With a Federal election just around the corner, now is a critical time to make sure the voices of people with disability are front and centre. Every Australian Counts recently ran a survey to find out what matters most to our community when it comes to the NDIS – and what you want political leaders to commit to in the lead-up to the election.

We’re sharing the top five priorities you raised – and why they matter to you.

As shown in the table below, when asked to choose your top three concerns, the two most commonly raised issue, – selected by 58% of respondents – were choice and control over providers, and calls for reform of the NDIS Support Lists. This highlights strong opposition to limiting support to only registered providers, and reflects the widespread frustration with rigid rules that reduce flexibility and limit individual decision-making.

Concerns about the fairness and potential harm of Support Needs Assessments were raised by 49% of respondents, while 46% said more time must be allowed for genuine co-design. Finally, 29% of people identified the importance of protecting the right not to be forced into group homes.

1. Choice and Control Over Providers, Including Unregistered Options

One of the two top-ranked issues raised by the community was the possibility of being forced to use only registered providers. People told us that having the freedom to choose our own providers – especially in rural and regional areas – is critical.

“Live out of town… there are NO providers here, NONE. Therefore I need a flexible choice of registered/unregistered providers. My Plan is Plan Managed. I have met excellent people who are not registered, they all have ABNs, they are fantastic, skilled, honest, practical workers who love to drive out of town. I need to make my own decisions about exactly who I employ.”

Many in the community reminded us that choice and control were meant to be at the core of the NDIS from the beginning.

“‘Choice and Control’ and providing a person-centred approach were the catch cries and the underlying platform in the early development of the NDIS. I have been a NDIS participant from day 1 and I have enjoyed choice and control regarding my providers—I want this to continue.”

“The big providers offer the worst service—and as seen from the Disability Royal Commission? Commit the most abuse. Despite their registered status. Registration is no guarantee of safety, let alone quality. Let us pick who suits us, who won’t abuse us. As the huge cost of registration drives the smaller, better organisations and sole traders out of a market that is already too ‘thin’. Without providing any benefit to anyone but the big providers.”

Community members shared their fears about losing trusted, high-quality unregistered supports.

“I have seen countless excellent non-registered providers, many of whom would likely leave the scheme should mandatory registration occur, which would be catastrophic for participants.”

“If forced to access only registered providers you are forcing participants to have no choices, particularly in regional and remote areas.”

 The survey highlighted that some of the most trusted, culturally safe, and responsive supports come from unregistered providers and often deliver better value for money. People are worried that mandatory registration will push these providers out of the market, leaving them with no viable alternatives.

As one participant said:

“There are NO registered providers where I live. If forced to use one, I’d be left with no supports.”

Another shared:

“Self-direction has meant I can afford more hours of care and maintain consistency. If that’s taken away, I’ll be worse off.”

The overwhelming message from the community is that registration should not be mandatory, and any safeguarding approach must uphold the key principles of choice and control that makes the NDIS work for people with disability. We must retain the right to choose who supports us.

2. Reform the Lists and Restore Choice and Control

Also ranked as the equal top priority, was the introduction of restrictive NDIS support lists.

There is strong concern across the disability community that the new NDIS support lists are too rigid and don’t reflect the diversity of people’s needs. Many people feel that these lists limit flexibility, remove personalisation, and risk locking participants into narrow definitions of “disability supports.”

Instead of promoting innovation and individualised solutions, participants are reporting that planners are using the lists to deny supports that were previously approved — even when they are working well and delivering great outcomes and value for money.

As one participant put it:

“The lists, with a few exceptions, are ridiculous. More money is wasted policing ‘correct’ spending of plan funds than could possibly be saved.”

Many people told us these lists reduce flexibility and don’t reflect the real needs of individuals.

“We need to be able to manage our supports and to have the NDIS do what it was originally designed to do, let people with a disability have autonomy and make our own choices. We have the right to be in control of our own existence as others do.”

Community members were clear: the lists are overly rigid, and they undermine the very purpose of the NDIS – to enable people with disability to be in control of our own lives..

“The lists, with a few exceptions, are ridiculous. More money is wasted policing ‘correct’ spending of plan funds than could possibly be saved by restrictive lists anyhow.”

“The newly introduced support lists for care delivery fail to account for the diverse and complex needs of people with disabilities. A generic, one-size-fits-all approach disregards the individualised nature of support and introduces an inherent bias in determining what is deemed ‘reasonable and necessary.’”

“Decisions based on a standardised tick-list methodology overlook the real-life requirements of those who rely on support. This approach reduces care to a rigid, managed model that prioritises administrative convenience over the well-being of individuals. Our loved ones do not fit into a predetermined system—they require flexible, tailored support that genuinely reflects their needs, routines, and goals for independence.”

People with disability want to be able to use our funding flexibly and responsibly, based on what actually works for us and what gives us the best value for money. The clear message is that people with disabilities want choice and control, not bureaucratic and complicated lists.

Our community is calling for the lists to be removed or at the very least, seriously revised so they respect people’s individual needs and restore the choice and control the NDIS was meant to deliver.

3. Addressing Concerns About Support Needs Assessments

Support Needs Assessments are due to be rolled out from September. These assessments are seen by many people with disability as a rebrand of Independent Assessments, and there are fears of retraumatisation and funding cuts.

You told us these assessments could have serious consequences.

“The proposed Support Needs Assessments are causing deep concern in our community and for good reason. As a parent of an Autistic child with a PDA profile and complex trauma history, I fear these assessments will reduce our access to the supports we’ve fought so hard for. They risk re-traumatising participants and families by relying on deficit-based frameworks that don’t reflect our reality. We need assessments that are co-designed with us, grounded in trust, and built to be fair, trauma-informed, and inclusive—not tools that leave us worse off. Work with us, not around us.”

People in the community also raised questions about whether assessors will truly understand disability and the need for trust-based relationships.

“I have grave concerns about the professional experience of the assessors who will be assigned to Support Needs Assessments, especially as many disabilities are heterogenous and do not present in the same way. This often requires time to develop a relationship with participants and ongoing assessments to understand how the person’s disability impacts them and how.”

You emphasised that existing medical and allied health professionals who already know the person are best placed to assess their needs – not unknown third parties.

“No independent assessment can ever be as thorough and complete as those made by medical and allied health professionals with an established relationship with a person.”

“No independent assessment can ever be as thorough and complete as those made by medical and allied health professionals with an established relationship with a person.”

People are especially concerned that Support Needs Assessments will override reports from trusted allied health professionals, apply a one-size-fits-all tool to complex and varied needs, and prioritise cost-cutting over a genuine understanding of disability.

There is also strong concern that not enough time has been allowed for meaningful co-design with the disability community. Participants fear that the process is being rushed and that critical feedback from people with lived experience is being overlooked.

One participant said:

“Stop making us go through more for things that are permanent and proven. I live in a body that won’t recover. Why do I need to relive my trauma just to stay supported?”

There is a clear call for the process to slow down and to be undertaken with dignity, respect, and deep engagement with those who will be most affected. The community is calling for assessments to be fair, personalised, and based on relationships with health-care providers – not one-off snapshots.

4. Allowing Time for Genuine Co-Design

The NDIS was built on the promise that people with disability would be at the centre of decision-making. But community members told us that promise still isn’t being fully realised.

“The NDIS was meant to be co-designed by and for people with disability. People with disability are at the centre—the NDIS is about people with disabilities living a quality of life and what people with disabilities want.”

“Policies must be co-designed by people with disabilities that affect our lives. People with disabilities want an NDIS system that is fair for all, no one falling through cracks and gaps, everyone has voice, choice, control and flexibility to choose what they use their NDIS funding for.”

The message from the community is clear: real co-design means being involved from the beginning, not just consulted at the end. It means decisions that reflect our experiences, ideas and expertise.

5. The Right Not to Be Forced into Group Homes

There was strong opposition across the community to the idea of forcing people to share support and in doing so, forcing us into group homes.

“The concept of returning to a group home model (a mini institution) as the only way to support accommodation puts back the disability movement 100 years and is shameful and totally opposes the UN rights of people with disability and contradicts the NDIS’s own mantra of choice and control.”

Many of you shared personal experiences of mistreatment and danger in group home settings – and their deep fear of being forced back into one.

“This is so cruel and is what people have spoken against for years. I have lived next door to a group home and had to report them numerous times because of the worker behaviour with no consequences for the workers.”

“I don’t want to ever be forced back into a group home or nursing home. I don’t want to be forced into a living situation I didn’t choose again.”

“Just because the home is in a suburban street doesn’t make it more individualised. We’re being pushed into mini-institutions.”

“My very first NDIS plan back in 2019, the planner greeted me by saying, ‘Of course you’ll be moved into a home because you live alone.’ I was gobsmacked. Then I cried.”

This forced grouping of people for convenience or cost-efficiency contradicts the principles of choice and control — and undermines Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities.

The community is calling for respect, safety, and freedom of choice in where we live and who we live with.

Your Message to Our Political Leaders

These results send a clear message to political leaders: the NDIS must return to its original promise of choice, control, and respect for the rights of people with disability. Uphold what made the NDIS transformative and what we advocated for – an NDIS that shifted the power from the bureaucracy, from providers and towards people with disability. Recognise and respect people with disability as experts in our own lives.

People with disability are saying loud and clear that recent changes have made the NDIS more complicated, more bureaucratic, and less responsive to our individual needs. We need to stop adding layers of red tape and give back choice and control to the people with disability. 

People with disability should be in charge of where and how we live, who we live with, and how we are supported. That is the NDIS we were promised and that is the NDIS that we will keep fighting for.

Every Australian Counts is committed to advocating for these priorities. Your stories and insights are vital in our continued efforts to make the NDIS meet the needs of our community. We’ll keep raising these issues with policymakers and keep you updated on our progress.

As part of this, we will take these priorities to the key political parties and seek clear commitments on how they will address the concerns of our community.

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