Submission 2419
Submission to Community Affairs Legislation Committee
RE: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
About
I am a disabled person who has lived in 3 states (QLD, NSW, VIC) since becoming an NDIS participant in 2020. I am also a currently registered non-practicing psychologist, with my background being clinical psychology. I have been engaged with disabled community in leadership and advocacy roles, particularly in the mental health space, and have worked in the disability sector as a peer support worker, researcher, and psychologist/clinical psychology registrar.
To give context to my submission, I’d like to share more detail regarding my circumstances and experiences accessing NDIS.
I receive support under the NDIS for several conditions. Due to one of these conditions, I experience chronic pain and fatigue resulting in physical impairment, and impaired cognitive functions. The other two conditions would be considered “psychosocial” and impact both my cognitive and social functions. Initially, I was rejected for NDIS when it rolled out in QLD. The letter I received was brief, stated what criteria I supposedly did not meet, and provided zero explanation for why it was determined I did not meet those criteria. Direct contact with an NDIA representative gave me no further information, and all I was told was “get an OT report”.
At the time I was receiving Centrelink Youth Allowance payments. I had experienced homelessness, and this factor combined with the impacts of my disabilities led to difficulty maintaining employment. Centrelink income was not liveable. I am also transgender, and as my family were reasonably conservative, I did not have any contact with them let alone any ability to receive financial aid from them.
Overall, this meant my financial position was very poor and the cost of an OT was not feasible. I attempted to access one through mainstream services, and was told there were no services that would fund an OT functional capacity assessment – at best I could receive 20 minute sessions (and no assessment and report) under a Chronic Condition Management Plan (CCMP). I was able to find an OT through connections with disabled community who offered to complete the assessment at a significantly reduced cost for me, only $600. It was still a high cost that took months for me to afford, but my support needs were severely impacting me. No existing treatment available through the public health system had helped alleviate my symptoms, and there weren’t any alternative options under the public system for long-term management of my disabilities. If I wanted to survive, I needed NDIS.
Through this application, I was supported by a network of health professionals who kindly bulk-billed me or significantly reduced their fees. I also had access to a social worker who was assisting me with a Disability Support Pension (DSP) application alongside my NDIS application. With the social worker’s help, I was approved for DSP in 2018 on my first application within 6 months of applying. Despite now being a psychologist, I remain on DSP to this day as I cannot work sufficient hours to support myself financially. I hope this gives an indication of the severity of impairment I experience.
My application for NDIS took multiple additional applications/appeals and was not approved until early 2020. Partway through the application process, my social worker informed me they would no
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longer be able to support me. I accessed them through Peer Mentors and Helpers (PHaMs), which was a service for people with mental health conditions. PHaMs lost their funding, and the reasoning my social worker was told was that their services were becoming integrated into NDIS, and they could now only work with NDIS participants. They could no longer help me because I was not yet a participant.
I continued to apply and found myself particularly bitter when my subsequent application for NDIS was rejected, with the justification that my disabilities could be appropriately managed through “mainstream services”. Of course, nobody within the NDIA was able to tell me what these supposed services are. PHaMs was defunded, and OT was limited in support they could provide through a CCMP. There were no options for funded support work, any schemes for assistive technology were being discontinued due to NDIS, and other allied health supports were limited by the 5 sessions of the CCMP or the measly 10 sessions under a Mental Health Care Plan (MHCP).
Mainstream services to support disabled people outside of NDIS didn’t exist then, and they certainly do not exist now.
The services that were available to us were defunded, cut, and removed under the pretence that support would be available through NDIS. It did not matter if you were not yet on NDIS, and it does not seem to matter now with the introduction of this new bill that services to support those who will be removed from NDIS simply do not exist (with exclusion to the Thriving Kids initiative).
Despite my position and the difficulty accessing the scheme, I was approved after citing legal precedents (one such example being Mulligan and NDIA [2015]). The NDIA representative who approved me repeatedly stated that they did not understand why I had previously been rejected. They could not see any sufficient justification in NDIA records explaining the previous decisions, and following a Freedom of Information request for my file notes, I also found no records explaining the decisions to reject my applications/appeals.
Since then, the supports I have received under NDIS have been instrumental to my completion of a Master of Clinical Psychology – a highly competitive and demanding course of study for an industry sorely in need of practitioners. Without NDIS supports, I have no doubt that I would not have been able to complete studies or become a registered psychologist.
As someone who has first-hand experienced both the trials and benefits of NDIS, the presented Bill poses a major concern not only for myself, but also for other vulnerable disabled people. I am especially concerned for disabled people who are low income and unlikely to be appropriately supported if their access to NDIS is revoked, as we do not have alternative appropriate services for us. Also as a psychologist, and someone receiving support for psychosocial disability I am highly concerned that those on NDIS for mental health concerns and autism will be especially targeted by this bill.
Key Concerns
I am primarily concerned about changes to access, and reassessment of existing participants.
- Functional capacity assessment I understand the benefits of functional capacity assessment and the insight they can provide into an individual’s needs. Unfortunately, as an allied health professional I cannot agree that a standardised assessment will be effective. Firstly, the idea that a “standardised, evidence-based assessment” is
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feasible shows an astounding lack of understanding of the diversity of disability, and how assessments are developed. Clinicians when performing assessments have to carefully select a battery of assessments specific to the individual as the methods used to create assessments (and associated evidence for the validity and efficacy of these assessments) heavily relies on assessing a single condition, and sometimes not even the condition but a single aspect of it. In reality, most disabled people live with comorbid and interacting conditions creating the over-arching experience of disability. If assessments are not appropriately adapted based on the conditions of the individual (i.e. if they are standardised across all disabled people) they will inherently be invalid and not evidence-based.
Second, a functional capacity assessment alone does not provide a full understanding of a disabled person’s needs. Neuropsychological assessments for example are important for those with cognitive impairments, and are different to functional capacity assessments. I am sure there are other assessments, but this is a single example to highlight that a functional capacity assessment alone is insufficient to understand an individual’s needs.
- Determination of impairment permanency This is a particularly concerning point for myself, as it is one of the issues I encountered when first applying for NDIS. My disability had been deemed permanent through extensive assessments from my GP, clinical psychologist, physiotherapist, occupational therapist, and even Centrelink (where I was assessed by a third-party psychologist and GP for DSP application). However, a poorly trained NDIA staff member with no medical background assumed they could determine permanency better than my entire team of medical professionals.
They decided one of my conditions was not permanent, as I had not received treatment through a Pain Clinic. I can tell you what treatment a Pain Clinic offers for my condition, as it follows evidence based practice:
- Cognitive Behaviour Therapy
- Improved Sleep Hygiene
- Physiotherapy (typically graded exercise)
- Medication (such as a serotonin-norepinephrine reuptake inhibitor) Funnily enough, all of these treatments can be accessed through a GP, clinical psychologist, and physiotherapist without ever stepping foot inside a Pain Clinic. I had all three provide evidence that I had spent years engaged with treatment without any improvements, yet because I didn’t do one of the Pain Clinic programs (which are brief, and take months if not years to get into under the public health system) I was initially rejected. NDIA staff were unable to supply any sort of statement or evidence to show that Pain Clinic treatment was required. I am not the only person who has been told this by NDIA either – I personally know at least 3 other people who were rejected for the same reason.
With this new Bill, I am concerned it will only further increase the power of poorly trained, ignorant non-medical professionals to make decisions to reject or revoke access to NDIA on grounds of not undertaking all available treatment. If an automated system is used to make these decisions, my concern is only further increased. Automated services have not been used effectively by government services in the past, and have a death toll attached (see Centrelink Robodebt). Automation would
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also remove the nuance to understanding the individual’s situation and circumstances. NDIA staff are already poor at this, but turning access into a checklist for a computer will only worsen the problem.
Conclusion
These changes will result in blood on the hands of ministers who support it. They are not disability centred, they are not morally sound, and they are not evidence-based. I understand there is a large economic toll associated with the upkeep of NDIS, but I am yet to see any sort of mention of positive impacts of NDIS in creating employment opportunities, or how NDIS supports can enable participants who may otherwise be unable to work to join (or rejoin) the workforce.
These changes also target disabled people when we are the ones in a position of vulnerability, where our very existences are being reduced to how much of a “financial burden” we pose. It is ignoring the fact that this “burden” would not be so high if it were not for the disability industry taking advantage of us. The ‘disability tax’ is something I come across frequently, where assistive technology costs three or four times more when sold through disability providers/marketed to disabled people compared to when the same product is sold for a non-disabled population/in mainstream shops. There are also businesses taking advantage of NDIS participants in other ways, like billing for services not provided or billing for services they would not bill a non-NDIS participant for (I’ve personally been billed $120 for a 30 second phone call to confirm an appointment). These businesses target us knowing disabled people are vulnerable and less likely to take action against them for fear of losing necessary supports, or simply not having the skills or capacity to be able to do so.
Why are initiatives to reduce costs of NDIS targeting disabled people, and not the foul businesses/ disability industry that take advantage of us? Why are initiatives not addressing these primary sources of ‘fraudulent spending’? Why are disabled people being targeted on a wide-scale level?
I also must ask: where will the people whose access to NDIS is revoked or denied receive support? I am not speaking of those who will be eligible for Thriving Kids, but adults – particularly adults with psychosocial disability. Where are these services? They certainly do not exist under the public health system. Many disabled people struggle to retain employment and are low income, making the public health system the only option available to us. We have no alternative: the MHCP and CCMP are designed for brief treatments, not ongoing support. Alternative supports (such as PHaMs) have been defunded and no longer exist. Without any alternatives for support, disabled people who lose NDIS access will be condemned to isolation, suffering, and potentially death.
This Bill does not address the real issues of the scheme, and should not proceed.