NDIA Accountability Project

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Parent's account of navigating fragmented disability supports following acquired brain injury and multiple sclerosis diagnosis (Family or carer experience)

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

Submitted by redacted 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 life-altering disabilities but also someone who has more than four decades experience working within disability community services sector.

Over forty I’ve observed evolution in Australia’s disability support system through policy changes models restructures seen periods progress witnessed repeated systemic failures fragmentation cost-shifting bureaucratic division governments avoiding responsibility separating supports across multiple systems.

My lived experiences both professional parent demonstrate that urgently requires cohesive integrated nationally administered disability system incorporates all related supports framework.

The current model fragmented adversarial inconsistent confusing for participants families navigate particularly those dealing complex disabilities involving cognitive impairment mental illness neurological conditions behavioural issues housing instability justice involvement addiction trauma chronic health conditions separation responsibilities between Commonwealth states is fit purpose creates dangerous service gaps where vulnerable people fall cracks agencies argue funding responsibility No family should spend years fighting while simultaneously trying keep their loved alive.

Personal Context

I am母亲oftwoadultchildrenreceiving NDISsupport One my daughters liveswithmultiple sclerosis.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 ongoing trauma.my late husband died after years carrying emotion burden associate with our sons condition during long term legal systemic battles surrounding his care compensation.no family should have endure level exhaustion simply obtain basic coordinated support.

The Core Systemic Problem: Fragmentation

the greatest structural weakness in Australia’s disability framework fragmentation.current model separates across:

  • NDIS State Health Systems Mental Health Systems

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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. P…ople with complex disabilities experience overlapping needs. an acquired brain injury cannot be separated from:
  • mmental health;
  • bbehavioural regulation;
  • aaddiction vulnerability; cognitive functioning; housing stability; social isolation; ttrauma; pphysical health; ffinancial vulnerability; or njustice 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,ser vice s duplicate administration while leaving core needs unmet,critical responses occur instead of preventative care,vulnerable participants are discharged between systemsn o agency takes overarching responsibility,andfamilies are blamed when systems fail.The current framework rewards bureaucratic separation instead of coordinated outcomes.

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, homeliness, 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 peopleThis approach is economically inefficient and morally indefensibleThe long-termcost\o f untreated disability complexity ultimately falls elsewhere:emergency departmentspolice attendanceincarcerationhomelessness serviceshospital admissionsguardianship applicationscrisis accommodationfamily breakdownsuicide attemptsandintergenerational traumaAustraliais currently paying fore fragmentation many timesover. This isthereal costsavings can be achieved

The Need for a Single Cohesive Disability Framework

Australia requires a nationally cohesive disability support framework administered at Commonwealth level. There must be an overarching system to ensure clear responsibility and accountability, as well as integrated coordination among:

  • 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 cannot function separately due to increasing complexity in physical,* neurological*, cognitive,** and social needs of people with disabilities. Similarly,* older Australians develop disabilities requiring coordinated long-term supports. The artificial divide between these two systems creates additional fragmentation,* funding disputes,* inconsistent standards, doctrine disruption during periods when transitioning from one service model to another can cause enormous anxiety for families because their care needs do not change abruptly upon reaching certain ages. Support should operate on the continuum across lifespan within unified national system where all aspects such as:disability supports*, ageing supports,, homecare,,, community participation,,,, behavioural supports****are interconnected*****.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 recognize that disability is not static.People move through different stages of stability, crisis, rehabilitation, relapse, grief, recovery, and aging.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 CentralOne 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;- crisis responses.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 areaswithin disability service delivery. Many people with ABI present with: impaired insight; external dysregulation; ipulsivity; egression; poor executive functioning; ddiction vulnerability; social disconnection; rduced decision-making capacity;and ehavioural instability.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 189

These impairments are frequently misunderstood as deliberate behavioral 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 live meaningful connected participatory lives. Disability support cannot be reduced to medical appointments therapy sessions behaviour management or crisis responses alone.Life is not simply attending allied health and medical appointments. Life is: - participating in community;- building relationships;- volunteering;- engaging recreation hobbies;- maintaining social connection;- pursuing interests goals;- participating sport creative activities;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 189

  • contributing to society;
  • experiencing dignity, purpose and belonging. For many participants, particularly those with acquired brain injury, neurological conditions, spsychosocial disability, degenerative illness or social isolation, community participation gsupports are not optional extras. Theypare essential protective factors.Socialandrecreationallife reduces: isolation; depression; bbehavioural escalation; dmental health deterioratiion; esubstance abuse relapse; uisuicidality ; anlong-term dependence on crisis systems.Meaningfulengagement incommunitylife builds confidence identity routine resilience independence , emotional wellbeing.Yet increasingly communit accessandsocia participa funding aften viewed assecondaryor non-essential componentsofdisability support.This approach fundamentally misunderstandsthe purpuse disabilitysuppor.The goal odisable services shouldnot simply be maintenanceo impairment.TThegoal shouldeabling people toparticipateas fully possiblein lifeandcommuni.I strongly believe future reforms must preserve and strengthen fundingsfor:community acceserecreational partipationvolunteeringskill developmentsocial connectionpeer suppotcultural paricipationsupported employment pathways;anmeaningful comunity engagement.Thes supports often the very things that prevent deteriorationisolationinstitutionalisatior repeated crises.A truly humane disable systemmust recognizethat quality of lifematters.Peoplewith disabling deserve opportunities noremerly to existbutto live.

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 responsibilities 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.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 behavioral, nervological, 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,andtheN DIS creates unnecessary duplication,delay s.administrative burdenand inequity.Families are often forcedto independently coordinate:

  • speechtherapy;
  • occupationaltherap y ;
  • psychology;- physiotherapy;-behaviouralsuppo rts,-learningsupports ,-paediatri cservices; -disability fundingsystems .This fragmented model disadvantageschildren duringth e most criticaldevelopmental years.Schoolsandeducationalsettingsare thelogicalcentralpointf or coordinated earlyintervention-and allied healthdelivery because they ar ethe environments wherechil dren spend the majority of their timewhere development al,b ehaviora l,social,a nd learning challengesar en oft en first identified.I stronglysupport reformswherestatesares fully funded throughCommonwealtharrangements to provide integ ratedallied healt h an de arly intervent ionservices directly withineducation system s.This should include:- multidisciplinary all ied heal thteams embeddedwithin schools ;-streamlined access tot herapy ser vices;-in tegrateddev ertmentalassessments;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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; emental 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.

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.

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 organizations, sole traders, micro-providers, and independent support workers play critical roles within disability ecosystems. They often provide:

  • greater flexibility;
  • continuity in relationships;
  • cultural understanding;
  • specialist lived experiences;
  • innovative approaches;
  • connections to communities;
  • low overheads; and more personalized care services.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

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;andOperational 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 sustainabilityReduce exploitationMaintain workforce flexibilityImprove affordabilityAnd 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 Regional Decision-MakingOne of the greatest frustrations experienced By participants,families,carers.providers.andfrontline workers is the lack Of accessible consistent relationship-based communication withinThe current ndis administrative structure.Over time,the system has increasingly shifted toward centralised remote highly controlledcommunication models That often leave Participants unable to speak directlyWith planners decision-makers or individuals Who understand their circumstances.The result Is a System many families experience as impersonal inaccessible adversarial And disconnected from the realitiesOf everyday life.The current Approach Often operates in A mannerThat prioritises distance Administrative containment over Genuine human engagement problem solving.This

Is dangerous for vulnerable participants particularly thosewith:

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 189

  • acquired brain injury;
  • psychosocial disability;
  • intellectual disability; complex behavioral 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; is 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 interstateorin major metropolitan centres with little or no understanding of local geography,workforce shortages, transport limitations,housing availability,cultural considerations ,ormeet community realities.This results in planning decisions thatare disconnected from practical reality.For example,participants may receivetransport funding designedfor rideshare ortaxi usagedespiteliving incommunities whereno taxioriseshare servicesexist.Similarly,rigid monthlyfunding allocation modelsoften failparticipan tswith fluctuatingsdisabilities,behavioral instability,episodic mental healthconditions,n eurological disorders,orc risis-drivensupport needs.Dis ability does not always operate accordingto predictablemonthly schedules.Supportsystemsmustbeflexibleenoughtorespondtop eriodsof escalationinstabilityillness,griefhospitalisationbehavioraldeterioration orc hangingfunctional capacity.Loc ally embedded staff witgh genuinecommunity knowledge ar efar better positionedtounderstandpracticalbarriersidentifyrealisticserviceoption scoordinateinformalandformalsupportsb uildcollaborative relationshipsandsup portcr isisp revention;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 189

  • Reduce Administrative Burden on Participants and Families: Simplify assessments, reporting, reviews, service navigation. Prioritise Prevention Over Crisis Response: Invest: Early intervention stable housing behavioral supports coordinated care prevent escalation homelessness incarceration hospitalization suicide. Reform Revenue Taxation Sustain Disability Supports: Australia must honest national conversation about essential funding long term modern system cannot sustainably maintained through piecemeal budgeting political cycles while concentration corporate super-profits continue increase strongly taxation revenue reforms allow fully funded health mental health housing communities future generations includes consideration:
    • stronger tax excessive corporate multinational profits;
    • fairer resource sector super-profits;
    • sovereign investment models linked natural resources wealth;
    • closing corporate tax minimisation loopholes;
    • ensuring large corporations contribute proportionately support Australians; direct defined portion of national wealth into disability community sustainability. Australia wealthiest world vulnerable people families routinely forced crisis because systems underfunded fragmented reactive not financial burden Productivity Commission shown cost benefit nation-building social infrastructure.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 189

Strong disability\nsystems reduce long-term expenditure \nacross emergency healthcare, homlessness, justice, incarceration, crisis accommodation, child protection, an d welfare dependency. Investmentincoordinateddisabilitysupportcreates healthier families,saf er communities , increased participation,and betterlong-termeconomic outcomes . Thecurrentgenerationofchildrenandyoungadultswith dis abilitydeserve certaintythat properlyfundedsupports will existnotonlynow,butforthenext$^{[1]}{ }_{^{{}}}$yearsabeyond.Long -termsustainable fundingmustbecomeanationalpriorityratherthanarecurringpolitical debate. Conclusion Aftermore than40 yearsworking inthe disable sssectorandedecadescaringfor familymembers withcomplex disabilities,IbelieveAustralia hasreached acriticalpoint.The currentfragmentedsystemisanotsustainable.Itplacesimpossibleburdenson participants,families,c arers andfrontlineworker s.T he separation of disability-related services across multiple jurisdictionsandsy stems creates dangerous gaps wherevulnerable people areleft unsupportedwhile agencies dispute responsibility. Disabil itydosest notexist inseparate categories.Neither shoulddisablessuppor ts.Australia needsa compassionate accountable,nationallyintegrateddisabled framework that placeshumanwellbeingabovebureaucraticdivision.F amiliesshouldnothavetospendyearsfighting systems whiletryingtokeeptheirlovedones safe.Peoplewithdisability deserve coordinated support,dignity, stability,a ndcontinuityo fcare.Th e curre nstructuredoesnotinconsistentlyprovidethis.Meaningful reformrequires courage tomove beyond fragmented governance modelsandbuild a genuinely integrated national disabledsupportsystemthat isfit for purposeforthefuture.Submitted respectfully,–”