National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
Senate Inquiry Submission – NDIS Future Generations Bill 2026
Executive Summary
I am the mother and legal guardian of my 32-year-old son, who has profound disability and complex support needs. I am also a disability advocate and community sector worker with both personal and professional experience of the NDIS.
I oppose the NDIS Future Generations Bill 2026 in its current form.
While I support measures that strengthen the long-term sustainability of the NDIS, I am deeply concerned that several proposed changes will undermine the principles of choice and control, reduce access to individualised supports, weaken review rights, and place people with disability and their families at significant risk.
I ask the Committee to recommend that the Bill not proceed unless it is amended to:
Protect self-management and ensure families can continue employing trusted workers where this is safe and appropriate. Ensure any provider registration requirements do not remove choice and control or force people into unsuitable provider models. Preserve clear, accessible internal and external review rights for NDIS decisions. Prevent participant plans from being suspended or participant status from being revoked solely on the basis that a person is considered “not contactable” without robust safeguards, evidence that all reasonable contact avenues have been exhausted, and access to review rights. Ensure decisions about “appropriate treatment” are transparent, evidence-based, rights- based, and informed by suitably qualified professionals. Ensure pricing decisions are made independently and reflect the real cost of safe, high- quality disability support, including wages, training, insurance, compliance, and workforce sustainability. Require genuine consultation with people with disability, families, carers, and advocates before major changes are implemented.
About My Son and Our Family
I am the mother and legal guardian of my profoundly disabled 32-year-old son. My son lives at home with his family, and I am the sole income earner in our household.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
I am not only an informal advocate for my son, but also a formal advocate for many other people living with disability and mental ill health. I have worked within the community sector for many years and have extensive experience with the NDIS both personally and professionally.
My son lives with multiple disabilities, including Cerebral Palsy, Epilepsy and Intellectual Impairment, all acquired as a result of a brain haemorrhage when he was 14 months old. Each of these disabilities has a significant functional impact on every aspect of his daily life.
When the NDIS was introduced, it was life-changing for both my son and our family. Before the NDIS, I was told that once my son left school, I would need to consider retiring because there would be little to no support available for him. I was only 30 years old at the time, and I was devastated. I could not understand how I was expected to provide a good life for my son and my family if I could no longer work and instead had to rely solely on government support.
The NDIS changed that. It allowed my son to remain at home with his family and gave him opportunities, dignity, stability and community participation. It also allowed me to continue working and contributing to society while ensuring my son received the support he needed.
Why Self-Management Matters
I have always wanted the very best for my son. I did not want him placed into a group home. I wanted him to live his life his way, in his home, surrounded by people who genuinely knew and cared about him.
From the beginning, I created a business solely for my son so I could employ staff of his choosing, oversee every aspect of his support, and create conditions that encouraged workers to stay long-term and build meaningful relationships with him.
I manage recruitment, training, wages, compliance, rostering and every other aspect of running a business. Unlike providers, I do all of this unpaid and in my own time because I am a mother trying to provide the best possible life for her son.
My son requires 24/7 support. He cannot be left alone and requires assistance with every aspect of daily living. The supports he receives are individualised to his needs and have enabled him to remain at home, maintain his functional capacity, and avoid invasive and painful surgeries.
My son is non-speaking. Learning his communication style takes time, trust, patience and consistency. The support workers who know him well are not simply employees; they are an essential part of his safety, wellbeing and quality of life.
If self-management is removed or restricted, my son will lose the highly individualised support model we have spent years developing. His choice and control will effectively disappear, and the supports that enable him to live safely and meaningfully at home may no longer be possible.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
Concerns About Mandatory Provider Registration
The proposal for mandatory provider registration raises significant concerns for families like mine.
I have worked hard to build a support model that reflects the principles of the NDIS Code of Conduct and incorporates strong safeguards, policies, procedures and worker accountability.
The reality is that many larger providers cannot offer the level of consistency, flexibility and personalised care my son receives through self-management.
A revolving door of unfamiliar support workers would place my son’s wellbeing and safety at risk. He deserves to live in a home, not in what feels like a workplace staffed by strangers.
Any registration model must preserve safe self-directed arrangements and recognise that families are often best placed to build support systems that genuinely meet the needs of their loved ones.
The Importance of Review Rights
Approximately two and a half years ago, I received what I was told was a simple “check-in” phone call from the NDIA while I was on a rare short break from my caring responsibilities. That “check-in” quickly became a plan review conducted by someone who appeared to have very limited understanding of my son’s disabilities and support needs.
As a result, my son’s plan was significantly reduced, leaving him without critical supports and therapies that maintained his functioning and quality of life. We were forced to seek a review and eventually proceeded to the Administrative Review Tribunal, where it was ultimately agreed that my son did in fact require the supports we had requested.
Had the NDIA taken the time to properly consider the extensive reports and recommendations provided by qualified allied health professionals, rather than disregarding them and assuming they knew better, we would never have been placed in this position in the first place. The eventual outcome demonstrated that the original decision was incorrect and highlighted why independent review mechanisms are essential safeguards within the NDIS.
Although families should not be forced to fight through stressful and lengthy review processes simply to retain supports that are clearly evidenced, clinically recommended, and essential to maintaining a person’s safety, functioning and quality of life, there must still be accessible and transparent options available to have decisions reviewed when they are wrong.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
No system or decision-maker is perfect. People with disability and their families must retain the right to seek both internal and external reviews to ensure accountability, fairness and protection from decisions that may place lives, wellbeing and long-term stability at risk.
If review pathways are removed or weakened, people with disability and their families will be left without protection when decisions are wrong. This places lives at risk — not only the lives of people with disability, but also the wellbeing and sustainability of their carers and informal supports.
Concerns About Suspension of Plans Due to Non- Contactability
I am deeply concerned about the proposed provisions that would allow the CEO of the NDIA to suspend a participant’s plan if the Agency determines that the participant is “not contactable.”
I am particularly concerned about how these provisions would operate for families like mine. My son is non-speaking and unable to independently communicate with the NDIA. As his legal guardian, I am responsible for managing all communication relating to his NDIS plan and supports. However, I am also his primary advocate, manage his support arrangements, and work to support our family financially. There are times when I am unavailable to answer a phone call, return a message immediately, or respond within a short timeframe.
Over the years, there have been numerous occasions where the NDIA has attempted to contact me, and I have been unavailable at that particular time. There have also been occasions where I have received messages advising that the NDIA would contact me, only for that contact not to occur. On other occasions, I have later been advised that records indicate attempts were made to contact me, despite no contact having actually occurred.
These experiences highlight why clear definitions, transparency, and accountability are essential if a person’s supports may be suspended on the basis that they are considered “not contactable”. These situations are not unusual and are part of everyday life for many families managing complex disability supports alongside employment, caring responsibilities, medical appointments, and other commitments.
This raises important questions about how “not contactable” will be determined. What timeframes will apply? How many contact attempts must be made? Through what methods? Who determines whether those attempts have been reasonable? What happens when a participant’s guardian or nominee is temporarily unavailable due to work, illness, caring responsibilities, travel, or other legitimate reasons?
A participant’s access to essential disability supports should not depend on their ability, or their guardian’s ability, to answer a phone call at a particular moment in time. The legislation must include clear safeguards to ensure that participants are not disadvantaged because of
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
communication barriers, disability-related circumstances, or the practical realities of caring and family life.
For many people with disability, particularly those with complex support needs, cognitive impairment, communication difficulties, mental ill health, homelessness, hospital admissions, family crises, or unstable living circumstances, periods of being difficult to contact are not uncommon. In many cases, these circumstances are directly related to a person’s disability and support needs.
My concern is that the proposed provisions place participants at risk of losing access to essential supports precisely when they may be at their most vulnerable.
The Bill does not clearly define what constitutes a “reasonable attempt” to contact a participant. Who determines whether those attempts have been reasonable? How many attempts must be made? Through what methods? Over what period of time? Has consideration been given to whether the participant has a nominee, guardian, support coordinator, advocate, family member, or other authorised representative who could be contacted before a plan is suspended?
Without clear safeguards, there is a significant risk that participants could have their plans suspended due to administrative failures, communication breakdowns, outdated contact details, periods of illness, hospitalisation, family emergencies, natural disasters, mental health crises, or other circumstances outside of their control.
For participants who rely on NDIS-funded supports for their daily care, safety, health, and community participation, suspension of a plan can have devastating consequences. A loss of funding may result in the loss of support workers, therapies, personal care, transport, community access, and other essential supports that enable a person to live safely and with dignity.
I am particularly concerned about participants who have limited capacity to advocate for themselves, who are socially isolated, who do not have strong informal supports, or who may not understand that their plan has been suspended until critical supports have already ceased.
The proposed 90-day period also raises concerns. If a participant fails to contact the Agency within that timeframe, their suspension can continue indefinitely and may ultimately lead to the revocation of their participant status. This creates a very real risk that some of the most vulnerable people in our community could lose access to the Scheme entirely.
A participant’s plan should not be suspended or revoked solely because they are deemed “not contactable.” Before any suspension occurs, the NDIA should be required to demonstrate that comprehensive efforts have been made to contact the participant through multiple methods and through all relevant representatives and supports connected to that person.
At a minimum, the legislation should clearly define what constitutes a reasonable attempt to contact a participant and establish strong safeguards, oversight, review rights, and escalation processes before any suspension can occur.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
The focus of the NDIS should be on identifying why a participant may not be contactable and ensuring their safety and wellbeing, rather than suspending supports that may be critical to their health, independence, and quality of life.
I ask the Committee to recommend amendments that prevent plans from being suspended or participant status being revoked solely on the basis that a person is considered “not contactable” without robust safeguards, independent review rights, and evidence that every reasonable effort has been made to ensure the participant’s safety and ongoing access to support.
Concerns About “Appropriate Treatment”
I have serious concerns regarding the proposed concept of “appropriate treatment”.
Who decides what is appropriate? What happens when a treatment may reduce one symptom while significantly worsening a person’s overall functioning and independence?
Will this be determined by appropriately qualified medical and allied health professionals with expertise in the person’s disability, or by NDIA decision-makers who may not possess the clinical expertise required to assess complex treatment risks and long-term functional impacts?
I am also concerned about situations where a participant’s access to disability supports may be affected because they are unable to access what is considered “appropriate treatment”. Many people with disability live on low incomes or in regional, rural, and remote communities where specialist medical services are unavailable, have extensive waiting lists, or are financially inaccessible. It would be fundamentally unfair to reduce or deny disability supports because a person cannot access treatment that is beyond their financial means or geographical reach.
Would someone decide my son should undergo brain surgery for epilepsy despite the risks involved? Would they decide he should undergo tendon release surgery that may reduce pain but leave him unable to perform standing transfers, grip a pencil to create art, or kick a ball?
The therapies my son currently receives help manage pain while preserving his strength, mobility and participation in life. That matters.
Disability support should be based on maintaining and improving quality of life, not narrowly focusing on a single outcome while ignoring broader consequences.
Pricing and Workforce Sustainability
I am deeply concerned about Ministers determining pricing and support costs without appropriate independent oversight.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
Pricing decisions must properly consider Fair Work obligations, award wages, superannuation, insurance, training, compliance requirements, workforce shortages and safe staffing arrangements.
There should be an independent body responsible for making these decisions based on evidence and workforce sustainability, not solely on reducing expenditure.
Cost-cutting measures that ignore the realities of disability support place vulnerable people at risk.
What I Ask the Committee to Recommend
I ask the Committee to recommend that the Bill not proceed unless it is amended to:
- Protect self-management and preserve genuine choice and control.
- Ensure provider registration requirements do not remove safe and effective self-directed support arrangements.
- Preserve accessible internal and external review rights for all NDIS participants.
- Require the NDIA to clearly define and publish what constitutes a “reasonable attempt” to contact a participant, nominee, or guardian, including minimum contact requirements, multiple communication methods, documented consideration of individual circumstances, and mandatory review rights before any suspension or revocation action can occur.
- Ensure decisions about appropriate treatment are evidence-based, transparent, rights-based, and made with input from suitably qualified professionals, while also taking into account a person’s practical ability to access treatment, including financial, geographical, and service availability barriers.
- Establish independent oversight of pricing decisions.
- Require genuine consultation with people with disability, families, carers and advocates before major changes are implemented.
The NDIS was created to provide individualised support and empower people with disability to live ordinary lives in their communities. The proposed changes risk moving away from those principles and returning to a system that limits choice, control and individual circumstances.
I urge the Committee to listen to people with disability, families, carers and advocates and ensure that any reforms strengthen, rather than diminish, the rights and wellbeing of those the Scheme was designed to support.
The NDIS has enabled my son to live a life of dignity, safety, participation, and connection to his family and community. The proposed changes risk undermining the very principles upon which the Scheme was built. I respectfully ask the Committee to ensure that any reforms strengthen
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 135
participant rights, preserve choice and control, and protect the safety and wellbeing of people with disability and those who support them.