Fluctuating neurological condition impacts NDIS access (Provider advocacy)

Submission 450

Submission 450

1. About Epilepsy Australia Epilepsy Australia is the national partnership and representative voice of epilepsy organisations working to improve the lives of people with epilepsy and other seizure disorders across Australia. Epilepsy Australia and its member organisations work across health, disability, education, aged care, employment and community settings, translating clinical information into practical supports for daily life. Epilepsy Australia sees first-hand that people with epilepsy often sit between systems. They may require medical care, seizure safety planning, disability supports, school or workplace adjustments, mental health supports, carer supports, transport solutions, aged-care capability, support worker training and community education. When these systems do not connect, families and carers often become the coordinators by default. This submission draws on Epilepsy Australia’s broader evidence to the Senate Inquiry into Epilepsy in Australia. That submission described epilepsy as a whole-of-life neurological condition and a whole-of-system reform issue and applies that lens to the provisions of the Bill.

2. The Bill and why it matters for epilepsy The Bill proposes substantial changes to access, planning, reassessment, support funding, permanence, provider regulation, compliance powers, pricing, automation and new framework planning. These are not peripheral issues for people with epilepsy. They determine whether a person is recognised as having disability-related support needs, how those needs are assessed, what supports are funded, when plans can be reviewed, and how compliance systems respond for people managing complex conditions.

Epilepsy creates a particular challenge for disability assessment because many people appear functional between seizures. A person may be able to walk, communicate, prepare food, attend school, work or participate in the community on some days, yet still require supervision, emergency planning, transport support, support worker training, behaviour and safety planning, or capacity-building supports because of seizure risk and recovery needs.

Episodic disability should not be read as episodic need. A person may not be having a seizure during an assessment, but their need for support may be shaped every day by the possibility of seizure, injury, drowning, loss of consciousness, medication side effects, disrupted sleep, fatigue, cognitive impact, anxiety, stigma, driving restriction, employment exclusion and carer burden.

Epilepsy Australia therefore asks the Committee to consider and recommend that the Bill’s access, planning and compliance mechanisms do not rely on a steady-state model of disability that works poorly for episodic and fluctuating neurological conditions, and recognise the permanent and ongoing impact this has on people’s functionality for the entirety of their lives.

3. Schedule 1 - access and planning measures Schedule 1 is the most significant part of the Bill for people with epilepsy. It goes to the threshold question of who enters and remains in the NDIS, how functional capacity is understood, when plans can be reassessed, how supports are linked to impairment, what happens at plan renewal, when plans can be suspended and how permanence is assessed.

3.1 Functional capacity must include risk, variability and support need across time

Part 1 of Schedule 1 establishes a legal framework for determining access based on substantially reduced functional capacity and provides for future rules about how functional capacity is determined. This is a critical design point for epilepsy.

Epilepsy Australia | Senate Community Affairs Legislation Committee inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026            Page 2

Submission 450

Epilepsy-related functional impact is often not captured by asking what a person can do in a controlled moment. The relevant question is whether the person can do the activity safely, reliably, repeatedly and without unreasonable risk across ordinary life. For many people with epilepsy, the impact appears in the need for supervision, emergency response planning, support worker competence, transport assistance, school or workplace adjustments, medication monitoring, fatigue management and post-seizure recovery support. These are supports required every day.

Rules made under the Bill should make clear that assessment must consider longitudinal evidence when determining functional capacity. This should include, where relevant, seizure diaries, medical evidence, hospital and ambulance history, support worker reports, school and workplace evidence, carer evidence, medication effects, injury history, nocturnal seizures, seizure clusters, post-ictal recovery1 and evidence of fluctuating capacity over time.

Epilepsy Australia believes that the definitions developed for functionals capacity needs to take into account lifetime impacts and disability-related risk to accommodate people with epilepsy who may be found to have capacity because they can perform an activity at the time of assessment, while the disability-related risk and support need that determines whether they can safely participate in ordinary life is missed.

3.2 Reassessments must remain available when epilepsy-related support needs change

Part 2 of Schedule 1 tightens the criteria for unscheduled plan reassessments. Epilepsy Australia understands the need to manage repeated reassessments that are not supported by material changes. However, epilepsy-related support needs can change quickly and significantly.

Relevant changes may include increased seizure frequency, new seizure types, medication changes, surgery assessment, hospitalisation, injury, loss of driving, transition from paediatric to adult care, significant changes to daily activities and activity settings, loss of informal supports, or emergence of cognitive, behavioural or psychosocial impacts.

The Bill should be supported by guidance making clear that significant and ongoing changes in seizure risk, seizure impact or informal support arrangements are grounds for reassessment.

3.3 The direct link between impairment and support need must not fragment complex epilepsy

Parts 3 and 6 of Schedule 1, and Schedule 4, emphasise that support needs must arise directly from impairments for which the participant meets access or new framework planning requirements. This creates a risk for people with complex epilepsy, including people with developmental and epileptic encephalopathies (DEE)2, acquired brain injury, intellectual disability, mental health impacts, developmental delay, autism, sleep disturbance, injury risk and medication effects.

In real life, these impacts are not easily separated. A child with a rare genetic epilepsy may require support because seizures, cognitive impairment, behaviour, communication challenges, sleep disruption and medication effects interact. An adult with drug-resistant epilepsy may require transport, daily living or community participation support because seizure risk, fatigue, medication effects, anxiety and loss of driving combine to limit participation.

Epilepsy Australia recommends that the Bill rules expressly recognise the combined functional impact of related impairments and co-occurring conditions. A narrow causal attribution test

1 The postictal state is a period that begins when a seizure subsides and ends when a person returns to baseline. 2 Developmental and Epileptic Encephalopathy (DEE) refers to a group of severe, rare epilepsies that emerge in infancy or childhood.

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would risk sending people back and forth between health, disability, education and psychosocial systems, with each system finding that the support belongs somewhere else.

3.4 Support determinations and budget resets should not remove essential participation and capacity-building supports

Part 4 of Schedule 1 allows the Minister to make a legislative instrument to determine reduced funding for groups of supports. With any future determination of this kind, it will be vital enable individual accommodations in peoples plan – as with all people in the community, the type of core support that a person with disability will need is different.

For some participants, community participation support is not discretionary. It may be what enables safe participation when seizure risk prevents independent travel, community access, exercise, volunteering, study or social connection. Capacity-building supports may also be necessary to develop routines, safety strategies, self-management, support worker capability, communication with services and transition planning.

Epilepsy Australia recommends that any support determinations be subject to explicit disability equity safeguards. Reductions should not be applied in a way that treats participation supports as optional where those supports mitigate seizure risk, reduce isolation, maintain independence or reduce carer burden.

3.5 Plan renewal and unspent funds should recognise episodic disability and thin markets

Part 5 of Schedule 1 introduces legislated plan end dates and provides that unspent funds from the previous plan will not be carried over to the renewed plan. Epilepsy Australia recognises the importance of clear planning cycles. However, unspent funding is not always evidence of lack of need.

For people with epilepsy, supports may be unused because seizures, hospitalisation, medication changes, surgery assessment, provider shortages, regional access barriers, school transition or carer crisis make service use impossible during part of a plan period. Participants in thin markets may also be unable to use funded supports because appropriately trained providers are not available.

The Committee should recommend that implementation rules distinguish between funds that are genuinely unnecessary and funds that could not be used because of disability-related barriers, service shortages or episodic health instability.

3.6 Plan suspension and participant revocation require strong safeguards

Part 7 of Schedule 1 allows the NDIA to suspend a plan where reasonable attempts to contact a person have been made and an adequate response has not been provided. It also allows participant status to be revoked if a plan has been suspended for at least 90 days and the NDIA has not been able to contact the person.

This is a high-risk provision for people with complex epilepsy and their families. Lack of response may be caused by hospitalisation, cognitive impairment, acquired brain injury, communication disability, carer or family crisis, unstable housing, mental health crisis, digital exclusion, language barriers, or a person not understanding the significance of correspondence.

Before any plan suspension or revocation, the NDIA should be required to undertake active outreach, contact nominees and guardians, use accessible communication, and includes appropriate checks including whether the participant is known to be in hospital or crisis. Community organisations, including epilepsy organisations, can also assist where they are already involved and the participant consents.

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3.7 Permanence must not be confused with whether epilepsy has possible treatments

Part 8 of Schedule 1 tightens the meaning of permanence and provides that access will only be granted where appropriate treatment to remedy or alleviate an impairment has been undertaken, no other treatment is likely to materially improve the impact of the impairment, and the impairment is likely to be lifelong.

Epilepsy Australia is concerned that this provision could be misapplied if epilepsy is treated as a condition that is not permanent because treatment options exist. Epilepsy is highly variable. Some people become seizure-free. Many do not. Some experience drug-resistant epilepsy. Some live with DEE and lifelong disability. Some experience severe medication side effects, cognitive impacts or psychosocial disability even where seizure frequency changes.

Assessment of permanence should be based on treating specialist evidence and the person’s real-world functional impact. It should not require a person to trial every possible medication, undergo clinically inappropriate or high-risk interventions, access treatments unavailable in their region, or pursue emerging or experimental therapies before disability support is recognised.

Any instrument or guidance about appropriate treatment includes safeguards for clinical appropriateness, availability, risk, personal circumstances, cultural safety, affordability and the person’s informed choice.

The proposed permanence provisions and the rules that accompany them must include provisions that continue to provide support for conditions that have a current or ongoing impact on functional capacity while treatments are being explored. This takes into account that epilepsy may require an exploration of medication, surgery, dietary therapy, device therapy or emerging therapy. This aligns with the provisions under the Bill and the new rules that a condition is considered permanent if treatment is unlikely to materially improve, reverse or alleviate the impact of the impairment.

3.8 Eligibility based on other service systems must not create a service gap

Part 9 of Schedule 1 clarifies eligibility based on access to other service systems. Epilepsy Australia accepts that the NDIS should not replace mainstream health, education, aged care or compensation systems. However, people with epilepsy already experience gaps between these systems.

A person may receive medical treatment through health services but still require disability support for daily living, community participation, supervision, behaviour support, transport, support worker training or carer sustainability. A school may have educational obligations, but those obligations do not necessarily fund family navigation, community participation or disability-related supports outside school. Aged care, health and disability systems also regularly contest responsibility for seizure management, medication continuity and support worker capability.

Any exclusion based on another service system should only apply where the other system is actually available, appropriate, funded, accessible and accountable for the relevant support. People should not be found ineligible for the NDIS because another system theoretically exists.

Any access-tightening measures must not commence without clear, funded and nationally consistent foundational support pathways for people with epilepsy who are not eligible for the NDIS but still require seizure safety education, navigation, support planning and community participation support.

Epilepsy Australia notes that there is recognition that for the Minister to prescribe other service systems as alternative support services, the NDIS rules must be agreed with all states and territories. This falling between the cracks of federal, state and territory service systems has been an issue

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associated with the NDIS for many years, and no changes in the rules can occur before those rules are agreed and funding is in place.

4. Schedule 2 - fraud measures, provider registration and compliance Epilepsy Australia supports action to prevent fraud, exploitation and misuse of public funds. People with disability, families and ethical providers all benefit from an NDIS that is trusted and well regulated.

Epilepsy Australia recommends that the National Disability Insurance Agency (NDIA) and MDIs Quality and Safeguards Commission (the Commission) monitor the impact of the proposed changes to access, provider registration, pricing settings and claim rules to ensure they do not create unmet need or market withdrawal for cohorts such as people with episodic neurological conditions.

5. Schedule 3 - governance, pricing and automation Schedule 3 changes governance arrangements, including decision-making on pricing and automation of administrative action. Both matters are important for people with epilepsy.

Pricing decisions must recognise the true cost of safe, specialist and low-volume supports. Epilepsy supports often involve training, supervision, emergency preparedness, travel, regional delivery, risk management and liaison with schools, workplaces, disability services, aged-care providers and families. If pricing is set too low, services may become unavailable even where a participant has funding in their plan.

Epilepsy Australia recommends that neurological-specific peak bodies, specialist community organisations and people with lived experience be included in pricing consultations, including Australian Government and NDIA representative advisory groups and forums. Pricing should be tested against thin markets, regional delivery and the cost of maintaining specialist capability.

Automation can improve administrative efficiency where it is limited to simple processing functions and paired with safeguards. It is not appropriate for complex judgement-based decisions about eligibility, functional capacity, plan suspension, participant revocation, support reductions or whether a support need arises from a particular impairment. Episodic and fluctuating conditions are especially vulnerable to automated systems because their impact is difficult to infer from simple data fields.

Any automated administrative action should be transparent, explainable, auditable and subject to human review. Participants should be told where automation has been used and should have accessible pathways to correct errors.

6. Schedule 4 - new framework planning Schedule 4 supports the rollout of new framework planning. It allows rules and methods to identify support needs, levels of need, funding amounts and information that assessors must or must not consider. This is a decisive implementation issue for epilepsy.

A support needs assessment that relies on a standardised tool without epilepsy-specific guidance may understate need. For example, a participant may be able to undertake an activity physically, but not safely or reliably because of unpredictable loss of consciousness, injury risk, post-seizure confusion, medication side effects, fatigue, cognitive impairment or need for trained support. Conversely, a crisis presentation may not capture the person’s baseline functioning or the supports that prevent crisis.

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Submission 450

Rules for new framework planning should require assessors to consider clinical evidence, longitudinal functional evidence, carer evidence, support worker and educator evidence, seizure management plans, emergency medication plans, transition points, environmental risk and participation goals. There should be an explicit requirement in the assessment process for assessor to engage with relevant clinical experts in epilepsy and for this to be documented.

The Bill should also ensure that maximum funding amounts or standardised levels of need do not become rigid caps that fail to meet real support costs for complex, high-risk or regional participants.

7. Transitional rules and implementation Schedule 5 allows transitional rules to be made. Transitional implementation will matter greatly for existing participants with epilepsy. Participants should not experience abrupt support loss because assessment tools, support categories, pricing arrangements or administrative processes change before guidance and safeguards are in place.

Epilepsy Australia recommends staged implementation, transparent public guidance, accessible participant communication, workforce training, independent monitoring and cohort-level reporting. Particular attention should be given to children with DEE, people with drug-resistant epilepsy, people with cognitive impairment, First Nations participants, culturally and linguistically diverse participants, people in regional and remote communities, and participants reliant on family carers.

If access is tightened without funded foundational supports, people with epilepsy may be pushed out of the NDIS without receiving practical support anywhere else. This would not improve sustainability; it would shift cost and risk to families, hospitals, emergency services, schools, workplaces and community organisations.

8. Epilepsy Australia recommendations Epilepsy Australia asks the Committee to consider the following recommendations for amendments, safeguards and implementation requirements:

9. That any functional capacity definition and support needs assessment rules require consideration of episodic and fluctuating impairment as it relates to identified central activities. This would include factors such as seizure risk, post-seizure recovery, medication effects, cognitive and psychosocial impacts, safety planning, supervision needs, and emergency risk.

10. The Bill should be supported by guidance making clear that significant and ongoing changes in seizure risk, seizure impact or informal support arrangements are grounds for reassessment.

11. The Bill rules expressly recognise the combined functional impact of related impairments and co-occurring conditions.

12. Epilepsy Australia recommends that any support determinations be subject to explicit disability equity safeguards. Reductions should not be applied in a way that treats participation supports as optional where those supports mitigate seizure risk, reduce isolation, maintain independence or reduce carer burden.

13. The Committee should recommend that implementation rules distinguish between funds that are genuinely unnecessary and funds that could not be used because of disability related barriers, service shortages or episodic health instability.

    Epilepsy Australia | Senate Community Affairs Legislation Committee inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 Page 7

Submission 450

6. Require safeguards before plan suspension, participant revocation, debt recovery or adverse compliance action, including accessible notice, nominee and carer contact, human review and reasonable exceptions for hospitalisation, cognitive impairment, carer crisis or communication barriers.

7. The proposed permanence provisions and the rules that accompany them must include provisions that continue to provide support for conditions that have a current or ongoing impact on functional capacity while treatments are being explored.

8. Any access-tightening measures must not commence without clear, funded and nationally consistent foundational support pathways for people with epilepsy who are not eligible for the NDIS but still require support.

9. Any exclusion based on another service system should only apply where the other system is actually available, appropriate, funded, accessible and accountable for the relevant support. Epilepsy Australia notes that there is recognition that for the Minister to prescribe other service systems as alternative support services, the NDIS rules must be agreed with all states and territories.

10. The national Disability Insurance Agency (NDIA) and NDIS Quality and Safeguards Commission (the Commission) monitor the impact of the proposed changes to access, provider registration, pricing settings and claim rules to ensure they do not create unmet need or market withdrawal for cohorts such as people with episodic neurological conditions.

11. Epilepsy Australia recommends that neurological-specific peak bodies, specialist community organisations and people with lived experience be included in pricing consultations, including Australian Government and NDIA representative advisory groups and forums.

12. Rules for new framework planning should require assessors to consider clinical, longitudinal functional and related evidence. There should be an explicit requirement in the assessment process for assessor to engage with relevant clinical experts in epilepsy and for this to be documented.

13. Epilepsy Australia recommends staged implementation, transparent public guidance, accessible participant communication, workforce training, independent monitoring and cohort-level reporting.

14. Conclusion Epilepsy Australia supports a sustainable and trustworthy NDIS. Sustainability, however, should be understood as more than fiscal restraint. A sustainable Scheme must recognise the real forms of disability people live with, including episodic, fluctuating and risk-based neurological disability.

For people with epilepsy, the difference between recognition and exclusion often depends on whether systems understand risk, variability and the supports required to live safely between seizures. The Bill is an opportunity to strengthen integrity and governance while also improving clarity for people whose disability does not fit a simple snapshot model.

Epilepsy Australia urges the Committee to ensure that the Bill secures the NDIS for future generations without narrowing the gateway for people who already struggle to be recognised by disability systems.

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References and source material

1. Senate Community Affairs Legislation Committee, National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 inquiry page, Parliament of Australia: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/NDI SFutureGenBill

2. Parliament of Australia, Bills Search Result, National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026: https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/Bills_Search_Results/Result?bI d=r7487

3. Australian Government Department of Health, Disability and Ageing, NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026: https://www.health.gov.au/our-work/ndis legislation-changes/amendments/ndis-amendment-securing-the-ndis-for-future-generations bill-2026

4. Australian Government Department of Health, Disability and Ageing, NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 - fact sheet, May 2026.

5. Epilepsy Australia, Submission 166 to the Senate Community Affairs References Committee Inquiry into Epilepsy in Australia, 15 May 2026.

6. World Health Organization, Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031.

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