Submission 2684
Submission to the Inquiry into the NDIS Amendment Reforms
Name: Age: 45
Disability: Spina Bifida
NDIS Participant Since: 2017
Introduction
I am a 45-year-old Australian living with Spina Bifida. I have received disability support services since I was seven years old and have been a NDIS participant since 2017.
I am also employed in the disability and community services sector and have experience working alongside multicultural disability organisations and people with intellectual disability.
This submission reflects both my lived experience as a person with disability and my professional experience supporting others to navigate the disability sector.
The NDIS has provided opportunities and supports that have helped many Australians live more independent lives. However, over many years I have also witnessed increasing bureaucracy, inconsistent decision-making, workforce challenges, barriers for vulnerable communities, and a growing disconnect between the stated goals of the NDIS and the reality experienced by many participants.
My concern is not simply about funding. It is about whether the NDIS continues to uphold its original principles of choice, control, independence, dignity, and inclusion.
Living with a Lifelong Disability
Spina bifida is a permanent and lifelong condition. Like many people with lifelong disabilities, I have spent decades understanding my body, my limitations, my strengths, and the supports that help me live independently.
One of the most frustrating aspects of the current system is the expectation that people with permanent disabilities must continually justify needs that have existed for most of their lives.
Submission 2684
Participants with lifelong disabilities should not be required to repeatedly prove what they already know through expensive reports, assessments, and consultations.
Lived experience should be recognised as a valuable form of evidence.
No professional who meets me once understands my disability better than I do after living with it for 45 years.
Frontline Staff Need Better Disability Knowledge
One of my earliest experiences with the NDIS involved a Local Area Coordinator attending my home to discuss my plan.
When I explained that I had spina bifida, I was told:
“I’ve never heard of that. I’ll have to Google it when I get home.”
That moment has stayed with me because it highlighted a significant issue.
Participants should not have to educate the people responsible for helping them navigate the disability system.
While it is unrealistic to expect every staff member to know every disability, there should be a strong foundation of disability knowledge and an understanding of how lifelong disabilities affect daily functioning, independence, employment, and participation.
Without that knowledge, participants risk receiving poor advice, inappropriate recommendations, and planning decisions that do not reflect their actual needs.
Inconsistent Advice Creates Real Consequences
A more recent experience reinforced these concerns.
As my plan was approaching its review date, my Local Area Coordinator contacted me and asked whether I required any changes or additional supports.
I raised the possibility of receiving disability-related support while at work.
Submission 2684
I was immediately told that workplace supports were not funded by the NDIS.
Because I work within the disability sector, I knew that statement was incorrect. I advised the LAC accordingly and requested that she check.
Several days later, she contacted me and confirmed that I was right.
While I appreciated the follow-up, participants should not need industry knowledge to access accurate information about their supports.
Many participants would have accepted the original answer and never pursued the matter further.
When inaccurate information is provided, people can miss out on supports that help them obtain or maintain employment and participate fully in society.
The Burden of Reports and Allied Health Gatekeeping
I am someone who generally avoids unnecessary engagement with doctors and allied health professionals.
I seek medical assistance when it is genuinely required, not because I believe every aspect of my life requires professional validation.
However, the NDIS increasingly relies on reports from occupational therapists and other allied health professionals to justify supports that participants already know they need.
Participants with lifelong disabilities are often forced to spend significant amounts of their funding obtaining reports to prove needs that are already obvious and well established.
This process consumes resources that could otherwise be used for direct supports and assistive technology.
The current system places too much weight on paperwork and not enough weight on participant knowledge and lived experience.
My Experience with Occupational Therapy Billing
One experience in particular reinforced my concerns about the over reliance on reports.
Submission 2684
I engaged an occupational therapist to obtain a report.
Following a single consultation, I received approximately nine invoices totalling around $9,000.
The situation did not seem right.
I questioned the charges and was not satisfied with the explanations I received.
As a result, I lodged complaints with the NDIS Quality and Safeguards Commission, the NDIA Fraud Reporting Line, and NSW Fair Trading.
Not long afterwards, I received correspondence from the organisation advising that there had been management changes, policy changes, and staffing changes.
This experience strengthened my concerns about accountability within parts of the disability sector.
Participants are often expected to rely on reports written by professionals they barely know, while funding that could be used for supports is consumed by administration and assessment costs.
Common-Sense Supports Should Be Encouraged
One of the clearest examples of inefficiency within the system relates to assistive technology.
I recently purchased a robotic vacuum and mop for approximately $700.
This device allows me to independently maintain my home without requiring a support worker to attend for cleaning tasks.
I can operate it remotely and it significantly reduces my reliance on ongoing supports.
Despite this, my request for funding was rejected.
The irony is that funding a support worker for domestic assistance over many years would cost substantially more than funding a one-off piece of technology.
When occupational therapy reports and consultations are added to the equation, the total cost becomes even greater.
Submission 2684
The NDIS frequently talks about value for money and participant independence.
In my view, practical technologies that increase independence and reduce long-term support costs should be encouraged rather than rejected.
The Changing Nature of Support Work
I have had support workers since I was seven years old.
Over nearly four decades, I have witnessed significant changes in the disability workforce.
In the past, support workers were expected to assist with all aspects of daily living. This included personal care, domestic assistance, community participation, and practical day-to-day support.
Today, there appears to be a growing perception that support work primarily involves social activities and community outings.
While these activities are important, they are only one part of the role.
Many participants require assistance with showering, dressing, meal preparation, domestic tasks, and other essential activities.
Increasingly, participants with higher support needs report difficulty finding workers willing to provide these supports.
Some workers appear willing to take clients out for coffee or social activities but are less willing to assist with personal care and other fundamental aspects of daily living.
This creates inequity for participants with complex needs.
Support work should be recognised as a skilled profession with appropriate training standards and clear expectations regarding responsibilities.
A minimum qualification standard, such as Certificate IV in Disability or equivalent, should be considered to ensure workers are adequately prepared for the full scope of the role.
CALD Communities Face Additional Barriers
Submission 2684
Through my work with multicultural disability organisations, I have seen firsthand the additional barriers faced by culturally and linguistically diverse communities.
Many participants struggle to understand complex NDIS processes and language.
Others rely heavily on family members to navigate systems that are difficult even for native English speakers to understand.
Language barriers, cultural differences, and limited access to culturally responsive services can result in people receiving less support than they need or being unable to effectively advocate for themselves.
The NDIS must do more to ensure equitable access for CALD participants and families.
People with Intellectual Disability Need Stability and Security
I have also worked alongside many people with intellectual disability.
One issue that repeatedly arises is fear.
Many people are worried about losing their funding, losing supports, or being removed from the NDIS altogether.
Whether those fears are justified or not, they are real.
The uncertainty surrounding reforms, reassessments, and changing rules has created anxiety for many participants and their families.
People with intellectual disability often rely on routine, consistency, and trusted supports.
The system should provide confidence and security, not confusion and fear.
Housing and Government Responsibility
As a social housing tenant, I have experienced ongoing confusion between the NDIA, DCJ, Homes NSW, and other government agencies regarding responsibility for repairs, modifications, and accessibility related issues.
Submission 2684
Too often, agencies pass responsibility between one another while participants are left waiting for solutions.
People with disability should not be forced to act as coordinators between government departments.
Greater cooperation and clearer accountability are needed.
Fraud, Accountability, and Public Trust
I support efforts to address fraud and misconduct within the disability sector.
However, it is important to recognise that participants are not responsible for systemic failures.
Many of the issues now being discussed publicly were first identified by participants, advocates, whistleblowers, journalists, and community members.
It is concerning that people with disability often feel that concerns are not taken seriously until they attract media attention.
Fraud and corruption within parts of the disability sector are not the fault of participants.
The overwhelming majority of people with disability are simply trying to access the supports they need to live independently.
Reforms aimed at addressing fraud should focus on providers and systemic weaknesses rather than creating additional barriers, suspicion, or fear for participants.
Concerns About the Direction of Recent Reforms
My greatest concern is that recent reforms appear to be moving the NDIS further away from flexibility and participant-led decision making.
The original vision of the NDIS was based on choice, control, and recognising that people with disability are experts in their own lives.
Increasing restrictions, greater reliance on reports, and rigid interpretations of what can and cannot be funded risk undermining those principles.
Submission 2684
The system should trust participants more, not less.
It should value lived experience, practical outcomes, and long-term independence.
Recommendations
I recommend that the Government:
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Improve disability-specific training for all NDIA and Local Area Coordination staff.
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Ensure participants receive consistent and accurate information.
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Reduce unnecessary report requirements for people with lifelong and permanent disabilities.
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Give greater weight to lived experience and participant knowledge.
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Improve pathways for funding assistive technology that reduces long-term support costs.
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Strengthen oversight of allied health billing practices and report- writing fees.
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Establish stronger workforce standards and minimum qualifications for support workers.
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Reinforce that disability support work includes personal care, domestic support, and daily living assistance.
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Improve access and culturally responsive supports for CALD communities.
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Strengthen safeguards and communication for people with
intellectual disability.
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Improve coordination between the NDIA, housing providers,
and government agencies.
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Ensure anti-fraud measures target provider misconduct
without increasing burdens on participants.
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Return focus to participant independence, choice, control,
and practical outcomes.
Conclusion
I have lived with disability for 45 years and have spent much of my life navigating support systems.
The NDIS has the potential to be one of Australia’s most important social reforms, but it must remain focused on the people it was created to serve.
Submission 2684
Participants should not be forced to repeatedly justify lifelong disabilities. They should not have to spend thousands of dollars on reports to access common-sense supports. They should not be left correcting misinformation or carrying the burden of failures they did not create.
The future of the NDIS should be built on trust, accountability, practical decision-making, and genuine respect for the lived experience of people with disability.
Thank you for considering my submission.