Submission 2532
Submission to the Senate Standing Committee on
Community Affairs - National Disability Insurance
Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
Attention: Committee Secretary, Senate Standing Committee on Community Affairs
Submitted via online portal.
Date: 29th May 2029
I welcome the opportunity to make a submission to the Senate Standing Committee on
Community Affairs regarding the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026. I also welcome further discussion on this matter.
I am:
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A person with disability
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The parent and primary carer of a child with disability and an NDIS participant (21 y/0)
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A NDIS participant
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A disability advocate
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A CEO, Board Member, and Committee Member across government, NDIS, and the NFP space.
My view is shaped by my roles in disability advocacy and housing reform, as well as by my personal experience as a person with a disability and an NDIS participant. After a workplace injury in my twenties, I developed a complex, lifelong neurological disability. I live with
Functional Neurological Disorder, Chronic Pain, Primary Orthostatic Tremor, Secondary
Dystonia, Functional Gait Disorder, dyskinesia, myoclonic movements, and fatigue. These conditions affect my mobility, balance, endurance, and daily activities, requiring ongoing specialist care, assistive technology, and disability supports.
Like many Australians with disabilities, I have encountered difficulties navigating complex systems, obtaining adequate supports, maintaining independence, and exercising real choice and control over the services that impact my life. My experience demonstrates that disability support goes beyond funding or service provision; it encompasses dignity, autonomy, participation, safety, and the opportunity to live an ordinary life within the community.
This lived experience shapes my approach to disability policy, advocacy, and reform. It emphasises my conviction that people with disabilities should be central to decision-making processes, and that any NDIS reform must protect participant rights, ensure choice and control, and guarantee access to reliable, high-quality supports.
Submission 2532
This submission shares my personal experiences and those of my daughter, a 21-year-old woman with autism, psychosocial disability, chronic pain, hypermobility spectrum disorder, hearing impairment, and substantial functional challenges.
I advocate for thoughtful and sustainable reform of the NDIS. While I recognise the Scheme needs improvements and that governments must ensure its long-term viability, sustainability should not come at the expense of increased barriers to support, limited review rights, restricted access pathways, or additional burdens on families already under great strain.
My family’s experience demonstrates what happens when systems fail to respond early, appropriately, and holistically to disability-related needs.
Without NDIS support, I genuinely believe my daughter would not be alive today.
Without access to the NDIS, our family would have lost our housing, financial stability, and long-term well-being. I would still be stuck in a cycle of frequent hospitalisations each year, which would prevent me from working, volunteering, being a husband, and an engaged father.
- Parliamentary Scrutiny and Transparency The consultation period for this Bill is too brief, considering its scale and significance. The proposed reforms significantly alter access to the NDIS, review processes, funding, permanence criteria, and future eligibility standards. Yet, participants, families, advocacy groups, and advisory bodies have been given only a very limited time to understand and respond.
Through my advocacy work and personal experience as an NDIS participant, I have spoken many times with people with disability, their families, carers, and community groups about the proposed reforms. A common feeling has been frustration and a sense of exclusion from the process. Many felt they were simply asked to respond to changes already made, rather than being included from the beginning in shaping them.
For many people with disability, engaging in consultations can be challenging. It often requires managing fatigue from their condition, attending medical appointments and therapy, dealing with hospital stays, navigating changing health, overcoming communication hurdles, managing caregiving responsibilities, meeting work obligations, and handling financial pressures. Genuine participation needs ample time, accessible information, and genuine opportunities to express themselves.
The compressed consultation period has limited many people with disability from fully grasping the depth of the proposed changes, considering their potential impacts, and providing informed feedback. These risks undermine confidence in the reform process and create a perception that consultation is being undertaken as a procedural requirement rather than as genuine co-design.
Submission 2532
I recommend that future consultation processes allow a minimum of 30 days for public feedback, with additional time provided for accessible engagement and targeted consultation with people with disability.
More importantly, people with disability should be involved in the development of policy options from the earliest stages so that co-design is embedded throughout the reform process, rather than occurring after key decisions have already been made.
- Key Decisions Left to Ministerial Instruments, Not Law The Bill allows key decisions about participant eligibility, funding, and support to be made through ministerial instruments rather than primary legislation.
This introduces significant uncertainty for participants and families planning their future. My family already faces ongoing uncertainty due to progressive disability, fluctuating health, and repeated reassessments.
The prospect of future support categories, funding, or eligibility thresholds changing without full parliamentary oversight evokes significant fear. My daughter’s support needs are already inadequately captured by inflexible systems.
Despite numerous allied health reports, annual functional capacity assessments, specialist input, and documented deterioration in her condition, we continually struggle to have her needs properly recognised.
People with psychosocial disability, autism, fluctuating disability, chronic pain, trauma histories, or conditions involving masking behaviours are especially vulnerable to systems that rely on narrow interpretations of disability.
Recommendation: Require that all decisions affecting eligibility, funding, and support categories remain subject to full parliamentary scrutiny via primary legislation.
- Existing Participants Face Narrower Criteria and Fewer Rights
to Challenge Decisions
My family’s experience highlights the importance of review rights and reassessment options.
The existing system has already let my daughter down for many years. Despite clear evidence of changing diagnosis, declining functioning, increased chronic pain, hypermobility-related disabilities, hearing issues, fatigue, anxiety, and social isolation, the NDIA did not conduct a meaningful review or address her needs for more than five years (still waiting).
Our family repeatedly submitted evidence, including:
Submission 2532
- Occupational therapy reports
- Physiotherapy reports
- Psychotherapy reports
- Rheumatology reports
- Family impact statements
- Formal change of circumstances documentation
- Formal complaints Despite this, requests for increased supports, assistive technology, and home modifications were declined.
My own experience has involved repeated rehabilitation admissions, progressive mobility decline, falls, tribunal proceedings, and years of advocacy simply to secure basic home modifications and safety supports.
Reducing reassessment rights and review mechanisms will not reduce need. It will simply prevent people from accessing supports before they reach crisis point.
Recommendation: Introduce a “no harm” safeguard ensuring no existing participant loses supports or access without independent review rights and demonstrated equivalent replacement supports.
- Unreviewable Ministerial Power to Cut Funding Across Support
Categories
The proposed power to reduce funding across support categories through ministerial instrument is deeply concerning.
For my daughter, social and community participation supports are essential, not optional. They serve as her link to the outside world beyond our family.
My daughter faces considerable social anxiety, sensory sensitivities, chronic pain, and fatigue.
According to therapy reports, structured community supports are crucial for helping her develop emotional regulation, independence, confidence, and safe social interactions.
These supports enable her to gradually acquire the skills and confidence needed for future independent living.
My daughter is 21, and our family has dedicated years to fostering a path toward independence, safety, and inclusion in the community.
Cuts to social participation or capacity-building supports would significantly hinder her progress.
Submission 2532
Recommendation: Any reduction in these supports must be subject to independent review and must occur only when there is clear evidence that replacement supports are operational and accessible.
- Requirement to Exhaust Treatment Options Before Eligibility This proposed reform raises significant ethical and practical concerns.
Advocates have voiced concerns I agree with, warning that forcing individuals to undergo treatments, surgeries, rehabilitation, or invasive procedures just to prove eligibility is very troubling.
For example, my daughter already lives with chronic pain, fatigue, hypermobility-related injuries, psychosocial disability, and sensory overload. Treatments are often complex rather than simple, and they don’t always work. They also can not be seen in isolation.
Some therapies can even cause further trauma, exhaustion, or financial hardship.
Likewise, as an example, my neurological disability requires repeated rehabilitation, ongoing therapies, assistive devices, and environmental modifications.
Despite these efforts, my condition remains permanent and progressive, with clinical verification from a multidisciplinary team confirming my disability, which will continue to decline.
Access to treatment is also highly unequal. The reforms fail to properly consider:
- Financial capacity
- Geographic access
- Waiting lists
- Cultural safety
- Treatment risk
- Participant choice
- Whether treatments are realistically available Recommendation: Remove any requirement that participants must exhaust treatment options before being considered eligible for the NDIS.
Submission 2532
- Functional Capacity Assessments and Whole-of-Person
Assessment
I am concerned about the proposed move away from a holistic assessment method that assesses the whole person. Noting that there were previous concerns around the current process, the ability of delegates to read, digest, understand, and consistently implement plans; however, we cannot move completely away from a model that excludes the whole person.
I have heard, in an advocacy capacity, that concerns are consistently expressed that the proposed functional assessment focuses solely on impairment, neglecting crucial environmental influences, cumulative disability, trauma, poverty, social context, and barriers to access. This approach does not reflect how disability operates in real life.
My daughter’s disability isn’t a single impairment. Her autism, anxiety, chronic pain, hearing difficulties, fatigue, hypermobility, sensory sensitivities, and psychosocial challenges interact to affect her functioning and participation.
Similarly, my disability changes significantly from day to day. My capabilities/function fluctuate depending on fatigue, pain, mobility, neurological symptoms, environmental influences, and fall risk. Static assessments at a single point in time often miss these variations, overlooking behaviours, psychosocial impacts, or accumulated burdens.
Recommendation: To maintain and develop stronger, more comprehensive assessment methods that consider environmental, social, psychological, and functional aspects, including the notion that disability is not static.
- Supports Cut Before Replacement Systems Exist Reducing social and community participation supports before Foundational Supports are in place poses significant risks.
Families like mine already bear heavy informal caregiving burdens.
For years, our family managed support around work, caring duties, therapy sessions, crises, and safety concerns.
Sometimes, systems implicitly expected my wife to reduce her work or leave her job to offer more unpaid support, instead of properly addressing this need through the Scheme. We have been fortunate that, despite my disability, I can work and have the flexibility to provide informal support where the NDIS falls short. However, many in the disability community do not have this option, and the government should not assume there is a safety net of informal support to fill the gaps.
This is not sustainable.
Submission 2532
The removal or reduction of supports does not remove disability-related need. It simply shifts the burden:
- Onto families
- Onto hospitals
- Onto mental health systems
- Onto carers
- Onto (me, us) participants themselves through isolation, deterioration, and crisis Recommendation: Do not reduce community participation or capacity-building supports until the replacement systems are fully operational, accessible, and can clearly meet participant needs. Better still, conduct an internal cost analysis to identify other savings within the NDIS budget line that do not affect the person with disability (look for efficiencies, system savings, savings from unneeded reviews, ART outcomes/reviews, and getting outcome and review decisions right the first time).
Conclusion
My family’s experience demonstrates both the importance of the NDIS and the consequences of systems that fail to respond appropriately to disability.
Even with:
- Professional sector knowledge
- Advocacy capability
- Financial resources
- Private allied health access
- Years of experience navigating the system Our family is still nearly broken under the strain of proving disability and obtaining support.
What happens to families without these resources?
What about participants who can’t afford private assessments?
What happens to individuals who hide their disability, can’t participate, are easily influenced, or live with unpredictable health issues?
What about those already worn down by trauma, poverty, disability, caregiving, and systemic obstacles?
I advocate for reforms that reinforce the NDIS.
I do not support reforms that raise barriers, diminish rights, restrict the definition of disability, or generate more fear and uncertainty for participants and families already facing profound vulnerability.
Submission 2532
Reform should be rooted in:
- Dignity
- Participant safety
- Human rights
- A holistic understanding of individuals
- Genuine co-design involving people with disabilities Yours sincerely,
Jeramy Hope MBA, GAICD, CMgr FIML