Family faces increased carer burden due to NDIS changes (Family or carer experience) | External submission

Submission 514

SUBMISSION TO THE NATIONAL DISABILITY INSURANCE SCHEME ADMENDMENT (Securing

the NDIS for Future Generations) BILL 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

From:

Date: May 31, 2026

Dear Sir/Madam

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a NDIS Nominee and carer of three (3) NDIS participants with multiple disabilities. I am writing hoping to put a human dimension to the proposed NDIS changes. This communication will be neither eloquent or detailed due to being employed, my carer responsibilities, and being given only a 2-week timeframe in which to make submissions to the Inquiry. This means there has been little time to digest the information about the proposed NDIS changes and the implications of said changes. However, it is clear from what has been provided in the media that the proposed changes will adversely affect many current NDIS participants, their carers/families, including mine.

We are a private family and to disclose about our lives is uncomfortable. I am also anxious that submitting to this inquiry might prematurely result in plan reviews that disadvantage my family members because of drawing attention to our situation. However, I perceive if I do not attempt to communicate my concern on behalf of my family members with disabilities, I would be failing in my advocacy role and responsibilities.

I am a multigenerational carer. From the age of 19 I have contributed to the care of various family members, with 35 years of this as a parent of my own children who have multiple disabilities. Even as a child myself I lent support to my mother who cared for my father and maternal grandmother who had disabilities and mental health conditions. Now approaching 64, I am tired. I am also determined, resilient, and committed to care for my family. In my role as a psychologist in private practice, I work with other carers which exposes me to a range of carer experiences. As a former researcher I had direct contact with families with children and adolescents with life-limiting and life-threatening conditions, researching their daily life experiences and challenge, having also lost my eldest child to terminal illnesses. I believe I am well placed to speak about the impact of disability on daily life. I have lived through the pre-NDIS days. For the first 20 years of my son’s life and as his custodial parent, I was unable to work full-time, due to the demands of his disability-related care and treatment appointments. I used all my annual and sick leave days to attend disability-related appointments meaning there was never any genuine down time. Even now, breaks are used to catch up on what I

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cannot get done, despite working 7 days most weeks. My focus then and now has been to provide our children (i) with a stable and long-term home so that they will not be reliant on social housing or face the risk of homelessness; (ii) support regarding disability and health-related challenges, and (iii) encouragement to pursue what is important to them. Where other families had holidays, treats, were able to save, purchased a home etc, in the pre-NDIS days these things either never occurred for us or were significantly delayed as we directed our time and income to therapies for our children. As a result, my husband and I are now in our 60s still with a mortgage, never having had a family holiday together as a total unit. Our money went on occupational therapy, speech therapy, counselling etc, choices made to give our children the opportunity to have quality of life in the face of life-long disability. This was drawn from our then joint income, with the cost high and the impact protracted. Today we are now a one income family without the same capacity to afford resources and support. At times in the past I navigated others’ judgement, criticized by some in the community for supposedly bad parenting, in the early years told I was an anxious mother, the list goes on. Undeterred I persisted through years of diagnostic processes to obtain clarity about what was my affecting my children and to guide caring for them. This has come at the cost of my own personal hopes, dreams, affecting my career choices, all surrendered in the pursuit of the care of my children. While a choice I made, it comes with grief about missed opportunities and experiences others might take for granted. This is true for most carers.

The introduction of the NDIS was life changing for us and importantly brought our family vital support which, in part, aided with the ongoing management of carer burnout risk as well as support for my family members with disabilities. For the first time the entire burden of care no longer fell entirely on me. Still, it remained demanding as I self-managed 3 NDIS plans until last year, alongside juggling multiple providers, and NDIS-related paperwork, all this its own job. In 2025 under the burden of this administration and rising care costs, I moved to plan management to help reduce this aspect of carer responsibility.

Ongoing access to NDIS funding has never been more important or crucial for our family’s survival. Tragically my husband was diagnosed with early-onset Alzheimer’s Disease, a terminal neurodegenerative condition. Currently he is in the moderate stage of this condition, progressively worsening, with his future consisting of ongoing functional declines until he dies. Having already lived decades with grief about my children and their disabilities, I cannot describe the additional and chronic grief that undergirds my daily life as I now watch my husband decline, knowing in time he will forget us and will no longer be able to live with us. Without the presence of support workers to support and ensure the safety of my family members, especially my husband, I would be unable to work, necessary as I am now the primary income earner for a family of 4 adults.

I want to be clear that I support appropriate management and scrutiny of all government bodies that are responsible for public funds. Concurrently, I wish to communicate the impact that I perceive the proposed NDIS changes will have on the daily life of my family and for all families with members living with disability. These changes, alongside other proposed changes in the recent Budget will adversely affect our family more than any past Budget. Specifically, I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.

Submission 514

Parliamentary Scrutiny and Transparency

‘The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis says consultation should occur for a minimum of 30 days where possible’.

The short timeline impacts me by limiting the timeframe I have available to review, discuss, and digest the nature and implications of the proposed changes, thereby hindering the opportunity to provide an extended submission on behalf of family members with disability who will be affected by the proposed changes. For other families too busy, and/or overwhelmed by daily life and carer demands, there will have been no scope for them to voice their concerns about the proposed NDIS changes including sharing about the personal impact of the proposed changes for their specific families. This means voices are missing in the discussion about these key and far-reaching changes to the NDIS. Additionally, a longer and wider community consultation period is required given the extent and magnitude of the proposed changes and their impact of the lives of Australians with disabilities, their carers, and families. This is especially important given so many current participants will be removed from the NDIS under the proposed changes, with major impacts on these participants’ lives, while other once eligible for the NDIS, will miss out of support which could have been life-changing and vital for sustained care of a family member(s) with disability. The current timeframe also limits me from accessing relevant advice from experts about the implications of the proposed changes. For some participants, carers, and family members within a 2-week period there will have been no scope to consider a submission. Doing so on my part required taking time off from work.

Recommendation:

Amend the consultation period for a best practice minimum of 30 days.
Provide easy to access mechanisms for NDIS participants, their carers and family members so they can make submissions to the inquiry about the proposed NDIS changes.

Key decision left to ministerial instruments, not law.

‘The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written’.

Decision-making under the proposed new mechanisms will affect who qualifies for the NDIS, would affect NDIS reviews, impact the level of funding, and what supports NDIS participants will receive. This would all be occurring without vital public scrutiny and without parliamentary debate. It centralizes significant decision-making power affecting the lives of Australians with disabilities, carers/family members to a limited number of government representatives without transparency about their agendas regarding management of disability services and provisions. It means participants may be unaware of changes in eligibility rules and new thresholds, and/or changes in supports until their plan is affected.

Submission 514

The changes proposed diminish the importance of diagnosis and diagnostic implications for participants’ lives, including my family members. Diagnosis plays a significant role in understanding the trajectory of a disability and implications for ongoing functioning. For example, knowing that my husband has been diagnosed with Alzheimer’s Disease provides vital information about his future and this cannot be replaced by a point-in-time assessment of functioning. Lack of scrutiny whether in the public or parliamentary domains increases the risk that poor decisions, decisions without adequate guardrails, decisions uninformed by Australians living with disabilities, and problematic agendas, may result in a system that damages rather that aids the lives of my family members and similar others living with disability.

Recommendation:

Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Require extended community consultation timeframes regarding any proposed changes to the NDIS regarding eligibility to allow adequate time for deep community engagement and community submissions, with the consultation timeframe no shorter than one month to reflect the gravity of proposed changes.

Existing participants face narrower criteria and fewer rights to challenge decisions.

‘The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about supports and funding. It also restricts when participants can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their supports’.

These proposed changes fail to protect participants already on the NDIS such as my family members, who could be reassessed under stricter rules. If someone’s funding is reduced or their plan is renewed automatically with scope for review, they may have limited or no ability to challenge a decision that does not reflect a participant’s actual support needs. This could make it harder for people to get extra support when their circumstances or disability change. For example, the circumstances of having a disability, especially neurodegenerative conditions, can result in changes in support needs that do not align with reviews timelines. Being unable to access a review when functioning declines as a disability worsens risks the safety of both the participant and their care teams (formal and informal). Where mistakes are made based on incomplete information about a participant’s changing situation, or relevant clinical information is not considered by the NDIS (e.g., reports provided to the NDIA but not read, etc) the risk of plan funding not meeting the current and changed needs of a participant is increased. Concurrently functional capacity is not a stable construct, with multiple factors affecting a participant’s support needs at any point in time. Not being able to seek a review given changing functional capacity or other key changing factors in a participant’s life will result in funding that is

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inadequate to need to a participant’s current support needs. Importantly, if supports are removed and there is no viable alternative service available to replace withdrawn services then participants will be worse off.

Deeply concerning are proposed changes that automate decision-making with no channel of appeal if decisions are wrong or plans inadequate, or information included in the plan incorrect. Removal of the human dimension in any government process is dangerous. It removes the scope for discretion. It removes the inclusion of information from multiple sources. It reduces extremely complex human experiences to a level of simplicity that hides reality. It contributes to the distortion of people’s reality. It reduces people to numbers, stripping them of identities. We have already seen the impact of automation (e.g., Robo-debt scandal). Legally we have a right of appeal in the judicial system, yet the government is proposing no such right for those with disabilities under the NDIS proposed changes.

Automation of decision-making and no scope for independent review and no access to human reviews means that participants will be without any form of review process. Where decisions are wrong there will be no mechanism to address this, meaning the very system that is meant to support current and future participants with disability will become another government body that fails them. There must be some safeguards to ensure current participants do not lose access to supports unless there are equivalent, available, accessible, and affordable replacement supports already existing. Not permitting requests for a review of funding changes means that there is no scope for a participant to demonstrate that the funding loss will jeopardize their functioning and care. This can result in a loop of declining functioning, where a participant worsens due to lack of support. Less funding means reduced services which further jeopardizes functioning This is especially problematic if there is no demonstrable evidence for the funding change and where participants are losing funding as part of a blanket funding reduction (e.g., 50% reduction in social, civic, and community participation) left without any way to challenge the implications of such changes for their personal circumstances.

Recommendation:

Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.

Unreviewable ministerial power to cut funding across all support categories

‘The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5)’.

Why does having a disability now appear to reduce the right of some individuals to access to the community, less scope to be valued contributors to the community to the degree that they can, and more generally reduce opportunities for social connections and quality of life. For example, my husband’s loss of a driver licence due to dementia traps him at home. A quiet man who loves nature, being taken to visit such places and to continue to have contact with our local community helps him

Submission 514

cope with his dementia. In time he will no longer be able to do this, eventually requiring institutional care. Being at home, cared for by safe people, surrounded by familiar people, places, and experiences aids in lengthening the time before he will no longer be able to live with us. My son’s vision impairment means he also cannot drive. Without support he cannot easily access the community and due to his autism has needed support to build relationships with others in our local area so that he can be known and recognised. This has also helped build social skills needed to maintain connections with others outside our immediate family unit. The proposed change means that a participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. The proposed specified percentage changes will have a devasting impact and will harm my family members with disability. I am now the primary income earner for a family of 4 adults (following my husband’s medical retirement due to dementia). The proposed 50% reduction in Social, Community, and Civil participation funding and the proposed 10% reduction in Daily Activities funding (part of current funding) will immediately reduce funding which pays for support workers needed to allow me to work to financially support my family. Concurrently it will effectively trap two of my family members at home until such time as I can take them out (while trying to juggle working and all the other existing commitment requiring a carer’s attention). As their disabilities prevent them from driving and our local area lacks adequate public transportation, my family members would have few alternative ways to safety access the local community. In the case of my husband with dementia, with the worsening of this condition he needs to be accompanied when out in the community as his version of Alzheimer’s Disease (logogenic variant) means he has trouble communicating with others, struggling to independently navigate commercial transactions, etc. As the condition further worsens, he will require increased supervision which I cannot provide if at work, his support workers vital in maintaining his safety. A blanket cut in the funding would mean periods where he might be left unsupervised as his dementia-related behaviour worsens, risking his own safety and that of other family members. A blanket cut in funding is a cost cutting measure and disregards the impact and possible risk such funding changes will have for a range of participants, in some cases excluding participants from engaging in their local communities. For other carers, it may mean loss of sleep and diminished self-care, as they would have to resume care tasks currently funded under the existing NDIS, an unsustainable model without risk to carers’ own health and wellbeing. For other participants it will mean vital support needed to keep a participant alive may be reduced with no discernible replacement support outside of already stretched family members.

Under the proposed changes, participants who save unspent funds across plan periods for high-cost items will lose that ability entirely. Where funding is not spent in one period, allowing it to rollover and accumulate means as service needs increase, funding may already exist reducing the need to request reviews. Having no right of appeal regarding the proposed specific percentage funding reductions means regardless of an individual participant’s circumstance and need, they will be deprived of the opportunity to have their circumstance reviewed. This increases the likelihood that a specific plan will be less about responding to the participant’s need and more about the government minimising their expenditure at the expense of Australians with disability. In some cases, there will be no one else to fill the gap. Carers are already often working at their maximum to support their family members with disability, with statistics showing that being a carer results in compromised personal health and wellbeing.

Submission 514

Recommendation:

Require that unspent funds carry over at plan renewal for participants saving for high-cost items or for use as support needs increase.
Require independent review rights before any funding reduction takes effect.
Allow participants a course to appeal where reduced funding for any support or group of supports by a specified percentage results in diminished support and care relative to participant need.

Requirement to exhaust treatment options before eligibility

‘A person with disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will be removed (Schedule 1 Part 3)’.

‘As a result of the above proposed changes, people with disability will need to prove their impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them’.

As a psychologist if I was to disregard a patient’s diagnoses, only completed one standardized assessment and treated this as a stable/permanent description of functioning, disregarded the clinical reports of others treating my patients, disregarded psychosocial, environmental, relational and other contextual factors, and assumed that functional capacity was one-directional (i.e., it only improves), I would be operating outside of evidence-based practice, would be regarded to be unethical in my professional behaviour, and at risk of negligence in relation to assessment and treatment decision making. Yet I understand this is to occur in relation to these proposed NDIS changes. Diagnostic information regarding my family members tells me that (i) my husband will worsen then die, and (ii) my children will require varying levels of support across their lives. Functional capacity is a fluid construct, with functioning changing for any number of reasons. A functional capacity assessment tells me how my family member is at present, hypothesizing about future change. For this reason, a single point-in time assessment does not adequately reveal the breadth of a participant’s unique circumstance especially if all relevant factors are to no longer be considered.

People, regardless of whether they have disabilities or not, always exist in a context, and context matters. To ignore contextual factors of any form will mispresent the participant’s circumstance, will distort understanding of their needs, and result in mistakes in funding. Multiple disabilities exist, some with co-morbid conditions which additionally and adversely affect functional capacity. That would be like saying lets only focus on my son’s autism but disregard his visual impairment when both conditions have significant implications for daily life. Once again, the proposed changes will result in a misrepresentation the seriousness of situations for families with multiple members with disabilities. As a

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unit, disabilities and related functioning of one family member can directly affect the functioning and coping of other family members. I cannot emphasize sufficiently how crucial it is to consider context as disability and its impact do not exist in isolation. For example, as my husband’s dementia worsens and his behaviour adversely impacts others their own functioning is compromised with intervention required at times to defuse such situations. The proposed NDIS change to disregard contextual, environmental, relational, and situational factors will provide a distorted perspective of any NDIS participant’s life and in families such as mine, will fail to see the interactive impact when multiple people with disabilities cohabite. Family members do not exist in a vacuum. We interact, relate to, and impact each other. This is true for all families. It distorts reality for the government to propose that environmental factors and other ineligible impairments that can affect a participant’s support needs should be disregarded.

Similarly, to focus on a single eligible impairment for eligibility assessment for the NDIS fails to recognise that impairments often cluster together and where this occurs, co-morbidity often adds complexity to the functional challenges for people with multiple disabilities. Once again, the proposed changes fail to align with the diagnostic reality for some people with disabilities and appears to be more about the government attempting to limit both eligibility for and access to the NDIS, and to thereby reduce required funding for participants with complex diagnostic presentations. Additionally, to discount whether a participant can access and afford other treatment pathways will create discrimination regarding participants’ location (i.e., less service accessibility for those in remote and rural settings); will create discrimination regarding participants’ economic capacity (i.e., participants may not be able to pay gap fees and hence effectively will be denied services presently available under their NDIS plans; rising cost-of-living may result in participants not being able to afford required treatments, etc), with the emergence of worsening discrimination of service access of those with disabilities. The examples provided above are relevant for my family members, especially as we are relying on a primary income earner with no capacity to provide any service/treatment lost under the proposed NDIS changes.

Concurrently, changes to other funding areas that reduce access to allied health services would take away vital care for my children who are trying to navigate their own lives and disabilities while now dealing with the decline of their stepfather/father’s health. For example, under Medicare there are only 10 Medicare sessions available per calendar year for which a rebate can be claimed. Accessing Medicare (to exhaust other treatments outside of the NDIS) means my family members (and all participants using Medicare) need to be able to afford the gap fee. Where not able to do this as would be the case for my family members, especially as there are 3 of them, they would no longer be able to access allied health services including seeing a psychologist. It would be the same case regarding accessibility to occupational therapy, community nursing, exercise physiotherapy, and social work services as there are only very limited numbers of such services covered annually under Medicare. As the primary income earner, I can no longer afford to access some services for my own healthcare due to their costs. I would not be able to afford gap fees for multiple allied health services for 3 family members, with the result that services that contribute to the ongoing care of my family members would simply cease. It would not matter that such services were available as they could remain inaccessible to my family members. This is likely to be trust for many families where they are reliant on multiple allied health providers as part of the regular care of their family member with disabilities.

Submission 514

Recommendation:

Do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.

Unvalidated functional capacity assessment tool risk misidentifying need

‘The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment. The named assessment tool is the Instrument for Classification and Assessment of Support Needs (I-CAN). I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability’.

The proposal to reply solely on a single assessment tool is inconsistent with evidence-based practice where generally multiple tools and processes are used for assessments and diagnosis. Use of unvalidated assessment tools is also inconsistent with evidence-based practice in research, especially if the tool is used on populations for which it was not designed/intended. It is also problematic to use a tool which does not capture fluctuations in functioning or episode changes, with assessment normally an iterative process rather than a single point-in-time assessment. The use of the proposed I-CAN will inadequately capture the diagnostic complexity of many NDIS participants’ clinical presentations and will provide a distorted account of the broader functional situation of a participant, made worse if assessment is limited to a single impairment (despite a participant having multiple impairments as is the case with my family members). There is a need to determine that the I-CAN is valid tool for the groups it is intended to be used on, as per general research principles. Additionally, even when individuals have a similar diagnosis/diagnoses, there is variability in disability progression, especially for neurodegenerative conditions, or disability-related functioning, such as with autism and its comorbid conditions. I am profoundly concerned that by focusing on only one assessment tool, one not yet validated for all disabilities, that assessment under the NDIS will exclude individuals who might otherwise produce different results if assessment had used tools validated for their diagnosis/diagnoses and related functioning. If the assessment tool does not accurately capture the full extent of a person’s disabilities, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience, along with no right of appeal in these circumstance.

Similarly, assessments that disregard the contribution of those providing direct clinical care to participants will create distortions regarding participants’ situations. Underqualified and/or poorly trained NDIA staff using a standardized tool with inflexible response options will produce a false picture of functional capacity. Can my son now cook a basic meal? Yes, sometimes. However, he cannot drive due to a permanent vision impairment (among his multiple disabilities) and being able to cook a simple meal is useless if he cannot access the community to purchase the ingredients needed to make such a

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meal. How will people with cognitive impairments navigate a standardized assessment? Now deemed to have no capacity for decision-making regarding legal, health, financial, lifestyle choices (determined by the geriatrician), my husband cannot provide an accurate account of the impact of his dementia. Those providing his ongoing treatment are of a shared consensus that he does not comprehend the ways in which he has cognitively changed, does not understand the implications of his diagnoses, and does not realise the long-term implications including his eventual death. He will not be able to participate in the new assessment proposed under the NDIS changes (without grossly mispresenting his situation) as will be the case for other participants with intellectual and cognitive impairments. It will take the reports from treating medical and healthcare practitioners to clearly indicate my husband’s functioning at any point in time. However, it is my understanding that these reports will now be discounted/disregarded. I perceive that this will result in discrimination when some participants cannot self-represent at all, or that to do so will risk symptoms activation, or misrepresentation of functioning when a participant cannot correctly report his/her functioning. This could result in a change or loss of funding. The simple reality is that a one-size-fits-all approach never works, is inherently unjust, fails people, in this case vulnerable members of our community.

Recommendation:

Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.
Retain use of validated tools for a specific disability assessment and inclusion of clinical reports from qualified healthcare experts known to a participant as part of the assessment process rather than use of a single unvalidated assessment tool used by non-clinical NDIA staff.

Supports cut before replacement system is ready

‘From 1 October 2026, the government has announced funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.’

The changes proposed to occur from 1 October 2026 will result in loss of access to supports that help participants connect with their community, build skills and maintain independence. For this to occur when nothing else exists to replace them, leaves carers like me with greater responsibilities and no additional support. Current supports help my family members stay visible, connected, and safe. I have watched how, with the care of support workers, my family members with disability access our local community and attend appointments and undertake life skill activities. This helps them form and maintain connections in our local community and in the case of my husband with Alzheimer’s Disease, supervised access to ensure his and others safety. The removal of support and reduced funding will limit or remove this support, isolating my family members. Practically I cannot work and concurrently support my family and be available to take them to activities and appointments. We are at point where

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safety is a concern and leaving my husband and son alone while I go to work is not an option. Unless I have enough support worker coverage in our home, I would no longer be able to work placing our home at risk if I was unable to pay my mortgage. Please understand the gravity of this outcome. Without continued help, I would have to leave my employment, close my psychology practice, abandon the care of my patients disturbing their psychological treatment, and risk losing my professional registration if unable to meet ongoing registration requirements and professional development requirements. If required to take over the care contribution of the support workers (in addition to everything I currently contribute), I would have to apply for a Carers Payment, on behalf of my husband apply for an Aged Pension for him, and because I would no longer be able to financially support my other child with disabilities, recommend that she apply for a Disability Support Pension. At present we are avoiding these options. To continue to do so, hinges on having available NDIS funding.

The greatest concern of all carers is the future care of our loved ones. With the NDIS in place, I acquired a level of certainty about my children’s and husband’s future, especially if I was to die prior to my husband. My children and husband had NDIS funding to help them maintain quality of life, access to the community, and most importantly was helping to prepare my children for life after my husband and I die. At present that certainty is now gone, and daily I am concerned about their futures. I feel powerless in the face of decisions being made that will directly affect my family, wondering will they be among those pushed out of the NDIS and if so, how will I cope. I am profoundly concerned about the messages that suggest people with disability are perpetuating fraud when the indications in the media are that it is organizations and providers and administrative failure on the part of the NDIA to scrutinize processes that contributes to budget blowouts/fraud being possible. Brewing resentment towards those with disability is dangerous and divisive. My husband and children did not ask to have their respectively disabilities and our lives would have been profoundly different if not including disability. But disability also brings with it the opportunity to see diversity as simply difference to be valued. If those living with disability lose NDIS funding, there is an onus on the relevant government bodies to ensure that appropriate replacement supports are provided and that alternative services exist and are not only concepts otherwise people with disabilities, their carers and families will fall through the gaps. The human cost of falling through gaps is enormous. We are not numbers on pages or percentages in reports. Changes of the magnitude being proposed will directly and revocably affect lives, especially when there are no appeal mechanisms to ensure justice. At present there is no clarity about alternative foundational replacements and not all participants such as my family will be able to afford to access other services even if they exist.

Adding to the above challenges is the proposed requirement for registration for providers such as support workers. We have worked with registered providers and have found them to be lacking in a range of ways, despite their apparent NDIA registered status. As a result, we moved to using smaller and solo providers. I have already been advised by 2 of 3 of my current support worker providers (all self-employed) that they will not be able to afford to register. One has been with us for 8 years, the other from the start of my husband’s dementia journey. Stability of support is critical, especially in relation to my husband. I rely on the support workers to monitor and notice changes in my husband, while he needs to feel safe with them, especially when they take him out into the community. Change is especially hard for those with dementia, while finding suitability experienced people who are a good

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match for him in general is challenging. Loss of supports presently integrated into our family system, support which are stable and familiar with my family members, will be devastating.

Recommendation:

Require that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports and that it is demonstrated that those removed from the NDIS are eligible for replacement supports.
Require continuance of current levels of community participation or capacity building supports where it can be demonstrated lack of access to, and/or eligibility for other foundational supports are not met, or where existing alternative supports are insufficient to address participant needs.

In summary

Daily I feel like I am a captain of a ship constantly trying to avoid hitting icebergs. The proposed NDIS changes feel like my navigation system would be taken away and it would become a case of when, and not if, the ship is struck. As a carer there is very little to directly support me as I try to ensure the ongoing care and support of my family. The carer role has compromised my own health and wellbeing. Daily I draw upon the extensive skills I have as a psychologist and my faith to aid with coping. Others who are long-term carers do not always have these skills available to them and in my therapy room I hear their struggles trying not to drown under the demands of their carer roles, often lasting years/decades in duration. The role of carer is isolating, the cost personally high in lost friendships and life opportunities, and the constant pressure to keep going regardless of the personal cost. I worry about my own future as I age, trying to sustain myself that I might continue to care for my family and contribute to my community. This is never more important as my husband’s dementia will worsen and life for our family become more challenging and complex. Any increased carer demands risks carer burnout, the impact of this felt personally and seen in my clinical work. The current NDIS structure supports my family in ways that ensure they can function as is possible given their respective disabilities and are safe in doing so. At present doing so does not reply solely on me. The proposed changes appear to assume that if funding is reduced that family members (largely women) will just fill the gaps. However, we are already in the gaps and have been there all along. I have already sacrificed my career, have accrued less superannuation for my own future care, have reduced financial security with my own future permanently on hold. I cannot work to financially support my family and concurrently also be a full-time carer for my family without something breaking. I see what broken looks like in my clinical work. Recovery is slow and often simply does not happen, with carers left with their own compromised health and wellbeing.

I implore you to reflect for a moment on your own risk or your loved ones’ risk of having a disability. Some of the decision-makers in this NDIS Inquiry may already have plaque building up in their brain and will contract dementia themselves or this will occur for a loved one and may occur well before expected. Dementia is now the leading cause of death in Australia. Some of the decision-makers or their loved ones may have an accident that results in permanent brain impairment. Some have a child or grandchild born with gene mutation or genetic conditions and the list goes on. My point in saying this

Submission 514

is to highlight how easily disability can enter the life of any person and their family. When considering the impact of proposed NDIS changes, please take a moment to consider what you or your loved one might one day need/require should you too face life supporting a family member with disability. Like becoming homeless, it only takes one event to be life changing and result in an acquired disability while other disabilities are presently from the start of a person’s life.

Thank you for considering this submission.

Yours Sincerely

Reference: How to make a Parliamentary Submission - People with Disability Australia