Submission 2693
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the
NDIS for Future Generations) Bill
Note: I used chatgpt as an accessibility tool to transform my points into coherent sentences. I have checked and it hasn’t made any mistakes with that so I hope this won’t count against me or anything. I wanted to try to write it myself but I am very sick with flu and can’t wait until I get better because we weren’t given enough time.
Introduction
I am writing as an anonymous NDIS participant with Autism Spectrum Disorder Level 2, ADHD and Dissociative Identity Disorder. I have been an NDIS participant for approximately eighteen months.
My NDIS funding currently supports in-home assistance, community participation support, support coordination and plan management. These supports do not provide me with a luxurious lifestyle. They help me manage daily life, attend appointments, obtain medication, shop for groceries, maintain routines and conserve enough energy to function.
I am deeply concerned about the direction of the proposed reforms. In my view, many of the changes contained in this Bill would make an already difficult and adversarial system even more restrictive, while doing little to address the underlying problems within the NDIS and the NDIA.
The most important thing the committee needs to understand is that making access harder and punishing us harder if we succeed will not make us go away. We are permanently disabled, and we need support. Disability support is not optional for us.
Community Participation Funding
I am particularly concerned about any proposal that would further restrict community participation supports.
My community participation funding is not primarily used for recreation or social activities. I use support workers to attend appointments, collect medication and complete grocery shopping. If I had the funding and capacity to participate in more social activities, I would use it for that as well, but currently I am focused on meeting essential daily needs.
Without support, I experience significant sensory overload, overwhelm and anxiety. When overwhelmed, I can struggle to think, read, remember what I am supposed to be doing or complete tasks. In some situations I may experience a meltdown. I am particularly concerned about experiencing a meltdown in public while alone, because people often attempt to physically restrain me, which increases my panic and can escalate the situation further.
Submission 2693
If community participation funding is reduced, I would likely have to reduce other supports and services in order to cope. I have already considered whether I would need to alternate between different healthcare appointments because I could not afford to maintain them all. I would also become even more isolated than I already am.
These supports are not luxuries. They are practical supports that allow me to safely participate in everyday life.
Changes to “Reasonable and Necessary” Supports
I am also concerned about further restrictions to what qualifies as a reasonable and necessary support.
I have already experienced situations where supports were denied because the NDIA argued that the support need did not arise directly from my recognised disability. For example, I was told that executive dysfunction and difficulty with transitions were not attributable to my autism and therefore were not grounds for support, despite these being widely recognised challenges experienced by many autistic people.
The result is that people can be denied support for genuine functional impairments because of disputes about diagnostic categories rather than consideration of their actual support needs.
If the rules become even narrower, more participants will lose access to supports they genuinely require. This will not increase independence. It will simply leave people struggling without assistance.
The NDIS is already an extremely difficult, stressful and often humiliating system to navigate. It does not need additional barriers that make it easier to refuse support.
Stricter Permanence Criteria
I do not support stricter permanence criteria.
People already have to demonstrate that they have a permanent disability in order to access the NDIS. In practice, many people with clearly permanent conditions are required to repeatedly provide extensive evidence before they receive meaningful support.
I struggle to understand what problem stricter permanence requirements are intended to solve.
For many participants, obtaining specialist reports and additional evidence is expensive, time consuming and exhausting. Additional requirements are likely to exclude people with the least capacity to navigate complex bureaucratic processes rather than people who do not genuinely need support.
Early intervention exists because providing support early can prevent the need for more intensive and costly support later. Introducing additional barriers appears inconsistent with that principle.
Submission 2693
Requirement to Try “All Appropriate Treatments”
I am deeply concerned about any requirement that participants must try all appropriate treatments before becoming eligible for support.
This approach disproportionately disadvantages people who lack financial resources, live in areas with limited services or have conditions for which there are numerous possible treatment approaches.
In the case of trauma-related conditions, there can be many different therapies that may be considered appropriate. Trying every possible treatment approach can take years and cost substantial amounts of money.
It may also be counterproductive. A strong therapeutic relationship is often critical to successful treatment. Requiring people to repeatedly change therapists simply to satisfy eligibility requirements risks making people worse rather than better.
A support system should focus on functional needs, not create endless treatment hurdles that many people can never realistically complete.
Plan Flexibility and Participant Choice
The NDIS was built on principles of choice and control, but many participants no longer experience the scheme that way.
Plans are already highly restrictive. Participants often have limited flexibility to respond to changing circumstances, despite being the people who understand their own needs best.
I know my own support needs better than a planner who has spoken to me once and does not know my daily life.
The proposed changes appear to move further away from participant choice and towards increased control by the system. In my view, participants need more flexibility and autonomy, not less.
Automated Decision-Making
I strongly oppose increased reliance on automated decision-making.
The consequences of NDIS decisions are significant. They affect people’s safety, health, independence and quality of life. In some cases they can have life-or-death consequences.
One of the longstanding concerns about the NDIS has been the lack of accountability when inadequate support leads to serious harm. Increasing automation risks making this problem worse.
Decisions that affect whether disabled people receive essential support should involve meaningful human oversight and clear accountability.
Submission 2693
Where decisions are made, there should be identifiable responsibility and a duty of care. Automation should not be used to distance decision-makers from the consequences of those decisions.
Ministerial Powers and Ongoing Uncertainty
I am also concerned about the broad powers granted to the Minister to make decisions affecting entire groups of participants.
As an autistic person, I find uncertainty and constant change particularly difficult to manage. The ongoing reforms have already had a significant psychological impact on me. Since these changes were announced, a substantial amount of time in my psychology appointments has been spent trying to manage fear and uncertainty about what may happen to my supports in the future.
The practical consequence is that it becomes difficult to plan ahead, maintain routines and focus on improving my functional capacity.
I am already permanently concerned about losing support because the rules, interpretations and expectations seem to change constantly. This uncertainty affects my ability to plan for the future.
A system intended to support disabled people should not leave participants living in constant fear that the support they rely upon may disappear.
What the Committee Should Understand
There is often an assumption that tightening eligibility requirements only affects people who do not genuinely need support.
My experience suggests the opposite.
People with significant disabilities are often the least able to navigate increasingly complex systems. Additional evidence requirements, more restrictive criteria and more administrative hurdles are likely to exclude people who genuinely need support, particularly those who are already struggling.
Fraud should be addressed. Waste should be addressed. However, making the system harder for disabled people to access does not solve those problems.
Disabled people do not stop being disabled because support becomes harder to obtain.
Recommendations
I recommend that the committee:
- Oppose the Bill in its current form.
Submission 2693
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Return to the drawing board and undertake meaningful reform of both the NDIS and the NDIA.
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Preserve community participation funding and recognise its role in supporting essential daily activities, not just recreation.
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Avoid further narrowing the definition of reasonable and necessary supports.
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Reject stricter permanence requirements that create additional barriers for people with clearly permanent disabilities.
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Reject requirements that participants must exhaust all possible treatments before accessing support.
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Increase participant choice, control and plan flexibility.
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Limit or prohibit automated decision-making in matters affecting participant supports and eligibility.
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Strengthen accountability and human oversight in NDIA decision-making.
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Limit broad ministerial powers that could significantly affect entire groups of participants without adequate scrutiny or consultation.
Conclusion
I support efforts to improve the NDIS and ensure its long-term sustainability. However, sustainability cannot be achieved by making support harder to access for people who genuinely need it.
The NDIS exists because disability creates real barriers to participation and independence. Restricting access to support does not remove those barriers. It simply shifts the burden back onto disabled people and leaves many without the assistance they need to live safely and with dignity.
I urge the committee to reject this Bill and pursue reforms that improve the scheme while respecting the realities of disabled people’s lives.