By Hayley Stone, Executive Director, Policy and Government Relations

The National Disability Insurance Scheme has changed the lives of hundreds of thousands of Australians. For many people who are d/Deaf, Deafblind, living with hearing loss, and or living with hearing and balance conditions, it has provided access to supports that enable greater independence, participation and choice.

It is also clear that the NDIS faces significant challenges. As participant numbers continue to grow, governments are grappling with how to ensure the Scheme remains sustainable for future generations. These are important conversations, and Deafness Forum Australia recognises the need for reform.

The question is not whether change should occur. The question is how change is implemented, who is affected, and whether people with disability remain at the centre of decision-making throughout the process.

Recently, Deafness Forum Australia provided a submission to the Australian Government on the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. In preparing our response, we consulted with people with lived experience, families, carers and stakeholders from across the hearing health sector.

One message was clear. People want confidence that reforms designed to strengthen the future of the NDIS will not leave them without the supports they rely on today.

A System That Works in Practice, Not Just on Paper

Many of the proposed changes seek to address issues identified through the Independent Review of the NDIS. However, we remain concerned that some reforms may be introduced before the broader network of supports outside the NDIS is fully established.

For people with disability and their families, this distinction matters.

A support that exists on paper is not always available in practice. Long waitlists, workforce shortages, funding limitations and geographic barriers can all affect whether a person can actually access the assistance they need. For people with hearing loss, these challenges can be particularly complex.

One Size Does Not Fit All

Communication is rarely a one-size-fits-all experience. A person may communicate effectively in one setting and face significant barriers in another. Someone who relies on lipreading may communicate well in a quiet environment but struggle when people are wearing face masks or when background noise is high. A hearing aid or cochlear implant may provide significant benefit in some situations while offering more limited support in others. These realities are difficult to capture through broad assessments or rigid eligibility criteria. Our concern is that reforms designed to simplify processes may inadvertently overlook the lived experiences of people whose support needs are highly dependent on context, environment and individual circumstances.

We are also concerned about proposals that could make it more difficult for participants to access reassessments, challenge decisions or maintain continuity of support during periods of change. For families, carers and participants, uncertainty can be just as challenging as the disability itself. Parents of children with hearing loss already navigate complex decisions about communication, education, therapy and technology. Adults with hearing loss often spend years advocating for accessible communication and appropriate support in workplaces, health settings and community life. Policy reform should reduce these burdens, not add to them.

Protecting Choice and Recognising Complexity

One issue that emerged repeatedly during consultation was the importance of choice. People with hearing loss and deafness often have a range of communication preferences and support pathways available to them. Some use Auslan. Some use hearing technology. Many use a combination of approaches that evolve throughout their lives. There is no single pathway that works for everyone.

It is important that future reforms continue to respect this diversity and do not unintentionally create pressure towards interventions or support models at the expense of individual choice and control.

The experiences of people with Deafblindness also highlight the complexity of disability support systems. Disabilities do not always fit neatly into categories. Many people live with multiple conditions that interact with one another in ways that cannot be easily separated. Good policy must recognise this complexity.

Building Better Reform Together

At Deafness Forum Australia, we believe sustainable reform and participant wellbeing should never be competing objectives. Australia can build an NDIS that is both financially sustainable and responsive to the needs of people with disability. Achieving that balance requires meaningful consultation, careful implementation and a commitment to ensuring that no one is left behind during the reform process. Most importantly, it requires governments to listen.

That is why we are continuing to gather feedback from people who are d/Deaf, Deafblind, hard of hearing, living with hearing conditions, and from their families and carers. Your experiences matter. They help us understand where barriers exist, identify emerging concerns and ensure that the voices of people with lived experience remain at the centre of national conversations about disability policy.

Strengthening Our Voice Through Partnership

It’s also why we have been working more closely than ever before with other sensory disability representative organisations, like Deaf Australia, Deafblind Australia, and Blind Citizens Australia to strengthen our advocacy. While the interests of people with sensory disability won’t always be the same, there are many cross overs.

I recently presented at Deaf Australia’s Online Summit, talking about Deafness Forum’s key priorities over the next 12 months, and there were many nods and comments from members of the Deaf community echoing the concerns we’ve heard from our members. As peak organisations, we know we can draw strength by working together and collectively pressuring the government to act, and we hope to do this, not only regarding the NDIS reforms, but across a broad range of equity priorities over the next few months.

As reforms to the NDIS continue to develop, Deafness Forum Australia will continue advocating for a system that recognises the realities of living with hearing loss and supports every person’s right to participate fully in Australian society.