Submission 167

Submission regarding proposed NDIS legislation

I am writing as the mother of two adult sons with severe disabilities, and as a carer for my husband who is a NDIS participant due to an acquired brain injury and vision impairment.

My sons live with severe autism spectrum disorder (ASD), intellectual disability, anxiety, obessive compulsive disorder (OCD), and complex medical needs that are significantly impacted by their disabilities. As a family, we experience firsthand the daily realities and pressures of navigating the NDIS system while trying to maintain stability, safety, and quality of life.

We live about an hour outside Adelaide, and travel is difficult and exhausting for our family. Accessing services, appointments, therapies, and supports already places considerable strain on us, particularly due to regional barriers and the complexities of coordinating care for multiple people with disabilities.

While I support genuine efforts to prevent fraud, exploitation and misuse within the NDIS, I am concerned that the proposed reforms risk placing disproportionate scrutiny and compliance burdens on participants themselves, particularly people with complex and permanent disabilities.

Australia has previously experienced significant failures in government compliance systems, most notably through the Robodebt scandal. That experience demonstrated the serious harm that can occur when cost control, automation, standardised assessments and administrative efficiency are prioritised ahead of individual circumstances, procedural fairness and human oversight.

It is concerning that governments have historically struggled to adequately address large-scale fraud and waste in other sectors, including:

• corporate tax avoidance
• wage theft
• procurement and consultancy blowouts
• and inappropriate Medicare billing

eyet some of the strongest compliance and reassessment measures are now being directed toward disabled Australians who rely on essential supports to participate in daily life.

The existence of fraud within the NDIS should not be used to justify reforms that unintentionally make access harder for legitimate participants or reduce supports through overly rigid assessment systems. Fraud prevention efforts should focus primarily on:

• unethical providers

Submission 167

• organised criminal exploitation
• false invoicing
• and systemic misuse of scheme funds…not someone who may have made a honest mistake as this is not fraud

rather than increasing the evidentiary and administrative burden on participants with disability.

I am particularly concerned about:

• increased reliance on standardised functional assessments
• potential automated or formula-based decision-making
• reduced flexibility for fluctuating or complex disabilities
• reassessment pressures on existing participants
• and insufficient transparency regarding how support needs and budgets will be determined

Participants with complex disabilities often cannot be accurately assessed through simplified or standardised models alone. Disability impacts can fluctuate significantly and may not be adequately captured through short assessment processes or narrow functional criteria.

One of the biggest problems we experience with the NDIS is inconsistency between planners and decision-makers. Access to essential supports can depend heavily on whether the planner has a genuine understanding of autism, intellectual disability, acquired brain injury, psychosocial impacts and the way complex disabilities affect everyday functioning.

Different planners can interpret the same needs very differently. This creates constant uncertainty, stress and fear about whether vital supports will continue. For people with severe ASD, intellectual disability, anxiety disorders and brain injury, repeated reassessments and inconsistent interpretations can be highly distressing and destabilising.

I am also concerned about the increasing reliance on functional capacity assessments and reports without enough transparency or guidance for participants and families. My sons and husband have used large amounts of funding from their plans to pay for functional capacity assessments, only to later find out the reports still did not contain the information the NDIA wanted.

As participants and family advocates, we are often not clearly told what information was considered insufficient, what was refused, or why decisions were made. This creates confusion, distress and repeated costs for families already under pressure.

It is also very difficult to know how to ensure reports meet NDIA expectations. Occupational Therapists are often expected to write reports that determine essential supports, yet in many cases they may have had limited face-to-face involvement compared to therapists such as

Submission 167

speech pathologists, physiotherapists, psychologists and other treating professionals who know participants, their goals and their daily challenges far better over long periods of time.

Families are left trying to coordinate evidence requirements without clear guidance while repeatedly retelling highly personal and traumatic details about disability and daily functioning. This process is emotionally exhausting and deeply stressful for participants and carers.

Recently, both of my sons were unexpectedly scheduled for plan reviews in April even though their existing plans were not due to end until August. When we informed one planner that we did not yet have updated reports prepared, we were told that it did not matter because the review was “only” to add Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) into the plan so future housing options would be available when they are ready to move into their own home.

However, during the actual plan meeting conducted over the phone, it became clear the plan decisions had effectively already been made before any meaningful discussion occurred. We were asked for very little input, there was no proper discussion about goals, daily functioning, progress, or changes in support needs and we were then told the reports were too old. When we reminded the planner she had stated reports were not necessary because “nothing else would change“ our concerns were dismissed.

Despite this, significant changes were made to supports, including removal of some therapies and decisions stating both of my sons only require limited 1:1 support for a few hours per day, with the remaining support to be delivered at a 1:3 ratio.

This is extremely concerning and frightening for our family because group-based ratios are not always appropriate or safe for people with severe autism, intellectual disability, severe language disorder, anxiety, OCD, communication difficulties, sensory regulation needs and complex behaviours or support requirements. Reduced individual support can increase distress, dysregulation, social withdrawal, behavioural escalation, risks to safety, inability to communicate needs effectively, inability to access the community safely and reduced capacity to participate in therapies, appointments and meaningful daily activities.

There were also major inconsistencies between planners. One son’s previous planner recognised the realities of regional living and approved support hours that accounted for travel time, while the newer plan removed these hours entirely and also removed fortnightly banking support.

One planner provided a shorter one-year plan that at least allowed opportunities for review and adjustment, while another planner who made significant changes without meaningful consultation placed my youngest son onto a five-year plan. This was extremely frightening because if the decisions in the plan are inappropriate or harmful, we are now forced into lengthy review processes or tribunal proceedings simply to seek reconsideration of essential supports.

Submission 167

I have also experienced situations where I felt families were treated with suspicion rather than understanding. For example, I was accused of acting fraudulently after replacing an iPad that my sons use solely as an Augmentative and Alternative Communication (AAC) device due to their severe language disorder and communication difficulties.

When concerns were raised, I explained that communication support was directly connected to my sons’ goals and daily functioning, and that I had made a judgement call to the best of my ability believing the purchase was reasonable and necessary for their disability related needs. Experiences like this create fear and uncertainty for families who are trying to navigate a highly complex system while acting in the best interests of their children.

It was also deeply distressing to feel that some planning discussions focused more heavily on the cost of my son’s plan than on his actual quality of life, disability-related needs, safety, communication, independence and long-term wellbeing. During one planning conversation, the discussion began with comments about the size of my youngest son’s plan, which immediately made me feel that financial considerations were being prioritised over genuine understanding of his daily support needs.

I am also deeply concerned about the way NDIS participants are increasingly being discussed publicly by sections of the media and government. There has been growing messaging suggesting participants should not receive community participation funding or supports that help disabled people access the community.

This is extremely concerning to me as a parent and carer. Community participation is not a luxury for people with severe disabilities. These supports reduce isolation, support mental health, build confidence and independence, and allow disabled people to participate in society in meaningful ways. Without these supports, many people become isolated, distressed, and excluded from their communities.

I am also increasingly concerned about the growing restriction and scrutiny surrounding consumables and low-cost supports within the NDIS. In many cases, decisions now appear to prioritise rigid rule interpretation over genuine understanding of individual disability needs and practical day-to-day realities. It can feel less about participant choice, control and personalised supports and more about decisions being made by people who may not fully understand that complex disabilities often require flexible, creative and individualised solutions. Families and carers who live with these realities every day are often forced to think outside the square to maintain communication, regulation, safety, independence and quality of life.

There also seems to be a growing attitude in some areas that disabled people should only receive the bare minimum needed to survive, rather than supports that allow them to participate in ordinary life with dignity and inclusion. Some people appear to view it as unreasonable for a person with severe disability to access supports that allow them to do everyday things many Australians take for granted, such as getting a haircut, attending community activities, accessing social and recreational opportunities or simply being part of the

Submission 167

wider community. A system that becomes overly prescriptive risks preventing reasonable and necessary supports simply because they do not fit neatly within narrow interpretations or standardised categories.

I am also concerned about the way fraud statistics are sometimes presented publicly. Deliberate fraud should absolutely be addressed, but not every incorrect invoice or administrative mistake is intentional fraud. Sometimes genuine errors occur, such as a participant or provider uploading the wrong invoice or making a simple mistake without dishonest intent.

I worry that broad fraud figures are sometimes used in ways that create fear and negative public attitudes toward disabled people and NDIS participants generally. This contributes to stigma and can make participants and families feel blamed or viewed with suspicion simply because they require support.

Another major concern is the complaints and review process. Families can spend enormous amounts of time making complaints, gathering evidence, requesting reviews and advocating for basic supports. Often complaints are acknowledged and families may even be told that processes were not followed correctly, yet nothing meaningful changes unless the participant or family does all the additional work to pursue formal reviews themselves.

Many families also contact Members of Parliament out of desperation, only for concerns to be referred back to the NDIA, which is often the organisation they are already struggling with. This leaves families feeling unheard, powerless and trapped in exhausting administrative processes while still trying to manage complex care responsibilities every day.

Many families supporting NDIS participants already provide an extraordinary level of unpaid care, coordination and advocacy, often over decades, with little or no informal support network remaining around them. In many cases, extended family support was never available or has been lost over time due to burnout, ageing, isolation, financial pressure or the intensity of long-term caring responsibilities.

It is deeply concerning that current reform discussions appear to assume families can simply absorb additional responsibilities when participants lose supports or community access.

As parents and lifelong carers, we already undertake extensive unpaid labour every day, including cooking all meals, administering medications, coordinating support workers and services, attending meetings and medical appointments, travelling long distances to access specialist supports, managing household responsibilities, supporting therapy and literacy development at home and in real-world settings and overseeing the financial administration of multiple NDIS budgets.

Alongside this, I continue trying to maintain my role as a parent, partner and community contributor. I left a full-time career in education after more than three decades due to caring

Submission 167

responsibilities and have volunteered my time on committees aimed at improving the NDIS system itself.

Families like mine are already saving governments substantial amounts of money through unpaid labour that would otherwise require funded services.

There must be recognition that carers and families are already carrying an unsustainable load, and that reducing participant supports does not make support needs disappear, it simply shifts the burden further onto ageing parents, exhausted carers and families already operating beyond capacity.

Respite and community supports are not optional extras for families living with complex disability; they are essential supports that help sustain caring relationships, family stability and long-term participant wellbeing.

For many carers and parents, respite is the difference between coping and complete exhaustion. It provides time to recover physically and emotionally, maintain relationships, attend to other family responsibilities and continue providing high levels of unpaid care safely and sustainably.

Without these supports, families face increased burnout, isolation, mental health strain and breakdown of caring arrangements. Reducing respite or community participation supports does not remove the need for care, it simply transfers greater pressure onto already exhausted families and increases the risk of long-term crisis outcomes that are ultimately more harmful and more costly for both families and the broader system.

In my own family, these supports have played a critical role in helping us remain connected, maintain stability and continue caring for our adult sons at home and within the community.

One of the greatest fears many ageing parents and carers carry is what will happen to our children when we are no longer here to advocate, coordinate, protect and hold their lives together.

For decades, families have filled gaps in systems through unpaid labour, emotional support and constant oversight. Policies that reduce supports or assume families can indefinitely absorb increasing responsibilities fail to recognise that carers themselves age, become exhausted and will not always be physically able to continue carrying these loads.

Sustainable disability policy must consider not only current supports, but the long-term security, dignity and safety of participants after parents and primary carers are no longer able to provide intensive support.

Many families providing lifelong disability care experience significant financial strain, reduced workforce participation, and long-term personal sacrifice in order to sustain support for their

Submission 167

family members. In this context, it is important that disability policy decisions are made with a strong sense of proportionality and fairness, ensuring that cost-control measures do not disproportionately fall on some of the most vulnerable members of the community while systemic inefficiencies elsewhere in government are not equally addressed.

I also wish to raise concern about the consultation process itself. Many NDIS participants live with complex disabilities, cognitive impairments, psychosocial disabilities, chronic illness, communication barriers, fatigue, executive functioning difficulties or high daily support needs.

Despite this, participants are expected to review lengthy legislative material, understand complex policy and legal changes and prepare formal submissions within a very limited consultation timeframe.

This creates a significant inequity within the consultation process. The people most directly affected by these reforms may be the least practically able to participate fully in the process without substantial support, time, advocacy assistance or accessible materials.

Genuine consultation with disabled Australians must account for these barriers and ensure that accessibility, adequate timeframes and meaningful participation are built into the legislative process itself.

I urge the Committee to ensure that:

• participant rights and procedural fairness remain central to all reforms
• independent review and appeal mechanisms are protected
• assessment tools and methodologies are transparent
• reforms do not create Robodebt-style harms through over-standardisation or automation
• anti-fraud efforts remain focused on providers and organised exploitation rather than creating additional barriers for participants
• greater consistency between planners and decision-makers
• mandatory disability-specific training for NDIS staff and planners
• proper understanding of autism, intellectual disability, acquired brain injury, anxiety, OCD, psychosocial disability and complex support needs
• stronger protections for regional participants and families who face travel barriers
• recognition that medical needs are often closely connected to disability supports
• protection of community participation supports
• greater transparency around evidence and report requirements
• clearer explanations for decisions and refusals
• recognition of evidence from long-term treating therapists and allied health professionals
• and processes that reduce stress, uncertainty, repeated reassessment, and administrative burden for vulnerable participants and carers

Submission 167

Families caring for people with severe disabilities should not have to continually fight to prove legitimate needs or defend supports that are essential to daily life and community inclusion.

The NDIS should work fairly regardless of which planner a participant receives.

I ask that Parliament carefully consider the real-world impact these reforms will have on participants with severe disabilities, complex support needs and family carers before passing legislation that may reduce supports or increase barriers to accessing them.

Respectfully

Mother and carer of two adult sons with severe disabilities Carer and wife of a NDIS participant living with acquired brain injury and vision impairment Legal guardian and family advocate Former educator and community contributor with lived experience navigating the NDIS system