Submission 2490

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: redacted

Parent and carer of a child with disability

Date: June 1, 2026

Publication preference: I consent to publication of this submission. Please do not publish my private contact details.

Submission 2490

Executive summary

I support efforts to improve the long-term sustainability, consistency and integrity of the NDIS, including measures that reduce fraud, improve quality and ensure the Scheme remains available for future generations. These efforts, however, should not reduce participation, developmental progress, independence or family sustainability for legitimate participants.

Several provisions of the Bill may limit access to effective early intervention, increase reliance on unpaid family supports and create barriers for children whose developmental needs change over time.

My central concern is that sustainability should not be measured solely through short-term reductions in annual plan costs. It should also consider the long-term value of timely support, effective early intervention, carer workforce participation and reduced future support needs.

My family has seen the benefits of early intervention for our children - and for the sustainability of the NDIS itself. My eldest daughter accessed early intervention supports and later exited the NDIS when those supports were no longer required. My younger daughter, who has Pitt-Hopkins syndrome, is now developing communication, mobility and participation skills through intensive intervention that may reduce future support needs over her lifetime.

• Strengthen protections around assumptions of informal support capacity, including carer health, workforce participation, siblings and family sustainability.
• Preserve access to intensive early intervention therapy where it is evidence-informed, goal-directed and producing functional outcomes.
• Allow participants and families to opt into regular review pathways where developmental needs have changed, including where needs have reduced.
• Preserve review rights where support intensity, funding or renewal calculations are reduced by operation of law or legislative instrument.
• Prevent broad support caps and support determinations from overriding individual evidence of need for children with complex developmental disability.
• Require family sustainability, demonstrated functional outcomes and likely future cost savings to be considered in funding decisions.
• Ensure rare syndromes are not disadvantaged by evidence hierarchy provisions.
• Prevent narrow interpretations of “arising directly from impairment” from excluding interconnected disability needs.

Submission 2490

About me

I am making this submission as the parent and carer of a young child with Pitt-Hopkins syndrome, a rare genetic neurodevelopmental condition associated with significant developmental disability. Pitt-Hopkins syndrome is characterised by significant developmental delay, moderate-to-severe intellectual disability, speech impairment and delayed motor development. GeneReviews notes that speech is significantly affected and that most individuals are nonverbal, while receptive language is often stronger than expressive language. [2] MedlinePlus notes that affected individuals are delayed in learning to walk and developing fine motor skills, and typically do not develop speech, although some may learn a few words. [3]

I am also a working carer employed in news video production, trying to maintain a connection to the workforce while coordinating therapies, equipment, appointments and day-to-day disability support needs. Formal supports do not replace family care. In many cases, they are what makes it possible for families to keep going, maintain employment and support children to build skills.

Summary of requested amendments

Bill issue	Concern	Requested amendment
Unscheduled plan reassessments / proposed s 48A; decision period extended to 90 days	Children may experience gradual developmental change that does not fit a narrow “significant and ongoing change” threshold. Needs can also reduce, and the Scheme benefits when plans can be adjusted down as well as up.	Create an opt-in annual review pathway for children and a streamlined voluntary review pathway where needs have changed in either direction. Consider this for adults on the scheme as well.
Plan renewals / proposed s 50A	Plan renewal by operation of law may remove unspent funds and is not reviewable. This can penalise families affected by provider shortages, illness, waiting lists, delayed equipment, NDIA delay or family crisis. Can prevent efficient adjustment to changed needs.	Make renewal calculations reviewable and allow rollover/adjustment where underspend is due to access barriers, waiting lists, provider shortages, illness, NDIA delay or family crisis.
Support determinations / proposed s 34A	Funding for entire classes of support may be reduced for sustainability reasons and not through individual planning. This will cause high stress to participants who will deal with constant uncertainty about their plans, and may have funding cut without warning and no time to organise alternative support.	Remove the provision or substantially narrow its scope so that support determinations cannot reduce funding for essential disability supports without individual safeguards and review rights. Allow exemptions; preserve merits review where an individual plan is affected.

Submission 2490

Maximum funding/intensity/ratio limits / Therapy caps could restrict therapy Add an exemption pathway for early

proposed s 33(2EA)-(2EB) even where it is evidence-informed intervention and complex

                              and producing functional gains.         developmental disability, and require

                                                                              consideration of demonstrated

                                                                                      individual progress.

Effective and beneficial considerations A rigid evidence hierarchy may Require both published evidence and

/ proposed s 34(1E) undervalue individual functional demonstrated individual outcomes to

                                     progress, rare conditions and newer    be considered, especially for rare

                                    therapy models where large trials are    syndromes and early childhood

                                            limited.                              developmental intervention.

Informal support assumptions / Greater assumptions about parental Require a family sustainability and proposed s 34(1G)-(1K) care will shift even more support carer capacity assessment before needs onto unpaid carers, affecting refusing or reducing supports on health, employment, siblings and informal support grounds. family sustainability.

1. Intensive early intervention therapy should be protected as an investment in future independence

Relevant provisions

• Schedule 1, Part 6 - reasonable and necessary supports.

• Proposed s 33(2EA)-(2EB) - allowing maximum funding amounts, maximum intensity and maximum

  worker-to-participant ratios for supports or classes of supports.

• Proposed s 34(1E) - evidence hierarchy for deciding whether a support is effective and beneficial.

• Proposed s 34A - support determinations reducing funding for classes of supports for financial

  sustainability.

Concern

I am particularly concerned that the Bill may unintentionally restrict access to intensive therapy for children receiving early intervention supports.

For children with complex developmental disability, therapy delivered in short weekly blocks is not enough. One hour a week of physiotherapy or speech therapy is 0.5 per cent of a child’s week. If an adult went to the gym for one hour a week, what improvements could they reasonably expect? Intensive therapy (multiple hours of therapy daily for 1-3 weeks) can provide repeated, targeted practice over a concentrated period, allowing children to consolidate skills in mobility, communication, positioning, regulation, self-care and daily participation. The Explanatory Memorandum states that a determination may specify a maximum intensity for support, such as frequency or duration. It gives therapy as an example of a support that could be capped.

Submission 2490

states that these provisions may apply even if the outcome is that a funding component amount does not meet the actual cost of supports in that group. [6]

That creates a real risk for children with complex developmental disability. A broad cap may appear administratively fair, but it is not developmentally appropriate. Children do not all need the same intensity of intervention at the same time. For many children, a time-limited intensive block may produce functional gains that ordinary weekly therapy has not achieved. This is an investment in their future functional capacity, and it’s a level of professional therapy that is unachievable by the parent or carer at home.

Personal experience

In my youngest daughter’s case, intensive therapy has been life-changing. It has helped teach her how to sit, crawl, use her body with more purpose and communicate in non-traditional ways. Skills that once seemed uncertain are now becoming possible. Walking is now a realistic possibility for her. She has a lifelong disability and will continue to need support, but early intervention is building skills that increase her future self-care, communication, mobility and participation. Investing in her development now is likely to improve her quality of life and may reduce the intensity of supports she needs as an adult.

I have also seen the value of early intervention with my eldest daughter, who accessed the NDIS briefly under early intervention. Occupational therapy was highly effective for her. Her needs reduced to the point that we stopped using her plan and she exited the NDIS. Early intervention works, and when it works, it can reduce the need for ongoing support.

It is important to note that the level of therapy support delivered in an intensive block by experienced therapists is unachieveable at home by carers. The equipment used in my daughter’s therapy for example is extremely specialised and expensive. The exercises are impossible for me to replicate at home. They are designed, through high repetition, to create neural pathways in her brain that she cannot create on her own as she cannot move her body in the way that she needs to.

Evidence and context

The NDIS Review recommended that National Cabinet “jointly invest in early supports for children with emerging development concerns and disability.” [7] It also recommended that early intervention capacity building supports for children be based on best practice principles and evidence. [8]

The NDIS Review did not recommend that early intervention be reduced to a fixed, blunt cap. It recommended a needs-based approach for children. The Review recognised a continuum of support for children under 9 and their families. [9]

For rare syndromes, published evidence may be limited because the population is small. This makes it important that individual functional outcomes are not dismissed simply because large condition-specific trials do not exist. Evidence-informed practice should include published research, clinical expertise, family knowledge and demonstrated functional progress for the individual child.

Submission 2490

Requested amendment

• Ensure intensive therapy blocks remain fundable for children where it is evidence-informed, goal-directed, and linked to functional outcomes.

• Add an exemption pathway to any therapy intensity cap for children with complex developmental disability, rare conditions or substantial functional delay.

• Require demonstrated individual progress to be considered alongside published research when deciding whether a support is effective and beneficial.

• Prohibit support determinations from reducing early intervention therapy below the level reasonably required for a child’s development, safety and participation.

• Require funding decisions for early intervention to consider likely long-term outcomes and potential future support reduction, not only short-term annual plan cost.

Preserve review rights where therapy intensity is reduced or capped.

Regular review pathways should remain available for children whose

needs change

Relevant provisions

• Schedule 1, Part 2 - limiting unscheduled plan reassessments, including proposed s 48A.

• Item 19 - extending the period for the CEO to make a decision about a participant-requested reassessment from 21 days to 90 days.

• Item 21 - requiring significant and ongoing change in support needs before a participant-requested reassessment can occur.

• Schedule 1, Part 5 - plan renewals under proposed s 50A.

Concern

I am concerned about the interaction between reduced routine plan reassessments, plan renewals and reduced scope for change of circumstances pathways.

For some participants, longer-term plans and reduced administrative burden may be beneficial. However, children with disability often experience developmental change on a slower timeline than typically developing children. Communication, mobility, therapy needs, equipment requirements, continence needs and education arrangements can evolve gradually rather than through one dramatic event.

The proposed change of circumstances process will not adequately capture these gradual developmental changes. Families may find themselves in circumstances where support needs have evolved, but do not meet a narrow threshold for a major or unexpected change requiring reassessment.

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This creates risks in both directions. Children whose needs increase may struggle to access timely adjustments. Equally, children who make significant progress may continue on plans that no longer accurately reflect their needs because there is no practical pathway for voluntary review. This may create inefficiencies by maintaining support levels that are no longer appropriate.

A well-designed review pathway can therefore support both participants and Scheme sustainability. It allows plans to be adjusted when needs increase, but also when effective early intervention has reduced the intensity of support required.

Evidence and context

The Explanatory Memorandum states that plan renewals are intended to prevent unspent funds rolling over, while maintaining reasonable and necessary supports. It also states that renewed plans are created by operation of law and are not reviewable decisions. [4] The impact analysis acknowledges that limiting unscheduled reassessments may mean “adjustments to goals, supports and funding would not be made due to not meeting the new threshold” and that safeguards such as plan variations will need careful design to avoid risk. [5]

Requested amendment

• Create an opt-in annual review pathway for children and young people with developmental disability.
• Allow families to opt for plan continuation/renewal where support needs are stable.
• Broaden change of circumstances provisions so meaningful developmental change in children is recognised, including gradual changes in communication, mobility, self-care, continence, regulation, equipment needs and education arrangements.

3. Informal support assumptions must include family sustainability and carer workforce participation

Relevant provisions

• Proposed s 34(1G)-(1J) - requiring the CEO to take into account the presumption that parents are responsible for substantial care and support for children.
• Proposed s 34(1K) - requiring consideration of material risk and the sustainability of informal supports when deciding what is reasonable to expect families, carers and informal networks to provide.
• Proposed s 17B - principles relating to Scheme sustainability, including efficient use of funding and support needs arising directly from eligible impairments.

Submission 2490

Concern

Families of children with complex disabilities already provide substantial unpaid care. I am concerned that stronger assumptions about parental care may result in formal supports being refused or reduced without a realistic assessment of family sustainability.

Reducing formal supports based on assumptions about family capacity does not remove support needs. It transfers those needs to unpaid carers. This can affect carer health, workforce participation, financial security, siblings and family functioning.

This is not only a fairness issue. It is also a sustainability issue. If formal supports are reduced to the point that carers withdraw from work, experience burnout or become unable to provide safe care, the long-term cost to families, the NDIS and other systems may increase.

Personal experience

As a working carer, NDIS supports are part of the practical scaffolding that allows me to remain connected to employment. I have already significantly reduced work because of caring responsibilities. Like many carers, I am trying to preserve my career while meeting intensive therapy, equipment, communication, mobility and daily living needs for my child.

My daughter’s current NDIS planning material already shows how quickly decisions can rely on informal support assumptions. Some requested supports were not funded on the basis that they were reasonable to expect informal supports, such as family and friends, to provide. This illustrates why stronger legislative assumptions about informal supports should include safeguards for carer capacity and family sustainability.

[10]

Evidence and context

The Australian Institute of Health and Welfare reports that carers are less likely to report good or excellent health than other Australians, and more likely to report high loneliness. It also reports that employed carers were more likely to report healthy wellbeing than unemployed carers. [11] The NDIA’s own employment outcomes page states that increased participation in the workforce for people with disability and their families and carers produces benefits for individuals and the wider economy. [12]

These sources support a practical point: preserving carer workforce participation is not separate from NDIS sustainability. It is part of it.

Requested amendment

• Require a family sustainability assessment before refusing or reducing supports on the basis of informal support expectations.
• Require consideration of carer health, workforce participation, single-parent or limited-support circumstances, sleep deprivation, manual handling risk, sibling impacts and risk of family breakdown.

Submission 2490

• Clarify that parental love and responsibility do not mean parents can safely or sustainably provide unlimited disability support.

• Require reasons to be given where a support is refused on informal support grounds, including the evidence relied on to conclude the family can sustainably provide that support.

4. Broad funding reductions should not override individual assessment or review rights

Relevant provisions

• Proposed s 34A - support determinations allowing the Minister to reduce funding for specified groups of supports in old framework plans for financial sustainability.

• Schedule 1, Part 4 - support determinations are legislative instruments and the Explanatory Memorandum states that changes are not subject to merits review.

• Proposed s 50A - plan renewals by operation of law, also described as not involving a reviewable decision.

Concern I understand the need to manage Scheme sustainability. However, broad funding reductions applied by support category or class of support ignore individual need and can be a safety risk for participants who rely on that support. This is particularly risky for children with complex disabilities, as supports in therapy, daily living, community participation, communication and equipment are interconnected. The Explanatory Memorandum states that support determinations can reduce funding for a specified group of supports and that these changes are not subject to merits review. [13] It also explains that a support determination can reduce available funding even though it does not change the text of a participant’s plan.[14] This means a plan could identify a support need, but the funding available to meet that need may be reduced by a legislative instrument rather than an individual decision. Participants should have a pathway to challenge the individual impact of such reductions where safety, development, participation or family sustainability are affected. Requested amendment

• Require individual impact safeguards before any support determination affects a plan.

• Exclude early childhood intervention, disability-related health supports, assistive technology, communication supports and essential daily living supports from broad percentage reductions

• Create a hardship, safety and developmental impact exemption pathway.

Submission 2490

• Preserve merits review where a participant is individually affected by a reduction to funding or support intensity.

• Require public reasons and evidence for any determination, including evidence of likely long-term impacts and not only immediate savings.

5. The “effective and beneficial” test must work for rare syndromes and individual developmental progress

Relevant provisions

• Proposed s 34(1E) - setting the order of importance for evidence when deciding whether a support is effective and beneficial.

• Schedule 1, Part 6 - strengthening reasonable and necessary considerations.

Concern

I support evidence-informed decision-making. However, a rigid evidence hierarchy can disadvantage children with rare syndromes, because large published trials may not exist for each condition, support model or developmental stage. If they do exist, these have likely been conducted overseas and won’t be specific to Australia.

For rare disabilities, the strongest evidence for a particular child may include a combination of published evidence from broader neurodevelopmental populations, clinical reasoning, functional assessments, therapist reports, family evidence and the child’s demonstrated progress.

If individual progress is given too little weight, the system may stop funding interventions precisely when they are working.

Requested amendment

• Require decision-makers to consider demonstrated individual functional outcomes as a relevant and significant factor, not merely a lower-order consideration.

• For rare conditions, allow evidence from related neurodevelopmental populations and best-practice clinical consensus to be considered.

• Require decisions to distinguish between unsupported therapies and evidence-informed therapy models that have documented functional outcomes for the individual child.

• Require refusal decisions to explain how the evidence was weighed, including why demonstrated functional gains were insufficient.

Submission 2490

6. The “directly arising from impairment” wording should not exclude interconnected disability needs

Relevant provisions

• Schedule 1, Part 3 - strengthening the link between eligible impairments and support needs.
• Replacement paragraph 34(1)(aa) - requiring supports to address needs arising directly from an impairment for which the participant meets the disability or early intervention requirements.
• Proposed s 17B - sustainability principles referring to disability support needs arising directly from eligible impairments.

Concern

The proposed wording is too narrow for children with complex developmental disability. In real life, support needs do not fit into isolated diagnostic boxes. Mobility affects participation. Communication affects behaviour and safety. Continence affects inclusion. Equipment affects therapy access. Carer capacity affects whether skills can be practised safely at home and in the community.

The Explanatory Memorandum gives some examples where comorbidities may be considered if needed to make a disability-related support safe and usable. [15] That is helpful, but the primary legislative language should avoid an overly narrow interpretation that excludes necessary supports merely because the pathway between impairment and need is complex.

Requested amendment

• Replace “arising directly from” with wording such as “substantially connected to, or reasonably necessary because of, an impairment for which the participant meets access”.
• Alternatively, add a legislative note confirming that support needs may be affected by co-occurring conditions, environmental circumstances, communication needs, family capacity and safety considerations where these are necessary to meet needs related to an eligible impairment.
• Require child-specific guidance recognising that developmental needs are interconnected.

Conclusion

I support efforts to strengthen and sustain the NDIS. Fraud control, consistency and long-term sustainability matter. However, sustainability should not come at the expense of flexibility, early intervention and individualised decision-making for children with complex developmental disability. It should not reduce participation, developmental progress, independence or family sustainability.

Early intervention is not simply a cost. It can be an investment in future independence, communication, self-care, participation and reduced long-term support needs. My family has already seen one child benefit from early intervention to the point of leaving the NDIS. We are now seeing intensive early intervention

Submission 2490

give my younger daughter skills that improve her lifelong trajectory, and potentially the future cost of her

NDIS plan.

The Bill should be amended to ensure that children are not disadvantaged by broad caps, narrow review pathways, rigid evidence rules or assumptions about parental capacity. A sustainable NDS should preserve the supports that help children build skills early, keep carers connected to work and reduce future support intensity.

I would be willing to provide further information or appear before the Committee if invited.

References and sources checked

[1] Parliament of Australia, Senate Community Affairs Legislation Committee, Inquiry page for National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. The page states that submissions close on 29 May 2026, that the reporting date is 16 June 2026, and that submissions must directly address the provisions of the Bill. URL: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/NDISFutureGenBill

[2] Sweetser DA, El Achkar CM. Pitt-Hopkins Syndrome. GeneReviews, NCBI Bookshelf, updated 2025. Relevant point: Pitt-Hopkins syndrome is associated with significant developmental delay, moderate-to-severe intellectual disability and significant speech impairment; most individuals are nonverbal, with receptive language often stronger than expressive language. URL: https://www.ncbi.nlm.nih.gov/books/NBK100240/

[3] MedlinePlus Genetics, Pitt-Hopkins syndrome. Relevant point: affected individuals have delayed development of mental and motor skills, are delayed in learning to walk and developing fine motor skills, and typically do not develop speech, though some may learn a few words. URL: https://medlineplus.gov/genetics/condition/pitt-hopkins-syndrome/

[4] Explanatory Memorandum, National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, Schedule 1, Part 5, Plan renewal; proposed s 50A. Relevant point: plan renewals would prevent unspent funds rolling over from the old plan while maintaining reasonable and necessary supports; renewed plans are created by operation of law and are not reviewable decisions.

[5] Impact analysis equivalent: National Disability Insurance Scheme Reforms, May 2026, in the Explanatory Memorandum package, discussion of limiting unscheduled plan reassessments. Relevant point: the impact analysis acknowledges that some adjustments to goals, supports and funding may not be made due to not meeting the new threshold, and that careful safeguards such as plan variations will be needed.

[6] Explanatory Memorandum, Schedule 1, Part 6, Item 68, proposed s 33(2EA)-(2EB). Relevant point: a determination may specify maximum funding amounts, maximum intensity or maximum ratios for supports or classes of supports, including a therapy example; the EM states these provisions may apply even if a funding component amount does not meet the actual cost of supports in the group.

[7] NDIS Review, Working together to deliver the NDS: Final Report, Recommendation 1, Action 1.12. Quote: “National Cabinet should agree to jointly invest in early supports for children with emerging development concerns and disability.” URL: https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis

[8] NDIS Review, Working together to deliver the NDIS: Final Report, Recommendation 6, Action 6.5. Quote: “The National Disability Insurance Agency… should require early intervention capacity building supports for children be based on best practice principles and evidence.” URL: https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis

[9] NDIS Review, Working together to deliver the NDIS: Final Report, Recommendation 6. Relevant point: the Review recommends a continuum of mainstream, foundational and specialist supports for children under 9 and their families.

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[10] Personal example from Evelyn’s NDIS plan approval material, November 2025. Relevant point: some requested

supports were not funded on the basis that it was reasonable to expect informal supports, such as family and friends, to

provide them. This example is referred to without attaching medical reports or the full NDIS plan.

[11] Australian Institute of Health and Welfare, Informal carers, updated 30 October 2025. Relevant points: carers were less

 likely to report good/excellent health than other Australians; carers were more likely to report high loneliness;

employed carers were more likely to report healthy wellbeing than unemployed carers; and 57% of 2024 National Carer Survey

participants reported being employed or looking for paid work while providing care. URL:

https://www.aihw.gov.au/reports/australias-welfare/informal-carers

[12] NDIS Data and Research, Employment outcomes - participants, their families and carers. Quote: “Increased

participation in the workforce for people with disability and their families and carers produces benefits for the individuals

participating, as well as for the wider Australian economy.” URL:

https://dataresearch.ndis.gov.au/reports-and-analyses/outcomes-and-goals/employment-outcomes-participants-their-fam

ilies-and-carers

[13] Explanatory Memorandum, Schedule 1, Part 4, Item 34, proposed s 34A. Relevant point: support determinations would

allow the Minister to reduce funding for specified groups of supports for financial sustainability and are described as not

subject to merits review.

[14] Explanatory Memorandum, Schedule 1, Part 4, proposed s 34A. Relevant point: a support determination would not

change the text of a plan, but would reduce the funding available for a group of supports.

[15] Explanatory Memorandum, Schedule 1, Part 3, examples including Samira and Amrit. Relevant point: the EM

recognises that some comorbid or related factors may need to be considered where they are necessary to meet a need

arising from an eligible impairment safely and effectively.