Submission to the Senate Community Affairs
Legislation Committee
Inquiry into the National Disability Insurance Scheme
Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by
Jennifer Newman
Grandmother, Guardian, Primary Carer and Advocate
Executive Summary
I welcome the opportunity to provide this submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I support the Australian Government’s commitment to ensuring the National Disability Insurance Scheme (NDIS) remains sustainable for future generations. Measures that strengthen integrity, improve consistency of decision-making and protect public confidence in the Scheme are important.
However, the long-term sustainability of the NDIS must also be measured by its ability to continue meeting the needs of Australians with profound and permanent disability whose support needs are lifelong and cannot be reduced through treatment or intervention.
This submission considers the practical impact of several proposed amendments on participants requiring intensive, highly specialised and permanent supports.
My comments draw upon more than twenty-five years of experience supporting my grandson, Chris, a participant with profound disability who requires one-to-one support twenty-four hours a day, seven days a week.
Chris’s circumstances demonstrate how legislative reforms intended to improve efficiency may have unintended consequences for participants with the highest and most complex support needs.
This submission focuses on the following themes:
Functional capacity assessments for participants with permanent disability.
Recognition of lifelong and permanent support needs. Supports that address the combined functional impact of multiple impairments. Continuity of highly trained specialist disability support workers. Long-term planning certainty. Sustainability of informal caring arrangements. Prevention-focused supports. The interaction between the NDIS and mainstream service systems.
The submission concludes with recommendations intended to strengthen the Bill while supporting both participant outcomes and the long-term sustainability of the Scheme
About the Author
My name is Jenny Newman.
For more than twenty-five years I have been the primary carer, guardian and advocate for my grandson Chris, whom I have raised since he was two years of age.
Throughout that time, I have worked extensively with neurologists, psychiatrists, psychologists, occupational therapists, speech pathologists, behaviour support practitioners, disability providers and the National Disability Insurance Agency.
My role extends well beyond that of a family member.
I coordinate every aspect of Chris’s supports including:
specialist medical care; epilepsy management; behaviour support implementation; Positive Behaviour Support planning; Augmentative and Alternative Communication (AAC); provider engagement; recruitment and training of support workers; NDIS planning and reviews; risk management; emergency responses; and ongoing advocacy to ensure supports remain appropriate, evidence-based and centred on Chris’s needs.
The views expressed in this submission are informed by lived experience and many years navigating the disability, health and community services sectors.
About Chris
Chris is a twenty-seven-year-old man with permanent and profound disability.
His diagnoses include:
Autism Spectrum Disorder requiring very substantial support (Level 3); Severe Intellectual Disability; Drug-resistant epilepsy; Attention Deficit Hyperactivity Disorder; Obsessive Compulsive Disorder; Post-Traumatic Stress Disorder; and Significant communication impairment.
Chris is non-verbal and communicates primarily through Augmentative and Alternative Communication (AAC), visual supports and the observations of people who know him well.
His disabilities are permanent.
There is no expectation that his functional capacity will improve to a level that would reduce his need for intensive support.
Chris requires one-to-one support twenty-four hours a day, seven days a week.
His support needs extend well beyond assistance with daily living.
His support workers are responsible for recognising subtle behavioural and physical changes that may indicate:
an impending epileptic seizure; escalating anxiety; sensory overload; behavioural distress; confusion; communication frustration; or environmental risks.
Failure to recognise these indicators can result in significant harm.
Continuity of Highly Skilled Supports
For Chris, support workers are not interchangeable.
Each member of his team requires extensive training before they are able to safely support him.
Training includes:
epilepsy recognition and emergency response;
autism-specific support strategies; Positive Behaviour Support implementation; trauma-informed practice; communication using AAC; sensory regulation; environmental modification; community risk management; seizure documentation; medication awareness; and implementation of detailed clinical recommendations provided by Chris’s treating specialists.
This knowledge develops over many months.
It cannot be replaced through general disability support training.
Replacing experienced staff with unfamiliar workers significantly increases clinical risk.
The continuity of experienced support workers should therefore be recognised as an essential component of reasonable and necessary supports for participants with profound disability.
- Recognise “Clinical Complexity” as distinct from hours of support The Bill focuses on functional capacity and support needs, but it does not distinguish between participants who require many hours of support and those who require highly specialised support.
Chris does not simply require 24-hour support—he requires 24-hour clinically informed support.
I recommend:
The Committee consider whether the planning framework adequately recognises participants whose support needs are driven by clinical complexity rather than the quantity of support hours alone.
- Continuity of support workers should be recognised as a protective factor For Chris, continuity means:
fewer behavioural incidents; fewer seizures resulting from stress; fewer restrictive practices; less anxiety; greater community participation; reduced hospital presentations.
That is measurable.
I recommend that the NDIA be required to consider continuity of established support teams when determining whether supports remain reasonable and necessary.
- Workforce capability affects participant outcomes Chris’s workers receive ongoing training from:
his neuropsychiatrist; speech pathologist; behaviour support practitioner; occupational therapist; epilepsy specialists; and you as his guardian.
The legislation could better recognise that specialist disability supports are only effective if workers are appropriately trained.
- Family carers are part of the support system Jenny:
recruit staff; train staff; coordinate therapists; liaise with specialists; manage medication; monitor risk; attend reviews; advocate; maintain documentation.
This is effectively unpaid case management.
Planning should explicitly consider the sustainability of this coordination role.
- Economic sustainability Supporting Participants with Profound Disability is an investment, not a Cost
Appropriate supports prevent:
hospital admissions; ambulance call-outs; mental health crises; police involvement;
placement breakdown; emergency accommodation; increased use of restrictive practices.
- Outcome measures should be appropriate to the participant This is something I feel strongly about.
Many NDIS discussions focus on independence.
For Chris, success is measured differently.
Success means:
being safe; communicating; remaining healthy; participating in the community; avoiding crises; maintaining relationships; preserving dignity.
The legislation should recognise that maintaining stability is a positive outcome for some participants.
- Profound Autism is different He represents a very small group of participants with profound support needs.
Internationally, there has been increasing recognition that a subset of autistic people has profound impairments and require lifelong, intensive support. Chris’s experience illustrates why planning for this group needs to recognise that support requirements are fundamentally different from those of many other participants on the autism spectrum.
Chris:
is non-verbal; requires lifelong 1:1 support; cannot safely self-direct; cannot recognise danger; has epilepsy; requires behavioural support; requires specialist communication support; will require these supports throughout his lifetime.
This isn’t about creating a separate category of participants—it is about ensuring the planning framework recognises the realities of those with the highest support needs.
What Securing the NDIS Should Mean for Participants with Profound Permanent Disability
“For participants such as Chris, securing the NDIS should not be measured solely by reducing expenditure or improving administrative efficiency. It should also be measured by the Scheme’s continued capacity to provide stable, specialised and evidence-based supports that enable people with profound and permanent disability to live safely, participate in their communities and avoid preventable crises. The long-term sustainability of the NDIS depends not only on managing costs but on investing in supports that prevent higher costs across the health, emergency and social service systems.”
Why Chris’s Circumstances Are Relevant
to this Bill
Chris’s circumstances illustrate many of the issues that the proposed legislation seeks to address.
The Bill introduces reforms intended to improve consistency, sustainability and planning across the NDIS.
For participants with permanent disability requiring lifelong intensive support, these reforms must be implemented carefully to avoid unintended consequences.
The recommendations contained within this submission are not intended to expand the Scheme beyond its purpose.
The Committee should consider whether the planning framework adequately recognises participants whose support needs are driven by clinical complexity rather than the quantity of support hours alone.
Part 2 – Functional Capacity, Permanence
and Planning
Functional Capacity – Recognising Permanence While
Supporting Good Decision-Making
The Bill introduces a statutory framework for assessing a participant’s functional capacity as an important element of NDIS decision-making. Consistent and evidence-based assessment is an appropriate objective and can improve equity across the Scheme.
However, the legislation should also recognise that not all participants present the same level of uncertainty regarding their future support needs.
For participants with profound and permanent disability, the primary issue is often not whether they require support, but the level and type of support required throughout their lifetime.
Chris has undergone comprehensive assessments by neurologists, neuropsychiatrists, psychologists, occupational therapists, speech pathologists and behaviour support practitioners over many years.
Each assessment has consistently reached the same conclusion:
his disabilities are permanent; his communication impairment is permanent; his epilepsy remains lifelong and complex; he requires continuous one-to-one supervision; he will require intensive supports for the remainder of his life.
Repeated functional capacity assessments are therefore unlikely to produce materially different findings.
For participants such as Chris, repeated reassessment can create unnecessary administrative burden for families, clinicians and the NDIA while diverting scarce clinical resources away from participant care.
The Committee should consider whether the legislation sufficiently distinguishes between:
participants whose functional capacity is expected to change; and participants whose disabilities are lifelong, permanent and well established.
Doing so would allow assessment resources to be directed where they provide the greatest benefit while reducing unnecessary duplication for participants with permanent disability.
Recommendation 1
The Committee should consider amending the legislation to recognise that where permanent disability has been consistently established through comprehensive specialist evidence, existing evidence should continue to inform planning decisions unless there has been a significant change in the participant’s circumstances.
Permanence and Appropriate Treatment
The Bill recognises that consideration may be given to whether all appropriate treatment has been explored when determining the permanence of an impairment.
This principle is appropriate where treatment may significantly improve functional capacity.
However, it should not create an expectation that participants with profound lifelong disabilities continually pursue new interventions simply to demonstrate eligibility or maintain existing supports.
For Chris, treatment does not remove disability.
Medical care aims to:
manage epilepsy; reduce behavioural distress; improve communication; support physical health; improve quality of life; and minimise risk.
None of these treatments will remove the underlying disabilities or eliminate his need for permanent one-to-one support.
Families should not be placed in a position were declining an experimental, burdensome or clinically inappropriate intervention could be interpreted as failing to pursue “appropriate treatment.”
Likewise, ongoing participation in therapy should not be viewed as evidence that a participant’s disability is temporary.
For participants with profound disability, therapy is frequently provided to maintain function, prevent deterioration and improve quality of life—not to achieve independence.
Recommendation 2
The Committee should clarify that, for participants with lifelong and permanent disability, treatment undertaken to maintain health, manage symptoms or prevent deterioration should not be interpreted as evidence that the impairment is not permanent.
Recognising Maintenance as a Legitimate Outcome
Many NDIS supports are preventative.
For Chris, speech pathology, occupational therapy, behaviour support and specialised disability supports do not exist to “cure” disability.
They exist to maintain communication, reduce behavioural escalation, minimise restrictive practices and support safe participation in everyday life.
Without these supports, Chris would not improve.
He would deteriorate.
The success of these supports should therefore be measured by the stability they provide rather than by an expectation of increasing independence.
The legislation should continue to recognise that maintaining functional capacity is, in itself, a valuable outcome for participants with profound disability.
Recommendation 3
The Committee should ensure the legislative framework recognises maintaining existing functional capacity and preventing deterioration as legitimate and valuable outcomes for participants with permanent disability.
Planning Certainty
The Bill introduces arrangements relating to plan duration, renewal and planning processes.
For participants with stable lifelong disabilities, certainty is critical.
Chris’s supports cannot be organised at short notice.
Recruiting suitable support workers, providing specialist training and maintaining a consistent workforce takes considerable time and investment.
Frequent planning uncertainty affects:
workforce retention; provider confidence; continuity of care; participant wellbeing; and family stability.
Longer planning periods for participants with permanent disability would reduce unnecessary administrative activity while allowing the NDIA to focus resources on participants whose circumstances are changing.
Recommendation 4
The Committee should encourage the use of longer-duration participant plans where disabilities and support needs are permanent, stable and supported by consistent clinical evidence.
Planning Should Recognise Clinical Risk
Current planning decisions often focus appropriately on the quantity of funded supports.
However, for participants such as Chris, the quality and continuity of those supports are equally important.
Chris’s disability support workers require detailed knowledge of:
his seizure profile; early indicators of distress; communication methods; behavioural support strategies; sensory regulation; emergency procedures; trauma-informed approaches; and environmental risks.
This knowledge develops over months of practical experience.
The support provided by an experienced worker is therefore not equivalent to the support provided by a newly appointed worker, even where both receive the same number of funded hours.
Planning decisions should recognise that continuity of skilled supports contributes directly to participant safety and reduces the likelihood of avoidable crises.
Recommendation 5
The Committee should consider whether the planning framework adequately recognises the importance of continuity of highly skilled supports for participants whose safety depends upon specialist knowledge developed over time.
Part 3 – Reasonable and Necessary
Supports, Multiple Impairments and
Continuity of Skilled Supports
Supports Should Be Considered Holistically
The Bill seeks to strengthen the framework for determining what supports are funded through the NDIS by reinforcing that supports must be connected to a participant’s eligible impairments and meet the legislative test for funding.
I support the principle that NDIS funding should be directed to supports that are reasonable, necessary and related to a participant’s disability.
However, for participants with profound and complex disability, a person’s impairments cannot always be separated into distinct categories for the purpose of determining support needs.
Chris’s disabilities do not exist independently of one another. They interact continuously and collectively determine his functional capacity.
His Autism Spectrum Disorder affects communication, sensory processing, social understanding and behavioural regulation.
His severe intellectual disability limits his ability to understand risk, make informed decisions, solve problems and learn new tasks.
His epilepsy creates an ongoing risk of sudden seizures, injury and periods of post-ictal confusion.
His obsessive-compulsive disorder and post-traumatic stress disorder contribute to anxiety, rigidity, distress and behavioural escalation.
Each condition magnifies the impact of the others.
It is therefore the combined functional effect of Chris’s disabilities—not any single diagnosis—that determines the supports he requires.
A legislative framework that focuses too narrowly on whether a support relates to one impairment risks overlooking the reality that participants often experience disability as an interaction of multiple permanent conditions.
Recommendation 6
The Committee should ensure the legislation continues to support funding decisions based on the participant’s overall functional capacity and the combined impact of multiple eligible impairments.
Reasonable and Necessary Supports Should Include
Preventative Supports
The NDIS has been most successful when it has invested in supports that prevent deterioration rather than responding only after crisis occurs.
Chris’s funded supports include behaviour support, speech pathology, occupational therapy, assistive communication, community participation and specialist disability support.
These supports do not eliminate disability.
They reduce risk.
They maintain stability.
They improve communication.
They reduce behavioural escalation.
They decrease reliance on restrictive practices.
They reduce avoidable hospital presentations.
They enable safe participation in the community.
Without these supports, Chris’s needs would not remain static. They would become more complex, requiring significantly greater intervention from the disability, health and emergency service systems.
Preventative supports should therefore be recognised as an essential investment in both participant wellbeing and the long-term sustainability of the Scheme.
Recommendation 7
The Committee should ensure the legislative framework continues to recognise preventative supports that maintain functioning, reduce risk and avoid higher long-term costs across government systems.
Continuity of Highly Skilled Support Workers
One of the greatest risks for participants with profound disability is the assumption that disability support workers are interchangeable.
For Chris, they are not.
Each member of his support team develops specialised knowledge over many months through structured training, supervised practice and lived experience supporting Chris in a wide range of environments.
This knowledge includes:
recognising subtle indicators of an impending seizure; understanding Chris’s individual communication style; identifying behavioural triggers before escalation occurs; implementing Positive Behaviour Support strategies consistently; recognising sensory overload; applying trauma-informed approaches; understanding environmental risks; implementing epilepsy emergency procedures; and supporting Augmentative and Alternative Communication.
These are not generic support worker skills.
They are participant-specific competencies developed over time.
Replacing experienced workers with unfamiliar staff significantly increases the likelihood of behavioural escalation, injury, seizure-related complications, emergency interventions and avoidable hospital admissions.
Continuity of experienced workers therefore contributes directly to participant safety.
For participants with profound disability, continuity should not be viewed as a preference.
It is a clinical safeguard.
Recommendation 8
The Committee should recognise that, for participants requiring highly specialised supports, continuity of experienced support workers is an important factor in achieving safe, effective and reasonable supports under the NDIS.
Highly Trained Supports Are a Cost-Saving Measure
Specialist disability support is sometimes viewed primarily as a service cost.
In Chris’s circumstances, it is also a significant cost avoidance measure.
When highly trained support workers recognise early signs of anxiety, sensory overload or seizure activity, they are often able to intervene before a situation becomes a behavioural crisis or medical emergency.
This reduces:
ambulance call-outs; emergency department presentations; hospital admissions; injuries; restrictive practices; police involvement; and breakdown of support arrangements.
The cost of maintaining an experienced workforce is substantially lower than the cost of responding to repeated crises.
Investment in workforce capability therefore supports both participant outcomes and the financial sustainability of the NDIS.
Recommendation 9
The Committee should recognise that investment in skilled and consistent disability support workforces contributes to the long-term sustainability of the Scheme by reducing avoidable crises and associated government expenditure.
Assistive Communication Is Essential, Not Optional
Chris is non-verbal.
His ability to communicate depends on Augmentative and Alternative Communication (AAC), visual supports and support workers who understand how he communicates.
Communication is fundamental to:
expressing pain; making choices; reducing frustration; participating in daily life; maintaining dignity; and preventing behavioural escalation.
Without effective communication supports, Chris’s behaviour is more likely to be misunderstood, increasing the risk of inappropriate responses and unnecessary restrictive practices.
Funding for communication supports should therefore continue to be recognised as directly related to functional capacity and participant safety.
Recommendation 10
The Committee should ensure the legislation continues to support funding for communication supports that enable participants with complex communication needs to safely express themselves and participate in everyday life.
Measuring Success Differently for Participants with
Profound Disability
Many NDIS outcomes are framed around increasing independence.
For participants such as Chris, independence is not a realistic or clinically appropriate measure of success.
Success is demonstrated through:
remaining safely in the community; maintaining physical health; reducing behavioural distress; preserving communication; preventing deterioration; avoiding crisis; maintaining relationships; and improving quality of life.
The legislation should recognise that, for participants with profound and permanent disability, maintaining stability and safety is a successful outcome in itself.
A planning framework that values maintenance alongside improvement will better reflect the diverse needs of participants across the Scheme.
Recommendation 11
The Committee should ensure the legislative framework recognises that maintaining safety, stability and existing functional capacity is an appropriate and successful outcome for participants with profound and permanent disability.
What Securing the NDIS Should Mean for Participants with Profound Permanent
Disability
“For participants such as Chris, securing the NDIS should not be measured solely by reducing expenditure or improving administrative efficiency. It should also be measured by the Scheme’s continued capacity to provide stable, specialised and evidence-based supports that enable people with profound and permanent disability to live safely, participate in their communities and avoid preventable crises. The long-term sustainability of the NDIS depends not only on managing costs but on investing in supports that prevent higher costs across the health, emergency and social service systems.