Beyond the Participant
The voices of our community on the proposed NDIS reforms
Author: Dr Belinda Young
In May 2026, the NDIS Amendment (Securing the NDIS for Future Generations) Bill, was introduced to Parliament with the objective of introducing sweeping reforms to manage the growing costs and improve the efficacy of the scheme. Following over 4000 public submissions, an eight-week extension was given to enable the Senate Inquiry into the Bill additional time to review the evidence before handing down their final report in mid August.
This article has been written by Mums of the Hills Inc, a charity in Melbourne’s Dandenong Ranges in response to the concerns raised by local families. Mums of the Hills Inc. (from here on referred to as MOTHs) is dedicated to improving the mental health and wellbeing of mothers and families by reducing the factors that cause isolation. Isolation is rarely caused by one event, but develops when financial pressures, caring responsibilities, limited support, poor health, inaccessible services and social disconnection accumulate over time. While these challenges affect many families, they are often magnified for those caring for a child or family member with disability.
MOTHs requested feedback from parents who either care for an NDIS participant or are NDIS participants themselves, to understand the impact that the proposed reforms may have on their lives. For communities such as those in Melbourne’s Dandenong Ranges, the need for reform has long been known, yet the proposed reforms have sparked growing confusion, uncertainty and anxiety as to how the reforms will impact families. Their responses echo the concerns of disability advocacy groups and strengthen the argument for the impact on carers to be given greater consideration.
Public policy has an important role to play in either reducing or reinforcing these pressures on families. Disability policy, in particular, extends well beyond the provision of services to people with disability, influencing parents' ability to remain in employment, maintain social connections, participate in community life and protect their own physical and mental wellbeing.
The proposed reforms to the National Disability Insurance scheme (NDIS) therefore represent more than changes to disability funding. They raise important questions about how Australian communities support families, and whether policy decisions reduce, or inadvertently increase, the conditions that contribute to isolation.
Much of the public discussion has focused on whether these reforms will reduce supports, however, the voices from our community suggest a broader question deserves equal attention: What happens to families when disability supports become more difficult to access?
Background
The National Disability Insurance scheme (NDIS) is one of Australia's most significant social policy reforms. Introduced in 2013, it was designed to replace a fragmented disability support system with one based on individualised funding, enabling people with permanent and significant disability to exercise greater choice and control over the supports they need to participate in everyday life.
Today, the NDIS provides funding to approximately 660,000 Australians under the age of 65 with permanent and significant disability (NDIS, 2024a). For many participants, the scheme has transformed opportunities for education, employment, independent living and community participation. For families, particularly those raising children with disability, it has also provided access to therapies, support workers, assistive technology and home modifications that would otherwise be financially unattainable.
However, as the scheme has grown, so too have concerns about its long-term sustainability. Rising participant numbers, increasing expenditure, inconsistent decision-making, provider quality and organised fraud have prompted the Australian Government to introduce a significant package of legislative reforms intended to secure the future of the NDIS.
The Australian Government has been clear that reform is necessary to ensure the NDIS remains sustainable for future generations. Alongside rapid growth in participant numbers, investigations have identified organised fraud, inappropriate claiming and provider misconduct. The establishment of the NDIA Fraud Fusion Taskforce has resulted in numerous successful prosecutions. The Government has invested more than $1 billion in fraud detection, compliance and payment integrity measures, arguing that every dollar lost to fraud is a dollar unavailable to Australians with genuine disability-related needs. These efforts have broad support; indeed, many respondents to the MOTHs survey acknowledged the importance of protecting the scheme from fraud.
The Australian Government argues that strengthening compliance and reducing fraud is essential to maintaining public confidence in the scheme and ensuring funding is directed to participants with genuine disability-related needs (NDIA, 2026; Commonwealth of Australia, 2023). The establishment of the NDIA Fraud Fusion Taskforce has resulted in numerous successful prosecutions. Efforts to improve the integrity of the scheme are generally distinct from broader debates about eligibility and participant supports. While there is widespread agreement that fraudulent activity should be identified and prosecuted, there is less consensus about whether the proposed legislative reforms represent the most effective mechanism for achieving this objective. The debate therefore is not whether reform should occur, but how reform can strengthen the scheme without creating unintended consequences for people with disability and their families.
One reason these discussions have become increasingly important is the changing profile of disability in Australia. For example, diagnoses of autism have increased substantially over the past two decades. In 2022, the ABS estimated Australia’s autistic population to be approximately 290,900, a 41.8% increase from the 2018 estimate (ABS, 2022). Autism is most commonly diagnosed among children aged 5 to 14 years (AIHW, 2017) however, the estimated increase is not due to a simple increase in prevalence. Researchers suggest this growth reflects improved awareness and earlier identification (Rice & Lee, 2017). Changes to the diagnostic criteria introduced in 2012 has also enabled previously undiagnosed individuals, notably women, to receive formal diagnoses (Wright, 2017). As more families access disability supports, an important body of research has emerged examining not only participant outcomes but also the wellbeing of those who provide care.
Disability support is also family policy
Although the NDIS funds supports for participants rather than family members, disability researchers increasingly argue that participant outcomes cannot be separated from family wellbeing. Parents, most often mothers, frequently become care coordinators, advocates, appointment managers, administrators and unpaid support workers. Alongside employment and caring for other children, many spend countless hours organising therapies, completing paperwork, attending planning meetings and navigating complex government systems. It leaves little opportunity to maintain friendships or participate in community activities. Over time, these cumulative demands can contribute to social isolation, one of the strongest predictors of poorer mental health and wellbeing.
Research consistently demonstrates this. Wang et al. (2013) found that mothers of Autistic children experienced significantly higher parenting stress, with increasing support needs directly related to anxiety and depression. Kütük et al. (2021) similarly reported substantially elevated rates of burnout and depression among parents of autistic children, identifying both higher autism support needs and and poorer mental health in one partner were associated with increased psychological distress in the other, highlighting the interconnected nature of family wellbeing.
These impacts extend beyond individual wellbeing. Sim et al. (2016) conducted a systematic review of the literature examining relationship satisfaction among couples raising a child with autism spectrum disorder. The review found that parental stress, psychological wellbeing and child behavioural characteristics were consistently associated with relationship satisfaction, while social support emerged as an important protective factor. In a subsequent study of 543 families, Sim et al. (2018) reported that 44% of caregivers experienced severe family stress, highlighting the substantial psychological burden associated with caring for an Autistic child. These findings are particularly relevant because opportunities for social connection are recognised as protective factors for mental health. When caring responsibilities reduce participation in community life, isolation itself can become an additional family burden.
Collectively, these studies suggest disability support is not solely about meeting the needs of the participant. It also influences family resilience, parental mental health, workforce participation and long-term community wellbeing.
A family-centred approach
Recent Australian research by Gerhard and Grant (2026) extends this understanding by examining carers' experiences of navigating the NDIS itself. Their thematic analysis found that while the scheme has created significant opportunities for Autistic children, many carers continue to experience substantial administrative burden, inconsistent decision-making and a system that remains largely participant-focused rather than family-centred.
Parents described repeatedly having to demonstrate their child's deficits in order to access support, navigating complex administrative processes and feeling that their own wellbeing was largely invisible within planning decisions.
Gerhard and Grant argue that this lack of a family-centred approach may ultimately undermine the objectives of the NDIS itself. While carers are not considered NDIS participants, the scheme's own Operational Guidelines acknowledge that carer workload, ageing and declining health can compromise caring capacity and recognise the importance of including reasonable and necessary supports that help sustain informal care arrangements (NDIS, 2024b). Carers Australia (2018) similarly argues that supporting carers is fundamental to maintaining sustainable disability support.
These findings are particularly relevant when considering the proposed reforms. Women With Disabilities Australia (WWDA) has argued that changes which reduce disability supports may not reduce care needs. Instead, they risk transferring those responsibilities back onto unpaid carers, predominantly women, with implications for workforce participation, financial security, mental health and gender equality. Furthermore, Gerhard and Grant (2026) argued that when systems fail to recognise the wellbeing of carers, they risk undermining the sustainability of informal care itself. From a community wellbeing perspective, this extends beyond disability policy. Increased caring responsibilities can reduce parents' opportunities for employment, volunteering, recreation and community participation, all of which contribute to social connectedness and resilience.
What the MOTHs community told us
To better understand how these proposed reforms may affect local families in the Dandenong Ranges, MOTHs invited community members with lived experience of the NDIS to share their perspectives ahead of a planned community forum. Participant’s names have been changed to protect identity.
The survey attracted responses from participants, parents, carers and disability professionals (N=14). Most respondents (92%) identified as parents or carers of an NDIS participant. More than one-third (39%) also worked in disability-related services, while almost one-quarter were themselves NDIS participants (23%) or were currently navigating the application process (23%). Many occupied multiple roles simultaneously, highlighting the interconnected nature of disability, caring and professional support. Importantly, respondents generally supported efforts to improve the integrity of the scheme. However, many distinguished between targeting fraud and reducing supports for people with permanent disability.
Respondents rarely described disability supports simply as funding for therapies or services. Instead, they described the role these supports played in enabling families to remain connected to everyday life. Supports enabled parents to continue working, siblings to participate in activities, relationships to remain stable and carers to maintain their own health. Conversely, respondents anticipated that reducing supports would increase caring responsibilities, reduce workforce participation and limit opportunities to engage socially in the long-term - conditions that are well recognised contributors to isolation and poorer mental health. As one parent explained, respondents were frustrated that the schemes objectives were being undermined by short term agendas:
"These kids accessing the NDIS haven't even been able to grow up and demonstrate that the NDIS works and saves money in the long run." (Claire)
Others, including ‘Sue’, questioned whether the proposed reforms reflected a fundamental misunderstanding of autism as a lifelong neurodevelopmental condition, expressing concern that reductions in funding implied an expectation that support needs diminish simply because a person grows older:
"Funding being cut for children with Autism. This is a permanent, lifelong disability." (Sue)
These concerns align closely with research demonstrating that early intervention improves developmental outcomes while also reducing stress for families (Estes et al., 2019). Perhaps the most striking finding, however, was that respondents rarely discussed disability supports solely in terms of the participant, instead, describing the impact on entire families.
More than half anticipated increased carer burden should supports be reduced and nearly half expected significant declines in mental health. Over one-third anticipated serious financial hardship.One respondent summarised the relationship between disability supports and family wellbeing simply stating, "Parent mental health and burn out. Child safety due to parent burn out." (Samantha), while another stated, "If more is put back on us at breaking point, everything collapses." (Marlene)
These responses closely mirror the findings of Gerhard and Grant (2026), who argue that disability policy cannot be separated from family wellbeing. They also reinforce WWDA's concern that reducing formal supports may shift care responsibilities back onto mothers, potentially affecting employment, relationships and long-term health.
Financial pressures were another recurring theme.Families described already carrying substantial out-of-pocket costs while balancing employment, caring responsibilities and therapy appointments. One respondent reported spending more than $1,200 in a single week on medications for three chronically ill family members, while another simply state, "Financially we'd be screwed." (Sue)
Respondents frequently argued that reducing disability supports would not eliminate need, but instead transfer costs to individuals, families, hospitals, Centrelink and state-funded health services. Mental health concerns were frequently comorbid to the reduction of support, with one participant explaining that "What I have in place now allows me to function." (Catherine). For one parent of an NDIS participant, the concerns over mental health were extreme:
"Without those supports I am afraid my daughter may attempt suicide again." (Melissa)
These accounts illustrate how disability supports often function as preventative mental health interventions, helping families maintain stability before a crisis occurs.
The survey also highlighted frustration with the current system itself, with several respondents describing lengthy application processes, inconsistent planning decisions and difficulties accessing support even before the proposed reforms, as ‘Alice’ reflected, "Our paediatrician told us to 'get NDIS funding' and made it seem easy, but it has been so confusing and difficult." (Alice)
Finally, as ‘Catherine’ stressed, there were repeated called for genuine consultation with people living with disability and their families, as one participant stated:
"The people directly affected by these reforms need to be the ones making these decisions." (Catherine)
Taken together, these findings suggest that respondents viewed the NDIS as far more than a funding mechanism for disability supports. Rather, they described it as part of a broader network of supports that enables families to remain connected to work, education, community life and one another. When these supports function well, they help protect not only the wellbeing of the participant but also the resilience of parents, siblings and carers. Conversely, when families perceive those supports to be uncertain or at risk, the consequences extend beyond disability alone, increasing financial pressure, emotional strain and the likelihood of social isolation.
This distinction is important. Throughout the survey, respondents consistently framed disability support as an investment in family wellbeing rather than an individual entitlement. Their concerns were not solely about the loss of services, but about the cumulative effects that reduced support may have on mental health, caring capacity and opportunities to participate in everyday community life. These findings reinforce a growing body of research that recognises disability policy as intrinsically linked to broader social outcomes, including family resilience, community participation and mental wellbeing (Gerhard & Grant, 2026; Sim et al., 2016; Yates et al., 2022).
Summary
The proposed reforms raise complex policy questions that extend well beyond disability funding: How can governments reduce fraud while maintaining trust? How can the scheme remain financially sustainable while preserving individualised support? How can disability policy recognise that participants do not exist in isolation, but within families whose wellbeing directly influences participant outcomes? The growing body of Australian research suggests these questions cannot be answered by focusing solely on the participant. Supporting people with disability also means supporting the families who care for them.
Our survey reinforces this conclusion.As governments consider the future of the NDIS, one message emerged consistently from both the research literature and our community: the sustainability of the scheme should not be measured only by financial expenditure. It should also be measured by its capacity to sustain the wellbeing, resilience and participation of the families whose unpaid care remains fundamental to its success.
For MOTHs, this conversation extends beyond disability funding. When those supports are weakened, the consequences are not experienced only by the person with disability, but are felt by parents and the wider community. These results do not diminish the importance of ensuring the NDIS remains financially sustainable or protecting the Scheme from fraud. Instead, it highlights the need for reforms to be evaluated against a broader measure of success. Alongside economic sustainability, policymakers should consider whether proposed changes strengthen or weaken the social connections that enable families to thrive. If isolation is recognised as a significant determinant of mental health, then disability policy is also community wellbeing policy. Decisions about how Australia supports people with disability inevitably shape the resilience of families, the strength of communities and the opportunities people have to participate in the social fabric of everyday life.
References
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Carers Australia. (2018). NDIS reasonable and necessary supports: The case for respite. https://www.carersaustralia.com.au/wp-content/uploads/2020/06/carers-australia-positon-paper-ndis-reasonable-and-necessary-supports-the-case-for-respite-1.pdf
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