Submission 2997 — Dr Barbora Jedličková — NDIS Future Generations Bill

Scheme Amendment (Sewring the NDIS for Future Generations) Bill 2026

BARBORA JEDLICKOVA

Committee Secretary

Senate Community Affairs Legislation Committee

Department of the Senate

PO Box 6100

Parliament House

CANBERRA ACT 2600

AUSTRALIA

29 May 2026, Brisbane

National Disability Insurance Scheme Amendment (Securing the ND/S for Future Generations) Bill

2026

Submitted by: A parent and primary carer of a child with quadriplegic cerebral palsy and speech impairment

Dear Senate Community Affairs Legislation Committee,

I am writing in my capacity as the mother of a seven-year-old boy with cerebral palsy (CP). I am also a senior legal scholar specialised in competition law (including market regulation) and Chair of the University of Queensland’s Network for Carers of Children with Special Needs and Serious Chronic Illnesses. (The network comprises of 41 members each of whom are carers of children with special needs and/or chronically sick.)

I welcome the opportunity to comment on this Bill. As the parent and primary carer of a child with disability (quadriplegic cerebral palsy and speech impairment), I understand intimately the need to ensure the NDIS remains financially sustainable. However, any legislative and policy changes must not come at the cost of children’s developmental outcomes, family wellbeing, or the original intent of the Scheme.

The Bill, as drafted, risks undermining the very goals the NDIS was established to achieve. By failing to account for the economics of early intervention and the realities of caring for children with disabilities it may actually increase long-term costs while reducing functional outcomes.

My Son’s Journey and Diagnosis

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I months old, my son was diagnosed at the Mater Hospital in Brisbane with quadriplegic moderate-to severe cerebral palsy. The prognosis we were given was devastating - most likely be immobile and severely limited throughout life.

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BAR BORA JEDLICKOVA

Together with his dad, we have worked with him every single day - several times a day. My son has received NDIS support since he was ten months old, and this assistance has been crucial, providing financial access to many essential therapies. Unfortunately, some of these supports have since been removed from the scheme under current guidelines rather than legislation.

Despite significant financial challenges, we have personally funded many of the therapies and treatments that have been fundamental to his progress - supports not covered by the NDIS and some of them not available in Australia, even though several are considered standard practice in other well developed countries.

Because of these vital interventions, my son has achieved outcomes that specialists once believed were impossible. Today, he walks independently, plays, learns, and lives with a joy that inspires everyone around him. Doctors have described his progress as “nothing short of a miracle” and “outstanding.” Watching him walk into his classroom on his own - free to play, learn, and explore - is profoundly moving, especially knowing how different his life might have been had we not fought for every step of his recovery - “functional gains”.

My son is deeply motivated, and we continue to support him with daily targeted exercises, weekly therapies, and regular overseas treatments so he can keep reaching every goal he sets for himself. NDIS support has been essential in making this possible.

The Incomplete Economic Rationale

The Government’s justification for the Bill is that the NDIS has “drifted from its original intent” and that participant numbers and costs have grown “beyond sustainable levels.” The Bill therefore focuses on:

• tightening eligibility,
• narrowing the definition of funded supports,
• strengthening governance, and
• reducing fraud. Unfortunately, the economic framing is incomplete, because the Bill fails to account for the long-term cost savings of early intervention, and care and intervention in childhood. Restricting supports for children now will increase lifetime costs, not reduce them. This principle, that timely intervention and intervention in childhood reduce long-term dependence, informed the NDIS’s original design in 2013. The Bill appears to have forgotten it. For example:

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The Bill introduces a requirement that a child’s disability will not be treated as permanent (or likely permanent) unless all appropriate treatment and intervention have been exshausted.

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BARBORA JEDLICKOVA

This requirement fundamentally misunderstands many childhood forms of disability, including CP, and neuroplasticity. Early intervention is time-critical precisely because children’s brains and bodies are still developing. Delaying NDIS access until “all treatments” have been attempted means missing critical developmental windows. By the time a child has cycled options to “prove” permanence, the optimal period for intervention has passed. The NDIS would then fund supports for a child who has already lost potential capacity, rather than preventing that loss.

This creates a paradox where early intervention is impossible. The Scheme’s foundational principle is that early support reduces lifetime costs. Yet this provision makes early support contingent on proving that early support has failed.

This requirement imposes a substantial new burden on families and the system, adding add extra time of bureaucratic delay during which children go without support.

Children’s disabilities often evolve. Early intervention is critical precisely because permanence cannot always be established early in life, and should not need to be. Yet the Bill contains no child-specific protections to ensure children with developmental conditions are not excluded simply because their long-term trajectory is uncertain, or because they have not yet exhausted every possible intervention.

This directly contradicts the objective to support children early so they can achieve maximum independence in adulthood. Without amendment, Schedule 1 risks excluding the very cohort for whom early support yields the greatest economic and social returns.

2)  Substantially Reduced  Functional  Capacity and  Functional  Assessments: An

Expensive Bureaucratic Burden

The Bill’s proposed functional assessment framework (Schedule 1 and Schedule 3) is presented as a cost-saving measure. In reality, it will:

• increase administrative costs (assessors, contractors, audits),
• duplicate existing clinical assessments already performed in hospitals and specialist clinics, • add significant time burden to carers already managing weekly therapy, medical

appointments, and administrative requirements, and

• delay access to supports, which paradoxically increases long-term costs. As carers, we are already operating at capacity. Requiring participation in additional bureaucratic assessments-duplicating information already held by qualified medical practitioners-represents an inefficient use of family resources and taxpayer funds.

Furthermore, this approach creates additional risks when assessing children. First, it is ineffective for babies, as it is not possible to demonstrate “substantially reduced functional capacity” at that age. Yet infants benefit enormously from early intervention and can achieve significant developmental gains when support is provided early.

Similarly, children who can technically perform certain tasks but only with limitations or reduced quality-such as those with mild cerebral palsy-are at risk of being excluded from the NDIS and therefore missing out on essential support. With appropriate therapies, many of these children can grow into more independent adults with fewer chronic issues, including long-term pain. Early therapeutic support not only improves their quality of life but also reduces lifetime care costs.

A Cost-Effective Alternative

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BARBORA JEDLICKOVA

Rather than building a parallel assessment bureaucracy, the NDIS should leverage existing expertise within Australia’s public hospital system. In conditions such as CP, paediatric specialists, neurologists,

rehabilitation physicians, and  allied  health teams already conduct comprehensive, longitudinal

reviews. These clinicians are qualified to assess complex neurological and physical conditions, and already produce reports as part of standard clinical care.

Relying on their qualified expertise would eliminate duplicative costs, reduce administrative burden on families, utilise existing clinical expertise, decrease risk of being excluded from the NDIS, and redirect savings to actual therapy and support services.

3. Restricting Supports Undermines Functional Outcomes The proposed amendments to sections 33-34 are significant. In particular, proposed section 34A further narrows an already limited support framework and, together with changes in Schedule 3, it grants the Minister effectively unrestricted and unchecked authority in limiting that support. This concentration of power raises serious concerns within the disability community and among already overwhelmed carers, who fear that essential safeguards and accountability mechanisms are being eroded.

Parental Responsibilities

Families caring for a child with disability already shoulder substantial additional responsibilities, yet these are often treated as ordinary parental responsibilities! This overlooks the significant difference between typical parenting tasks and the extensive, specialised care required because a child has a disability and because there is insufficient financial and practical support available.

These additional responsibilities create real and measurable burdens. Families face higher out-of pocket costs, including travel and accommodation expenses when attending therapies, reduced working hours or the loss of employment due to care demands, and the need to provide intensive day and-night support. Parents-carers are already under significant pressure -the reality O know firsthand.

The Bill would worsen this situation by proposing adding 1G, 1H and 1J after subsection 34(1) of the NOIS Act 2013 (Cth). This proposal risks removing even the limited assistance currently available, such as support-worker help. Reducing this support does not reduce the overall cost to society-when parents are forced out of the workforce due to caring responsibilities, the economic and social consequences are substantial. This approach is also inconsistent with the Carer Recognition Act 2010 (Cth) and similar state legislation, which acknowledge the vital role of carers and the need to support them.

4. Schedule 3: Parental Expertise Must Be Recognised Schedule 3 addresses governance and decision-making reforms. Yet the shift toward centralised, rule driven decision-making risks further diminishing the role of parental input. On one hand, the Bill expects parents to assume substantial additional responsibilities in caring for a child with disability; on the other hand, it fails to recognise parents as genuine partners in decisions about their children’s care and funding. This imbalance undermines the very support structures embodied in disability and carers legislations and relevant rights.

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Submission to the Senate Community Affairs I egislation Committee: National Disability Insurance

BARBO RA JEDLICKOVA

Parents observe their child’s function across all environments-home, school, community-over long periods. We are the most consistent contributors to our child’s progress and possess unique, longitudinal knowledge of capabilities, treatment responses, and functional gains.

For decisions to be accurate, efficient, and cost-effective, the NDIS must formally recognise parental expertise as a legitimate input into funding and planning decisions; and ensure families are genuine partners in decision-making, not administrative obstacles to be managed.

Without this, the system will make poorer decisions at higher cost.

Reducing Fraud

Finally, I fully support the Bill’s objective of reducing fraud. We have personally experienced unethical and fraudulent behaviour from ND IS-registered providers. By contrast, the unregistered therapists we have worked with have consistently treated my son (and our family) fairly and professionally.

While stronger registration and safeguarding requirements may make sense for non-therapeutic

providers, the  situation  is very different  for therapeutic supports.  In  this context, mandatory

registration does not add meaningful value, and imposing it would reduce choice, quality, and competition among providers. This would ultimately disadvantage participants who rely on timely, specialised, and relationship-based therapeutic care.

Recommendations

1. Insert child-specific safeguards into Schedule 1. Ensure that eligibility changes do not exclude children whose long-term disability trajectory is uncertain.

2. Amend or remove provisions that allow the Minister to reduce funding and support through legislative instruments, as this approach centralises power and limits transparency and accountability in funding decisions.

3. Limit additional functional-based assessments and rethink its definition for children. For example, require the NDIA to rely on existing hospital and specialist assessments unless there is a clear reason not to, such as a lack of these assessments.

4. Delete the proposed lG, lH and lJ, which is proposed to be added after subsection 34(1) of the NDIS Act 2013 (Cth).

5. Recognise parental expertise in Schedule 3 reforms.

6. Evaluate all reforms against long-term economic impact on children. Short-term cost containment must not undermine long-term independence, which is the true driver of sustainability.

Conclusion

The NDIS legislation must recognise that supporting children to achieve maximum independence is not merely compassionate policy-it is economically essential! Every dollar invested in effective early

intervention and  neuroplasticity-based  therapy reduces  lifetime care  costs and enables  fuller

participation in society.

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BARBO RA JEDLICKOVA

I urge the Parliament to amend this Bill so that it:

• reflects the lived realities of families, recognises the substantial contribution of carer-parents, and helps prevent their complete burnout,

• draws on existing medical expertise rather than creating new layers of bureaucracy,

• introduce meaningful safeguards rather than granting unchecked authority to a single entity, and

• keep therapy markets open to preserve participant clhoice. Restricting access to therapists would reduce service quality, increase prices, and ultimately drive higher long-term costs.

I would welcome the opportunity to provide further evidence and appear at a hearing.

Kind regards,

Associate Professor

Chair, UQ Network for Carers of Children with Special Needs and Serious Chronic Illnesses

TC Beirne School of Law

The University of Queensland

Brisbane

E W law.uq.edu.au

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