer is more likely to be genuinely accountable to the people they support.

Why lived experience leadership goes further than consultation

Lived experience leadership is a step beyond co-design. It means disabled people and their families are not just involved in decisions - they are making them. That includes leading organisations, sitting on boards, managing teams, setting strategy, and advocating publicly as recognised experts in their own right.

The distinction matters because expertise is not only academic or professional. A person who has navigated the NDIS for years, managed complex support needs, or raised a child with a disability has knowledge that cannot be replicated in a policy seminar. When that knowledge is treated as a resource rather than a problem to be managed, the sector gets better at its job.

Lived experience leadership also changes the culture of organisations. A disability service run by people with disability tends to design differently - not because disabled people are automatically perfect managers, but because the frame of reference shifts. Questions like "is this process genuinely accessible?" or "does this communication assume too much?" get asked earlier and more naturally when the people asking them have personal skin in the game.

This does not mean every person in every role at a disability organisation needs to have a disability. It means that leadership structures - boards, executive teams, advisory groups, policy committees - should reflect the people the sector exists to serve. And it means those roles should come with real authority, not just a seat at the table where the important decisions have already been made elsewhere.

If you are a participant or family member trying to assess a provider's values, look at their leadership. Do they publish information about who runs the organisation? Are there disabled people in senior roles? Do they have a consumer advisory group with genuine influence? These are reasonable questions to ask, and a provider confident in their approach should be able to answer them.

You can explore provider profiles on OpenWay to get a sense of how different organisations present themselves, including the values and approaches they choose to highlight - browse NDIS providers across Australia to start comparing.

The NDIS design and what participant voice was meant to look like

The NDIS was itself built on a co-design philosophy, at least in aspiration. The scheme was shaped in part through extensive community consultation, and the idea of individual planning - where participants direct their own supports - reflects a genuine commitment to self-determination. The principle that participants should have choice and control over their supports is not just a slogan. It is embedded in how the scheme is structured.

In practice, the distance between that aspiration and the lived reality of navigating plans, providers, and reviews has been a source of ongoing frustration for many participants and families. Planning processes can feel formulaic. The language of plans does not always reflect the words or priorities of the person the plan belongs to. Support coordinators are sometimes stretched thin, and participants without strong advocates can find themselves with supports that do not quite fit.

None of this means the aspiration was wrong. It means implementation is hard, and that the work of embedding participant voice into a system as large and complex as the NDIS is ongoing. Support coordinators play a crucial role in that work. When they are well-resourced and genuinely participant-focused, they can translate the principle of choice and control into real options. If you are a support coordinator looking for ways to do that job more effectively, the support coordinator workspace on OpenWay is designed to help you find, shortlist, and share provider options with the participants you support.

How the sector is responding - and where the gaps remain

Across the disability sector in Australia, there has been meaningful growth in the visibility and influence of lived experience voices. Organisations led by disabled people have grown in number and profile. Advocacy bodies have pushed for stronger representation in policy processes. Some providers have restructured their governance to give participants genuine decision-making power.

At the same time, the gaps are real and worth naming honestly.

Pay and recognition

Lived experience work is still often underpaid or unpaid. Asking disabled people to contribute their expertise to co-design processes without fair compensation is not just unfair - it undermines the principle itself. If lived experience is genuinely valued, it should be compensated at the same rate as any other professional expertise.

Representation within representation

"Lived experience" is not a single, uniform thing. The disability community is enormously diverse. A co-design process that involves only certain types of disability, or only people who are already connected to formal advocacy networks, will still miss large parts of the population it claims to represent. Genuine co-design requires active effort to reach people who are harder to reach - those with complex communication needs, those from culturally and linguistically diverse backgrounds, those in regional and remote areas, and those who have historically been excluded from these conversations.

The difference between advisory and decisive

Many organisations now have lived experience advisory panels or consumer consultative bodies. These are a positive development. But the test is always whether those bodies have real influence. Can they change a budget decision? Can they veto a programme design that does not work for participants? Or are they consulted after the key decisions have been made? Participants and families are right to ask those questions.

What this means when you are choosing a provider

When you are looking for an NDIS provider - whether for yourself, a family member, or someone you support - the question of values is not separate from the question of quality. A provider that genuinely involves participants in its design and governance is more likely to be responsive when something is not working. It is more likely to communicate clearly, adapt its approach, and treat the people it supports as capable adults with their own expertise about their own lives.

Here is a practical checklist to use when assessing a provider's approach to participant voice:

1. Do they involve participants in designing or reviewing their services? Can they give you a specific example?
2. Are there disabled people or family carers in leadership or governance roles?
3. Do they have a complaints or feedback process that is genuinely accessible - not just a form on a website?
4. Do they pay people for lived experience input, or is it expected as a volunteer contribution?
5. Can they point to a change they made based on participant feedback?
6. Do their communications assume competence and respect autonomy?

No provider will score perfectly on every point. But asking the questions tells you something about the culture, and how a provider responds tells you even more.

For participants and families at the beginning of their search, the participant guide on OpenWay explains how the platform works and how to use it to find providers that suit your needs and location.

Frequently asked

What is the difference between co-design and consultation in the NDIS context?

Consultation means asking people for their views, usually after the main decisions have already been made. Co-design means involving people from the start, giving their input genuine weight, and being willing to change the outcome based on what they say. In the NDIS context, real co-design would mean participants helping to shape a service or policy from the ground up, not just responding to a draft that is already mostly finished.

How can I tell if a provider genuinely values lived experience, or is just using the language?

Ask specific questions. A provider who genuinely values lived experience should be able to tell you who is in their leadership, how participants are involved in service design, and what has actually changed as a result of participant input. Vague answers about "person-centred care" without concrete examples are a signal worth paying attention to.

Does OpenWay verify whether providers follow co-design principles?

OpenWay is a marketplace that helps participants, families and support coordinators find and compare providers. It does not audit providers' internal governance or co-design practices. What it does is give you a place to read provider profiles, send enquiries, and ask your own questions - including about lived experience leadership. You can learn more about how OpenWay approaches trust and safety on the platform.

How OpenWay can help

If you are looking for NDIS providers who align with your values as well as your support needs, OpenWay gives you a free, searchable space to compare options across Australia. You can read provider profiles, filter by support type and location, and send enquiries directly - all without cost to participants or families.

Support coordinators can use OpenWay to shortlist providers efficiently and share options with the participants they support, making the process of finding a good fit more transparent and less time-consuming. Visit the support coordinator workspace on OpenWay to see how it works.

The question of whether a provider genuinely listens to the people it supports is one only you can answer - but having more options in front of you makes it easier to ask the right questions. Browse NDIS providers on OpenWay and start building your shortlist today.

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.