Submission 1975

Submission to the National Disability Insurance Scheme Amendment Bill

(Securing the NDIS for Future Generations) Bill 2026

Introduction

This submission is informed by lived experience as parents of a young person who lived with and died from a progressive neurodegenerative condition. Our experience involved navigating changing and complex support needs over time, including significant care requirements, long-term planning for accessibility and housing, and balancing multiple family responsibilities.

This submission responds to specific provisions in the Bill and their potential impact on participants and families.

1. Functional Capacity Framework (Eligibility and Assessment)

Proposal: The Bill proposes a functional capacity framework for determining eligibility and support needs, placing greater emphasis on how a person’s disability affects their day-to-day functioning.

Concern: The proposed functional capacity framework may disadvantage people with degenerative conditions whose needs change over time; sometimes in a very short time. It should explicitly require consideration of longitudinal specialist evidence and disease trajectory. Diagnosis should remain central to assessment, and variability in function should be recognised as typically occurring between higher-need and lower-need periods rather than stability.

Personal experience and suggested amendment: Our daughter was initially diagnosed at age 6 with a retinal dystrophy after a year of specialist and other appointments. We found she was already legally blind at diagnosis. It was expected that her vision would deteriorate over time; however, she lost most of her remaining sight within only a few years. At age 13 she was subsequently diagnosed with Juvenile Batten Disease (CLN3), a life-limiting neurodegenerative condition.

As her condition progressed, her functional capacity changed significantly and at times deteriorated more quickly than anticipated. Planning for future needs was essential. For example, equipment such as a fitted electric wheelchair take considerable time to assess, approve, build and deliver. Decisions based solely on a person’s current level of function may fail to account for foreseeable deterioration and future support requirements.

Submission 1975

A single assessment or snapshot of her abilities at a particular point in time would not have accurately reflected the nature of her condition, the extent of her disability, or her future support needs.

For people living with progressive neurodegenerative conditions, specialist clinical evidence and knowledge of the expected disease trajectory are essential. I am concerned that an over-reliance on functional capacity assessments may not adequately capture the realities of these conditions. While functional assessments have a role, they should not outweigh diagnostic evidence and specialist opinion. Assessment outcomes should also remain reviewable, particularly where a condition is known to be degenerative and further deterioration is expected, or where, as occurred in our daughter’s case, the full diagnosis and implications of the condition only became apparent over time, meaning deterioration was quicker than “expected”.

Definition of “Permanent” Disability

Proposal: The Bill proposes changes to how “permanent” disability is assessed, including consideration of whether impairments can be treated, managed or alleviated.

Concern: While treatment and management may sometimes alleviate symptoms, this does not alter the underlying permanence of a progressive disability. There is also a risk of inequity, as access to treatment may depend on geography, availability of specialists, or financial capacity. People in rural or remote areas may not be able to access ongoing treatment, and this should not affect whether a condition is considered permanent.

Personal experience and suggested amendment: Our daughter lived with a neurodegenerative condition. Some symptoms could sometimes be temporarily alleviated, but this did not change the progressive nature of the condition nor alter its permanence. Her condition was Juvenile Batten Disease (CLN3) and can also be grouped with other rare, neurodegenerative conditions and called “Childhood Dementia”. Some symptoms would fluctuate and she may appear coherent on some days but not on other days. Adult dementias are similarly variable and so are some conditions like MS.

Treatment and therapy should not be interpreted as evidence that a condition is not permanent or likely to resolve.

Reasonable and Necessary Supports / Informal Supports

Concern: Informal family support should not be assumed to be unlimited or consistently available. While families like ours provide substantial care and are happy to do so, this must be assessed in the context of their competing responsibilities plus disability severity.

Personal experience and suggested amendment: As parents, we provided extensive care for our daughter throughout her neurodegenerative condition. Her needs included emergency hospital presentations due to seizures, mobility assistance, communication

Submission 1975

• Support, medication administration, feeding support, supervision and emotional support,
• Including two-person assistance for personal care and showering.

When one of us needed to support our other daughter with school and HSC commitments, or assist elderly parents at home or in hospital, additional care arrangements were often required to ensure our daughter’s needs could be safely met. At the same time, maintaining employment remained necessary to support our family financially so there was often only one parent available to support both daughters in two different places.

While care responsibilities were primarily met within our family, there were times when additional support was essential. This experience demonstrated that even highly committed families cannot always absorb all caring responsibilities without assistance.

Many families experience overlapping caring responsibilities alongside work and other obligations. Informal supports should therefore be assessed in terms of sustainability and capacity rather than assumed availability.

Plan End Dates and Unused Funds

Proposal: The Bill proposes that plans have end dates and that unspent funds will generally not carry over into a new plan period.

Comment: While regular plan review is appropriate, flexibility is needed where participants are unable to access supports due to circumstances beyond their control such as illness, hospitalisation, or provider shortages.

Suggested amendment: The Bill should provide discretion to carry forward funds where participants can demonstrate that supports could not reasonably be accessed despite genuine need.

Automated Decision-Making

Proposal: The Bill proposes expanded use of automated decision-making in some administrative NDIS processes.

Concern: While automation may improve efficiency, it may not adequately account for individual circumstances in cases involving complex or degenerative conditions. Disability is often experienced in ways that change over time and require contextual understanding that may not be captured in standardised processes. A full understanding of the complexity and level of disability by someone with extensive experience in disability is important for understanding.

Personal experience and suggested amendment: Our daughter’s neurodegenerative condition changed over time, with symptoms and support needs sometimes evolving gradually and sometimes unexpectedly. The full impact of her condition was only understood through ongoing observation, specialist input and the progression of the

Submission 1975

The disease itself. We didn’t have the language or experience to understand some symptoms and issues she was experinecing and needed expert help.

Some symptoms were initially attributed to other factors. For example, we believed her severe anxiety was largely related to her rapid vision loss and the challenges she was experiencing at school. It was only later that we learned, through specialist assessment, that the underlying neurological disease was a significant contributing factor. This understanding changed our perception of her support needs and highlighted the importance of considering the broader clinical picture rather than relying on a snapshot in time.

A snapshot approach would not have accurately reflected either her actual support needs or the likely progression of those needs over time.

The Bill should ensure that decisions affecting eligibility, supports or participant rights include meaningful human oversight and clear access to review by a human decision-maker.

6. Compliance and Anti-Fraud Powers

Proposal: The Bill proposes strengthened fraud prevention, compliance and oversight powers within the NDIS.

Comment: These measures are important to protect the integrity of the Scheme and ensure appropriate use of public funding.

Concern: Compliance measures should not create unnecessary administrative burden for participants, carers, or legitimate providers. Many families are already managing substantial and complex caring responsibilities, including ours, and systems should minimise additional pressure on those providing care.

Suggested amendment: Compliance and anti-fraud measures should be proportionate, transparent, and focused on preventing misuse while minimising impact on participants and families acting in good faith.

7. Governance and Delegated Legislation

Proposal: The Bill expands the use of delegated legislation and future rule-making in relation to key aspects of the NDIS.

Concern: Significant aspects of the NDIS may be determined through delegated legislation rather than clearly set out in the Bill. Changes affecting eligibility, supports, and participant rights should be subject to appropriate parliamentary scrutiny and transparency.

Personal experience and suggested amendment: Families living with disability require certainty in order to plan for the future. Soon after our daughter’s diagnosis, it became clear that within a relatively short timeframe our home would no longer be safe due to 14 internal stairs. We understood that major changes such as home modifications or relocation

Submission 1975

took considerable time to plan and implement. In our case, this need became urgent sooner than expected as her blindness when combined with reduced mobility plus cognitive decline increased the risk of serious falls. To clarify: even slightly reduced mobility which could likely be managed with sight but became dangerous and unmanageable at an earlier stage as we realized she had lost spatial awareness and had some cognitive decline alongside being blind.

These were time-sensitive decisions that affected the entire family because moving would affect schooling/transport for her sister as well as herself and required planning in the context of a rapidly changing condition. Participants and families should have opportunities to contribute to decisions that affect long-term planning and access to supports.

Suggested amendment: The Bill should require meaningful consultation with participants, carers, and disability organisations before significant changes are made through delegated legislation, and ensure appropriate parliamentary oversight of those changes.