Submission 419
Dementia~“le
Australia•‘ft“’
Endeavour House, Level 3,
2-10 Captain Cook Crescent, Griffith, ACT 2603
PO Box 3021, Manuka, ACT 2603
Tel (02) 6255 0722 Email admin@dementia.org.au dementia.org.au 1 June 2026
Senator Dorinda Cox
Committee Chair
C/ - Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
Dear Senator Cox,
Firstly, I must formally express Dementia Australia’s deep disappointment at the timeframes for this consultation process.
The inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill is not accessible to or respectful of people with lived experience of disability, including people living with young onset dementia and carers. Nor is it a reasonable timeframe for disability representative and advocacy organisations to consult with their communities and experts.
The timeframe and approach taken do not provide a reasonable opportunity to understand, engage with, and respond to reforms of this scale and complexity. This is particularly concerning given the significant potential implications of the Bill for people with young onset dementia.
We are extremely concerned that the process immensely limits the ability of stakeholders to properly consider and raise concerns regarding the substance of the Bill.
Notwithstanding the constraints of the process, on the basis of our preliminary analysis, Dementia Australia has a number of concerns about the implications of the proposed reforms, including:
Dementia Australia National Dementia Helpline
Submission 419
-. Dementia , Australia· Functional Capacity and Support Needs Assessment (Schedule 1, Part 1 – new section 9B; Schedule 4 – sections 32K and 32L)
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The proposed functional capacity assessment framework may not appropriately capture the impact of young onset dementia, particularly where assessments rely on short observations, standardised tools or participant self-report despite impaired insight being a common feature of dementia
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Key elements of functional capacity assessment remain undefined and deferred to future Rules, including thresholds, assessment methods and decision-making criteria, creates significant uncertainty regarding how people with dementia will be assessed in practice
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Introduction of a strict “direct and immediate cause” test for supports without clear guidance regarding how complex cognitive, behavioural, psychosocial and supervision-related support needs associated with dementia will be assessed or evidenced
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Increased reliance on standardised and automated decision-making processes despite the highly variable and complex nature of dementia and the risk that nuanced cognitive, behavioural and psychosocial support needs will not be appropriately captured
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Risk that standardised support needs assessment tools may systematically under- assess the needs of people with young onset dementia unless validated for progressive cognitive conditions and administered by dementia-capable assessors
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Proposed approaches that may rely too heavily on participant self-report despite that some people with dementia will have impaired insight and may not understand the level of support they require, meaning those with the greatest support needs may be least able to articulate them
Plan Reassessment and Plan Administration (Schedule 1, Part 2 – sections 47A, 48, 48A and 49; section 40A)
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Higher thresholds for plan reassessment requiring “significant and ongoing” change, which are not clearly defined and may create substantial barriers for people with young onset dementia whose support needs increase over time
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Extension of reassessment decision timeframes from 21 to 90 days, increasing the risk that people living with dementia will experience avoidable deterioration, crisis, hospitalisation or carer burnout before receiving a reassessment and additional supports
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Lack of recognition that progressive neurodegenerative conditions may deteriorate rapidly following significant events such as hospitalisation, delirium, falls, behavioural escalation or loss of informal supports, requiring urgent reassessment and timely adjustment of supports
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Risk that increasing administrative and reassessment requirements may place additional burden on people with cognitive impairment and carers who are already navigating a progressive and highly complex condition
Dementia & Alzheimer’s Australia Ltd. National Dementia Helpline
Submission 419
-. Dementia , Australia·
- New powers to suspend plans where participants are considered “uncontactable”, without clear minimum contact requirements or mandatory engagement with carers, nominees or support networks, creating significant risk for people with dementia who may have reduced insight, memory or communication capacity
Reasonable and Necessary Supports (section 34)
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Introduction of an evidence hierarchy which may disadvantage supports commonly relied upon in dementia care that are effective in practice but may lack strong evidence due to the variation and complexity of dementia and the emerging evidence base
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Increased reliance on informal supports, including a preference to sustain these rather than replace them with funded supports, creating risk of unsustainable caring arrangements and additional burden on carers already providing substantial support many while also balancing paid employment and parenting responsibilities
Permanence and Treatment Requirements (Schedule 1, Part 8 – new section 25A)
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Demonstrating “permanence” may require consideration of “available and appropriate” treatments, which is unnecessarily burdensome for dementia which is a progressive and terminal disease for which is there is currently no curative treatment.
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Implicit expectation that participants demonstrate treatment pathways have been explored, including medication trials and other interventions, despite dementia being progressive and terminal.
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Uncertainty regarding how emerging dementia therapies may be considered within permanence assessments, particularly where clinical benefit may vary significantly between individuals or remain modest, temporary or therapies are not widely available or subsidised through the PBS.
Access, Early Intervention and Foundational Supports (Schedule 1, Part 9)
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Risk that the proposed reforms may reduce access to timely early intervention and disability supports for people with young onset dementia, despite evidence that early support, rehabilitation, allied health and cognitive interventions can assist people to maintain independence, functioning, employment and quality of life for longer.
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Lack of clarity regarding how participants with young onset dementia may be impacted where support needs are considered more appropriately met through alternative systems or future foundational supports that remain undefined or inconsistently available across jurisdictions.
Governance, Rule-Making and System-Level Powers (Schedule 3)
- Expanded Ministerial and rule-making powers to set funding frameworks and parameters at a system level may reduce transparency and limit consideration of the needs of people living with young onset dementia
Dementia & Alzheimer’s Australia Ltd. National Dementia Helpline
Submission 419
-. Dementia , Australia·
- Significant reliance on future Rules to define critical elements of the system, including assessment methods, thresholds, planning frameworks and funding approaches, limiting meaningful scrutiny and stakeholder consultation regarding how reforms will operate in practice for people living with dementia
Recommendations
Dementia Australia recommends that the Committee:
Functional Capacity and Support Needs Assessment
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Require that assessments for people with dementia consider fluctuating cognition, impaired insight, executive dysfunction and behavioural symptoms, and not rely solely on single-point or standardised assessments conducted in artificial settings.
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Require that clinical specialist evidence and evidence from carers and support persons be accepted as evidence of functional capacity where a short assessment is insufficient to capture a person’s day-to-day functioning and support needs.
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Ensure that standardised assessment tools used for support needs and functional capacity assessments are validated for progressive cognitive conditions and administered by assessors with appropriate dementia capability and training.
Plan Reassessment and Plan Administration
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Provide expedited reassessment pathways for people with dementia following significant events including hospitalisation, delirium, falls, behavioural changes, carer burnout or cognitive decline.
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Ensure that the 90-day reassessment decision timeframe does not apply to progressive neurodegenerative conditions where delays may result in avoidable crisis, hospitalisation or premature entry into residential aged care.
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Require that plans are not suspended or revoked on the basis that a participant is “uncontactable” without mandatory attempts to engage carers, nominees, support coordinators or existing support networks.
Reasonable and Necessary Supports
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Ensure that planning decisions appropriately consider the sustainability of informal caring arrangements and do not assume indefinite capacity of carers to provide supervision and support.
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Ensure that evidence requirements for supports do not disadvantage dementia- specific supports or interventions that are effective in practice but may have a more limited formal evidence base due to the complexity and heterogeneity of dementia.
Dementia & Alzheimer’s Australia Ltd. National Dementia Helpline
Submission 419
~~ Dementia
Australia·’ft~
Permanence and Treatment Requirements
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Explicitly recognise in legislation or Rules that dementia is a permanent, progressive and incurable neurodegenerative condition, and that symptom management, maintenance therapies or temporary functional improvement do not negate permanence.
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Ensure that participants are not required to pursue inaccessible, high-cost, invasive, experimental or emerging treatments in order to satisfy permanence requirements.
Access, Early Intervention and Foundational Supports
- Ensure that people with young onset dementia retain timely access to disability supports and are not excluded on the basis that needs may theoretically be met through alternative systems or future foundational supports that remain undefined or inconsistently available.
Governance, Rule-Making and Automated Decision-Making
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Ensure that automated or standardised decision-making processes are not used as the sole basis for access, planning or reassessment decisions involving young onset dementia
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Ensure that critical elements of the assessment and planning framework, including thresholds, methodologies and funding approaches, are subject to robust consultation with people with lived experience with reasonable timeframes and that appropriate parliamentary scrutiny is undertaken before implementation. Dementia Australia is troubled by both the consultation process and the substance of the proposed reforms, and particularly the absence of explanatory detail which will be captured in the legislative rules subsequent to the Bill’s passing. The current process does not provide a reasonable basis for informed stakeholder input on reforms of this scale. We urge the committee to recommend that the debate of the Bill is deferred to enable genuine consultation with people with living experience who will be directly impacted by these changes.