What Our Members Can Teach Us About the State of the NDIS
[Image Description: Three young ladies sit next to each other smiling and laughing.]
We recently wrapped up our annual community survey, and while a lot of what we heard about the NDIS was pretty much what we expected (spoiler alert - it’s not a fun experience), we also discovered some real gems from our community!
Between February and March 2025, our NDIS participant and carer members shared their experiences, challenges, and dreams with us. Their insights are priceless and really bring to life what the NDIS is like right now.
For those of you working in the NDIS industry, these insights are a call to action. They show the real struggles that participants and carers face every day and remind us all how important it is to work together to make the system better.
The complexity of NDIS rules and funding
One thing that stood out is how confusing NDIS rules and funding can be. Many NDIS participants are left scratching their heads over policies and how to make the most of their funding. One member shared, “I find a lot of providers assume you have heaps of funding when in fact it’s limited.” Another mentioned, “Navigating the rules feels like trying to read a foreign language.”
Over 60% of respondents said they struggle communicating with the NDIS, and they find it hard to get clear answers from anyone.
This confusion shows that the NDIS needs to do a better job of explaining things. We need clearer, simpler information to understand the system and use funding effectively. When the rules are too complex, it can lead to mismanagement of funds and missed opportunities for support, which ultimately affects quality of life.
"The bureaucracy and red tape make everything incredibly challenging for participants and their carers. It shouldn't be this way. Life is hard enough!"
The challenge of finding service providers
Finding reliable service providers, especially in regional areas, is a big challenge. One regional member mentioned, “Finding a reliable provider in my area feels like searching for a needle in a haystack.” Another shared, “I’ve been on waiting lists for months with no end in sight.”
There’s a big shortage of service providers in regional areas. This makes it hard for people to get the help they need. We need more providers in these areas to make sure everyone can access services. The shortage not only limits access to essential services but also increases the burden on participants who have to wait longer or travel further to receive support.
The emotional toll of reviews and reassessments
The stress and emotional strain caused by NDIS reviews and reassessments were recurring themes in our members’ responses, with over 40% of respondents saying they have trouble with the process. Often, they’re asked to provide a lot of paperwork without clear guidance. One participant described it as, “an emotional roller coaster every time my plan is up for review.” Another said, “The process is so slow and arbitrary, it feels like they don’t care.”
The reassessment process is really stressful for participants, and we need a more caring and efficient approach to reduce this. The emotional toll is profound, and participants feel a lack of empathy and understanding from the system, leading to increased anxiety and stress.
"The constant reviews are draining. It feels like I'm always having to prove my needs over and over again."
The power of peer support
Despite these challenges, our survey also revealed the incredible power of peer support. Our members value Kinora not just as a place to find providers, but as a trusted space for learning, asking questions, and connecting with others who understand their journey. One member shared, “Kinora has been a lifeline for me. The community support is incredible.”
Not far behind accessing NDIS tools, resources, and education, the main reason our members joined the Kinora community was to connect with other people in a similar situation as themselves. They understand that peer support is incredibly valuable.
Being able to connect with others who understand what you’re going through makes a huge difference. It helps you feel less alone and gives you practical tips. This sense of community not only eases those feelings of isolation but also boosts your confidence to navigate the NDIS more smoothly.
Success stories and aspirations
Around 30% of members said the NDIS has greatly improved their quality of life, and the stories of success and aspirations shared with us are truly inspiring. One member shared, “I’ve achieved more independence than I ever thought possible.”
When the NDIS works well, it can really change lives. The success stories shared with us really show how important it is to have a supportive network and the right resources. They highlight just how much the NDIS can improve lives when it’s working well.
"NDIS has been amazing for my daughter. She has come so far."
Moving forward together
The survey results from our community give us a mixed bag when it comes to the NDIS. There are definitely many areas that need fixing (and I do mean many…), but there are also some great success stories that show how much potential the scheme has. By tackling these challenges, we can help the NDIS better support Australians with disabilities.
So, what’s the way forward? Looking at these insights, here’s what needs to happen to to improve the NDIS experience:
We need clearer, more user-friendly guides and FAQs to help everyone understand NDIS rules and funding better.
Especially in regional areas, we need updated directories of service providers and possibly incentives to attract more providers to these regions.
Simplifying the review process and providing more support services like advocates or coordinators can help reduce the stress associated with reviews and reassessments.
Expanding peer networks and mentorship programs can provide invaluable support and guidance to new and existing participants.
Improving training for NDIS staff can help those who are making critical decisions better understand partcipant’s needs.
The insights from our survey are more than just data - they’re lived experiences. We’re committed to using this feedback to advocate for improvements in the NDIS and to make Kinora an even better place for support and connection. Participant voices are shaping the future of the NDIS, and together, we can work towards a scheme that truly meets the needs of those it’s there to support.
A huge thank you to everyone who shared their experiences. Let’s continue to learn from each other and navigate the NDIS with confidence, clarity, and community. 🧡
Join the conversation
We’d love to hear more from you! Share your stories, tips, and questions in the Kinora community. Let’s support each other and make the NDIS journey a little easier for everyone.
