Submission 189

Submission to the Parliamentary Inquiry into the National Disability Insurance Scheme (NDIS)

Submitted by

Disability Sector Worker, Advocate, and Parent of Two Adult Children Living with Significant Disability

Introduction

I make this submission not only as a mother and carer of two adult children living with profound and life-altering disabilities, but also as someone with more than 40 years of experience working within the disability and community services sector.

Over four decades I have observed the evolution of disability support systems in Australia through multiple policy changes, funding models, and restructures. I have seen periods of genuine progress, but I have also witnessed repeated systemic failures caused by fragmentation, cost-shifting, bureaucratic division, and governments avoiding responsibility by separating disability supports across multiple systems.

My lived experience as both a professional and a parent has demonstrated to me that Australia urgently requires a cohesive, integrated, nationally administered disability system that incorporates all disability-related supports within one accountable framework.

The current model is too fragmented, too adversarial, too inconsistent, and too confusing for participants and families to navigate — particularly those dealing with complex disabilities involving cognitive impairment, mental illness, neurological conditions, behavioural issues, housing instability, justice involvement, addiction, trauma, and chronic health conditions.

The separation of responsibilities between the Commonwealth and the states is not fit for purpose.

It creates dangerous service gaps where vulnerable people fall through cracks while agencies argue over funding responsibility.

No family should have to spend years fighting systems while simultaneously trying to keep their loved one alive.

Personal Context

I am the mother of two adult children receiving NDIS support.

One of my daughters lives with multiple sclerosis.

Submission 189

One of my sons sustained a catastrophic acquired brain injury following heatstroke while working in the Pilbara in Western Australia. Since that injury, our family has experienced first-hand the devastating consequences of a system that divides responsibility across disability, health, housing, justice, mental health, addiction, guardianship, income support, and state-based crisis systems.

The injury fundamentally altered every aspect of my son’s life.

He lost emotional regulation, executive functioning capacity, impulse control, insight, and the ability to independently manage daily living. He subsequently developed severe mental health complications, addiction issues, gambling disorder, periods of homelessness and instability, relationship breakdowns, justice system involvement, suicidality, and significant vulnerability to exploitation.

Yet despite the obvious interconnectedness of these issues, the systems designed to support him operate independently of one another.

Each service assesses only its own narrow criteria.

Each department limits responsibility to its own funding boundaries.

Each system refers families elsewhere.

The burden of coordination falls almost entirely onto exhausted family members.

Families become unpaid case managers, advocates, crisis responders, legal coordinators, housing navigators, medical historians, financial administrators, and emotional supports.

The emotional, financial and physical toll of this role is immense.

In our case, the prolonged stress associated with trying to navigate these fragmented systems over many years contributed to enormous strain on our family unit, including severe financial hardship, chronic stress, grief, and ongoing trauma.

My late husband died after years of carrying the emotional burden associated with our son’s condition and the prolonged legal and systemic battles surrounding his care and compensation.

No family should have to endure this level of exhaustion simply to obtain basic coordinated support.

The Core Systemic Problem: Fragmentation

The greatest structural weakness in Australia’s disability framework is fragmentation.

The current model separates supports across:

• The NDIS
• State health systems
• Mental health systems

Submission 189

• Drug and alcohol services
• Housing and homelessness services
• Guardianship systems
• Justice systems
• Community corrections
• Centrelink and income support
• Hospital systems
• State-funded disability remnants
• Crisis and emergency responses
• Aged care and transition systems

This fragmented approach creates systemic failure because disability does not occur in isolated categories.

People with complex disabilities experience overlapping needs.

An acquired brain injury cannot be separated from:

• mental health;
• behavioural regulation;
• addiction vulnerability;
• cognitive functioning;
• housing stability;
• social isolation;
• trauma;
• physical health;
• financial vulnerability; or
• justice involvement.

Yet Australia continues to fund and administer these systems as though they are unrelated.

As a result:

• participants are repeatedly assessed by multiple agencies;
• families must constantly retell traumatic histories;
• services duplicate administration while leaving core needs unmet;
• crisis responses occur instead of preventative care;
• vulnerable participants are discharged between systems;
• no agency takes overarching responsibility; and
• families are blamed when systems fail.

The current framework rewards bureaucratic separation instead of coordinated outcomes.

Submission 189

Cost Shifting Between Governments Is Causing Harm

One of the most damaging aspects of the current structure is the continued cost shifting between Commonwealth and state governments.

Participants and families regularly encounter disputes over whether supports are:

• “health-related”;
• “mental health-related”;
• “disability-related”;
• “housing-related”;
• “justice-related”; or
• “community responsibility.”

These distinctions may matter administratively, but they are meaningless in the daily reality of people living with disability.

A person experiencing cognitive impairment, suicidality, behavioural dysregulation, addiction, homelessness, and neurological disability does not experience those issues separately.

The systems, however, do.

As a result, people are often deemed “too complex” for one service and “not eligible” for another.

This leaves the most vulnerable Australians without coordinated support.

The splitting of responsibilities between governments has created a culture where systems defend budgets instead of protecting people.

This approach is economically inefficient and morally indefensible.

The long-term cost of untreated disability complexity ultimately falls elsewhere:

• emergency departments;
• police attendance;
• incarceration;
• homelessness services;
• hospital admissions;
• guardianship applications;
• crisis accommodation;
• family breakdown;
• suicide attempts; and
• intergenerational trauma.

Australia is currently paying for fragmentation many times over. This is where real cost savings can be achieved

Submission 189

The Need for a Single Cohesive Disability Framework

Australia requires a nationally cohesive disability support framework administered or fully financed at Commonwealth level.

There must be one overarching system with clear responsibility and accountability.

People with disability and their families should not be forced to navigate disconnected systems that operate according to competing legislation, funding structures, eligibility rules, and priorities.

A truly functional disability and care framework should include integrated coordination across:

• disability supports;
• mental health services;
• neurological rehabilitation;
• behavioural support;
• addiction treatment;
• housing;
• justice diversion;
• guardianship and financial administration;
• primary healthcare;
• crisis intervention;
• carer support;
• ageing and aged care services; and
• long-term life planning.

Aged care and disability care should not operate as entirely separate systems.

Many people living with disability age with increasingly complex physical, neurological, cognitive, and social support needs. Likewise, many older Australians develop disabilities requiring coordinated long-term supports.

The artificial divide between disability care and aged care creates additional fragmentation,funding disputes, inconsistent standards, and major disruption during periods of transition.

Families frequently experience enormous anxiety when participants approach transition ages or become ineligible for one system and are forced into another with entirely different rules, funding structures, assessments, and service models.

Care needs do not suddenly change because a person reaches a particular age.

Support systems therefore should operate on a continuum across the lifespan.

Australia requires a unified long-term care framework where disability supports, ageing supports,healthcare, home care, community participation, behavioural supports, and complex care coordinationoperate within a connected national system.

Submission 189

This would allow:

• continuity of care across the lifespan;
• smoother transitions for ageing participants and carers;
• reduced administrative duplication;
• improved workforce coordination;
• greater long-term planning certainty; and
• more consistent quality standards.

Importantly, it would also recognise the reality that many ageing carers continue supporting adult children with disability well into their own frailty, illness, and advanced age.

The current separation between disability and aged care systems places enormous strain on these families and often leaves both generations vulnerable.

The system must recognise that disability is not static.

People move through different stages of stability, crisis, rehabilitation, relapse, grief, recovery, and ageing.

Current systems are reactive rather than preventative.

Support is often only increased after a person has already reached crisis point.

This is both traumatic and financially wasteful.

Case Coordination Must Become Central

One of the most critical reforms needed is the establishment of genuine long-term case coordination for people with complex disabilities.

Families currently carry responsibility for coordinating:

• hospitals;
• specialists;
• therapists;
• legal systems;
• housing providers;
• mental health teams;
• support coordinators;
• Centrelink;
• guardianship;
• financial management;
• emergency services; and
• crisis responses.

Submission 189

This level of coordination is effectively a full-time role.

It is unsustainable, particularly for ageing parents.

Many families are themselves elderly, grieving, financially exhausted, or dealing with their own health issues.

Without strong coordinated oversight, participants become vulnerable to:

• exploitation;
• homelessness;
• abuse;
• addiction relapse;
• incarceration;
• hospitalisation;
• financial collapse; and
• suicide.

Australia urgently needs properly trained, trauma-informed, disability-informed long-term case coordination embedded within the disability system itself.

Not temporary navigation.

Not fragmented support coordination.

Not referral-based management.

Genuine integrated oversight with accountability.

Acquired Brain Injury Requires Far Greater Recognition

Acquired brain injury remains one of the least understood and most poorly integrated areas within disability service delivery.

Many people with ABI present with:

• impaired insight;
• emotional dysregulation;
• impulsivity;
• aggression;
• poor executive functioning;
• addiction vulnerability;
• social disconnection;
• reduced decision-making capacity; and
• behavioural instability.

Submission 189

These impairments are frequently misunderstood as deliberate behavioural choices rather than neurological injury.

As a result, people with ABI often cycle through:

• mental health systems;
• police involvement;
• emergency departments;
• homelessness;
• incarceration;
• addiction services; and
• repeated crises.

Families are often left trying to hold together systems that fundamentally fail to understand the nature of acquired brain injury.

There is an urgent need for:

• specialist ABI-informed service models;
• integrated neurological and psychiatric support;
• long-term behavioural rehabilitation;
• supported decision-making frameworks;
• stable housing pathways; and
• family support systems.

Community Participation, Social Inclusion and the Right to Live a Meaningful Life

One of the most important principles that must remain central to the NDIS and any future disability reform is recognition that people with disability are entitled not merely to survive, but to live meaningful, connected and participatory lives.

Disability support cannot be reduced to medical appointments, therapy sessions, behavioural management, or crisis responses alone.

Life is not simply attending allied health and medical appointments.

Life is:

• participating in community;
• building relationships;
• volunteering;
• engaging in recreation and hobbies;
• maintaining social connection;
• pursuing interests and goals;
• participating in sport and creative activities;

Submission 189

contributing to society; and experiencing dignity, purpose and belonging.

For many participants, particularly those with acquired brain injury, neurological conditions, pyschosocial disability, degenerative illness, or social isolation, community participation supports are not optional extras.

They are essential protective factors.

Social and recreational participation reduces:

isolation; depression; behavioural escalation; mental health deterioration; substance abuse relapse; suicidality; and long-term dependence on crisis systems.

Meaningful engagement in community life builds confidence, identity, routine, resilience, independence, and emotional wellbeing.

Yet increasingly, community access and social participation funding are often viewed as secondary or non-essential components of disability support.

This approach fundamentally misunderstands the purpose of disability support.

The goal of disability services should not simply be maintenance of impairment. The goal should be enabling people to participate as fully as possible in life and community.

I strongly believe future reforms must preserve and strengthen funding for:

community access; recreational participation; volunteering; skill development; social connection; peer support; cultural participation; supported employment pathways; and meaningful community engagement.

These supports are often the very things that prevent deterioration, isolation, institutionalisation, and repeated crises.

A truly humane disability system must recognise that quality of life matters. People with disability deserve opportunities not merely to exist, but to live.

Submission 189

The Human Cost of System Failure

Policy discussions about the NDIS often focus heavily on cost.

Far less attention is given to the human cost of system failure.

Families experience:

• chronic stress;
• grief;
• burnout;
• financial devastation;
• social isolation;
• trauma;
• relationship breakdown;
• deteriorating health; and
• profound emotional exhaustion.

Many carers spend years in survival mode.

Many lose employment opportunities, retirement security, and their own wellbeing while trying to compensate for fragmented systems.

The emotional labour required to constantly advocate for basic supports is immense.

The current system frequently retraumatises participants and families through repetitive assessments, adversarial reviews, funding uncertainty, and bureaucratic inconsistency.

People with disability deserve stability.

Families deserve partnership rather than opposition.

Recommendations

I respectfully recommend the following reforms:

1. Establish a Fully Integrated National Disability Framework

Create a nationally administered or nationally financed framework that removes fragmented responsibility between state and Commonwealth systems.

2. End Cost Shifting Between Governments

No participant should lose access to support because governments dispute responsibility.

A single accountable framework must exist.

Submission 189

Integrate Disability, Mental Health, Housing and Justice Responses

People with complex disabilities require multidisciplinary integrated responses rather than siloed systems.

Establish Long-Term Complex Case Coordination

Create specialist long-term coordination roles for participants with high complexity needs.

Develop Specialist ABI Pathways

Create nationally consistent acquired brain injury services incorporating behavioural, eurological, psychiatric, addiction, housing, and forensic support.

Integrate Early Intervention and Allied Health Supports Through Education Systems

Australia must move toward a genuinely integrated developmental and educational support framework for children and young people with disability.

The current separation between education departments, health systems, early intervention services, and the NDIS creates unnecessary duplication, delays, administrative burden, and inequity.

Families are often forced to independently coordinate:

• speech therapy;
• occupational therapy;
• psychology;
• physiotherapy;
• behavioural supports;
• learning supports;
• paediatric services; and
• disability funding systems.

This fragmented model disadvantages children during the most critical developmental years.

Schools and educational settings are the logical central point for coordinated early intervention and allied health delivery because they are the environments where children spend the majority of their time and where developmental, behavioural, social, and learning challenges are often first identified.

I strongly support reforms where states are fully funded through Commonwealth arrangements to provide integrated allied health and early intervention services directly within education systems.

This should include:

• multidisciplinary allied health teams embedded within schools;
• streamlined access to therapy services;
• integrated developmental assessments;

Submission 189

-early behavioural and cognitive intervention; -family support and education; -neurodevelopmental screening; disability-informed educational planning; mental health supports; and coordinated transition planning into adulthood.

This approach would significantly reduce:

-long-term disability severity; educational disengagement; behavioural escalation; youth justice involvement; family stress; mental health deterioration; and future crisis-driven expenditure.

Importantly, it would also reduce the adversarial nature of families needing to constantly prove eligibility for support.

Early intervention should not depend on a family’s ability to navigate bureaucracy, pay privately, or advocate aggressively.

Children should receive coordinated support as a standard component of an inclusive national education and developmental framework.

Investment in integrated early intervention produces lifelong benefits not only for individuals and families, but for the broader economy and community.

However, this must be implemented carefully. Much of the concern about “Thriving Kids” reflects the fact that many parents of young children have only experienced NDIS funding and have mainly heard negative accounts of earlier models, which were often underfunded, inconsistent, poorly coordinated, and subject to long waiting lists.

7. Support Families and Ageing Carers

Recognise families as essential stakeholders within the disability system.

Provide practical support, respite, education, trauma-informed services, and future planning assistance.

8. Reform Provider Registration and Preserve Genuine Choice and Control

The current direction of disability reform risks unintentionally reducing genuine participant choice and control by creating barriers that favour only large providers and heavily centralised service models.

Large not-for-profit organisations are not the only answer to quality disability support.

Submission 189

Smaller community-based organisations, sole traders, micro-providers, and independent support workers play a critical role within the disability ecosystem.

They often provide:

• greater flexibility;
• continuity of relationship;
• cultural understanding;
• specialist lived experience;
• innovative approaches;
• community connection;
• lower overheads; and
• more personalised support.

In regional and remote communities, independent support workers and small providers are frequently the only viable workforce available.

If registration systems become overly complex, expensive, or administratively burdensome, many smaller providers and independent workers will leave the sector.

This will reduce participant choice, worsen workforce shortages, increase monopolisation by large providers, and undermine the original principles of the NDIS.

I strongly recommend the introduction of a scaled three-tier provider registration framework.

For example:

Tier 1 — Large and High-Risk Providers

Full registration requirements for large organisations, complex service delivery, restrictive practices, high-risk supports, and corporate providers.

Tier 2 — Small and Medium Providers

Simplified and proportionate registration requirements for small businesses delivering lower-risk supports.

Tier 3 — Independent Support Workers and Micro-Provide rs

A streamlined individual registration pathway for sole traders and independent workers incorporating:

• worker screening;
• qualifications and skill verification where relevant;
• code of conduct obligations;
• insurance requirements;
• taxation compliance;
• superannuation obligations; and
• basic governance standards.

Submission 189

This approach would preserve participant safety while maintaining workforce diversity and participant choice.

Independent workers should not be forced into regulatory models designed for large corporate organisations.

Additionally, I believe consideration should be given to linking independent worker pricing more closely to the SCHADS Award, with an additional loading to account for:

• administration;
• superannuation;
• taxation;
• insurance;
• leave entitlements; and
• operational costs.

The current one-size-fits-all pricing structures can unintentionally encourage rogue operators, inflated pricing, and unsustainable business models.

A fairer and more transparent pricing approach would:

• support sustainability;
• reduce exploitation;
• maintain workforce flexibility;
• improve affordability;
• and preserve genuine participant choice.

The NDIS was founded on the principle that people with disability should have control over who supports them.

That principle must not be lost through over-centralisation and excessive regulation.

Rebuild Local NDIS Presence, Accessibility and Regional Decision-Making

One of the greatest frustrations experienced by participants, families, carers, providers, and frontline workers is the lack of accessible, consistent, relationship-based communication within the current NDIS administrative structure.

Over time, the system has increasingly shifted toward centralised, remote, highly controlled communication models that often leave participants unable to speak directly with planners, decision-makers, or individuals who understand their circumstances.

The result is a system that many families experience as impersonal, inaccessible, adversarial, and disconnected from the realities of everyday life.

The current approach often operates in a manner that prioritises distance and administrative containment over genuine human engagement and problem solving.

This is dangerous for vulnerable participants, particularly those with:

Submission 189

• acquired brain injury;
• psychosocial disability;
• intellectual disability;
• complex behavioural needs;
• fluctuating conditions;
• communication impairments;
• trauma backgrounds; and
• crisis vulnerability.

Disability support systems cannot function effectively without relationships, accessibility, trust, continuity, and local knowledge.

I strongly recommend significant expansion of locally based NDIS offices and regionally eMBEDDED staffing.

Planners, case managers, coordinators, and decision-makers should be:

• located within regional communities;
• accessible to participants and families;
• contactable directly;
• knowledgeable about local services and workforce realities; and
• involved in ongoing relationship-based support.

Too often, participants living in rural or remote Australia are managed by individuals located interstate or in major metropolitan centres with little or no understanding of local geography, workforce shortages, transport limitations, housing availability, cultural considerations, or community realities.

This results in planning decisions that are disconnected from practical reality.

For example, participants may receive transport funding designed for rideshare or taxi usage despite living in communities where no taxi or rideshare services exist.

Similarly, rigid monthly funding allocation models often fail participants with fluctuating disabilities, behavioural instability, episodic mental health conditions, neurological disorders, or crisis-driven support needs.

Disability does not always operate according to predictable monthly schedules.

Support systems must be flexible enough to respond to periods of escalation, instability, illness, grief, hospitalisation, behavioural deterioration, or changing functional capacity.

Locally embedded staff with genuine community knowledge are far better positioned to:

• understand practical barriers;
• identify realistic service options;
• coordinate informal and formal supports;
• build collaborative relationships;
• support crisis prevention;

Submission 189

• and create plans that actually reflect participant needs.

A nationally consistent system does not require centralised disconnection.

It requires nationally accountable standards delivered through strong local relationships and community knowledge.

The current lack of accessibility and continuity contributes significantly to participant distress, family burnout, service breakdown, and distrust in the system.

Rebuilding regional presence and relationship-based engagement should be viewed as essential infrastructure within any future reform process.

9. Reduce Administrative Burden on Participants and Families

Simplify assessments, reporting, reviews, and service navigation.

10. Prioritise Prevention Over Crisis Response

Invest in early intervention, stable housing, behavioural supports, and coordinated care to prevent escalation into homelessness, incarceration, hospitalisation, and suicide.

11. Reform Revenue and Taxation to Sustain Disability Supports

Australia must have an honest national conversation about how essential disability supports are funded long term.

A modern disability system cannot be sustainably maintained through piecemeal budgeting and political cycles while wealth concentration and corporate super-profits continue to increase.

I strongly support taxation and revenue reforms that allow fully funded disability, health, mental health, housing, and community support systems for future generations.

This includes consideration of:

• stronger taxation of excessive corporate and multinational profits;
• fairer taxation of resource sector super-profits;
• long-term sovereign investment models linked to Australia’s natural resource wealth;
• closing corporate tax minimisation loopholes;
• ensuring large corporations contribute proportionately to the social infrastructure required to support Australians;
• and directing a defined portion of national wealth into long-term disability and community support sustainability.

Australia is one of the wealthiest nations in the world, yet vulnerable people and families are outine forced into crisis because systems are underfunded, fragmented, and reactive. Disability support should not be viewed as a financial burden. In fact it has been shown to have a cost benefit by the Productivity Commission. It is nation-building social infrastructure.

Submission 189

Strong disability systems reduce long-term expenditure across emergency healthcare, homelessness, justice, incarceration, crisis accommodation, child protection, and welfare dependency.

Investment in coordinated disability support creates healthier families, safer communities, increased participation, and better long-term economic outcomes.

The current generation of children and young adults with disability deserve certainty that properly funded supports will exist not only now, but for the next 16–18 years and beyond.

Long-term sustainable funding must become a national priority rather than a recurring political debate.

Conclusion

After more than 40 years working in the disability sector and decades caring for family members with complex disabilities, I believe Australia has reached a critical point.

The current fragmented system is not sustainable.

It places impossible burdens on participants, families, carers, and frontline workers.

The separation of disability-related services across multiple jurisdictions and systems creates dangerous gaps where vulnerable people are left unsupported while agencies dispute responsibility.

Disability does not exist in separate categories.

Neither should disability supports.

Australia needs a compassionate, accountable, nationally integrated disability framework that places human wellbeing above bureaucratic division.

Families should not have to spend years fighting systems while trying to keep their loved ones safe.

People with disability deserve coordinated support, dignity, stability, and continuity of care.

The current structure does not consistently provide this.

Meaningful reform requires courage to move beyond fragmented governance models and build a genuinely integrated national disability support system that is fit for purpose for the future.

Submitted respectfully,