Submission 2132

Submission to the Senate Community Affairs Committee Inquiry

Executive Summary

I am writing as the parent and primary carer of a 16-year-old young person with Autism, ADHD, Intellectual Disability, severe anxiety, and Avoidant Restrictive Food Intake Disorder (ARFID).

I have chosen to make this submission anonymously.

This submission is not simply about my son or our family. It is about what happens when a system designed to support people with disability fails to provide adequate support during one of the most critical periods of a person’s life: the transition from childhood to adulthood.

My son is exactly the type of participant the NDIS should be investing in.

He is a young person with significant disability-related functional impairment who requires support to remain engaged in education, develop independence, access his community, build social connections, prepare for employment and transition into adulthood.

Instead, despite extensive evidence of substantial disability and functional impairment, he receives only three hours of support work per week.

This submission outlines:

• The extent of my son’s functional impairment.
• The inadequacy of his current NDIS supports.
• The growing gap between school and adulthood for young people with disability.
• The transfer of responsibility from the NDIS onto unpaid family carers.
• The absence of meaningful informal supports.
• The fear many families experience when interacting with the NDIS.
• Concerns regarding the proposed legislative reforms.
• The long-term social and economic consequences of underfunding young people with disability during adolescence.
• The human rights implications of these policy decisions.

My central concern is simple:

The NDIS increasingly speaks about independence, capacity building, participation and employment while simultaneously reducing or limiting the very supports required to achieve those outcomes.

This is not only poor policy.

It is economically short-sighted, socially harmful and inconsistent with the stated objectives of the NDIS.

About My Son

My son is 16 years old.

Submission 2132

He lives with Autism, ADHD, Intellectual Disability, severe anxiety and ARFID.

He is a bright, funny, caring young person with dreams, aspirations and goals for his future.

Like many young people his age, he wants to become more independent, participate in the community, develop friendships, work, learn to drive and do all of the things that other kids his age are doing.

He wants to build a life that reflects his interests and strengths.

The difference is that achieving these goals requires support.

For many young people, these developmental milestones occur naturally through education, social experiences, family support networks and increasing independence.

For young people with significant disability, additional supports are often required to bridge the gap between childhood and adulthood.

This is precisely what the NDIS was designed to do.

However, our experience has been that the system increasingly focuses on limiting support rather than enabling outcomes.

The result is that young people with disability are expected to achieve the same goals as their peers without being provided with the supports required to get there.

Evidence of Significant Functional Impairment

My son’s support needs are not based on opinion. They are supported by professional evidence.

A recent Functional Capacity Assessment identified severe impairment across multiple domains of functioning.

The assessment found severe difficulties with cognition, including learning, memory, attention, executive functioning, planning, organisation and problem-solving.

His cognition score on the WHODAS assessment fell within the severe range, reflecting substantial barriers to everyday functioning and independence.

The assessment also identified substantial difficulties with communication, social participation and adaptive functioning.

Communication skills were found to be significantly below age expectations, with functioning below the first percentile in several areas.

Executive functioning deficits affect his ability to:

Submission 2132

• Organise tasks.
• Manage time.
• Sequence activities.
• Plan ahead.
• Problem solve.
• Complete daily activities independently.
• Initiate tasks without support.

The assessment found severe difficulties in planning and organisational skills and identified a heavy reliance on adult prompting and scaffolding for everyday tasks.

Safety awareness was also identified as a significant concern.

The assessment documented challenges relating to:

• Road safety.
• Risk awareness.
• Community safety.
• Vulnerability to exploitation.
• Situational awareness.
• Independent decision making.

These difficulties mean that community participation often requires supervision and support.

The report further documents substantial emotional regulation challenges, anxiety, sensory processing difficulties and barriers to social participation.

Importantly, the assessment identifies significant reliance on family support across all domains of life.

This is not a young person who requires occasional assistance.

This is a young person with complex and substantial support needs.

Yet despite this evidence, the supports currently funded fall far short of what would reasonably be expected for someone with this level of impairment.

The Education Crisis

One of the most concerning aspects of my son’s situation is his increasing disengagement from education. He is currently unable to attend school due to the impact of his disabilities.

The Functional Capacity Assessment documents significant difficulties with school attendance arising from anxiety, sensory sensitivities and emotional distress. It notes that school participation has become increasingly difficult and that these barriers have a substantial impact on his ability to engage in education.

This should be viewed as a significant warning sign.

Submission 2132

Education is one of the strongest predictors of future employment, social inclusion, independence and wellbeing. When a young person with disability begins disengaging from education, the response should be increased support, not reduced investment.

Instead, many families are left attempting to hold together fragile educational participation without the supports required to address the underlying causes of disengagement. The longer these issues remain unaddressed, the greater the risk of lifelong consequences.

The Inadequacy of the Current Plan

despite extensive evidence of significant functional impairment, my son’s current plan does not provide the level of support required to address his needs or achieve the goals identified within the plan itself.

The reality is that the supports funded are not aligned with the evidence.

The Functional Capacity Assessment identifies severe cognitive impairment, significant executive functioning difficulties, impaired safety awareness, substantial barriers to community participation, communication challenges, emotional regulation difficulties and ongoing reliance on family support. Yet these needs are not reflected in the practical supports available to him.

My son currently receives only three hours of support work per week.

Three hours per week may be appropriate for a participant requiring occasional assistance.

It is not adequate for a 16-year-old with Autism, ADHD, Intellectual Disability, severe anxiety and ARFID who is struggling to access education and requires support to develop independence.

The NDIS plan identifies goals relating to:

• Independence.
• Community participation.
• Social connection.
• Confidence.
• Emotional regulation.
• Employment preparation.
• Learning to drive.
• Participation outside formal education.

However, there is a fundamental disconnect between these goals and the supports funded to achieve them.

The plan effectively sets expectations without providing the resources required to meet them.

The result is that responsibility is transferred back onto family members who are expected to somehow bridge the gap between aspiration and reality.

This is not genuine capacity building, it is the appearance of capacity building.

Submission 2132

The NDIS frequently speaks about participant outcomes, yet outcomes cannot be achieved through goals alone. Outcomes require investment.

The current plan does not provide sufficient investment to realistically achieve the outcomes it identifies.

The Missing Bridge Between School and Adulthood

My son is 16 years old.

He is at a critical developmental stage where the focus should be on preparing for adulthood. This should be one of the highest priority periods for NDIS investment.

Instead, it is increasingly becoming one of the largest gaps within the system.

Young people with disability do not simply wake up on their eighteenth birthday ready for employment, independent living, community participation or further education.

These skills are developed over years.

The period between approximately 14 and 18 years of age is when these foundations should be built.

This is when young people should be receiving support to:

• Develop independence.
• Build executive functioning skills.
• Learn community access.
• Increase social participation.
• Develop transport skills.
• Explore vocational interests.
• Gain work experience.
• Build self-confidence.
• Learn self-advocacy skills.
• Develop emotional regulation strategies.
• Work towards obtaining a learner’s permit and eventually a licence.

Yet there appears to be a significant gap between school-based supports and School Leaver Employment Supports (SLES).

Families are often expected to somehow navigate this transition with minimal assistance. Many young people fall through the cracks. My son is already experiencing enormous difficulty accessing education.

This should trigger greater support and intervention. Instead, families are often left managing these challenges largely alone until a young person has already disengaged from school or reached adulthood.

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By then, valuable years have been lost. The consequences of this failure are predictable. Young people become socially isolated, employment opportunities diminish, confidence decreases, mental health deteriorates, reliance on family increases.

Future support needs become more intensive and more expensive. This is not only harmful for individuals, it is economically irrational.

Every skill developed during adolescence has the potential to reduce future support needs. Every opportunity lost increases future costs.

The NDIS should be investing heavily in transition supports for young people with significant disability.

Instead, many families are finding themselves fighting simply to access enough support to keep their children engaged and connected.

The Hidden Workforce Propping Up the NDIS

Much of the public discussion about NDIS sustainability focuses on participant funding, but far less attention is given to the unpaid workforce quietly keeping the system afloat: family carers.

In our family, I am not just a parent. I am an advocate, case manager, support coordinator, transport provider, education liaison, administrator, emotional support person, crisis response team and often the person responsible for filling the countless gaps left by an underfunded system. This work is unpaid, largely invisible and increasingly assumed.

What concerns me is that when supports are reduced, the need does not disappear. Someone still has to provide the supervision, transport, advocacy, emotional support, skill building and day-to-day care. More often than not, that responsibility falls back onto families. In our case, there is no extended family waiting in the wings to help. There is just us.

Every gap in support becomes another responsibility that falls back onto our household. Over time that has real consequences. Parents reduce work hours or leave the workforce altogether. Careers are put on hold. Financial pressure increases. Carers become exhausted. Family relationships come under strain.

What is often missing from discussions about NDIS sustainability is an honest conversation about where these costs go when support is reduced. The need itself does not disappear. Families absorb as much as they can until they reach breaking point, and then the consequences start showing up elsewhere. They show up in struggling education systems, overwhelmed mental health services, increased reliance on income support, housing instability, crisis services and, for some young people, interactions with the justice system.

From where I sit, this does not look like sustainability. It looks like cost shifting. The problem is not solved. The cost is simply transferred from the NDIS onto families and other already strained systems, while young people lose valuable years that could have been spent building skills, confidence and independence.

Submission 2132

A truly sustainable NDIS cannot be built on the assumption that families will continue absorbing increasing levels of responsibility without consequence. Nor can it be built by repeatedly kicking the can down the road and expecting other systems to deal with the fallout later.

Fear, Power Imbalance and Loss of Trust

I have chosen to make this submission anonymously.

That is not a decision I made lightly.

As a parent, I should be able to speak honestly about our experience of the NDIS without worrying about whether it will affect future interactions with the Agency. Yet I know I am not alone in feeling uncomfortable attaching my name to criticism of a system that holds significant influence over my son’s future.

The reality is that the relationship between participants and the NDIA is not an equal one. The Agency controls access to supports that can directly affect a person’s education, independence, community participation, mental health and future opportunities. When one organisation holds that level of power, people become cautious about speaking openly when things go wrong.

Over the years I have spoken to many parents, carers and people with disability who share similar concerns. Some worry about being labelled difficult. Others worry about being viewed as unreasonable or non-compliant. Whether those fears are justified is not really the point. The fact that so many people have them should concern policymakers.

Trust is not built by telling people to trust the system. Trust is built when people feel heard, when evidence is genuinely considered, and when decisions are transparent and can be challenged when necessary.

Our experience has been that having substantial evidence does not necessarily result in an outcome that reflects a person’s actual needs. When families spend years attending appointments, gathering reports, obtaining assessments and repeatedly explaining the impact of disability on daily life, only to receive plans that bear little resemblance to that evidence, confidence in the system is inevitably damaged.

Many of the proposed reforms appear likely to increase the existing imbalance of power between participants and the Agency. Reduced oversight, fewer accountability mechanisms, greater reliance on automated processes and increased Agency discretion do not build trust. They risk further eroding it.

For a scheme founded on the principles of choice and control, that should be a significant concern.

Why the Proposed Reforms Are So Concerning

My concerns about the proposed legislation cannot be separated from my family’s experience of the existing system.

Submission 2132

The reforms are being proposed against a backdrop where many participants are already struggling to access adequate supports.

Families like mine are already attempting to navigate planning processes that often feel adversarial.

Many participants are already receiving plans that fail to reflect available evidence.

Many carers are already operating beyond sustainable limits.

Against this backdrop, the proposed reforms appear to increase Agency power while reducing participant protections.

I am particularly concerned about:

• Automated Decision-Making

What worries me about automated decision-making is that disability is rarely straightforward. My son is not just a diagnosis on paper. He is a 16-year-old young person with multiple disabilities whose ability to function changes depending on his environment, anxiety levels, sensory load, support network and the demands being placed on him. A computer may be able to process data, but it cannot sit across from a family, understand the reality of daily life, or appreciate the cumulative impact of multiple disabilities on a young person’s future. Decisions that affect a person’s education, independence, safety and participation in society dereserve more than an automated assessment of information entered into a system.

My son is a young person whose support needs are shaped by the interaction of Autism, ADHD, Intellectual Disability, anxiety, ARFID, executive functioning challenges, educational disengagement and family circumstances.

These complexities cannot be adequately understood through automated processes.

The introduction of automated decision-making raises serious concerns about fairness, transparency and accountability.

Participants deserve to know that decisions affecting their lives have been made by a person who has genuinely considered their circumstances.

Increased Delays

What worries me about extending these timeframes is that childhood doesn’t wait. My son is already struggling to stay connected to school and to develop the skills he will need as an adult. If we identify that he needs more support, waiting another three months for a decision isn’t a minor inconvenience. That’s a whole school term gone. That’s another term where he’s falling further behind his peers in developing independence, confidence, community participation and employment skills. Young people only get one chance to be young. The opportunities missed while families are waiting for decisions are not always opportunities that can simply be made up later.

Reduced Accountability

Submission 2132

Our experience has been that having evidence does not necessarily result in an appropriate outcome. We have provided reports, assessments and professional recommendations that clearly document the significant impact of our son’s disabilities on his daily life, education, independence and future opportunities, yet the supports funded still fall well short of what he needs. That experience makes the proposed reduction in accountability and oversight particularly concerning.

The NDIA already holds enormous power over the lives of people with disability. It determines access to supports that can directly affect a person’s safety, education, employment opportunities, independence, mental health and quality of life. Reducing review rights, extending decision-making timeframes, removing safeguards and increasing Agency discretion risks creating an unprecedented imbalance of power between participants and the NDIA. In any system where one party holds such significant authority over the lives of others, strong oversight, transparency and independent avenues for challenge are essential. These reforms appear to move in the opposite direction. If anything, greater scrutiny and accountability are needed, particularly when many families already feel that professional evidence is not being adequately reflected in planning decisions.

Expanding Compliance While Reducing Support

Perhaps the most frustrating aspect of these reforms is that families are constantly being told the NDIS is unsustainable, that funding must be reduced and that participants need to accept less. Yet the same legislation expands compliance powers, increases administrative controls, creates new monitoring and enforcement mechanisms, introduces automated decision-making and gives the Agency greater authority over participants and providers. From the perspective of families already struggling to obtain adequate supports, it raises an obvious question: if resources are so limited, why does there appear to be funding available for more bureaucracy, more surveillance and more enforcement, but not enough to ensure a 16-year-old with significant disabilities receives the support he needs to access education, develop independence and prepare for adulthood?

The Long-Term Cost of Underinvesting in Young People

Sometimes I feel like policymakers talk about young people with disability as though adulthood just magically happens.

My son is 16. Right now his peers are learning to drive, getting part-time jobs, catching public transport, making plans for life after school and gradually becoming more independent from their parents. None of that happens by accident.

For young people with significant disabilities, those same milestones often require support, practice, coaching and opportunities to learn. The problem is that those opportunities don’t seem to be there. There is a huge gap between school and adulthood, and families are expected to somehow bridge it on their own.

What concerns me most is that if we get this wrong now, the consequences do not disappear. They simply emerge later in different and often more costly ways. They show up as unemployment, social isolation, deteriorating mental health, increased vulnerability, potential interactions with the justice system, ongoing reliance on ageing parents, and higher support needs in adulthood. As a parent, it is difficult to understand how this can be considered sustainable. Investing in young people with disability during the critical transition to adulthood is not an unnecessary expense. It is one of the most effective opportunities we have

Submission 2132

to improve long-term outcomes, reduce future support needs, and help people build meaningful, independent lives. The real question is not whether we can afford to invest in young people now. It is whether we can afford the consequences of failing to do so.

Human Rights, Participation and the Purpose of the NDIS

When people talk about NDIS sustainability, I often wonder whether anyone is thinking about what sustainability actually means for families like mine.

My son is 16 years old. He has Autism, ADHD, Intellectual Disability, severe anxiety and ARFID. He is struggling to access education and requires support across multiple areas of daily life. Despite extensive professional evidence documenting significant functional impairment, he currently receives only three hours of support work per week. I find myself asking what exactly the expectation is.

What does the system expect to happen next? How is he supposed to build independence without opportunities to practise it? How is he supposed to prepare for employment if he is struggling to remain engaged in education? How is he supposed to develop community access skills if he cannot access the community? How is he supposed to learn to drive, develop confidence, build social connections and prepare for adulthood with such limited support? These are not rhetorical questions. They are the reality families are trying to navigate every day.

I fully understand that government resources are not unlimited and that public money must be spent responsibly. What I struggle to understand is the logic of reducing investment at exactly the point where it has the greatest potential to change the trajectory of a young person’s life.

The years between adolescence and adulthood are critical. They are the years when young people develop the skills, confidence and experiences that shape their future. If young people with disability are not given the same opportunities to develop those skills, the consequences should not come as a surprise. Greater dependence, poorer employment outcomes, social isolation and increased support needs in adulthood are not inevitable outcomes of disability. They are often the predictable outcome of failing to provide adequate support when it mattered most.

From where I sit as a parent, the question is not whether we can afford to support young people like my son. The question is whether we can afford not to.

Recommendations

1.  Reject any legislative changes that reduce accountability, independent oversight,
    review rights, or external scrutiny of NDIA decision-making.

Submission 2132

• Reject any expansion of NDIA powers that is not accompanied by equivalent safeguards, transparency measures, procedural fairness protections, and independent review mechanisms.

• Require the NDIA to provide clear written reasons where planning decisions differ significantly from the recommendations of treating professionals and existing evidence, including an explanation of how participants are expected to achieve their stated goals with the supports funded.

• Reduce the burden on participants and families to repeatedly prove disability and support needs where substantial evidence already exists. The issue for many families is not a lack of evidence, but a failure for planning decisions to adequately reflect that evidence.

• Establish a dedicated transition pathway for young people with disability aged 14–18, recognising adolescence as a critical period for developing independence, community participation, employment readiness, transport skills, self-advocacy and life skills.

• Address the significant gap between school-based supports, community participation supports, School Leaver Employment Supports (SLES), and adulthood to prevent young people with disability falling through the cracks during transition.

• Increase investment in capacity-building supports for adolescents with disability, recognising that early investment is more effective and cost-efficient than responding to lifelong dependence, unemployment, social isolation and higher support needs in adulthood.

• Require planning decisions to explicitly consider the availability, capacity and sustainability of informal supports, rather than assuming families can absorb unmet support needs indefinitely.

• Recognise unpaid family carers as a critical part of the disability support ecosystem and assess the impact of policy changes on carer wellbeing, workforce participation, financial security and long-term sustainability.

• Undertake independent modelling of the costs shifted onto other systems when disability supports are reduced or denied, including education, mental health, housing, health, income support and justice systems.

• Prohibit automated decision-making from being used as the sole basis for decisions affecting participant eligibility, support budgets, funding allocations, plan reassessments or access to the Scheme.

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Ensure all proposed NDIS reforms are assessed against their long-term impact on

participant outcomes, including education, employment, independence, social participation, safety, wellbeing and quality of life, rather than short-term reductions in Scheme expenditure alone.

Reaffirm the original purpose of the NDIS as a scheme that promotes inclusion,

participation, independence, dignity, opportunity and social and economic contribution for people with disability, rather than one primarily focused on administrative control, compliance and cost containment.

Ensure participants, families, advocates and people with disability can engage in

consultation, advocacy, complaints and review processes without fear of adverse consequences, perceived retaliation, or disadvantage in future interactions with the Agency.

Ensure planning and funding decisions are based on comprehensive evidence of

functional capacity, including reports from treating professionals and practitioners with an established understanding of the participant’s disability, support needs and daily functioning. Functional capacity is complex, context-dependent and often fluctuates over time. It should not be determined solely through brief, point-in-time assessments or standardised processes that cannot adequately capture the realities of a person’s lived experience.

Require the NDIA to demonstrate how any proposed reduction in participant supports

is expected to improve participant outcomes, increase independence, or reduce future support needs, rather than simply reducing Scheme expenditure.

Conclusion

What I find most frustrating is that my son is exactly the kind of young person the NDIS should be investing in.

He is 16 years old. He has goals, aspirations and the potential to develop greater independence, but he cannot do that alone. He needs support to access the community, build confidence, develop life skills, prepare for employment, learn to navigate the world safely and transition into adulthood.

Instead, despite significant evidence of disability and functional impairment, we are constantly being told about sustainability, budget pressures and the need to reduce spending.

I understand the importance of responsible use of public funds. What I do not understand is how it can be considered sustainable to underinvest in young people at exactly the point where support has the greatest capacity to change the course of their lives.

Submission 2132

Every opportunity my son misses today becomes a barrier he will have to overcome tomorrow. Every skill he is not supported to develop now becomes a greater support need later. Every year spent waiting, fighting for supports or trying to make inadequate plans work is a year that cannot be given back.

The reforms currently being proposed appear to be built on the assumption that reducing support will somehow create greater independence. Our experience has been the opposite. Independence is not achieved by removing support. It is achieved by providing the right support at the right time.

My fear is that years from now, governments will look at increased unemployment, social isolation, mental health challenges and higher support needs amongst young adults with disability and wonder how it happened.

Many families already know the answer.

It starts when we stop investing in young people before they have had a genuine opportunity to succeed.