Submission 893
NDIS Reform Submission - Impact on Carers and
Children with Disability
My name is . I am a sole parent and full-time carer of three children with disability- M (16), D (14), and R (10). All three of my children are autistic (Level 2) and also experience additional diagnoses that contribute to their overall level of functional impairment. I am also managing my own chronic health condition.
I am writing to outline the real-world impact that recent and proposed changes to the NDIS are having on families like mine.
My eldest son, M, experiences selective mutism, which significantly impacts his ability to communicate in educational and social settings. Access to speech therapy has been critical in supporting his participation in school, developing functional communication skills, and building the confidence needed to engage with peers and learning environments.
Despite this, M’s speech therapy funding was removed without consultation, despite communication being his primary NDIS goal. This decision has had immediate and severe consequences.
As a Year 11 student, this loss of support has occurred at a particularly critical and sensitive time in his education. The removal of speech therapy has directly impacted his ability to engage with school, and I have already been required to attend meetings with the school regarding concerns that he may not be able to achieve the educational pathway we had previously planned.
This is not due to lack of ability, but due to the removal of essential supports.
At the same time, the NDIS review process is taking in excess of six months to a year at best. This means that even where decisions are inappropriate, there is no timely mechanism to correct them. In practice, this results in children missing entire stages of critical education and development while waiting for decisions to be reconsidered.
This is not a theoretical future impact- it is happening now.
As a parent, I am deeply concerned that early intervention opportunities are being lost at a critical developmental stage. The long-term cost of this-both socially and economically-will far exceed the short-term savings achieved through funding cuts.
In addition to therapy supports, my children have also lost access to community-based programs, including camps and structured social skills supports that provide intensive, one-on-one assistance. These programs have been the most effective interventions for developing social communication, independence, and emotional regulation. Their removal has resulted in increased isolation, heightened anxiety, and a noticeable decline in mental health.
I also wish to highlight the impact of recent changes to how funding is structured and released.
Previously, I was able to manage my children’s plans in a way that allowed me to save funding across the year and allocate it toward intensive therapy blocks during school holidays. This approach was highly effective. Intensive supports delivered in concentrated periods-particularly over the January school holidays-resulted in meaningful, cumulative progress toward their goals in real time.
Under current arrangements, where funding is restricted and released in structured intervals, this is no longer possible. In order to access the same level of intensive support, I would be required to “save” funding across the entire year. However, this is not feasible in a system where plans roll over and reset, effectively removing the ability to plan and allocate funding flexibly.
Submission 893
The result is that funding exists in theory, but cannot be used in the way that delivers the best outcomes.
This is a clear example of how structural changes to the scheme are reducing effectiveness, not just expenditure.
The reduction in support hours has also had a direct impact on my capacity as a carer. As a single parent living with chronic illness, I rely on support services to maintain basic stability for my family. Without these supports, I am expected to meet complex care needs across three children while managing my own health, on a carer’s pension that does not allow for alternative private supports.
This situation is not sustainable. It places both myself and my children at risk—physically, emotionally, and financially.
I also wish to highlight a significant and often overlooked consequence of the current system: fear.
Many participants, including myself, have chosen to allow plans to “roll over” rather than engage in proactive reviews to better align supports with current needs and goals. This is not because plans are appropriate, but because of a well-founded fear of losing funding.
Within the community, it is widely observed that participants who seek to challenge decisions or request adjustments frequently experience substantial reductions in their plans—often in the order of 50%. This creates a powerful deterrent to advocacy.
The result is a system where people knowingly remain on inappropriate plans, with funding allocated to supports they cannot use, rather than risk losing what little they have.
This fear is pervasive and deeply felt. It shapes decision-making in a way that undermines the intent of the NDIS. Participants are discouraged from exercising their rights, and “choice and control” becomes theoretical rather than real.
At the same time, families are required to undertake significant advocacy simply to access basic, appropriate supports. This comes at a cost. Our children lose time, attention, and energy from their carers while we navigate systems, gather evidence, and fight for services that should be accessible without this level of burden.
The cumulative impact is exhaustion, burnout, and disengagement.
In this context, alternative supports such as Carer Gateway have not provided meaningful or practical assistance. They do not replace the structured, disability-specific supports that have been removed, and are often not fit for purpose for families managing complex needs.
I also wish to raise serious concerns about the increasing reliance on narrow diagnostic categories and the apparent shift toward assessing eligibility or support needs based primarily on a single “primary diagnosis.”
For individuals with complex, cumulative conditions, this approach does not reflect the reality of disability or care needs. Functional capacity is not determined by one diagnosis in isolation—it is the result of multiple interacting conditions, including physical, neurological, and psychosocial factors.
In practice, the impact of disability is cumulative. The burden of care, the level of impairment, and the supports required can only be properly understood by considering the whole person.
Assessment of functional capacity should be informed by clinicians and primary care providers who have direct, ongoing experience with the individual—not determined through rigid frameworks or impersonal systems.
Submission 893
I am also deeply concerned about the increasing administrative and financial barriers to accessing the NDIS. As someone living with chronic illness and ADHD, I face both financial and cognitive barriers to engaging with the system.
The cost of obtaining the reports required to apply for or maintain access to the NDIS is beyond my means. At the same time, the complexity of the system itself has become increasingly difficult to navigate safely.
Each time the rules change, the goalposts shift. This creates a constant state of uncertainty, fear, and overwhelm.
I have personally experienced the mental health impact of these changes and have sought psychological support due to overwhelm.
The principle of “choice and control,” which is central to the NDIS, is also being eroded.
Finally, I wish to raise serious concerns regarding the removal of parent and carer voices from complaints and escalation processes.
Without meaningful inclusion of parent and carer input, decisions are increasingly being made based on limited or incomplete evidence.
There is also a broader concern regarding where resources are being allocated, with funds directed toward defending decisions rather than providing supports.
There is a clear disconnect between the intent of the NDIS and the lived experience of participants and carers.
I urge decision-makers to reconsider these changes, particularly in relation to: 1 Access to speech therapy for children with communication disabilities 2 Recognition of cumulative and complex disability, rather than reliance on a single primary diagnosis 3 Funding for community participation and social development programs 4 Flexible use of funding to allow effective delivery of intensive supports 5 Adequate support hours for families with complex needs 6 Reduction of administrative delays in review processes 7 Reduction of administrative and financial barriers to access 8 Preservation of genuine choice and control in selecting appropriate providers
Without these, the NDIS risks failing the very people it was designed to support.
We elected a government to strengthen essential supports, not to make them harder to access.
Yours sincerely,