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

If you have ever sat in a meeting where decisions about your life were made without you, you already understand the problem that co-design is trying to solve. At its core, co-design means that disabled people are not just consulted after the fact - they are involved from the beginning, shaping the policies, services and systems that directly affect them. In the NDIS context, that principle has enormous implications: for how supports are designed, how providers operate, and how the scheme evolves over time.

This is not a straightforward topic, and it is worth approaching honestly. Co-design is sometimes done well. It is sometimes done poorly. And it is sometimes used as a label that lends legitimacy to processes that remain, in practice, top-down. Understanding the difference matters if you are a participant trying to choose a provider, a family member advocating alongside a loved one, or a support coordinator helping someone build a life that genuinely reflects their goals.

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

The term co-design comes from design thinking and participatory research traditions. In disability services, it refers to the active involvement of people with disability in creating the services, programmes and policies that are meant to serve them. That involvement should be meaningful: not a tokenistic survey at the end of a process, but genuine influence over decisions while there is still time to change them.

Co-design sits on a spectrum. At one end, an organisation might hold a focus group, collect feedback, and then proceed largely as planned. That is consultation, not co-design. At the other end, people with lived experience hold decision-making roles, are paid fairly for their time, and have genuine power to redirect a project. The distance between those two ends is significant.

The disability rights movement has long held that nothing about us without us is not just a slogan - it is a standard. The NDIS was itself shaped, at least in part, by decades of advocacy from disabled people and their families pushing for a scheme built around individual choice and control rather than block-funded services that people had to fit into. That history matters. It is a reminder that the scheme exists because of lived-experience leadership, not in spite of it.

Why lived-experience leadership is different from consultation

There is a meaningful distinction between asking someone for their opinion and giving them authority to shape an outcome. Lived-experience leadership goes further than consultation. It means people with disability hold roles - paid, recognised, influential roles - within organisations, policy bodies and service design processes.

This matters for several reasons.

• Expertise that cannot be replicated. A person who navigates the NDIS every day, manages support workers, advocates for their own needs, and lives with the consequences of policy decisions has a form of expertise that no amount of professional training can fully substitute. That expertise should be valued and compensated accordingly.

• Accountability to the people most affected. When people with lived experience are in leadership roles, there is a direct accountability loop. Decisions are more likely to be stress-tested against real-world impact before they are implemented.

• Trust. Participants and families are more likely to trust a service or policy process when they can see that people who share their experience have been genuinely involved. That trust is not automatic, but it is much harder to build without visible representation.

• Better outcomes. This is perhaps the most practical argument. Services designed with input from the people who use them tend to work better. They address the right problems, avoid unintended consequences, and adapt more readily to what participants actually need.

Browse NDIS-registered providers in your area and look at how providers describe their approach to participant involvement - it can tell you a lot about their values before you even make contact.

The gap between principle and practice

Acknowledging the value of co-design is easy. Embedding it genuinely is harder. Several common barriers come up repeatedly in the disability sector.

Tokenism and performative inclusion

Tokenism happens when an organisation includes one or two people with disability in a process primarily to be able to say they did. The person is not given adequate preparation time, is not paid fairly, and their input does not visibly change the outcome. This is not just ineffective - it is actively harmful, because it consumes the time and energy of disabled people without delivering anything meaningful in return.

Genuine co-design requires investment: accessible formats, reasonable time to review materials, appropriate payment, and a clear explanation of how input will be used. If an organisation cannot describe what changed as a result of lived-experience input, that is worth noting.

Power imbalances within the process

Even well-intentioned co-design processes can reproduce existing power imbalances. People with certain communication styles, educational backgrounds, or types of disability may find it easier to participate in standard meeting formats than others. A truly inclusive process designs for the full range of participants - using plain language, offering multiple ways to contribute, and actively seeking out perspectives that are often underrepresented, including those of people with intellectual disability, people from culturally and linguistically diverse backgrounds, and people in regional and remote areas.

Unpaid or underpaid involvement

One of the clearest signals of whether an organisation takes co-design seriously is whether it pays people with lived experience for their time. Expecting disabled people to contribute their expertise for free - or for a token gift card - is inconsistent with the values of genuine inclusion. It also tends to limit participation to people who can afford to give their time without compensation, which skews whose voice gets heard.

Support coordinators can play a role here too. If you work with participants who are interested in advocacy or co-design opportunities, understanding the support coordinator workspace on OpenWay can help you track and share relevant resources alongside your usual provider shortlisting work.

What this looks like in a provider context

For NDIS participants and families choosing between providers, co-design and lived-experience leadership can be useful signals of quality - though they are not guarantees. Here are some things worth looking for or asking about.

Questions to ask a potential provider

1. Does your organisation have people with disability in paid leadership or governance roles?
2. How do you involve participants in designing or reviewing your services?
3. Can you give an example of something that changed in your organisation because of participant feedback?
4. How do you make your co-design processes accessible to people with different communication needs?
5. Do you pay people with lived experience for their time when they contribute to your design processes?
6. How do you handle feedback or complaints from participants?

There are no trick questions here. A provider who engages thoughtfully with these questions - even if their answers are honest about where they are still growing - is demonstrating something important about their culture.

What to look for in a provider profile

Beyond formal co-design processes, you can often get a sense of a provider's values from how they describe themselves. Do they use person-first language or identity-first language? (Both are valid; what matters is whether they are responsive to individual preference.) Do they describe participants as active agents in their own support, or as recipients of services? Is their language warm and specific, or does it read like a compliance checklist?

Exploring provider profiles on OpenWay gives participants and families a starting point for this kind of comparison, without the pressure of a formal referral process.

The broader policy picture

Co-design is not just a provider-level concern. It shapes the NDIS at a systemic level - in how the rules are written, how the pricing arrangements are set, and how the scheme responds to participant feedback over time. The disability sector in Australia has a long history of advocacy organisations led by and for disabled people, and those organisations have been central to shaping the scheme's design.

That does not mean the system is perfect. Participants and families regularly encounter gaps between the scheme's stated values and their day-to-day experience. Navigating those gaps - understanding what your plan can fund, finding providers who genuinely align with your goals, knowing your rights when things go wrong - is part of the ongoing work of participating in the NDIS.

The trust and safety standards on OpenWay reflect a commitment to provider accountability that aligns with the broader principle of lived-experience leadership: participants deserve to know who they are dealing with, and providers should be able to demonstrate that they are operating with integrity.

Why this conversation is worth having

It would be easy to dismiss co-design as an abstract policy concept with limited relevance to the practical work of finding a support worker or a therapist. But the connection is real. The values that make co-design meaningful - respect for autonomy, genuine listening, accountability to the people most affected - are the same values that make a good provider relationship work.

When a support worker actually listens to how you want your morning routine to go, rather than following a generic checklist, that is lived-experience leadership at the most immediate scale. When a provider changes its intake process because participants said it was confusing, that is co-design in practice. When a peak body includes people with intellectual disability on its board and pays them fairly for that work, that is the principle operating at a systemic level.

These things are connected. The culture of a sector is built from the accumulated decisions of individual organisations and individual workers. Choosing providers who take participant voice seriously is one way of supporting that culture.

Frequently asked

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

Consultation typically means gathering feedback after a decision has largely been made. Co-design means involving people with lived experience from the beginning, giving them genuine influence over the outcome, and paying them appropriately for their time. The difference is not just semantic - it affects whether the process produces services and policies that actually work for the people they are meant to serve.

How can I tell if a provider genuinely practises co-design, or just uses the language?

Ask direct questions: Can they give a specific example of something that changed because of participant input? Do they pay people with lived experience for their time? Do they have people with disability in leadership or governance roles? A provider who can answer these questions with concrete examples is more likely to be walking the talk than one who gives only general assurances.

Does co-design only apply to large organisations and policy processes?

No. The principles of co-design apply at every level, including in individual support relationships. A support worker who genuinely listens, adapts to your preferences, and treats your goals as the starting point for their work is applying the same underlying values. You do not need to be involved in a formal policy process to experience - or to demand - the kind of respect that co-design represents.

How OpenWay can help

OpenWay is a free marketplace for NDIS participants, families and support coordinators to browse and compare disability service providers across Australia. You can filter by support type, location and other criteria, read provider profiles, and send enquiries directly - all without OpenWay handling your plan funds or acting as an intermediary in your service agreement.

If you are looking for providers whose values align with genuine participant involvement, browse NDIS providers on OpenWay and use the profile information as a starting point for your own questions. The enquiry process is designed to make it easy to ask exactly the kinds of questions raised in this article.

Support coordinators can also use OpenWay's coordinator tools to shortlist providers, share options with participants, and keep track of enquiries - all in one place.

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.