Submission 1895 - Supplementary Submission
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill
My name is . I am the parent and full-time carer of my three-year-old daughter, who lives with complex disabilities and high support needs. I have been involved with the NDIS for more than two years and have spent that time fighting continuously to access the therapies and supports my daughter requires.
Caring for a child with significant disabilities is not something that stops at the end of the day. It is a 24-hour responsibility that affects every aspect of life — physically, emotionally, financially and mentally. Families like mine rely on the NDIS not for luxuries, but for essential supports that allow our children the opportunity to develop skills, improve independence and participate in everyday life.
I am deeply concerned about the proposed changes under the NDIS Amendment Bill and the direction the system is moving in. My experience with the NDIS has too often been one of exhaustion, constant advocacy and feeling as though neither my child nor our family are being treated as human beings with genuine needs.
Failure to Properly Consider Evidence
One of the most distressing parts of navigating the NDIS has been the repeated experience of submitting extensive evidence and specialist reports, only for those reports to appear to be ignored or inadequately considered.
For my daughter’s recent review, I personally submitted more than 30 reports from qualified professionals involved in her care and therapy. Despite this, essential therapies and supports were still left out of her plan. This then forces families into endless review processes, internal reviews and appeals simply to access supports that are clearly documented as necessary.
The burden this places on parents and carers is unreasonable. Families are expected to become advocates, administrators, coordinators and legal representatives on top of already providing around-the-clock care.
The current system already feels adversarial, and I fear the proposed changes will make this even worse.
Underfunding of Early Intervention and Essential Therapies
The NDIS has worked well when it has provided my daughter with access to therapy and intensive early intervention supports. These supports have improved her independence, development and overall quality of life.
However, despite clear evidence of need, has consistently been underfunded for the therapies she actually requires.
Submission 1895 - Supplementary Submission
Early intervention is critical. These therapies are not optional extras. They are what help prevent further complications, reduce long-term dependency and give children the best possible opportunity to develop independence as they grow older.
Reducing or restricting supports now will not save money in the long term. It will instead create more dependence, greater support needs and higher long-term costs to the NDIS and broader health system in the future.
Families are repeatedly told that therapies can simply be done at home by parents instead of being funded appropriately. While I do everything I possibly can at home, I am not a physiotherapist, occupational therapist or speech therapist. These professionals complete years of university training and clinical practice. It is unrealistic and unfair to expect parents to replace specialist therapy services.
The expectation that unpaid carers can simply absorb these responsibilities demonstrates a serious misunderstanding of the realities families face.
Cost of Reports and Functional Capacity Assessments
Another major issue is the expectation that families must constantly provide further reports and assessments to justify supports, while funding for those reports is often inadequate.
I was recently informed that only six hours would be funded for a Functional Capacity Assessment. However, the therapy centre involved in my daughter’s care advised that a minimum of fifteen hours would realistically be required to complete the assessment properly.
When I raised this concern, I was effectively told that I should push back on the therapists and attempt to make them complete the assessment within the inadequate funding allocation.
This places families in impossible situations. Therapists cannot ethically complete detailed assessments without sufficient time, yet without these assessments families risk lower funding in future plans because the evidence is considered insufficient.
It becomes a constant cycle:
- Insufficient funding,
- Inadequate reports due to funding limitations,
- Denied supports,
- Further reviews and appeals,
- Then additional requests for more evidence.
The process is exhausting and damaging for families already under immense pressure.
Submission 1895 - Supplementary Submission
Impact on Parents and Carers
The emotional and mental toll of navigating the NDIS system has been severe.
Instead of feeling supported, many parents feel blamed, dismissed and forced to constantly justify their child’s needs. I have personally experienced planners speaking to me in ways that felt disrespectful and dismissive while I was simply trying to advocate for my daughter.
At one point I was told to “stop being argumentative” for raising legitimate concerns about my child’s supports and funding.
Parents should not have to fight this hard for basic necessities for their children.
The current system contributes significantly to carer burnout and mental health deterioration. Many carers are already functioning under extreme exhaustion due to the demands of caring for children with complex disabilities. Adding continual battles with the NDIS creates enormous additional stress and crisis for families.
Concerns About the Proposed Changes
I am particularly concerned that the proposed changes will:
- increase barriers to accessing support,
- place even greater expectations on unpaid carers,
- make it harder for children to access early intervention,
- increase reassessments and administrative burden,
- create more fear and instability for vulnerable families,
- and prioritise cost-cutting over individual human needs.
Every child’s situation is different. Disability cannot be reduced to formulas, automated processes or rigid funding categories. Families need planners and decision-makers who properly read reports, understand complex needs and assess each participant as an individual person.
Recommendations
I respectfully ask the Senate Committee to consider the following:
- Protect and strengthen access to early intervention therapies for children with disabilities.
- Ensure planners and decision-makers are properly trained to assess complex cases and fully review submitted evidence.
- Reduce the excessive administrative burden placed on families and carers.
- Ensure adequate funding is provided for Functional Capacity Assessments and specialist reports.
- Recognise the limits of unpaid carers and stop shifting professional therapy responsibilities onto parents.
Submission 1895 - Supplementary Submission
- Improve transparency, accountability and consistency in planning decisions.
- Ensure children with disabilities are treated as individuals with human dignity, not as budget figures or administrative tasks.
Conclusion
The NDIS has the potential to change lives when it works properly. I have seen firsthand the progress my daughter can make when she receives the right support.
However, I have also experienced the enormous harm caused by underfunding, inadequate planning processes and the constant need to fight for essential supports.
Families like mine are not asking for unnecessary services. We are asking for children with disabilities to have a fair opportunity to develop, participate and live with dignity.
I urge the Senate Committee to carefully consider the real-life consequences these changes may have on vulnerable children, carers and families across Australia.
Children should not lose critical opportunities for development because their families are too exhausted to continue fighting a system that is meant to support them.