In response to growing concern about changes to the National Disability Insurance Scheme (NDIS), Every Australian Counts launched a survey to hear directly from the people most affected. The goal was to better understand how recent changes to the NDIS Act and support rules are impacting people with disability, their families, carers, and the professionals who support them.

The NDIS Legislation Changes: Community Feedback Survey ran recently and received a total of 548 responses. This included 244 people with disability, 250 family members and carers, 50 providers, 15 advocates, and 3 other respondents. Importantly, over one-third of responses (221) came from people living in regional, rural, or remote communities. Respondents also reflected a broad range of identities and experiences: 80 identified as LGBTQIA+, 44 as culturally and linguistically diverse, and 23 as First Nations people.

Supports Disappearing, Without Warning

More than half of all respondents—over 58%—reported that they had already gone without important supports as a result of the recent changes. This included assistive technology, equipment, and key services that people had previously relied on to participate in everyday life.

For people living in regional and remote areas, where service access is already limited and flexibility is paramount, these changes have hit even harder. Some families described driving losing access to vital support. 

Confusion, Misinformation, and lack of regard for risks associated with loss of support access

One of the strongest messages from the survey is that these changes have been poorly communicated and implemented. A striking 88% of respondents said they did not believe the government was properly assessing the risks these reforms pose to people with disability. Only 3% felt confident that risks were being appropriately considered.

Additionally, 75% of respondents said they had already experienced problems under the new ‘In and Out’ rules, which define what supports the NDIS will and will not fund. The most commonly reported issues included:

• Conflicting or unclear information from planners, LACs or NDIA staff — reported by 307 respondents;
• Loss of plan flexibility — 311 respondents;
• Confusion about what is allowed under Section 10 of the NDIS Act — 283 respondents;
  Previously funded supports being removed — 310 respondents;
• Direct risks to safety, health, or wellbeing due to support cuts — 280 respondents. 

Replacement Supports: Delayed, Confusing, and Hard to Access

The Section 10 reforms introduced the new concept of ‘replacement supports’. But many participants said the process of accessing these supports was unclear, slow, or simply didn’t work.

A total of 237 people said that the process for getting replacement supports was slow or confusing. Another 157 said their plan manager required a letter from a planner to approve the replacement support, but they couldn’t get the letter. These added hurdles left many people without the equipment or services they needed — sometimes for weeks or months.

Some therapists, support coordinators and plan managers reported needing to spend significant extra time helping participants understand or work around the new rules. In some cases, the extra effort wasn’t funded or even possible, particularly in thin markets or where a participant had no formal support team.

Emotional Toll of a System in Flux

Alongside the practical issues, the emotional toll of the changes was clearly felt. People described feeling anxious, exhausted, and distressed as they tried to navigate a system that seemed to shift without notice. Many said they felt punished or penalised for trying to access the supports they once relied on.

Some participants reported being afraid to ask questions, worried that they might be seen as doing the wrong thing or flagged for review. Others said they were afraid of losing their right to self-manage or plan-manage their funds if they misunderstood the new rules.

The mental load was especially high for parents of children with disability, who said they were juggling not only the needs of their child but also the uncertainty, financial burden, and paperwork caused by the reforms.

What Needs to Change

The survey findings highlight the urgent need for reform processes to be grounded in the real experiences of people with disability. People want to be included in the design and testing of new rules. They want simple, consistent information, and a chance to be heard when something goes wrong.

The most common calls to action included:

• Clearer, more consistent communication
• Better transparency about decisions
• Meaningful consultation with people with disability and their families
• Stronger advocacy and appeal pathways to challenge decisions.

Listening to the Community

The feedback from this survey paints a clear picture: people with disability and their families are deeply concerned about the direction of the NDIS reforms and the real-world consequences of poor implementation. Many have already lost vital supports. Others are unsure what will be available tomorrow.

Every Australian Counts will continue to raise these issues directly with decision-makers and amplify the voices of people with disability. We support reform — but only when it starts with the people it’s meant to support.

The DSS consultation on the NDIS Section 10 Support Lists closes on July 27th. Have your say here. NDIS Supports Rules – Resources | engage.dss.gov.au Every Australian Counts will be sending a detailed submission in response, and will include our survey results. 

HUGE THANKS TO EVERYONE WHO CONTRIBUTED TO OUR SURVEY!