NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 – Senate Submission Template

Before You Start

You do not need to complete every row.

Pick the changes that affect your life and leave / delete the rest.

A submission discussing one issue in detail is often more valuable than a submission that briefly touches on twenty different topics.

You don’t need to understand every section of the Bill, read all 113 pages of legislation or become an overnight policy expert.

The purpose of this table is simply to help you identify the changes that matter to you and put your concerns into your own words.

Parliament already has access to lawyers, economists, public servants and policy advisers.

What it doesn’t have is your story. Your expert evidence in living with disability.

Even one page or a few lines describing how one proposed change would substantially and adversely affect your child, your family or your future and in the long run will cost the Government more, is a valuable contribution to the Senate Inquiry.

Access and Eligibility

become a participant of

the scheme.

A child may appear capable during a short assessment but require significant support to function safely every day.

The assessment tool has not yet been released and it is unclear who will administer it.

Instead of clinical information from qualified allied health professionals who know the participant, access decisions may rely more heavily on a standardised assessment which may involve automation.

I experience significant and ongoing impairments in my functional capacity that affect every aspect of my daily life. My disabilities impact my ability to consistently perform everyday activities, regulate my emotions, manage stress, process information, maintain routines, organise tasks, and participate independently in the community.

I experience daily mental, emotional, and physical challenges that create substantial limitations in my functioning. These challenges affect my ability to:

• Establish and maintain daily routines.
• Regulate my emotions and nervous system.
• Manage sensory sensitivities and sensory overload.
• Regulate my body temperature and physical wellbeing.
• Maintain attention, concentration, and focus.
• Manage fatigue and sustain energy throughout the day.
• Plan, organise, initiate, and complete tasks.
• Participate in community activities.
• Attend appointments and engage with services.
• Leave the house independently and consistently.
• Maintain household responsibilities and daily living activities.
• Build and maintain social relationships.
• Adapt to unexpected changes or demands.

My disabilities are not experienced in isolation. The combined impact of Intellectual Disability, Autism, ADHD, and other health conditions creates compounding barriers that affect my ability to function safely and independently. Without appropriate supports in place, I experience significant deterioration in my ability to manage daily life. Tasks that may appear simple to others can become overwhelming and unmanageable. This can lead to

Increased Distress and Support Needs

increased distress, shutdown, exhaustion, reduced community participation, social isolation, declining mental health, and loss of independence. Consistent supports are essential for me to maintain my current level of functioning. I require ongoing assistance across multiple areas of daily living, including household tasks, community access, organisation, skill development, eotional regulation, and maintaining routines. These supports are not temporary or optional; they are necessary to prevent deterioration and enable me to participate meaningfully in everyday life.

My concern is that a standardised functional capacity assessment may not fully capture the fluctuating, cumulative, and lifelong impacts of my disabilities. My ability to function can vary significantly depending on stress levels, sensory demands, environmental factors, fatigue, health conditions, and the availability of supports. A single assessment conducted on one day may not accurately reflect the level of support I require to maintain my wellbeing, independence, and participation over time. For people like myself, functional capacity should be assessed through a comprehensive understanding of our lifelong disabilities, documented history, professional reports, and real-world support needs, rather than relying solely on a single assessment tool.

Evidence will be required Families may need to demonstrate that I have been diagnosed with an Intellectual Disability, around the ‘Permanence’ all reasonable treatment options have Autism Spectrum Disorder (ASD), and Attention of a person’s disability. been attempted before accessing Deficit Hyperactivity Disorder (ADHD). These are There will be a supports. This may disadvantage people lifelong neurodevelopmental disabilities that have been requirement to exhaust ‘all where treatments are unavailable, present since childhood and continue to significantly appropriate treatment’ unaffordable, unsafe, ineffective, impact every aspect of my daily life. These conditionsbefore NDIS eligibility is culturally inappropriate or create confirmed. significant side effects. To gain access,

participants may have to undergo medication, therapy, or other forms of treatment. e ‘treatment’ including surgeries, medication and therapies that may be My disabilities affect how I process information, learn, harmful. communicate, regulate emotions, manage daily tasks, interact socially, and participate in my community. It also raises difficult questions about The impacts have been present throughout my life and where the line sits between an are documented through educational records, medical “appropriate” treatment and a treatment records, specialist assessments, psychological reports, a person does not wish to undertake. and observations from multiple professionals over many years. Could a participant be required to trial certain medications before accessing certain supports? Could a family be I have undergone extensive assessment and expected to pursue surgery, intensive intervention throughout my life. I have engaged with therapy or another intervention they General Practitioners, Psychologists, Psychiatrists, believe is unsuitable, ineffective or Speech Pathologists, Physiotherapists, and other health carries unacceptable risks? professionals. I have trialled multiple medications, therapies, behavioural strategies, organisational Where people have a rare condition or systems, calendars, reminders, routines, dietary diagnosis, many experts don’t know approaches, subscriptions, and support services in an what treatment will be beneficial or effort to improve my functioning and independence. effective. Because the NDIA can no longer take Despite these efforts, my Intellectual Disability, into account a person’s environment (i.e. financial status) this may mean that if Autism, and ADHD remain permanent disabilities that they cannot afford a specific treatment continue to create substantial functional impairments (to prove that it is not effective), they across all areas of life. cannot access the NDIS. Due to my Autism, ADHD, Intellectual Disability, epilepsy, and sensory sensitivities, I am highly sensitive to medications. Some medications have increased my sensory overwhelm, heightened my stress response, worsened my neurological symptoms,

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and contributed to seizures. At times, medication trials have had serious negative consequences on both my physical and mental health.

One particularly significant period resulted in multiple presentations to the Emergency Department within approximately two weeks due to severe deterioration in my wellbeing. This ultimately resulted in admission to a psychiatric ward. This experience was traumatic and is something I never wish to experience again.

My experience demonstrates that further treatment is not always appropriate or safe simply because it exists. Any future treatment options must be considered in the context of clinical safety, previous adverse reactions, and the known risks to my health and wellbeing. With the right disability supports in place, many of these crises can be prevented.

While treatments, therapies, medications, and interventions may provide strategies and support, they do not remove the permanent nature of my Intellectual Disability, Autism, or ADHD, nor do they eliminate the substantial functional impacts these disabilities have on my daily life.

Functional Impact on Daily Living

My disabilities significantly impact my ability to

function independently in daily life.

I experience ongoing difficulties with:

• Memory and information retention.
• Executive functioning, including planning, organising, prioritising, initiating, sequencing, and completing tasks.
• Time management and maintaining routines.
• Learning new skills and retaining previously learned skills.
• Problem-solving and decision-making.
• Understanding and processing information.
• Emotional regulation and coping with stress.
• Managing sensory sensitivities and sensory overwhelm.
• Communication and expressing my needs effectively.
• Understanding social expectations and social cues.
• Building and maintaining friendships and relationships.
• Community participation and independent access to the community.
• Managing appointments, paperwork, forms, and administrative responsibilities.
• Household management and daily living activities.

My disabilities affect my ability to consistently complete many everyday tasks required to maintain

Impacts on Daily Living

These impacts include difficulties with:

• Maintaining personal care and hygiene routines consistently.
• Remembering daily self-care tasks.
• Planning, preparing, and cooking meals.
• Grocery shopping and food planning.
• Remembering to eat regularly and appropriately.
• Making healthy and balanced food choices.
• Managing household cleaning tasks.
• Maintaining a safe and hygienic living environment.
• Washing, drying, folding, and putting away laundry.
• Organising and maintaining household items.
• Gardening and outdoor household maintenance.
• Managing waste, bins, and general household upkeep.
• Managing finances, bills, and important paperwork.
• Completing tasks within reasonable timeframes.
• Transitioning between activities and managing competing priorities.

While I may understand that tasks need to be completed, I often struggle with initiating, organising,

**Impact on Daily Functioning

**

My intellectual disability, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD) significantly impacts my capacity for independent living.

I face challenges in sequencing, remembering, and sustaining the actions required to complete them independently. Tasks can quickly become overwhelming, resulting in avoidance, shutdown, emotional distress, or incomplete completion.

My sensory sensitivities can further impact my ability to complete daily activities. Noise, smells, textures, lighting, temperature changes, and environmental demands can contribute to sensory overload, exhaustion, increased anxiety, and reduced functioning.

These difficulties are not due to a lack of motivation or unwillingness. They are a direct result of the functional impairments associated with my Intellectual Disability, Autism, and ADHD.

Impact on Education, Employment, Relationships, and Community Participation

My disabilities have affected me throughout school, study, employment, family relationships, friendships, romantic relationships, and community participation.

I experience difficulties understanding social cues, body language, hidden meanings, implied expectations, and social rules. I often find myself

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                                           constantly analysing and decoding interactions in an
                                                effort to understand what others mean. This process
                                     can be mentally exhausting and contributes to
                                         misunderstandings, social anxiety, and difficulties
                                        maintaining relationships.

                                       Executive functioning challenges create barriers in
                                          education, employment, and self-employment. Tasks
                                               that may appear simple to others often require
                                              significant effort, support, structure, and repetition for
                           me to complete successfully.

                                     Without appropriate support, I can become
                                   overwhelmed by everyday responsibilities, resulting in
                                          increased stress, reduced participation, loss of
                                         confidence, and difficulties maintaining independence.

                      Supports Required to Safely
                          Participate in Daily Life

                               Due to the permanent impacts of my Intellectual
                                              Disability, Autism, and ADHD, I require ongoing
                                         support to safely participate in daily life and maintain
                          my wellbeing.

                                                      I require support with:

                            - Personal care routines and hygiene.
                            - Establishing and maintaining daily routines.
                            - Meal planning and preparation.

• Developing and maintaining healthy eating

habits.

• Grocery shopping and food organisation.
• Household cleaning and domestic tasks.
• Laundry and clothing management.
• Gardening and outdoor maintenance.
• Managing appointments and schedules.
• Completing forms, paperwork, and

administrative tasks.

• Understanding important information and

making informed decisions.

• Organising responsibilities and daily tasks.
• Accessing services and advocating for my

eeds.

• Building strategies to manage executive

functioning difficulties.

• Managing sensory overload and emotional

regulation.

• Maintaining health and wellbeing routines.

Without support, these areas can quickly become overwhelming and lead to poor nutrition, reduced self- care, declining household conditions, increased stress, emotional distress, and a deterioration in both physical and mental wellbeing.

Participation

I require support to safely access and participate in my community.

My disabilities affect my ability to independently navigate unfamiliar situations, process information, manage social interactions, adapt to change, and cope with sensory demands within community environments.

Community access supports assist me to:

• Attend appointments and important services.
• Participate in social and recreational activities.
• Access local facilities and community programs.
• Engage in volunteering, employment, and self- employment activities.
• Build confidence in community settings.
• Reduce isolation and increase social participation.
• Develop and maintain meaningful relationships.
• Participate safely in every day community life.

Without support, community participation can become overwhelming and lead to withdrawal, isolation, reduced confidence, and decreased quality of life.

Supports Required for Capacity

Building and Skill Development

Capacity-building supports are essential because my disabilities affect both my ability to learn new skills and my ability to maintain existing skills.

Due to my Intellectual Disability, Autism, and ADHD, I often require information to be repeated, broken don into smaller steps, practised over time, and reinforced consistently. Skills learned in one environment do not always automatically transfer to another environment without support.

I require support to:

• Learn and develop daily living skills.
• Build independence in household management.
• Develop cooking and meal preparation skills.
• Improve organisational and executive functioning skills.
• Strengthen communication and social skills.
• Develop problem-solving and decision-making skills.
• Build confidence and resilience.
• Maintain existing skills and prevent skill regression.
• Increase independence while recognising the ongoing impacts of my disabilities.

Without ongoing support, I am at risk of losing skills, confidence, independence, and community participation.

Why Ongoing NDIS Supports Remain Necessary

The purpose of NDIS supports is not to cure my Intellectual Disability, Autism, or ADHD, as these conditions are permanent. Rather, NDIS supports are necessary to help me build capacity where possible, maintain existing skills, increase independence, reduce isks, and participate safely in everyday life.

I have already participated in extensive assessments, terventions, therapies, medication trials, and support services throughout my life. While these have provided strategies and support, they have not removed the substantial and lifelong functional impacts of my disabilities.

Ongoing NDIS supports are essential to assist me to:

• Maintain my independence.
• Participate safely in my community.
• Build and maintain life skills.
• Access services and supports.
• Maintain safe and healthy daily living routines.
• Reduce the risk of crisis, hospitalisation, and mental health deterioration.

• Prevent loss of functioning and skills.
• Maintain social connections and relationships.
• Support employment and self-employment participation.
• Improve my overall wellbeing and quality of life.

Without appropriate supports, I would experience a significant decline in my ability to function independently, participate in my community, maintain my wellbeing, and live a safe and meaningful life.

My experience demonstrates that while treatment and intervention can provide support and strategies, they do not change the permanent nature of my Intellectual Disability, Autism, and ADHD, nor do they remove the substantial functional impairments that make ongoing NDIS support necessary. The supports I receive are essential for me to safely participate in daily life, access my community, maintain my wellbeing, and continue developing and retaining the skills needed to live as independently as possible.

Capacity Eligibility Framework from January 2028

capacity eligibility psychosocial, fluctuating or difficult to not a luxury; they are essential for my daily functioning, framework from January measure using standardised tools. wellbeing, independence, and safety. 2028. Families are concerned children and Without appropriate supports, I experience significant Some may lose their young people who currently receive declines in my ability to function across all areas of life. My access in this process. support could lose access despite no disabilities affect my ability to manage daily living tasks, improvement in their disability or maintain routines, regulate emotions, manage sensory functional capacity. overload, participate in the community, maintain We don’t know what assessment tool relationships, and look after my overall health and will be used for this eligibility process, wellbeing. what evidence participants can provide The thought of losing my supports causes genuine concern and if there are any appeal rights. that I could return to some of the darkest periods of my life, There doesn’t appear to be any other where I experienced significant mental, emotional, and Foundational Supports in place for those physical deterioration. The supports I receive help prevent who are exited from the NDIS. crisis situations, reduce risks, maintain my independence, and allow me to participate meaningfully in my community. The NDIS often speaks about reducing risk, preventing deterioration, building capacity, and supporting people whose disabilities create substantial functional impairments. Requiring existing participants with lifelong disabilities to repeatedly prove their eligibility appears inconsistent with these principles. Instead of reducing stress and risk, it creates additional anxiety, uncertainty, and emotional burden for people who already face significant challenges because of their disabilities. Many participants, including myself, are already required to continually gather evidence, attend assessments, advocate for our needs, and justify supports that have previously been recognised as necessary. This process can be exhausting, overwhelming, and costly, both financially and emotionally. I was born with permanent neurodevelopmental disabilities. My Intellectual Disability, Autism, and ADHD are lifelong conditions. They cannot be cured, treated away, or outgrown. While supports can help me build skills, increase

Functional Capacity Will Be Assessed With Reduced Consideration Of Environmental And Personal Circumstances (s9b)

I believe it is important for all Australians that we are supported to achieve independence, and improve my quality of life, they do not remove the underlying disabilities or the functional impairments I experience every day.

I am concerned that reassessing people with permanent disabilities under a new framework may result in individuals losing access to supports they rely on to remain safe, independent, and connected to their communities. This creates unnecessary fear for people whose disabilities are already well documented and whose need for ongoing support has already been established.

For people with permanent neurodevelopmental disabilities, the focus should be on ensuring continuity of support, maintaining stability, and preventing decline, rather than creating additional barriers to accessing the supports that enable us to live meaningful and productive lives.

My disabilities are permanent. My support needs may change over time, but my need for disability support does not disappear. The NDIS should recognise this reality and provide certainty and security for participants with lifelong disabilities, rather than requiring them to repeatedly fight to prove the existence and impact of conditions that will never go away.

This bill seeks to assess a persons functional capacity without taking into account environmental factors such as their financial circumstances, their home environment or the assistive technology they use.

I am concerned by the proposal that functional capacity assessments will place reduced consideration on environmental and personal circumstances.

I do not understand how a person’s functional capacity can be accurately assessed without considering the environment they live in and the supports they rely on. For many people with disabilities, our environment directly affects our ability to function, participate, and remain safe.

Two children with the same diagnosis can have vastly different support needs depending on poverty, housing, transport, family supports, family

As an Autistic person, environmental factors have a significant impact on my daily functioning. I recently moved house because the sensory demands of my previous

violence, culture, geography and access environment were contributing to sensory overload, stress, to services. Ignoring context risks underestimating need. underestimating need. Some of these stressors, it has not removed my disabilities or eliminated my support needs. Even in a more suitable environment, I continue to experience substantial difficulties with daily functioning due to my Intellectual Disability, Autism, and ADHD. I still require supports, strategies, accommodations, and tools to manage everyday life. For example, due to communication difficulties, information processing challenges, executive functioning impairments, and periods of shutdown, I regularly use AI- based tools to help organise my thoughts, process information, communicate more effectively, and express my needs. These tools have helped reduce some of the overwhelm I experience and have allowed me to participate more effectively in conversations, appointments, advocacy, and daily tasks. However, using these tools does not remove my disabilities. It simply provides an accommodation that helps me function more effectively in some situations. I continue to experience significant difficulties in many other areas of life, including:  Household management.  Cleaning and maintaining my home.  Meal planning and preparation.  Remembering to eat and drink regularly.  Maintaining personal hygiene routines.  Managing fatigue and burnout.  Organising daily responsibilities.  Completing administrative tasks.  Maintaining consistent routines.  Managing work and self-employment responsibilities.

Without the appropriate supports in place, I can quickly experience burnout, overwhelm, shutdown, and a decline in functioning. During these periods, I neglect basic needs such as eating, drinking enough water, personal hygiene, household cleaning, and other essential daily tasks. These difficulties are not caused by a lack of motivation or effort. They are directly related to the functional impacts of my Intellectual Disability, Autism, and ADHD, particularly my executive functioning difficulties, sensory processing challenges, memory impairments, and communication barriers. Environmental factors, support systems, accommodations, and assistive tools play a critical role in determining how well I am able to function on any given day. If these factors are ignored during a functional capacity assessment, the assessment may fail to accurately reflect my actual support needs and the reality of living with lifelong disabilities. For many people with disabilities, functioning is not determined solely by the person. It is influenced by the interaction between the individual, their disability, their environment, and the supports available to them. Removing or reducing consideration of these factors risks creating an incomplete and inaccurate picture of a person’s true functional capacity and support needs. My concern is that assessments which do not adequately consider environmental circumstances, support systems, accommodations, and assistive tools may underestimate the level of support required to maintain safety, wellbeing, independence, and participation in daily life.

Functional capacity Some people have good days and bad I am concerned that a functional capacity assessment may assessments may not days. Others can temporarily mask not accurately capture the reality of living with disabilities adequately capture difficulties during assessments. Families that are not always immediately visible to others. fluctuating or non- are concerned assessments may capture Many of my struggles are not obvious during a short

apparent disabilities (s9B)

what a person can do briefly rather than assessment, appointment, or conversation. To truly what they can safely and consistently understand the impact of my disabilities, someone would sustain in daily life. need to spend a significant amount of time with me across One day snapshots do not take into different environments, situations, and days. A brief account the cumulative effect of assessment may only capture how I present in that moment, disability and carer roles. rather than the ongoing challenges I face every day. I can appear more capable than I actually am. Throughout my life, I have learned to hide, compensate for, and work around many of my difficulties. This is commonly referred to as masking. Masking involves consciously or unconsciously suppressing difficulties, forcing myself to meet expectations, and attempting to appear as though I am coping better than I really am. While masking may help me get through certain situations, it comes at a significant cost. It is mentally, emotionally, and physically exhausting. The effort required to appear capable often contributes to burnout, overwhelm, shutdowns, increased anxiety, and reduced functioning once I am no longer able to maintain that level of effort. I frequently find that when I try to explain my struggles, they are dismissed because people only see the outcome and not the effort, support, processing, and exhaustion that occur behind the scenes. This can leave me feeling invalidated, misunderstood, and as though I am asking for too much when I am simply trying to explain the reality of living with my disabilities. Many people see me complete a task but do not see:  How long it took me to start the task.  The amount of prompting or support required.  The mental energy involved.  The recovery time needed afterwards.  The tasks that were neglected in order to complete that one task.  The emotional and physical impact of pushing

As someone with an Intellectual Disability, Autism, and ADHD, I spend a significant amount of time every day processing information, managing sensory input, regulating emotions, planning tasks, adapting to change, and trying to navigate social expectations. Much of this work is invisible to others.

Recently, I have begun to recognise that my support needs may be higher than I previously understood. For many years I have pushed myself beyond my limits, believing I should be able to cope independently. However, I am increasingly aware of the significant amount of support, accommodations, strategies, and effort required for me to complete tasks that others may take for granted.

The true impact of my disabilities is not measured solely by whether I can complete a task. It is also measured by:

• How long the task takes.
• How much support is required.
• The level of exhaustion it creates.
• Whether I can complete the task consistently.
• The impact it has on my ability to complete other tasks.
• Whether I can maintain that level of functioning over time.

Without the insights of people who know me well, such as my Support Coordinator, therapists, support workers, and others who regularly observe my functioning, a one-off assessment may fail to capture the extent of my daily challenges and support needs.

I am concerned that functional capacity assessments may place too much emphasis on what a person appears capable of doing during a brief assessment rather than what they can realistically and sustainably do in everyday life. For people who mask, have fluctuating support needs, or have non-

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                                                               apparent disabilities, this creates a significant risk that our
                                                            needs will be underestimated and our supports reduced or
                                                          removed.
                                      My disabilities are present every day, even when they are
                                                                not visible. The fact that I have developed ways to survive
                                                        and cope does not mean I am functioning without difficulty.
                                                                 Often, it means I am working much harder than others just
                                                                       to achieve basic daily tasks, and that effort comes at a
                                                                        significant personal cost.

To be funded, support Families may be forced to prove exactly I am concerned about the proposed requirement that needs must arise ‘directly’ which impairment causes which support support needs must arise “directly” from an NDIS-eligible from an NDIS-eligible need. Supports that arise from the impairment. impaired (s34(1)(aa)) combined effect of multiple disabilities, As a person with an Intellectual Disability, Autism, and medical conditions or life circumstances ADHD, my disabilities do not exist separately from one may become harder to justify. another. They interact and overlap in ways that affect every aspect of my daily functioning. It is often impossible to In reality, disability is rarely that neat. identify which disability is responsible for a particular difficulty because the impacts are cumulative and A child may have autism, intellectual interconnected. disability, ADHD, epilepsy and anxiety. Is the need for supervision caused by the prepare meals, complete household tasks, manage autism? The epilepsy? The intellectual appointments, participate in the community, regulate my disability? The anxiety? An unrelated emotions, or maintain employment, these difficulties are not early childhood trauma? Or the caused by one disability alone. They are the result of the interaction between all of them? combined impacts of my Intellectual Disability, Autism, ADHD, executive functioning impairments, sensory sensitivities, communication difficulties, memory A child with a rare genetic condition challenges, and emotional regulation difficulties. may experience a unique combination of Attempting to separate support needs into categories and physical, cognitive, behavioural and determine which support arises “directly” from one specific medical symptoms that do not fit neatly diagnosis does not reflect the reality of living with multiple into diagnostic categories. The support disabilities. need exists regardless, but determining Many of the supports I receive help address the overall

exactly which diagnosis the support

need ‘directly arises’ from may be next to impossible.

The question for families is whether support decisions should be based on the existence of a genuine support need, or on the ability to successfully attribute that need to a particular eligible diagnosis or impairment.

This creates a burden of evidence to prove a direct link between every support need and the disability / impairment.

For example:

• Support with meal preparation may be needed because of executive functioning difficulties, memory impairments, sensory sensitivities, difficulties planning and sequencing tasks, and fatigue.
• Support with community access may be needed because of communication barriers, anxiety, sensory overload, difficulties navigating unfamiliar situations, and challenges understanding social expectations.
• Support with household tasks may be needed because of difficulties with organisation, initiation, planning, time management, attention, memory, and maintaining routines.

These support needs arise because of the combined functional impact of my disabilities.

I am concerned that requiring participants to prove that every support arises “directly” from a specific impairment may create unnecessary barriers and lead to disputes about diagnosis labels rather than focusing on a person’s actual support needs.

The NDIS was originally designed around functional capacity and participation. What matters most is whether a person’s disability creates substantial and ongoing barriers to everyday life, not whether every individual support can be linked to a single diagnosis in isolation.

My support needs are real, ongoing, and directly related to the functional impacts of my disabilities. However, those impacts cannot always be separated into neat categories because my disabilities interact with each other every day.

I believe funding decisions should consider the overall functional impact of a person’s disabilities and how those disabilities affect their ability to live safely, independently, and participate in their community. Focusing too narrowly on whether a support arises from one specific impairment risks overlooking the reality of how disability affects people with multiple diagnoses and complex support needs. For people like myself, support needs arise from the combined and lifelong impact of our disabilities. The focus should remain on functional impairment, participation, safety, independence, and quality of life, rather than requiring people to prove which individual diagnosis is responsible for each challenge they experience.

Stronger focus on moving This section states that people should I do not believe that mainstream services can meet my general population away not be eligible to access the NDIS if disability support needs. to alternative there are other compensation or I regularly hear suggestions that people should accessunding systems. insurance schemes that could support support through their GP, a Mental Health Care Plan, or them instead. This may include the other mainstream services instead of the NDIS. While these TAC, workplace compensation schemes services may be helpful for some people, they do not and potentially even the Aged Care address the lifelong functional impairments caused by my System. Intellectual Disability, Autism, and ADHD. A Mental Health Care Plan does not assist me with the daily impacts of my permanent disabilities. It does not help me maintain my household, manage daily living activities, access my community, build independence, organise my life, maintain routines, or overcome the executive functioning, communication, sensory, and cognitive challenges I experience every day. I also cannot afford the costs associated with many mainstream services. I live on the Disability Support Pension and must cover rent, utilities, food, medication, transport, household expenses, and other daily living costs.

Even where services are partially subsidised, the gap payments often make them inaccessible to me. The assumption that people can simply access alternative services overlooks the financial reality faced by many people with disabilities. Throughout my life, I have actively sought treatment, support, and interventions in an effort to improve my functioning and wellbeing. I have tried:

• Multiple medications.
• Dietary changes and nutrition programs.
• Lifestyle interventions.
• Iron infusions and medical treatments.
• Talk therapy and counselling.
• Online programs and subscriptions.
• Hospital admissions and mental health services.
• Massage therapy.
• Hydrotherapy and water-based therapies.
• Journaling and self-management strategies.
• Medication management tools such as pill organisers.
• Visual supports and reminders.
• Allied health services.
• Psychological and psychiatric interventions. While some of these have provided minor strategies, coping mechanisms, or temporary improvements, none have removed the significant functional impairments caused by my Intellectual Disability, Autism, and ADHD. These interventions have not cured my disabilities. They have not eliminated my executive functioning difficulties, communication barriers, sensory processing challenges, memory impairments, emotional regulation difficulties, or the substantial support needs I experience every day. At best, many of these services have helped me develop strategies to cope with my disabilities. However, coping

strategies are not the same as having the support required to

function independently and safely.

My disabilities are permanent. They affect me every day, all day. They impact my ability to manage daily living, maintain my wellbeing, participate in the community, complete household tasks, maintain employment and self- employment activities, manage relationships, and carry out the responsibilities of everyday life.

The reality is that mainstream services generally focus on treatment, therapy, or crisis management. My need is not for a cure. My need is for ongoing disability support that helps me function, participate, maintain my independence, and prevent deterioration.

I am concerned that directing people with lifelong disabilities away from the NDIS assumes that mainstream services can provide equivalent support when, in many cases, they cannot. For people like myself, mainstream services may complement disability supports, but they cannot replace them.

The NDIS exists because disability support needs are different from medical treatment needs. My experience is that I have already exhausted numerous treatment options over many years. What remains is not a lack of treatment. What remains is the ongoing reality of living with permanent disabilities that require ongoing support.

Removing or reducing access to disability supports on the assumption that mainstream services will meet those needs risks leaving people without the practical assistance required to live safely, independently, and with dignity.

Stronger evidence will be Families may need to demonstrate that I am concerned about proposals that would require stronger equired around the all reasonable treatment options have evidence of the permanence of a person’s disability and ‘Permanence’ of a been attempted before accessing require people to exhaust “all appropriate treatment” before

• person’s disability.

A supports. This may disadvantage people s being considered eligible for NDIS support. requirement to exhaust ‘all where treatments are unavailable, I have an Intellectual Disability, Autism, and ADHD. These appropriate treatment’ t unaffordable, ineffective, culturally are lifelong neurodevelopmental disabilities that I was born with. They are permanent conditions that cannot be cured, fixed, or treated away. While therapies, supports, accommodations, and strategies may help me manage some of the impacts of my disabilities, they do not change the fact that I will continue to live with these disabilities for the rest of my life.

It also raises difficult questions about where the line sits between an “appropriate” treatment and a treatment a person does not wish to undertake. The permanence of my disabilities is not in question. What changes over time is the level of support I need, not the existence of my disabilities.

Could a participant be required to trial certain medications before accessing certain supports? Could a family be expected to pursue surgery, intensive therapy or another intervention they believe is unsuitable, ineffective or carries unacceptable risks?

Throughout my life, I have actively sought treatment, thearpies, interventions, and professional support. I have worked with General Practitioners, Psychologists, Psychiatrists, Speech Pathologists, and other allied health professionals. I have trialled multiple medications, dietary changes, lifestyle interventions, journaling, visual supports, reminder systems, pill organisers, online programs, counselling, hospital-based services, massage therapy, hydrotherapy, and a range of other interventions. While some of these have provided helpful strategies or minor improvements, none have removed the substantial functional impairments caused by my Intellectual Disability, Autism, and ADHD.

Due to my Autism, Intellectual Disability, ADHD, epilepsy, and sensory sensitivities, I am highly sensitive to medications. Some medication trials have caused significant adverse effects, including increased sensory overload

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heightened stress responses, worsening neurological symptoms, and seizures. At one point, the impact on my wellbeing resulted in multiple presentations to Emergency Departments over a short period of time and ultimately admission to a psychiatric ward. This experience was traumatic and had a significant impact on both my physical and mental health. Because of these experiences, I believe it is important to recognise that “all appropriate treatment” does not mean every possible treatment. What is considered appropriate must take into account clinical safety, known risks, previous adverse reactions, affordability, accessibility, and whether there is evidence that a treatment is likely to provide meaningful benefit. I also cannot afford to endlessly pursue private assessments, thearapies, and treatments. I live on the Disability Support Pension and must pay rent, utilities, food, medication, transport, and other daily living expenses. Many therapies involve significant out-of-pocket costs that are simply not realistic for me to access on an ongoing basis. There comes a point where the focus should shift from trying to “fix” a permanent disability to providing the supports needed to help a person function, participate, and live safely within their community. For people with lifelong neurodevelopmental disabilities, support should not be withheld because there are still treatments that theoretically exist somewhere. The existence of a treatment option does not mean it is appropriate, accessible, affordable, safe, or likely to change a person’s functional capacity. My concern is that these proposed changes may create barriers for people with permanent disabilities by requiring them to continually justify their diagnosis, pursue treatments that may not be suitable, or prove that they have

Exhaustion from Searching for Cures

I have spent many years trying treatments, therapies, strategies, and interventions. What I have learned is that these approaches may provide tools and coping strategies, but they do not remove my disabilities. My Intellectual Disability, Autism, and ADHD remain permanent, and the functional impacts remain present every day. The purpose of disability support should not be to require people to endlessly search for a cure that does not exist. It should be to ensure that people with permanent disabilities have access to the supports they need to live safely, maintain their wellbeing, participate in their communities, and achieve the best quality of life possible.

People may lose NDIS Families are concerned participants I am deeply concerned that people with disability may lose supports before could be found ineligible for the NDIS access to NDIS supports before alternative systems, alternative systems are or have supports reduced before services, and funding arrangements are fully established fully established replacement systems are available, and capable of meeting their needs. accessible, adequately funded and For people like myself, disability support is not something capable of meeting need. that can simply be paused while new systems are developed. My support needs exist every day. I rely on my supports to maintain my daily functioning, participate in my community, manage my household, attend appointments, maintain my wellbeing, and prevent deterioration. If NDIS supports are removed before alternative systems are available and proven to be effective, many people will be left without the assistance they need to function safely and independently.

I have an Intellectual Disability, Autism, and ADHD. These are permanent lifelong disabilities that affect every aspect of my daily life. Without support, I experience significant difficulties with executive functioning, communication, imotional regulation, sensory processing, organisation, maintaining routines, managing daily living tasks, and

participating in the community. I already know from personal experience what happens when my support needs are not adequately met. My functioning declines. Daily tasks become overwhelming. My mental and physical wellbeing deteriorates. I struggle to maintain routines, household responsibilities, nutrition, hydration, personal care, and community participation. When supports are reduced or unavailable, the consequences are not immediate convenience issues—they are real risks to my health, wellbeing, independence, and quality of life. I am particularly concerned that alternative systems are often discussed as though they already exist and are ready to support people. In reality, many mainstream services are already overwhelmed, difficult to access, have long waitlists, require significant out-of-pocket costs, or are not designed to provide disability-specific supports. Even if a support is theoretically available through another system, there is no guarantee that: - It will be available when needed. - It will be affordable. - It will be accessible. - It will understand disability-related support needs. - It will provide the same level of assistance. - It will be ongoing and reliable. As someone living on the Disability Support Pension, I cannot afford to privately fund the supports that allow me to function. I already face financial pressures from rent, utilities, food, medication, transport, and other living expenses. If my NDIS supports were removed before alternative systems were in place, I would simply go without support. I am also concerned that people with Intellectual Disability, Autism, ADHD, cognitive impairments, communication

Planning and Funding

Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know section)

Support Determinations

The Minister can make Funding for an entire category of support determinations support could potentially be reduced (decisions) which allow broad for large groups of participants reductions to support without individual assessment of need. categories (s34A) This would not occur on a ‘plan by plan’ basis. Families may lose supports that are currently working well simply because they fall within a targeted category. Not individualized. Right now, the Government is proposing a 50 % cut to social, civic, and community participation funding, and a 10 % cut to some capacity building daily activity funding. This would start from 1 October 2026 as new plan reassessments are completed. But this could be applied at up to 99% to any support category in an NDIS plan. The only limit around these cuts is that the Minister needs to ‘have regard’ for the safety of participants.

Minister may impose support Funding limits or caps can be placed caps, including for cohorts on support categories or cohorts of (s33(2EA)) participants and may be based on category averages rather than individual circumstances. This would allow the Minister to set an upper limit for a particular support. For example,  people with Intellectual Disability cannot receive

• more than 12 hours of psychology funding per year, or
• children under 9 years of age can only receive up to 3 hours of allied health support per week. Families caring for children with complex disability may be unable to access support levels that genuinely reflect their needs. Move toward more Plans may increasingly reflect what the NDIS funding model or assessment tool / report generates rather than what is actually required for safety, participation and family sustainability. We still don’t know how the Functional Capacity Assessment In the New Planning Framework will be administered and how that report will translate into a Participant Statement of Supports. Less individualized support provision. Changes to the Reasonable The threshold for what counts as and Necessary Criteria. “reasonable and necessary” is being The Bill changes the tests rewritten. planners must apply when The Bill increases the amount of deciding whether a support is support the NDIA can expect families, funded. Cost, informal carers and informal supports to supports and parental provide before funding supports. For responsibility may play a children, greater emphasis is placed larger role in funding on parental responsibility, including decisions. supervision, personal care, emotional

Repeal of section 31 - Principles relating to plans

Schedule 1, Item 66

Section 31 currently contains principles recognising participants as individuals with unique goals, aspirations and support needs. The Bill repeals most of these principles. While government states relevant principles are being relocated elsewhere, many advocates believe important protections supporting genuinely individualised planning have been weakened or lost. These principals help the NDIA and the courts to understand how to implement and protect the intention of the scheme.

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The creates a reduction of reduced. Families are concerned supports that prevent isolation children and adults could become and maintain community more isolated, segregated and inclusion disconnected from community life. Supports that appear ‘non-essential’ on paper may actually be what allows a person to maintain friendships, participate in community activities, learn life skills, develop independence and avoid social isolation. Right now the Government is proposing a 50 % cut to social, civic, and community participation funding, and a 10 % cut to some capacity building daily activity funding. This would start from 1 October 2026 as new plan reassessments are completed. Right now, we don’t know if this will apply to Core: Social and Community Participation, and Capacity Building: Increased Social and Community Participation. Children and young people may become more reliant on parents and carers for transport, community access, social activities, employment preparation and daily participation. Greater emphasis on lower- Previous planning criteria required cost alternatives when consideration of whether a lower-cost funding supports option would achieve the same or substantially similar outcome. This bill changes the terminology so that when planners are considering

Disproportionate Impact on Certain Disability Cohorts

cheaper alternatives, they no longer need to consider whether those alternatives would deliver the same or similar outcomes. Therefore, the cost of the support becomes the major determining factor rather than if they are effective or not. For example, a cheaper support worker arrangement, therapy approach or piece of equipment may be available, but it may not deliver the tsame level of independence, safety or participation. Families may wish to explain the risks that exist where a cheaper support that is less effective is funded. Disproportionate impact on Government modelling suggests some certain disability cohorts disability groups may lose a larger proportion of their current supports because a greater share of their plans allocated to social and community participation. Will this affect children more than adults? Right now children may have funding for ‘Social and Community Participation’ where that funding is actually provided so that a parent can take them to the supermarket or to a doctor’s appointment. Those outings are not focused around social and community participation and should not be subject to funding reductions simply because they occur outside the

What Will Be The Impact On Children And Young People?

When it comes to children and young people, how does the Agency intend to distinguish between Assistance with Daily Life and Social and Community Participation?

What will the gender impact be in situations where women disproportionately absorb unpaid caring burden?

Support caps and funding restrictions may push participants into more group-based support arrangements. Families are concerned that funding restrictions could make individualised supports harder to access and increase pressure toward shared or group-based service models which don’t meet the participants needs and therefore are less effective or less safe. These may also increase the need for Restrictive Practices.

Claims must be made within 90 days (currently 2 years). Commencing 1st December 2026. Unspent funds removed at plan renewal (s50A) Many NDIS plans are currently being ‘continued’ or extended. In the future, even when a plan is rolled over or not reassessed (because the participant is considered to have ‘stable support needs’) their plan will be ‘renewed’ meaning they will receive the same NDIS plan again. While I understand the intention may be to ensure funding is being used effectively, I do not believe unspent funds always indicate that a participant does not need those supports. In many cases, funding remains unspent.

Changes in Funding Carryover Rules

Unused funding will no longer be carried over into the new plan which will contain the same supports and budget (less any one-off items like Assistive Technology). That ‘renewed’ plan is not a reviewable decision because no new decision has been made. Therefore, the application for an S100 or Internal Review of a new NDIS plan will become more important.

How will this affect families who have fluctuating needs? Finding the right support is often a lengthy process. It is not as simple as contacting a provider and immediately receiving services. Many factors can delay or interrupt service delivery, including:

• Long waitlists.
• Workforce shortages.
• Difficulty finding providers with capacity.
• Difficulty finding providers with the right skills and experience.
• Support workers leaving their roles.
• Provider turnover.
• Staff illness.

• Annual leave and holidays.

• Service cancellations.

• Changes in circumstances.

• Supports that are not the right fit.

• Participants needing time to build trust and relationships with workers.

• Unexpected life events affecting either the participant or provider.

These circumstances are often completely outside a participant’s control.

For someone like me, consistency and trust are extremely important. Because of my Autism, communication challenges, and support needs, finding the right worker can take significant time. If a support worker leaves or a service ends, I may need to begin the process all over again. This can take months and often requires substantial assistance from my Support Coordinator.

Removing unspent funds without considering these circumstances creates a risk that participants will be penalised for factors beyond their control.

I am concerned that funding could be reduced simply because I have been unable to access appropriate

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supports during a particular plan period, rather than because my support needs have decreased.

My support needs do not disappear because services are unavailable.

My need for support remains the same whether I have been able to access the support or not.

In fact, periods where services are unavailable can often increase the importance of retaining adequate funding, as additional support may be required once suitable providers are found.

I am particularly concerned that participants with Intellectual Disability, Autism, ADHD, communication difficulties, executive functioning challenges, and other cognitive disabilities may be disproportionately affected by these changes. Many of us already face significant barriers to navigating service systems and securing supports.

Unspent funding should not automatically be viewed as evidence that funding was unnecessary. Instead, there should be consideration of:

• Availability of services.

• Workforce shortages.

• Provider turnover.

• Participant circumstances.

• Barriers to accessing supports.

• Evidence from Support Coordinators and providers.

• Ongoing functional support needs.

Funding decisions should be based on a participant’s actual support needs, not solely on spending patterns.

For people with permanent disabilities, continuity and flexibility are essential. Removing unspent funds without understanding why they remain unspent risks reducing supports for people who still genuinely need them.

I believe participants should not lose funding because services were unavailable, providers left, supports were on hold, or circumstances outside their control prevented them from using their funding during a particular plan period. The focus should remain on meeting disability- related needs and ensuring participants have access to the supports required to live safely, independently, and with dignity.

Reviews, Appeals and Participant Rights

Proposed change (Bill)

What this could mean in real life

My experience / what I want the Senate to know

Restrictions on reassessments Families may struggle to access timely (s48A) plan changes when circumstances The ability to request an deteriorate, informal supports unscheduled plan collapse, equipment fails or a child’s reassessment (Change of needs increase unexpectedly. Circumstances) will become When almost all NDIS plans are far more difficult to request. continued or rolled over, how does a (Must be unanticipated, participant request a plan significant an ongoing). COC reassessment if they haven’t had one requests may be processed for many years? For adults who have only in extenuating stable needs this is more reasonable, circumstances. however children may require plan Functional change must reassessments simply because they dramatically reduce daily have grown older and the level of activity. typical parental responsibility for their age may have changed. We would expect the core budget for a 6-year- old child to be very different to a 12- year-old child or a 16-year-old child. Future support needs Government has indicated future assessments may have more support needs assessments may be limited appeal outcomes reviewable, but tribunals may have reduced ability to substitute their own assessment. Right now, the Tribunal can review funded supports on a line-by-line basis. In the future, a Support Needs

Compliance, Administration and Safeguards

Proposed change (Bill

What this could mean in real

My experience / what I want the Senate to know

Plan suspension and If the NDIA requests information revocation for non-contact related to planning and a (s40A / s30(1A)) participant does not respond, the Agency could suspend their plan. If there is still no contact after 90 days, participant status could potentially be revoked. Families

may wish to consider what could happen if letters are missed, contact details are outdated, English is not a first language, or a participant is experiencing illness, hospitalisation, homelessness, family violence or another crisis. Expansion of mandatory Participants may lose access to provider registration trusted workers or experience workforce shortages, particularly in regional areas. People who directly employ their support workers (Service for One) may not be able to continue working with their trusted supports. A sole trader or contractor may be considered a ‘provider’ and need to undergo NDS Registration to be able to continue to provide support – this may be a costly and difficult process. What would happen if you were forced to use only NDIS registered providers? There will be a focus on mandatory registration for providers delivering “high risk supports”. For participants who are children, parents are often t heavily involved in recruiting, training, supervising and

• monitoring support workers.

Families may wish to consider whether mandatory registration provides additional safeguards or simply reduces the pool of available providers.

We also don’t have a clear definition of ‘High Risk Supports’ yet.

Increased record-keeping Families may face financial obligations and debt recovery powers

Incomplete, misunderstood or lost during periods of stress, illness or crisis.

Stronger NDIA compliance The NDIA would gain stronger and enforcement powers Powers to investigate how NDIS funding is being used, request information and documents, and issue fines where it believes NDIS rules have been broken.

Families may wish to consider what protections exist if an honest mistake is made and how easy it would be to challenge a deision.

Expanded NDIA information The Agency can require gathering powers Participants, nominees, providers and others to provide documents, anwer questions or attend a meeting with the Agency within 14 days’ notice. Failure to comply may result in legal consequences. Families may wish

**to consider whether appropriate safeguards exist and whether people will understand their rights and obligations when responding to these requests. Automation of administrative Automated processes may decisions. improve efficiency but also create The NDIA could use risks where errors occur, computer systems to carry out particularly for participants with some administrative tasks and complex circumstances or where decisions that are currently incorrect data is on file with the performed by staff. Agency. We don’t know what kinds of Some decisions currently made tasks, decisions and actions by humans would be made by an would be automated. algorithm or automated process. These decisions would still have the current appeal rights. Humans make mistakes. Computers make mistakes too. The difference is scale. If a delegate makes a flawed decision, one participant may be affected. If an algorithm gets it wrong, thousands of participants could receive the same incorrect outcome before anyone realises there’s a problem.

Children and Young People Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know section) Children increasingly directed Families may be redirected away from

Toward Foundational Supports

Thriving Kids Pathways

Increased reliance on parental responsibility arguments.

There is a change to the Reasonable and Necessary criteria stating the NDIA must remember parents are responsible for providing a substantial amount of support for their children.

The NDIA must look at whether funding support like support workers would expose the participant or someone else to risk of harm.

Families may be expected to absorb additional caring responsibilities regardless of work commitments, health, finances or sustainability. The NDIA would also be prevented from funding supports simply because they make family life easier, reduce the amount of time parents spend caring, or because a parent would prefer not to provide that support themselves.

How much unpaid care should parents, siblings, grandparents and other informal supports be expected to provide before disability support becomes the responsibility of the NDIS?

What risks exist if this paid or unpaid support breaks down?

Governance and Ministerial Powers

Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know section)

Greater reliance on legislative Significant decisions about eligibility, instruments and delegated budgets, support categories and planning ules could potentially be changed through instruments and rules rather than through the full Parliamentary process.

Minister may temporarily The Bill allows the Minister to modify how parts of the Act temporarily change how certain parts of operate (Schedule 5 the NDIS Act operate without having to transitional powers) pass a new Act of Parliament first or uses the usual parliamentary process.

Families may wish to consider whether important changes should always be debated and approved by Parliament.

Minister has greater influence While the NDIS Review recommended over pricing arrangements an independent organisation should set pricing (such as IHACPA) this bill transfers pricing power directly to the NDIS Minister with advice from the Agency. Self-Managers would still be able to pay above the Pricing Caps. Different pricing caps can also be set for different providers (i.e. registered and unregistered). What conflict of interest exists when the Minister responsible for controlling (and right now reducing) NDIS expenditure is also given the power to set the prices the Scheme will pay?

Informal Supports and Carers

Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know

section)

Increased reliance on When formal supports are reduced, the I am concerned about any policy direction that

informal supports and unpaid work does not disappear. It is often assumes people with disability can rely more heavily Carers transferred to parents, grandparents, on informal supports, family members, or unpaid siblings and other family members, carers to meet their support needs. disproportionately impacting women. How will this impact women with Not everyone has access to informal supports, and it disability in coercive control situations? guide should not be assumed that family members, partners, or friends have the capacity to take on employment? caring responsibilities.

                                                                In my case, I do not have informal supports available
                                                                     to meet my disability-related needs.

                                                                                 I do not live with my family and they are not able to
                                                             provide the level of support I require. There has
                                                               already been significant strain and burnout within
                                                             family relationships over the years. Expecting family
                                                  members to take on additional caring responsibilities
                                                                                 is neither realistic nor sustainable.

                                                                                 I also have a partner, however he is not my carer. He
                                                                                 is an Autistic person himself and has his own support
                                                          needs and daily challenges. He already works hard to
                                                  manage his own wellbeing, responsibilities, and
                                                                  functioning. It would be unreasonable and unfair to
                                                             expect him to take on responsibility for my disability
                                                               supports when he is also navigating his own

disabilities and support needs.

A partner should be able to be a partner, not automatically be expected to become a support worker, case manager, advocate, therapist, transport provider, or unpaid carer.

People with disability deserve the same opportunity to have relationships based on mutual care, respect, and companionship rather than having those relationships transformed into unpaid caring arrangements because formal supports have been reduced or removed.

My NDIS-funded supports are the supports that allow me to function and live independently.

They assist me with:

• Daily living activities.
• Community access and participation.
• Building and maintaining skills.
• Managing executive functioning challenges.
• Organisation and routines.
• Accessing services and appointments.
• Maintaining my wellbeing and independence.

Without these supports, there is no family member, partner, or friend waiting in the background who can simply step in and take over.

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The reality is that many people with disability are already experiencing social isolation and limited support networks. Policies that assume the availability of informal supports fail to recognise that some participants have no one who can safely or sustainably provide that level of care.

I am concerned that increasing reliance on informal supports may place unrealistic expectations on families and relationships, contribute to carer burnout, and leave people with disability without the assistance they need.

My disabilities are permanent and lifelong. My support needs do not disappear because funding changes, and they do not automatically become the responsibility of family members or loved ones.

For me, NDIS supports are not replacing informal supports—they are the supports that enable me to live, function, participate in my community, maintain my independence, and have the best possible quality of life.

Without them, I would face significant deterioration in my daily functioning, wellbeing, community participation, and overall ability to live independently. The assumption that informal supports can fill those gaps does not reflect the reality of my circumstances or the circumstances of

Extra Writing Prompts

Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know section) When support stops being What happens next? Who does the When a support stops being funded, the impact is often funded… work? Who pays the cost? Who much greater than people realise. carries the risk? For me, support is not a luxury or an optional extra. It is what allows me to function in daily life, maintain my wellbeing, participate in my community, and manage the ongoing impacts of my Intellectual Disability, Autism, and ADHD.

When support is removed or reduced, I do not simply “manage without it.” Instead, there is often a gradual decline in my ability to function. Daily tasks become harder to start and complete. My routines begin to break down. I become overwhelmed more easily. My executive functioning difficulties become more noticeable, and I struggle to keep up with responsibilities that are necessary for everyday living.

Without adequate support, I can experience:

• Increased burnout and exhaustion.
• Greater sensory overwhelm.
• Increased emotional dysregulation.

• Difficulties maintaining personal hygiene.
• Difficulties preparing meals and eating regularly.
• Difficulties remembering to drink enough water.
• Declining household cleanliness and maintenance.
• Increased social isolation.
• Reduced community participation.
• Increased anxiety and stress.
• Difficulty attending appointments.
• Difficulty managing paperwork and administration.
• Loss of confidence and independence.
• Deterioration in my overall mental and physical wellbeing.

The impact is rarely limited to one area of life. When one support is removed, it often creates a domino effect across multiple areas of functioning.

For example, if I lose support with organisation, community access, or daily living tasks, I may become overwhelmed trying to manage everything independently. As my stress increases, my ability to regulate emotions, maintain routines, complete household tasks, and participate in the community can also decline.

Because my disabilities are lifelong and affect many aspects of daily life, supports work together to help me maintain stability. Removing a support may seem like a small change on paper, but in reality it can have significant consequences for my health, wellbeing, independence, and quality of life.

I am also concerned that funding decisions often focus on whether a person can complete a task rather than whether they can complete it consistently, safely, independently, and without significant personal cost.

There is a difference between being physically capable of doing something once and being able to sustain it every day while also managing all the other responsibilities of life.

When support stops being funded, people can lose skills, confidence, routines, and community connections that may have taken years to build. Rebuilding those supports later can be much more difficult and costly than maintaining them in the first place.

For people with permanent disabilities such as Intellectual Disability, Autism, and ADHD, support should not only be viewed as something that helps us improve. It should also be recognised as something that prevents deterioration.

Many of my supports help me maintain my current level of functioning and prevent decline. Without them, I am at risk of increased isolation, worsening mental health, reduced independence, and a significantly lower quality of life.

The true impact of removing support is not measured by what happens on the day funding ends. It is measured by what happens in the weeks, months, and years that follow as a person’s functioning, wellbeing, and participation

What Disappears When Participation Disappears?

If social and community participation funding was reduced, what would be lost? Friendships? Employment opportunities? Community membership? Sporting clicks? Independence? Confidence? Belonging disappears. Mental health? Purpose disappears. Confidence disappears. Independence disappears. Opportunities disappear. Relationships disappear. Skills disappear. Hope can disappear. For people with disability, participation is often what keeps us connected to the world around us. It is how we build friendships, contribute to our communities, learn new skills, maintain existing skills, access employment and self-employment opportunities, and develop a sense of identity and purpose.

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As a person with an Intellectual Disability, Autism, and ADHD, participation does not happen automatically. It requires support. It requires planning, encouragement, assistance with organisation, emotional regulation, community access, communication, and overcoming the many barriers that my disabilities create.

Without support, participation becomes harder and harder.

I stop leaving the house as often.

I become more isolated.

My confidence decreases.

My mental health declines.

My routines break down.

My world becomes smaller.

The consequences are not always immediate, but they are significant.

When participation disappears, people can lose the very things that help them maintain their wellbeing and quality of life. They can lose social connections, community involvement, meaningful activities, employment opportunities, independence, and the chance to continue developing skills.

Participation is also preventative. It helps reduce isolation, improves wellbeing, builds resilience, and provides opportunities to remain connected to the community. Removing supports that enable participation can create greater costs elsewhere, including increased reliance on health services, mental health services, and informal carers.

For me, participation is not about recreation alone. Participation is about being able to live a meaningful life. It is about being part of my community, running my small businesses, attending markets, maintaining relationships, accessing services, learning new skills, and having opportunities that many people take for granted.

When participation disappears, people do not simply stay the same and do less.

Often, they begin to lose parts of themselves.

That is why disability supports that promote participation are not extras. They are essential supports that help people maintain connection, independence, dignity, purpose, and quality of life.

What would my child stop Would they stop attending sport? doing without these supports? Seeing friends? Going to work experience? Learning travel skills? Accessing the community? Building independence?