Appendix C - Genuine engagement to inform our Review

We committed to doing this Review differently than other government reviews. We committed to consulting widely and engaging directly with as many people as possible - people with disability and their families, carers, representative organisations, providers and workers.

We provided lots of different ways for people to have their say and share their feedback and ideas for change. We particularly wanted to make sure we created space for people who don’t usually participant in government reviews and inquiries.

In addition to making sure people had lots of chances to have their say we also committed to keeping everyone up to date with our work. Again we tried lots of different ways to keep people updated and to reach different audiences. Unusually for a government review, we also committed to sharing our thinking about what needed to change and how even before the final report was released.

We did all of these things because we know just how important the NDIS is to the disability community.

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Our approach to engagement

We took a staged approach to engagement.

Stage One focused on listening to people with disability, their families and the organisations that support them about their biggest concerns with the scheme. We knew that many of the problems in the scheme were well known and had been covered by many other reviews and inquiries. So to make sure people did not have to tell their story all over again we also looked at the reports of all of those inquiries as part of this first stage.

Stage Two began in May 2023. We called this the “designing solutions” stage. In June we released our What We Have Heard Report, which summarised everything we had heard in the first stage. Based on what we had heard we identified the biggest challenges facing the scheme. We then asked people for their ideas about how to fix them.

Stage Three began at the end of August. We started sharing our ideas for change and asking people for feedback.

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Different ways to engage

Throughout all the stages we wanted to provide lots of different ways for people to share their experience with the NDIS and all their ideas about how to improve how it works.

Some of our activities included:

• An online submission process
• A survey
• Organising large roundtables
• Organising small meetings - both in person and online
• Holding individual sessions – both in person and online
• Holding webinars and “town hall” style meetings
• Partnering with organisations to hold workshops, meetings and focus groups
• Partnering with Disability Representative Organisations
• Meeting regularly with a small group of people with disability and their families to focus on changes to the access and planning process.

To make sure we heard from as many people as possible, we welcomed submissions in different formats, including written, verbal by phone, video, Auslan, artwork and poetry.

In the end we received more than 3,850 submissions. We are very incredibly grateful to everyone who made the effort to help us understand their experiences, their concerns and ideas for change. All helped inform and guide our work.

We also participated at workshops, conferences, meetings and events led by the disability community. We listened to ideas on how to improve and enrich the lives and outcomes of people with cognitive impairment, people with psychosocial conditions, autistic people, children and young people with disability or developmental concerns and their families, people with complex communication and support needs, people with neuro-muscular and physical disabilities, people with vision impairment, hearing loss or who are Deaf.

We visited every state and territory and ran forums and workshops involving a wide range of stakeholders. This included a visit to the Northern Territory, where we were welcomed into the First Nations communities in the Tennant Creek and Ali Curung Barkly regions. We have also learnt how people from culturally and linguistically diverse communities have had to deal with the additional barriers caused by language.

We listened to early childhood advisors with deep experience and commitment to working with children and families. We participated in mental health workshops, hearing from consumers and carers about their experiences and ways they could be better supported to manage episodic or fluctuating conditions.

We are incredibly grateful to the thousands of people we have met over the past 12 months. You have been so generous in sharing your experiences, feedback and ideas for change. It has had a profound impact on our thinking and our work.

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Snapshot of listening to the community

We partnered with a number of community organisations who organised events and activities for their communities. We hoped people would feel comfortable and safe to share their experiences if sessions were run by organisations that people trusted. 

We partnered with Every Australian Counts to hold 10 virtual workshops, inviting people living in rural, regional and metropolitan areas in every state and territory to come along and talk about the issues that mattered most to them.

We heard that lack of services and support stopped people from taking part in their local communities. We heard the fear of that many older parents feel wondering what will happen to their adult children when they are no longer able to care for them. Insecure housing, uncertain funding and a lack of connection to community leave parents worried about what will happen in the future.

We listened to simple, powerful ideas about how to create community peer networks to work alongside disability supports and ordinary government services, so that people were genuinely part of their local communities, not segregated from them.

To hear directly from autistic people, we asked Autism Queensland (AQ) as part of the national Autism Alliance to consult with autistic people and their families across Australia.

AQ and the Autism Alliance coordinated and facilitated engagement with autistic people, their families and communities through surveys, individual and group engagements, and creative submission. This gave us a deeper understanding of their experiences and interactions with the NDIS, to help inform our ideas for change.

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Participatory engagement on two core ideas

For most of this year we have worked in close collaboration with a small group of people with lived experience of disability to test and improve some of our ideas. We called this stream of our work “participatory engagement”.

We brought together people with disability, people with operational and service delivery expertise, and sector representatives to help us test two ideas for reforming how participants interact with the NDIS. We tested views on the desirability, fairness, feasibility and sustainability of the ideas, and gathered extensive feedback on important principles and considerations for their implementation.

The ideas we tested were:

• Idea 1: A simpler way to gather information about people and their needs.
  Assessment of need, separating budget setting and planning.
• Idea 2: A better way for participants and families to get the support they need.
  Navigation and community capacity building.

These parts of the design of the NDIS have a significant impact on all people with disability, their families and the boarder disability community. The process for testing these ideas aimed to understand ‘what’ people with disability and the sector wanted and ‘how’ it might be possible to deliver it.

The participatory engagement process was conducted by the NDIS Review Secretariat over five months and included:

The aim of this process was to test our assumptions about key reforms to the participant experience, and adapt those ideas based on feedback. Although this process only involved a small sample of the diverse disability community, repeat sessions with the same groups enabled insights from the Review’s broader engagement to be discussed and tested. The ideas then evolved throughout the process.

The Co-Group played an important role in allowing us to go deeper and tackle difficult questions on how to balance competing interests and trade-offs. The Co-Group brought deep sector and lived experience to support and inform the evolution of our ideas.

We acknowledge that this process was not true co-design. The Review’s timelines and the significant work that had already occurred through previous reviews meant that we thought deep testing of key ideas was the best use of the limited time we had available. We firmly believe that this must be the first stage of design with, and accountability to, people with disability and the sector more broadly.

We extend our sincere thanks and gratitude to all who participated in this process, for the time they dedicated and their generosity in sharing their experience and ideas. The Co-Group’s feedback to the Review will be published on the NDIS Review website later this year.

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Partnering with Disability Representative Organisations

It was important to us to engage with people in a trauma informed and supportive way. To do this, we partnered with a number of national Disability Representative Organisations (DROs) who coordinated targeted engagement and open consultations with the community on behalf of the Review.

We know that these organisations who represent millions of Australians with disability are trusted by their communities. Partnering with DROs enabled us to reach many more people, who generously shared their lived experience, insights and ideas for improvement in safe, trusted spaces. Partnering in this way also gave us the opportunity to hear the experiences of people with disability who are not often heard.

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Interviews and focus group sessions with sector and technical experts

We conducted interviews and small focus group sessions with sector experts and NDIS frontline staff who work with participants and their families as Planners and Partners in the Community. We wanted to better understand, from people with lived experience and direct sector expertise, what is driving the current participant experience and what could be improved.

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Engagement with state and territory governments

In addition to our extensive engagement with the disability community, we also met regularly with officials from state and territory governments.

State and Territory Disability Reform Ministers were kept informed of the Review’s progress through regular updates to the Disability Reform Ministerial Council. This included reporting back what we had heard and what we thought it meant for the NDIS and broader system.

The Review Secretariat also set up an NDIS Review Senior Advisory Group made up of senior disability officials from each state and territory and the Australian Government. This group was engaged regularly throughout the Review on key ideas and impacts on state and territories, through a combination of meetings and full-day workshops.

We are grateful to the states and territories for generously offering their expertise and time to help the Review.

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