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 an NDIS participant due to acquired brain injury. My sons live with ASD (severe autism spectrum disorder), intellectual disability, anxiety OCD obsessive compulsive disorder) complex medical needs significantly impacted their lives As family we experience firsthand realities pressures navigating system while trying maintain stability safety quality our life We about hour outside Adelaide travel difficult exhausting Family accessing services appointments therapies support already places considerable strain particularly regional barriers complexities coordinating care multiple people disabilities While I support genuine efforts prevent fraud exploitation misuse within NDIS concerned reform risk placing disproportionate scrutiny burden ourselves especially those have complex permanent disabilities Australia has previously experienced significant failures government compliance most notably Robodebt scandal That demonstrated serious harm can occur when cost control automation standardised assessments administrative efficiency prioritized ahead individual circumstances procedural fairness human oversight Concerning governments historically struggled adequately address large scale fraud waste other sectors including corporate tax avoidance wage theft procurement consultancy blowouts inappropriate Medicare billing yet some strongest compliance reassessment measures now being directed toward disabled Australians rely essential supports participate daily The existence fraudulent activities in should not be used justify reforms that unintentionally make access harder legitimate participants reduce supports through overly rigid assessment systems Fraud prevention focus primarily on unethical providers

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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 standardized 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 later finding out that these still did contain information required by NDIA. As participants and family advocates are often unclearly told what was considered as being insufficient in terms of information provided, refused decisions made. This creates confusion, distress repeatedly costs already under pressure.It’s difficult knowing how ensure reports meet expectations set forth by Occupational Therapists who write them determining essential support yet many cases they had limited face-to-face involvement compared therapists such

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

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 then we were told our concerns dismissed. Despite this significant changes were made supports including removal some therapies decision stating both son only require limited 1-1 support few hours per day with remaining support delivered at a ratio This extremely concerning frightening family group-based ratios always appropriate safe people severe autism intellectual disability language disorder anxiety OCD communication difficulties sensory regulation complex behaviours or support requirements Reduced individual support can increase distress dysregulation social withdrawal behavioural escalation risks safety inability communicate needs effectively ability access community safely reduced capacity participate therapy appointments meaning activities There also major inconsistencies between planners One sons previous planner recognised realities regional living approved support hours accounted travel time newer removed these entirely fortnightly banking support Planner provided shorter year allowed opportunities adjustment another who made without consultation youngest placed onto five-year This extremely frightening if inappropriate harmful now forced lengthy review processes tribunal proceedings simply seek reconsideration essential supports

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

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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,ut not every incorrect invoice or administrative mistake is intentional fraud.Sometimes genuine errors occur,such as participant or provider uploading the wrong invoice making simple mistakes without dishonest intent.I worry broad fraud figures used create fear negative public attitudes toward disabled people NDIS participants generally.This contributes stigma can make participants families feel blamed viewed suspicion simply require support.Another major concern complaints review process.Families spend enormous amounts time making complaints gathering evidence requesting reviews advocating basic supports.Often complaints acknowledged may even told processes followed correctly yet nothing meaningful changes unless participant family does all additional work pursue formal reviews themselves.Many families contact Members Parliament desperation concerns referred backNDIA which often organisation struggling with leaves families feeling unheard powerless trapped exhausting administrative processes while still managing complex care responsibilities everyday.Many families supporting NDIS participants already provide extraordinary level unpaid care coordination advocacy over decades little informal support network remaining around them.In many cases extended family never available lost burnout ageing isolation financial pressure intensity long-term caring responsibilities.It deeply concerning current reform discussions assume families absorb additional responsibilities when participants lose supports community access.As parents lifelong carers undertake extensive unpaid labour daily including cooking meals administering medications coordinating support workers services attending meetings medical appointments travelling distances to specialist supports household responsibilities therapy literacy development home real-world settings overseeing multiple NDIS budgets.Alongside this continue trying maintain role parent partner and community contributor left full-time career education more than three decades due

Submission

responsibilities and have volunteered my time on committees aimed at improving the NDIS csystem itself. Families like mine are already saving governments substantial amounts of money through unpaid labor 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 familes alread operating beyond capacity.Respite community supporstes arnot optional extras fo familys living with complex disabilities; they a essential suports th help sustian caring relationships family stability nd lnterm particiant wellbeing.For many carers and parnets resipt is te difference between coping complete exhaustion.It provides tme recover physically emotionally maintain reltionships attend other familia responsibilities continue prvidng high levels unpaid care safely sustainably.Without these supports families face increased burnout isolation mental health stran breakdown of caring arrangements.Reducing reipet or communty participatino supports doest remove nee fcar it simple transfers greater pressure ontalready exhuasted families increase risk long term crisis outcomes ultimately more harmful costly for both families broader system.In m own family these supports played critical role helping us remain connected maintin stablity contine caring our adult sons home within the commuity.One greatest fears many ageig parent and carers carry what will happen to children when we no longer here advocate coordinate protect hold their lives together.For decades families filled gaps in systems through unpaied labour emotional support constant oversight.Policies that reduce supports assume families can indefinitely absorb increasing responsibilites fail recogniztehats carers themselves ager become exhausted wll not always be physiically able continute carrying loads.Sustainable disability policy must consider not only current supporst but lngterm security dignity safety participants after parents primary carers are no longer able provide intensive suport. Many familes providing lifelong disabiltiy care experience significant financial strain reduced workforce participation, nd lnterm personal sacrifice inorder sustain support fo their

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 167

family members. In this context, it is important disability policy decisions made with a strong sense proportionality fairness ensuring cost-control measures do not disproportionately fall on some most vulnerable members in government while systemic inefficiencies elsewhere equally addressed. I also wish raise concern about consultation process itself Many NDIs participants live disabilities cognitive impairments psychosocial chronic illness communication barriers fatigue executive functioning difficulties high daily support needs Despite expected review lengthy legislative material understand complex policy legal changes prepare formal submissions within very limited timeframe This creates significant inequity within consultative process people directly affected reforms least practically able participate fully without substantial support time advocacy assistance accessible materials Genuine consultation disabled Australians must account these barriers ensure accessibility adequate timeframes meaningful participation built into legislation I urge Committee to ensure participant rights procedural remain central all reforms independent review appeal mechanisms protected assessment tools methodologies transparent reforms create Robodebt-style harms through over-standardisation automation anti-fraud efforts focused providers organised exploitation rather than creating additional barriers participants greater consistency between planners decision-makers mandatory disability-specific training staff and planners proper understanding autism intellectual acquired brain injury anxiety OCD,psychological disability complexity regional families face travel stronger protections recognition medical often closely connected supports protection community participation transparency evidence report requirements clearer explanations for decisions refusals recognition of from long-term treating therapists allied health professionals processes reduce stress uncertainty repeated reassessment administrative burden

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

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, redacted: s45 - Material obtained in confidence:

• 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