Lived Experience in Policy: Lessons from the NDIA’s Codesign Evaluation

In recent years, there has been a growing emphasis on codesign and incorporating the voices of people with lived experience into the development of policies that directly impact our lives. The NDIA has signalled a strong commitment to embedding lived experience at the heart of its policy development process. While intentions are clear, have these been translated effectively?

To help answer this question, the NDIA commissioned consultancy firm Clear Horizon to conduct an independent review of its New Engagement Framework (2022) across six projects during 2022 - 23. The purpose of the evaluation was to examine past codesign projects in detail, evaluating performance to inform future efforts.

These projects included the development of policies concerning:

• The Evaluation of Access and Planning Methods.
• The Home and Living Policy Framework.
• The Supported Decision-Making Policy.
• The Participant Safety Policy.
• The Culturally and Linguistically Diverse (CALD) Strategy.
• The First Nations Strategy.

Data was also collected through a literature review and personal interviews with staff and those who shared their lived experience.

Report findings

The Report found a degree of satisfaction across different projects amongst NDIS participants and staff. Those who worked on the Supported Decision-Making Policy and the Culturally and Linguistically Diverse (CALD) strategy regarded these experiences as leading examples of participant engagement. According to participant feedback, the development of these policies was largely positive due to the wide variety of perspectives considered, heard and understood. Participants commended staff for being collaborative, engaging and inclusive. This was achieved by allowing the voices of participants with diverse and sometimes opposing opinions time to give considered responses.

However, feedback on some of the other projects indicated that the NDIA's process for obtaining feedback felt rushed and was not a collaborative experience. These participants felt that engagement was a formal step in the policy process to demonstrate consultation had taken place, rather than an authentic opportunity for participants to add value through sharing their experiences.

These feelings led to a predictable conclusion: "…several participants expressed the view that attempts at inclusive engagement were poorly implemented or tokenistic."

There is no doubt that developing effective disability policy takes time and commitment, especially given the importance of centring such diverse contributions of people with disabilities.

Many of those interviewed also felt that the NDIA did not fully incorporate the views of people with intellectual or cognitive disabilities. For example, easy-read documentation was not available to participants during the group meetings, which inhibited some members ability to contribute fully, defeating the purpose of collective engagement across various disabilities and diagnoses.

Some participants also felt that once the formal engagement process was completed, they were not included in follow-up opportunities to analyse how their feedback was incorporated into the final policy.

The authors of the Report also interviewed staff, who indicated that they had difficulties distilling feedback that encompassed a wide variety of perspectives, experiences and motivations. Staff expressed frustration at the difficulty of summarising a collection of diverse and complex feedback to create a policy that represented a singular vision.

This tension is not surprising. Developing public policy through engagement and co-design naturally brings such challenges. Disability is a unique experience directly related to a particular individual and how they experience the world around them. One person’s needs and perspectives may be entirely different from another’s. Yet, government must take these diverse experiences and translate them into standardised approaches that can be applied across broad government policy. This creates a fundamental contradiction: trying to reflect individual experiences within frameworks designed for consistency and scalability. It’s a reminder of the ongoing challenge and paradox of creating public policy that works for everyone.

Despite these very real challenges, the Report makes recommendations for how the NDIA can more authentically incorporate lived experience and ensure it meaningfully informs and shapes policy development.

Recommendations

Based on the comprehensive but mixed feedback of the Clear Horizons evaluation, its authors made several recommendations, which can be grouped into three clear areas:

1. The structure within the NDIA's engagement team and the Agency as a whole should be simplified to make clear who is responsible for delivering outcomes, based on the work completed by the engagement team.
2. The definition and principles of engagement should be tightly defined so that all stakeholders, especially those with lived experience, have an articulated role within engagement processes.
3. The senior leadership team of the NDIA should play a more significant role in engagement to better respond to the outcomes generated through the engagement process.

Opportunities for change

There is currently no tangible link to how the engagement of participants fits into policy development. A review of the 2022 framework should outline how engagement informs policy development with precise measurement targets to determine the effectiveness of the engagement process upon the final policy outcome.

Everyone contributing to these processes should clearly understand their role. The Report found some gaps between the engagement piece and policy creation, where work delivered by the engagement team may not always be communicated to senior leaders when policy is being developed. Limited opportunities for direct feedback to policy makers may help explain why some participants felt overlooked or frustrated. To fix this, the people responsible for turning the engagement input into final policy should create a straightforward process to show how participant feedback has influenced the outcome.

Although developing an engagement strategy that satisfies all stakeholders presents many challenges, the Clear Horizon Report indicates how the NDIA can improve its current processes. Based on these recommendations, more work needs to be done within the Agency to help define how participant engagement fits into overall policy development, so that participants and the Agency can measure the tangible impact the engagement process has made on policy. This will ensure that engagement with participants is not a process separated from policy development itself, and that the views of those with lived experience remain at the heart of the NDIS.

Find the Clear Horizons Report on the NDIA’s website.