Concerns about assessment reliance and narrowing of disability supports (Family or carer experience) | External submission

Submission 2834

Submission to the Senate Community Affairs Legislation Committee Inquiry into the

National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Submitted by: Anonymous Parent and Carer

Date: 1 June 2026

I am the mother of two neurodivergent daughters. My youngest daughter was recently diagnosed with Autism Level 2 and Severe ADHD following a comprehensive multidisciplinary assessment. My eldest daughter is fifteen years old and approaching adulthood. Like many families raising disabled children, our lives revolve around appointments, school meetings, assessments, reports, therapy recommendations, advocacy and the constant work of trying to ensure our children have access to the same opportunities that other children often take for granted. I am writing this submission because I am deeply concerned about the proposed legislative changes and the very real impact they will have on children like my daughters and the families who support them.

One of the things that has troubled me most while reading these proposals is how disconnected they feel from the reality of disability. Disability is not simple. It is not static. It is not something that can be accurately understood through a brief assessment, a functional score or a snapshot of a person’s life. My youngest daughter recently underwent a comprehensive assessment process involving multiple clinicians, interviews, observations, developmental history, collateral information and a range of standardised assessment tools. Even with such a thorough process, there were significant differences in how her disability presented across environments. Her teacher did not identify ADHD at diagnostic levels, yet she ultimately met criteria for Severe ADHD through a comprehensive assessment process. This is not unusual. Many neurodivergent children mask their difficulties. Many work incredibly hard to appear as though they are coping. Many rely heavily on supports and accommodations that make their difficulties less visible. Had decisions about my daughter’s support needs been based solely on a brief assessment or a functional capacity measure, significant aspects of her disability may have been missed entirely.

This is why I am deeply concerned about any proposal that increases reliance on functional assessments, standardised measures or simplified approaches to determining support needs. Disability is complex because people are complex. Clinical judgement matters. Developmental history matters. The observations of parents, carers, teachers and professionals matter. Understanding how a person functions across different environments and over time matters. No assessment conducted over a few hours can replace years of lived experience. No standardised measure can fully capture the cumulative impact of sensory overload, social difficulties, executive functioning challenges, emotional regulation difficulties, anxiety, masking and fluctuating capacity. My fear is that these proposals risk reducing complex human experiences to numbers, scores and administrative processes that fail to capture the reality of disability.

Submission 2834

I am also concerned by the apparent shift towards narrower interpretations of what disability supports should include. Much of the discussion surrounding community participation appears to frame these supports as optional extras rather than recognising their critical role in building independence, wellbeing and inclusion. For my daughters, community participation is not recreation. It is where they learn social skills, build confidence, develop friendships, practise independence and learn how to navigate a world that often feels confusing and overwhelming. These opportunities are not luxuries. They are essential parts of development. Children do not become independent adults simply because they grow older. Independence develops through experience, practice and support. Removing access to participation opportunities does not increase independence. It limits opportunities to develop it.

The same concerns apply to capacity-building supports. My daughters are not going to stop being neurodivergent. The challenges they experience with executive functioning, emotional regulation, social communication, sensory processing and daily living skills will not disappear simply because they get older. The purpose of capacity-building supports is to help people develop the skills they need to participate more independently in everyday life. Reducing access to those supports appears fundamentally inconsistent with the stated goal of increasing independence and reducing long-term support needs. Every skill learned today has the potential to reduce support needs tomorrow. Every opportunity to develop confidence and competence improves long-term outcomes. It is difficult to understand the logic of reducing investment in supports specifically designed to build future independence.

The impact of these changes cannot be considered solely from the perspective of participants because disability affects entire families. Every appointment attended, every report organised, every school meeting conducted, every support worker coordinated, every appeal lodged and every hour spent advocating is work being undertaken by families. Parents are often expected to act as coordinators, advocates, therapists, administrators and crisis managers simultaneously. Much of this work is invisible, unpaid and undertaken alongside employment, caring responsibilities and the ordinary demands of family life. When supports are reduced, the need does not disappear. The work is simply transferred elsewhere, most often onto families. This transfer of responsibility is rarely acknowledged when discussing cost savings, but it has very real consequences for carers’ mental health, physical health, employment opportunities and financial security.

As a parent, I am particularly concerned about the cumulative impact of these changes over time. Raising disabled children already requires families to navigate systems that are often fragmented, difficult to access and emotionally exhausting. The uncertainty created by ongoing reform adds another layer of stress. Many families are already operating beyond capacity. They are managing waiting lists, workforce shortages, service gaps and increasing costs of living. The prospect of further restrictions on supports creates significant anxiety because families understand that when supports are removed, the consequences are rarely immediate. Instead, difficulties accumulate over time. Participation decreases. Social isolation increases. Mental health deteriorates. Family stress grows. Problems that could have been prevented become crises that require far more intensive intervention later. Another issue

Submission 2834

I feel is often overlooked in discussions about disability policy is the impact on parents and carers who are already carrying enormous responsibilities while still being expected to meet workforce participation requirements.

I am a single mother raising two daughters with disabilities. My days are filled with school meetings, appointments, assessments, therapy recommendations, paperwork, advocacy, emotional support and managing the practical realities of raising children whose needs are often significantly higher than those of their peers. Disability does not operate on a schedule. Appointments are rarely convenient. School issues do not wait until after business hours. Crises do not occur at times that fit neatly around employment obligations.

Despite this, I am still expected to meet JobSeeker mutual obligation requirements. I am expected to demonstrate job seeking activities and workforce participation while simultaneously undertaking what is effectively a full-time unpaid caring role. This creates a situation where the system acknowledges my daughters’ disabilities enough to require substantial care and support, but often fails to recognise the impact that caring role has on my own capacity to engage in employment.

The reality is that caring for children with disabilities involves a significant amount of invisible labour. There are countless hours spent coordinating supports, attending appointments, communicating with schools, completing paperwork, managing behavioural and emotional needs, responding to crises and providing the additional support that disabled children require to participate in everyday life. None of this labour is recognised as employment, despite the fact that it requires substantial time, skill and emotional energy.

What concerns me is that many of the proposed changes appear to assume that families can simply absorb additional caring responsibilities when supports are reduced. The reality is that many carers are already stretched beyond capacity. When supports are cut, it is parents who fill the gaps. When participation supports disappear, it is parents who become responsible for creating alternative opportunities. When capacity-building supports are reduced, it is parents who take on additional teaching, coaching and support roles. When services become harder to access, it is parents who spend hours navigating systems and fighting for assistance.

For carers who are also expected to meet workforce participation requirements, this creates an impossible situation. We are effectively being asked to perform two full-time roles simultaneously. The expectation that carers can continually absorb increasing responsibilities while maintaining employment obligations fails to reflect the reality of life for many families raising disabled children.

I believe any discussion about disability reform must also consider the impact on carers. The sustainability of the disability support system cannot be measured solely by government expenditure. It must also consider the sustainability of the families who provide the majority of day-to-day support. If carers burn out, reduce their own wellbeing, leave the workforce entirely or become unable to continue providing care, the costs are simply shifted elsewhere.

Submission 2834

Supporting disabled people and supporting carers are not separate issues. They are intrinsically connected.

I am also deeply concerned about the implications of these changes for disabled young people approaching adulthood. My eldest daughter is fifteen years old. She is at a stage of life where support should be focused on building confidence, independence, self-advocacy skills, community participation and pathways into adulthood. This transition period is critical. The decisions made during adolescence often shape future educational, vocational and social outcomes. We know that disabled young people already face significant barriers in employment, higher rates of social isolation and poorer mental health outcomes than their non-disabled peers. In that context, reducing access to supports that promote participation, skill development and independence appears particularly short-sighted. Young people should be receiving greater support during this transition, not facing additional uncertainty about what assistance will remain available in the future.

Perhaps most concerning is the growing fear within the disability community. Across parent groups, advocacy networks and disability communities, there are increasing numbers of people who are frightened about what these changes may mean for themselves or their children. Many families already feel exhausted by the constant need to justify disability, prove impairment and demonstrate need. There is a growing perception that disability is increasingly being viewed through a budgetary lens rather than a human one. Whether or not that perception reflects the intent of policymakers, it is a reality being experienced by many families. A system intended to support disabled people should not create this level of fear amongst those it exists to serve.

I appreciate the need for governments to ensure public funding is spent responsibly and sustainably. However, sustainability cannot be achieved by overlooking the realities of disability or by shifting costs and responsibilities onto families already carrying substantial burdens. The long-term social and economic costs of reduced participation, increased isolation, poorer mental health outcomes, diminished independence and increased carer burnout must be considered alongside any projected financial savings. Disability support should be viewed as an investment in people’s capacity to participate, contribute and live meaningful lives, not simply as an expenditure to be reduced.

I urge the Committee to carefully consider the lived experiences of disabled children, disabled young people and their families when evaluating these proposals. My daughters are not functional capacity scores, funding packages or budget measures. They are children with strengths, challenges, aspirations and futures. The decisions made through this legislation will have very real consequences for those futures. I ask that those consequences be given the careful consideration they deserve.

Recommendations

Submission 2834

Based on my family’s experiences and the concerns outlined throughout this submission, I respectfully recommend that:

The Government abandon any approach that places primary reliance on standardised assessments, functional capacity assessments or brief evaluation processes when determining disability support needs. Disability is complex, highly individual and often fluctuating. Clinical judgement, developmental history, collateral information and the lived experience of participants and families must remain central to decision making processes.
The Government recognise that no single assessment tool or short-term evaluation can adequately capture the complexity of disability, particularly for neurodivergent children, individuals who mask, people with fluctuating capacity and those whose support needs vary across environments.
Community participation supports remain available to disabled people of all ages and continue to be recognised as essential supports that promote inclusion, social connection, confidence, skill development, mental health and long-term independence.
Capacity-building supports continue to be funded and protected within the Scheme, recognising that these supports are investments in future independence and often reduce the need for more intensive supports later in life.
Decisions regarding support needs be based on the whole person, including the interaction between disability, environment, support systems and social circumstances, rather than narrow assessments of isolated functional tasks.
The Government formally recognise the significant contribution made by unpaid carers and families and undertake a comprehensive assessment of the cumulative impacts that proposed reforms may have on carers’ wellbeing, workforce participation, financial security and long-term sustainability.
Disability policy be developed with explicit consideration of the impacts on families caring for multiple disabled children, single-parent households and families already experiencing significant caring responsibilities.
Mutual obligation requirements and employment participation expectations for carers of disabled children be reviewed to better reflect the reality of intensive caring responsibilities. Parents providing substantial unpaid care should not be placed in situations where they are expected to simultaneously undertake full-time caring responsibilities and meet unrealistic workforce participation requirements.
Greater support be provided for disabled young people transitioning to adulthood, including continued access to supports that build independence, confidence, community participation, employment readiness and self-advocacy skills.
The Government recognise that reducing supports during critical developmental periods is likely to increase long-term costs through poorer educational outcomes, reduced workforce participation, increased mental health challenges, greater social isolation and higher future support needs.

Submission 2834

Any future reforms be co-designed with people with disability, families, carers and frontline disability professionals to ensure policy reflects the realities of living with disability rather than theoretical assumptions about disability.
The Government undertake ongoing monitoring and public reporting of the impacts of these reforms on participants, families and carers, including unintended consequences such as increased family stress, reduced participation, increased social isolation, carer burnout and diminished quality of life.
Human rights, inclusion, participation and wellbeing remain central principles underpinning all disability policy and reform efforts, consistent with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.

Ultimately, disability policy should be measured not only by its financial sustainability, but by whether it enables disabled people to live safe, meaningful and inclusive lives. Any reform that reduces participation, increases family burden or limits opportunities for disabled people to develop independence risks undermining the very objectives the Scheme was created to achieve.

Thank you for the opportunity to provide this submission. I urge the Committee to carefully consider the real-world consequences these proposals will have on disabled children, disabled adults, carers and families across Australia.