Complex disability, AAC, and ongoing allied health supports for a child with a brain injury | External submission

I am writing as the parent of a young child with complex and permanent disabilities arising from a brain injury at birth.

I support efforts to improve the sustainability of the National Disability Insurance Scheme (NDIS), reduce fraud, and ensure funding is directed where it is genuinely needed. However, i am deeply concerned that reforms focused primarily on reducing expenditure risk causing significant harm to participants with the most complex and lifelong support needs.

For families like mine, the NDIS is not an optional service or a temporary measure. It is the foundation that allows our daughter to participate in everyday life, communicate, access healthcare, learn, develop skills, and safely engage with her community.

My daughter has complex and lifelong support needs. She is entirely tube-fed and does not eat orally. She relies on specialised equipment, assistive technology, and intensive daily supports. She uses augmentative and alternative communication (AAC) to express herself, and ongoing speech pathology, occupational therapy and other allied health supports are essential to her development, wellbeing and participation.

As a child with a permanent disability and highly complex support needs, my daughter represents exactly the group of Australians the NDIS was originally established to support. I therefore urge the Committee to ensure that reforms intended to return the Scheme to its original purpose do not inadvertently reduce supports for those participants whose disabilities are significant and lifelong.

While early intervention has been incredibly important in helping her build skills and maximise her potential, i am concerned that public discussion around the NDIS increasingly focuses on early childhood intervention as though it is the primary purpose of the Scheme. For children like my daughter, disability is not something that will be resolved through intervention alone. Her disability is permanent, and she will require disability supports throughout childhood, adulthood and adulthood.

This legislation is therefore not simply about services for young children. The decisions made through these reforms will affect my daughter’s opportunities for communication, independence, education, community participation, health and quality of life across her entire lifespan.

One of my greatest concerns is the proposal to reduce participant supports before replacement Foundational Supports are fully established, adequately funded, operational and demonstrated to be effective. Families are being asked to trust that mainstream systems will fill these gaps, yet our lived experience tells us otherwise.

Our experience within mainstream early childhood services highlights this concern. Despite the dedication and goodwill of individual educators, we experienced serious concerns regarding our daughter’s safety and whether her immediate care needs could be met consistently and appropriately.

These challenges were not due to a lack of care from staff. Rather, they reflected the reality that mainstream services often do not have sufficient funding, staffing levels, specialist training or clinical expertise to safely support children with complex disabilities. Our experience made it

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abundantly clear that many mainstream systems are already under signiﬁcant pressure and are not equipped to provide specialised disability support without substantial additional investment.

Our experience has also highlighted a broader issue regarding inclusion. Meaningful inclusion for children with signiﬁcant disabilities and complex support needs cannot be achieved when services are already struggling to meet their most basic care requirements. When staff are required to devote signiﬁcant time and attention to ensuring a child’s immediate health, safety and personal care needs are met, opportunities for social participation, learning, communication and genuine inclusion often become secondary. Inclusion is about more than physical presence in a mainstream environment. It requires the staffing, expertise, resources and specialist support necessary to enable a child to actively participate alongside their peers. Without this investment, children with complex disabilities risk being present but not truly included.

Expecting childcare, education, health and other mainstream services to absorb children with complex disabilities without providing the funding, workforce and specialist capability required is unrealistic. More importantly, it is unsafe.

This is why I am concerned by proposals that assume mainstream systems can replace NDIS- funded supports. Until those systems are genuinely capable of delivering safe, specialised and individualised support, reducing NDIS funding simply transfers risk onto disabled children and their families.

I am also concerned by the direction of participant budgets and planning decisions. Despite previously demonstrating through the Administrative Review Tribunal process that additional supports were both reasonable and necessary, our most recent NDIS plan nevertheless resulted in funding reductions in multiple areas. This experience has signiﬁcantly undermined our conﬁdence that future planning decisions will consistently reﬂect participants’ actual support needs.

Our most recent plan demonstrates why headline funding ﬁgures can be misleading. Although total budget remained much the same, this reﬂected new supports my daughter now requires as she grows older. At the same time, funding for other supports was reduced, leaving us with fewer resources to meet ongoing needs that had previously been accepted as reasonable and necessary.

For families already navigating lifelong disability, repeated funding reductions and ongoing uncertainty create enormous stress and make long-term planning extremely difficult. Families need certainty that essential supports will remain available so their children can continue to develop and participate in their communities.

The burden carried by families caring for children with disability must also be recognised when considering policy reform.

Outside of any funded supports, we provide around-the-clock care for our daughter. Our daily lives involve administering tube feeds and medications, managing specialised medical equipment, providing personal care, coordinating and attending numerous medical and therapy

appointments, implementing home therapy programs, communicating with specialists,
managing NDIS administration and reviews, advocating across health, education and disability systems, and providing the constant supervision our daughter requires to remain safe.

Many aspects of our daughter’s care are equivalent to nursing tasks that would otherwise be performed by trained health professionals. This level of responsibility does not stop overnight, on weekends or during school holidays. It is our everyday reality.

There is often an assumption that families can simply do more if government-funded supports are reduced. For families like ours, that is simply not possible. We are already providing as much unpaid care as is physically, emotionally and practically possible.

Any further reduction in supports would not simply result in families filling the gap. Instead, it would come at the expense of carers’ physical health, mental health, workforce participation and long-term capacity to continue providing the level of care required.

Families like ours are not asking the NDIS to replace parenting. We ask the NDIS to fund the disability-specific supports that no ordinary family could reasonably be expected to provide alone.

Throughout discussion of the reforms, I am concerned that participants with significant and permanent disabilities can become overlooked within broader conversations about Scheme growth and sustainability. While some participants may require short-term intervention or have support needs that change over time, there is a cohort of Australians whose disabilities are lifelong, whose support needs are substantial, and whose reliance on the NDIS will never meaningfully decrease. The design and implementation of these reforms should specifically consider the impact on this cohort.

The Bill is intended to secure the long-term sustainability of the NDIS, and I support efforts to reduce fraud, improve efficiency and ensure funding is directed where it is genuinely needed. However, sustainability should not be achieved through reducing supports for participants with the most significant and permanent disabilities. For people whose support needs are lifelong and unlikely to diminish, sustainable reform should focus on addressing systemic inefficiencies and strengthening mainstream and foundational services, while preserving the reasonable and necessary supports that prevent greater long-term costs to government, families and the broader community. The success of the Scheme should not be measured solely by reductions in expenditure, but by its ability to deliver meaningful outcomes for people with disability throughout their lives.

For participants with permanent disabilities, support needs cannot simply be reduced without consequences. Savings achieved through reductions in disability supports may instead reappear as increased costs in health systems, hospital admissions, crisis care, educational supports, family breakdown, lost workforce participation and carer burnout. A genuinely sustainable disability system should consider whole-of-government outcomes rather than measuring success solely through reductions in NDIS expenditure.

While expenditure control is important, children like my daughter deserve more than a system focused primarily on managing costs. They deserve a system that invests in their future, protects their safety, promotes their dignity, and recognises that disability support is often a lifelong commitment rather than a short-term intervention.

The NDIS was established on the principles of reasonable and necessary supports, participant choice and control, and the right of Australians with disability to participate fully in society. I am concerned that these principles risk being overshadowed by a focus on expenditure reduction rather than participant outcomes and quality of life.

I respectfully ask the Committee to ensure that reforms:

Protect participants with permanent and significant disabilities whose support needs will not diminish over time.
Ensure no reduction in participant supports occurs before replacement services are fully funded, operational and proven to deliver equivalent outcomes.
Continue to fund evidence-based therapies, assistive technology, AAC and other communication supports that maximise independence, participation and quality of life.
Recognise that mainstream systems currently do not have the funding, workforce or expertise required to safely replace specialist disability supports for children with complex needs.
Acknowledge the substantial unpaid care already provided by families and the risks of further shifting responsibility onto informal carers.
Preserve participant choice and control as fundamental principles of the Scheme.
Measure the success of reforms through participant outcomes, safety, wellbeing and quality of life, rather than solely through expenditure targets.
Require ongoing monitoring and public reporting of the impact of reforms on participants with significant needs and permanent disabilities, including clear evidence that any replacement supports deliver outcomes equivalent to those previously funded through the NDIS.

The NDIS has enabled my daughter to access essential therapies, communication supports, assistive technology and specialised services that would otherwise be beyond our family’s reach. These supports have helped her participate more fully in her community and achieve meaningful gains in independence, wellbeing and quality of life. They are not luxuries or enhancements; they are reasonable and necessary supports that allow her to function, engage in society, maximise her potential and reduce the risk of poorer long-term outcomes for both her and our family. While her disability is lifelong and her need for support will continue throughout adulthood, the value of the NDIS is that it provides people with significant disabilities the opportunity to live with dignity, participate in their communities and achieve the best quality of life possible.

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The measure of success for these reforms should not be how much less is spent on people with disability, but whether those people are able to live safely, communicate effectively, participate in their communities and achieve the best quality of life possible.

I urge the Committee to ensure that these reforms strengthen the NDIS without diminishing the opportunities, dignity, safety and future of Australians living with lifelong disability. Reforms intended to secure the future of the Scheme must continue to recognise and support those participants whose need for disability supports will remain permanent and significant throughout their lives.

Thank you for considering my submission.

Yours sincerely,