Submission 2947 — Name Withheld — NDIS Future Generations Bill | External submission

Submission Regarding Proposed NDIS Reforms

Introduction

I am writing to express my concerns about the practical impact these reforms will have on families supporting people with complex and lifelong disability.

My family already relies heavily on unpaid care, coordination, advocacy and crisis management to maintain stability and safety. The proposed changes appear to shift even more responsibility onto informal carers while simultaneously reducing flexibility, increasing bureaucracy and limiting avenues for review and appeal.

One of my greatest concerns relates to the proposed reductions to social and community participation supports.

For people with significant disability, including those with intellectual disability, autism spectrum disorder and severe communication impairments, community participation supports are not optional extras. They provide access to trained support workers, safe community engagement, behavioural regulation, social connection and opportunities for inclusion. For many participants, these supports are essential to maintaining wellbeing, developing skills and participating meaningfully in society.

For participants requiring one-to-one or higher levels of support in the community, a blanket reduction risks creating serious unintended harm. It fails to recognise their right to participate in community life and may increase the risk of social isolation, mental health deterioration, hospitalisation and other devastating outcomes. For some individuals, inadequate support can contribute to neglect, abuse, severe deterioration in wellbeing, or tragic outcomes that may otherwise have been prevented through appropriate support and community engagement.

I am concerned that reducing community participation supports for people who require 24/7 support may effectively confine some individuals to their homes. For people with severe intellectual disability, autism and complex support needs, access to the community is often a critical protective factor that supports mental health, reduces isolation and promotes quality of life. Reductions to these supports risk increasing dependence, social exclusion and vulnerability. This is an issue of safety, dignity and human rights.

Reassessments, Evidence Requirements and Review Rights

I am deeply concerned about the expansion of reassessment powers and the increasing uncertainty families face regarding future eligibility and funding stability.

Families caring for people with permanent and significant disability require predictability to plan housing, employment, education, care arrangements and financial sustainability. Constant fear of reassessment creates ongoing psychological strain for carers who are already functioning under immense pressure.

The current system frequently requires families to repeatedly demonstrate the severity and permanence of lifelong disabilities. Having a loved one with significant disability is often accompanied by grief and complex emotions. Repeated reassessments and annual reviews can reopen these experiences and place additional strain on family relationships. The current deficit based assessment approach can move focus away from the strengths, capabilities and potential of people with disability and their families.

I am also concerned that the proposed framework increasingly privileges formal written evidence and demonstrated outcomes over the lived experience of people with disability and their families. This places additional financial and administrative burden on families who are already funding repeated assessments, reports and specialist consultations, including services that are not funded by the NDIS, such as psychiatric assessments. Families often know the day-to-day reality of a person’s disability better than anyone, yet their lived experience can carry less weight than formal reports. Obtaining repeated assessments and specialist reports is expensive, time consuming and emotionally exhausting for families who are already carrying substantial caring responsibilities.

This is already the reality for my brother. Significant amounts of funding are spent on assessments, reports and evidence gathering to satisfy NDIS requirements. As a result, less funding is available for actual therapy and support. It is frustrating to watch scarce resources being directed towards repeatedly proving a lifelong disability instead of helping a person with disability live a better life.

This burden is even greater for families supporting multiple people with disability, including where disability arises from a genetic condition affecting more than one family member. In these circumstances, families can find themselves navigating multiple plans, reviews, assessments, reports and service systems simultaneously.

My brother’s disabilities are permanent, significant and lifelong, yet our family continues to be required to invest substantial time, energy and funding into repeatedly proving needs that are already well established. The same is true for other members of my family with permanent disabilities, including my mother and sister. For families supporting multiple people with disability, the cumulative burden of obtaining assessments, reports and evidence can become overwhelming. Increasing evidence requirements will only worsen this problem for families like ours.

The proposed changes to unscheduled reassessments are particularly concerning. Under the Bill, reassessment requests will only be permitted where there are significant and ongoing changes, and the NDIA may take up to 90 days to decide whether to vary or reassess a plan. This creates substantial risk for families attempting to respond to rapidly escalating behavioural, mental health or support crises.

In our family’s experience, mainstream systems are often unable to fill the gap when disability supports are unavailable or delayed. We have been turned away from hospitals and community services because staff lacked the training, expertise or capacity to safely support people with a moderate or severe intellectual disability, autism and significant communication impairments. The assumption that people can simply rely on health services or other community supports during periods of crisis does not reflect reality for many families.

In New South Wales, many of the block funded disability services that previously existed outside the NDIS have disappeared. As a result, when NDIS supports are reduced, delayed or unavailable, families are often left with nowhere to turn. Families are frequently directed to mainstream health or community services instead, however many of these services either no longer exist or do not have the skills, training or resources required to safely support people with moderate or severe intellectual disability, autism and significant communication impairments. This creates unacceptable risks for people with disability and their carers, particularly during periods of crisis when timely and specialised support is most needed. In these circumstances, timely reassessment and review processes become even more important because there is often no realistic alternative source of specialised support available.

The proposed limitations on review and appeal pathways are similarly alarming. Families should not lose meaningful access to independent review when decisions profoundly affect safety, wellbeing, independence and participation in community life. It is important that an impartial judicial process remains available so that people’s lives are not negatively impacted by shifting political priorities.

In my brother’s case, two Restrictive Practices Authorisation (RPA) Panels approved specific support ratios and safeguards following a lengthy and demanding process. Despite these approvals, the NDIS did not fund the level of support required to implement those safeguards. This created a situation where state approved risk management measures could not be fully implemented because the funding necessary to operationalise them was not provided.

Where decisions are made that contradict or undermine recommendations arising from formal state based authorisation processes, families must have access to timely and meaningful review pathways. Delays in review are not simply administrative inconveniences. For people with complex disability, approved restrictive practices and support ratios are often directly linked to safety. In some circumstances, the inability to implement approved safeguards may place the person with disability, support staff and members of the community at risk of serious harm.

My concerns regarding review, accountability and oversight mechanisms are also informed by my family’s lived experience. Following a serious assault on my brother by disability support workers, a police report was made. Despite the seriousness of the incident, our family was left with little confidence that existing oversight mechanisms were able to provide meaningful accountability or system improvement.

The incident had a profound impact on my brother and our family and fundamentally changed our sense of safety within the disability support system. It also resulted in permanent physical injuries that increased his support needs, including a permanently dislocated shoulder and neurological complications that have contributed to episodes of drop foot. These impacts continue to affect his daily functioning and support requirements years later.

Families need confidence that when serious incidents occur, there are transparent processes for investigation, accountability and learning. Equally, when decisions are made that affect safety, wellbeing and quality of life, there must be a fair and accessible process available to challenge those decisions if necessary. This is particularly important for people with complex disability whose needs may not fit neatly within standard funding frameworks. Decisions made at a system level do not always reflect the reality of an individual’s circumstances, and families must have meaningful avenues available to seek review when this occurs.

Strong safeguards, meaningful review pathways and independent oversight are essential to maintaining trust in the systems designed to protect vulnerable people with disability.

Impact on Carers and Family Systems

I am deeply concerned that current and proposed reforms fail to adequately recognise the cumulative burden carried by unpaid carers and family members supporting people with disability.

In addition to being a full time employee and sole parent of two teenagers, I provide ongoing support to multiple family members with disability and complex support needs, including my brother, sister and mother, while also supporting my ageing father. My responsibilities include guardianship and advocacy roles, coordination of medical care, disability supports, financial administration, crisis response, communication between services, and ongoing navigation of the NDIS, health and aged care systems.

The practical workload associated with these responsibilities is substantial. Conservatively, caring and administrative responsibilities occupy approximately four to seven hours per weekday and significantly more during weekends, periods of crisis, hospital admissions, behavioural escalation, funding reviews and tribunal matters. The hidden cognitive and emotional labour extends far beyond these visible tasks.

Although our plans are plan-managed and NDIA-managed, the administrative burden placed on families remains substantial. Significant time is spent coordinating providers, managing service agreements, obtaining evidence, liaising with government agencies, responding to reviews, resolving funding issues, managing restrictive practice requirements, preparing for reassessments and navigating complex systems. The burden experienced by families is not limited to self-managed participants and should not be underestimated.

It has now been ten long years for our family since the scheme was introduced. The ongoing stress of repeatedly having to prove the severity and permanence of disability in order to access continued support is beyond exhausting. Each review and reassessment forces us to relive trauma, including the near fatal abuse my brother experienced at the hands of disability support workers. The emotional and administrative burden of constantly fighting for essential supports while trying to keep our family functioning is taxing beyond words. Rather than creating security and stability, the system often feels adversarial and dehumanising. The reality is that this process is slowly destroying families like ours.

The proposed reforms appear likely to increase this burden through tighter reassessment pathways, increased reliance on functional capacity assessments, heightened evidence requirements, expanded record keeping obligations, reduced flexibility within participant supports and reduced appeal pathways.

The sustainability of the NDIS cannot depend upon the invisible exhaustion of unpaid carers functioning beyond sustainable human limits.

Impact on People with Disability During Crisis

I am also deeply concerned about the impact these reforms may have on people with disability during periods of crisis, behavioural escalation, mental health deterioration or significant life transition.

Rigid funding structures and reduced flexibility do not reflect the reality of complex disability. People do not experience disability in predictable or linear ways. Needs fluctuate. Crises occur. Families and support systems require the ability to respond rapidly and flexibly in order to maintain safety and prevent serious harm.

In my own experience supporting family members with disability, I have witnessed how gaps in support, delays in decision making, inadequate accommodation options and inflexible systems can escalate situations to extremely dangerous levels. While I cannot publicly discuss every aspect of these experiences, I can state clearly that inadequate support systems can place lives at risk.

For many participants with complex disability, specialised support, continuity of care, behavioural support, trusted relationships and flexible access to community participation are the very factors preventing hospitalisation, homelessness, police involvement, severe behavioural escalation, psychological deterioration and death.

I am also concerned about the proposed expansion of automated decision making and algorithmic processes. These changes raise significant questions regarding transparency, procedural fairness and the capacity for nuanced understanding of complex disability presentations.

A sustainable disability system must preserve flexibility, responsiveness and person centred decision making. Systems driven primarily by cost containment rather than safety and human need risk causing profound and irreversible harm. The impacts of inadequate support systems are often felt far beyond the individual participant, affecting families for years and, in some cases, contributing to intergenerational disadvantage and trauma.

Recommendations

I respectfully ask the Committee to consider:

Stronger safeguards for participants with permanent and significant disability.
Protections against arbitrary or blanket funding reductions.
Preservation of meaningful review and appeal rights, including access to urgent independent review where funding decisions conflict with approved safety measures, restrictive practice authorisations, or other formal risk management processes designed to protect people with disability and those who support them.
Strengthened safeguards, oversight and accountability mechanisms to ensure serious incidents involving people with disability are investigated appropriately and that families can have confidence in the systems designed to protect vulnerable participants.
Protections to ensure plan-managed and NDIA-managed participants retain flexibility, continuity of supports and timely access to services.
Preservation of community participation supports for people with complex disability.
Recognition of the long term impact these reforms will have on unpaid carers and family systems.
Increased investment in the detection, investigation and prosecution of fraud, criminal activity and financial exploitation within the disability sector.
Consideration of a dedicated specialist taskforce or law enforcement capability focused on serious misuse of NDIS funding and the exploitation of people with disability.
Recognition that protecting the integrity and sustainability of the NDIS requires addressing criminal misuse of Scheme funds as well as ensuring participants continue to receive the supports they need.

The sustainability of the NDIS cannot be achieved by transferring unsustainable burden onto families who are already carrying the system.

Thank you for considering my submission and the lived experiences of families supporting multiple people with complex and lifelong disability. I respectfully ask the Committee to ensure that any reforms preserve the safety, dignity, inclusion and quality of life of people with disability, while recognising the vital role played by families and carers who support them every day.

Kind regards,