30 May 2026
The Secretary
Senate Inquiry into the NDIS Amendments
Dear Secretary
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026 (the Bill)
We write about the design of the next phase of NDIS reform. We have some particular concerns about the proposed amendments to the NDIS which are outlined below.
Our lived experience of disability and as carers
P lives with Primary Lateral Sclerosis, a rare and progressive form of motor neurone disease, which has developed from 2001. P uses a powered wheelchair, and the condition impacts his speech. Our second child, D , was born in 2002 and lives with severe intellectual disability and profound non-verbal autism. D still lives at home and is likely to do so for as long as we can care for him. Our eldest child, M , lives independently and is building her career and enjoying life. Like us, she benefits from the NDIS: without it, she would still be carrying the responsibilities of a young carer. R works full-time in a demanding but rewarding role, and
P is a self-employed publishing consultant. Both P and D rely heavily on the NDIS.
Without it, R would long ago have given up her career to provide full-time care to P and
D .
We are very grateful for the NDIS and want to see that it is sustainable and enjoys broad support in the Australian community. We encourage measures to eliminate fraud and organised crime and to redress inefficiencies in the Scheme.
Since transitioning to the NDIS in 2017, our family has developed an effective model of self management and engage our own independent care workers. This model is now referred to as “self-directed”. We have concerns that the Bill proposes changes that threaten this model.
What self-direction looks like in practice
P requires assistance with every transfer: powered wheelchair to shower chair, to the toilet, to bed. We tried three different registered providers in our first year. The model was fundamentally unworkable. Care was rushed, schedules unreliable, toileting required to be rostered weeks in advance. Workers were not permitted to perform tasks as simple as cutting
P ’s toenails — adding allied-health costs to the Scheme. Scheduling rules required P to be
in bed by 9pm regardless of his own preferences. Because morning care was unreliable, P could not commit to work meetings before 2pm, significantly restricting his ability to continue working. When workers were unavailable, providers could not supply suitable replacements;
R was repeatedly called home from her work to assist P to the toilet.
We moved to directly engaging P ’s support workers. The change transformed his care. His team of four — two of whom have been with him since 2017, and two since 2019 — provide consistent, person-centred support. They work for P , not to a roster. They know him well enough to identify early signs of issues such as pressure-care problems before they become acute. We built a granny flat in our backyard so the primary support worker can live nearby and be available at short notice. P pays his workers above the amount registered providers would pay them; while invoicing the NDIS only 80% of the amount a registered provider would charge for the same hour. The margin is a saving to the Scheme. This year alone P returned almost $90,000 in unspent funds. Under mandatory registration of personal care, those savings could not be made — they exist precisely because direct engagement is cheaper, more responsive, and more efficient than the registered provider model.
D ’s experience is, if anything, more telling. He craves predictability. Registered providers’ scheduling could see him without a worker entirely, or a different worker, with no warning. To D , his independent carers — mainly young men with relaxed personalities who share his sense of humour — are not “workers.” They are his friends. He has learnt the days of the week because he knows which familiar face arrives on which day. When the right worker arrives, D is happy, charming and active. He goes bushwalking, visits parks, visits friends and family, drops the family recycling at the depot. When the wrong worker arrives, or no one arrives, D retreats to his bedroom and nothing will move him.
D is non-verbal, but his receptive communication is good — he follows conversations and is acutely sensitive to being talked about as though he is not in the room. We coach his workers to address him directly and to avoid talking about him in his presence. Workers sent by registered providers, arriving unannounced for a shift, seemed never to have this training and would begin talking about D , to us, the moment they cross the threshold. We have prepared detailed information guides for D ’s workers about his likes and dislikes; with registered providers, those documents almost never reach the worker who turns up. Our independent workers know these documents and follow them.
Whether D is participating in life outside the home — and whether he is being treated with the basic dignity of being spoken to rather than spoken over — is decided, day to day, by whether the team he trusts is around him. Direct engagement is not just better for D . It is structurally necessary for him to participate.
Self-directed participants should be able to decide who provides their care
The Bill itself does not prevent us from continuing the model of care we use today. The change that would dismantle that model is in the policy direction the Bill is designed to enable: the mandatory registration of providers delivering “high-risk supports” — including personal care— to commence on 1 July 2027 through NDIS Rules made under the powers the Bill creates. The
substantive question for self-directing participants is therefore being settled not in Parliament during the passage of this Bill, but in delegated legislation over the next fourteen months.
The Supplementary Impact Analysis on Mandatory Registration appended to the Explanatory Memorandum at page 272 sets out a recommended approach. The NDIS Provider and Worker Registration Taskforce, in its August 2024 advice, proposed a Graduated Risk-Proportionate Regulatory Model with three registration categories: Advanced, General, and Self-Directed. The Self-Directed category was the Taskforce’s mechanism — in its own words — for “affording choice and control for participants who directly employ their supports.” The Department of Health, Disability and Ageing’s preferred option in the SIA is Option 2, which drops the Self Directed category. Our submission is that the case for omitting it does not hold up on the analysis in the SIA, and that the case for restoring it is overwhelming.
The SIA’s own analysis does not support omitting the Self-Directed category
Our concerns about the SIA are, in summary:
First, the SIA materially misdescribes Option 1. It claims Option 1 would impose administrative complexity on participants. That is incorrect. Under the Taskforce model, it is the self-directing participant, not each individual worker, who is the registered entity. The cohort to be registered is a small, identifiable, group — and, as the Department’s own consultations confirm, want this change. Many in this cohort are people like P , or like us as nominees for our son D : technology-literate, deeply invested in the success of this model of care, and already doing the work of self-direction today, largely without NDIA support. Formal registration would be welcomed, not resisted. The misdescription is the principal driver of Option 2’s apparent ranking advantage.
Second, the SIA’s Multi-Criteria Analysis averages across the participant population as if Option 2 affected everyone in the same way. It does not. The “highest-risk supports” category that Option 2 captures include personal care — approximately 80% of P ’s NDIS plan and 60% of D ’s. For us, Option 2 is not a marginal adjustment to our NDIS experience. It is the elimination of the model of care we have built around the most essential supports in our plans, and a fundamental assault on the principle of choice and control promised by the NDIS.
Third, the fiscal justification for Option 2 is unconvincing. In fact, self-direction is materially cheaper per support hour than registered-provider delivery. For personal care, the per-hour delta is typically in the order of $12 to $30. This means that across the self-directing cohort and tens of thousands of support hours per year, abolishing the self-directed pathway costs the Scheme money rather than saving it.
Fourth, the Bill itself already legislates the tools needed to address any pricing or fraud concerns about self-directed arrangements without abolishing them. New section 45C(9) empowers the Minister to set differential price determinations by reference to whether providers are registered. New section 10C and Part 3C give the NDIA compliance and investigation powers reaching every unregistered provider. New section 45B imposes mandatory participant record-keeping with debt-recovery teeth in section 182(4). New section
45A(5) reduces the claim window to 90 days. If self-direction were a pricing risk, the Bill addresses it. If self-direction were a fraud risk, the Bill addresses it. The decision to drop the Self-Directed registration category is a separate choice — and the choice we ask be reversed.
Applying the most defensible corrections to the SIA’s published ratings — within its own framework, scale and methodology, and conservatively — the corrected chart we have prepared shows Option 1 ranking above Option 2. Our analysis also identifies further issues with the SIA’s framing and reasoning that, if applied, would widen Option 1’s margin further.
The rights dimension that the Explanatory Memorandum does not address
In our view, there is a crucial human rights dimension that the EM does not properly address. The Convention on the Rights of Persons with Disabilities, to which Australia is a party, requires at Article 19 that persons with disability can choose where and with whom they live on an equal basis with others. Article 17 protects the integrity of the person. Choosing who enters our home to perform personal care — who lifts us, who showers us, who assists with toileting — sits squarely within both. In the words of another self-directing participant whose framing is exact: we need the right to decide who enters our homes and touches our bodies. Sadly, too many NDIS participants are also survivors of trauma. Removing the choice of who provides the most intimate of care is not safeguarding — it is the opposite. Some participants may resort to unsafe solo transfers rather than accept intimate care from a stranger.
We believe that safety is not enhanced by removing choice. In fact, the only time P has been dropped during a transfer was in hospital, by a team of qualified nurses assisted by a physiotherapist. His independent workers, who know him well, have never caused such an incident.
Frankly, there is also an element of paternalism in this proposal: that no person with a disability or their carer has the capacity to make decisions that keep them safe.
The Taskforce solution and our specific ask
The Taskforce’s recommendation for a Self-Directed registration category provides a clear and practical pathway. Under that proposal, the participant — not each individual worker — is the registered entity, and worker oversight operates within the participant’s registration. The cohort to be registered is therefore small, identifiable and opt-in. The category would register self-directing participants who meet criteria such as a safe workplace, demonstrated administrative skill, and worker-management capacity. It could also provide NDIS training in areas of participant weakness. It could require an annual formal review of each worker against a NDIS template, conducted by the participant and reviewed by the NDIA. It would give the NDIA ongoing visibility through the invoice and worker data already collected through the MyNDIS app. None of this is inconsistent with the Government’s broader reform goals — all of it is consistent with the NDIS Review’s Recommendation 17, the Taskforce’s August 2024 Advice, and the Disability Royal Commission’s emphasis on rights-respecting safeguards.
We are not asking the Government to abandon, limit or delay its reform program. We are asking it to make a design choice that preserves a model of care which the Department’s own
analysis in the SIA acknowledges delivers choice, control, and value for money — at no additional fiscal cost to the Scheme, and with the safeguarding tools already legislated in the Bill itself.
Self-direction has become the scaffolding our lives are built around, and we very much want to protect this model.
Our primary request is this: that the NDIS Rules made under the new section 10C of the Bill — and any future amendments implementing the Graduated Risk-Proportionate Regulatory Model — will include a Self-Directed registration category along the lines proposed by the Taskforce.
From conversations we have had, and correspondence we have received, from the Government to date we believe that it is not the Government’s intention to prevent Self-Directed participants from operating as we do now, with some additional and welcome visibility to help maintain community confidence in the NDIS.
In his letter to us, dated 25 May 2026, Minister Butler said “The 2026-27 Budget announcement, to further expand mandatory registration to high-risk NDIS providers, excludes self-directed supports arrangement. Further work will be undertaken to implement this exclusion ahead of 1 July 2027.”
We are reassured by this statement, and by the Minister’s further statements to consult with the Disability community on the details before these changes take effect.
We know that other self-directing NDIS participants will, like us, be fearful about this aspect of the Bill, and what it represents for the model of care we have carefully developed for the benefit of all. They, like us, are nervously waiting to hear about a clear and transparent process of consultation to ensure that a model is introduced from July 2027 that is genuinely effective both for the Scheme and participants.
Any assistance this Senate Enquiry can provide with this process would be greatly appreciated.
Other topics and suggestions
The introduction of Thriving Kids
Our experience of having a child with disability pre-dates the introduction of the NDIS. From the time of his diagnosis of global developmental delay at age three, we invested heavily in multiple early interventions for our son D , using both our time and financial resources.
There was not at that time a clear pathway to follow. We read all we could, attended multiple courses and cobbled together a range of publicly and privately funded early intervention programs. For instance, R developed an early intervention program that was implemented at home, and D simultaneously attended two early intervention pre-school programs.
Other families we know, with experience of early intervention found that their child responded positively: their child’s speech and life skills developed well. Our D ’s experience was different. He did not have a significant level of improvement and was assessed as needing to
attend a special school. When he started kindergarten, he had some speech, but this soon faded away and since age six he has not spoken at all.
While we understand the rationale for the introduction of the new Thriving Kids program—we all hope our child’s diagnosis will not be lifelong—we also remember how lost and confused we felt when our beautiful son received his initial diagnosis.
To help guide families on this challenging journey, we call on the Government to make the pathway clear: into Thriving Kids and then back to the NDIS, should it be determined that a child is not responding as might have been hoped to the early intervention strategies introduced by Thriving Kids. We would also hope that the move to Thriving Kids can include a “one-stop shop” approach for all families, that is something that did not exist at the time of D ’s diagnosis and would have been of great support and comfort to us. Finally, we call on the Government to ensure that the move to Thriving Kids is sufficiently nuanced so that it will be possible for some children to maintain the therapy they are currently engaged with as change at a critical time may have long term implications for some children.
Confirmation that participants with complex needs, who need to have consistent care to stay safe, will not be left alone due to cuts in social and community participation
Our D has not developed the capacity to assess and manage risk. As his father is unable to
care for him alone, D needs to be cared for by either R or a paid NDIS carer, 24 hours a
day, 7 days a week. When R is at work or having a well-earned break to help make her substantial caring responsibilities sustainable in the long-term, D ’s current NDIS plan which includes mainly flexible “core funding” can be utilised to pay for carers to take D out into the community, while also assisting him with personal care. We seek reassurance that people like D will not be left with reduced care due to the proposed cuts in social and community participation, that may have the impact of placing them at increased risk.
Automatic cut-off from the Scheme after 90 days of no contact
It is proposed by the Bill that a participant, or their nominee, must answer queries from the NDIA in a timely fashion, or, after 90 days of no contact, have their NDIS plan suspended. We accept the need for participants and nominees to be contactable. However, that said, we have at times been contacted by the NDIA on private numbers and at odd times and have not always taken the first call made to us. The NDIA also regularly call P , despite being fully aware he cannot speak. We suggest that a proportionate response to this proposal is that the NDIA introduces an automated reminder system into the NDIS claims system so that whenever the NDIA is wanting to speak to a participant or plan nominee, a reminder alert is received each time that person lodges a NDIS claim.
We would very much welcome any questions Senators may have.
Yours sincerely