National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill
2026
Submission to the Senate Community Affairs Legislation Committee
- Introduction My name is and I am the parent and support person for a young woman living with
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia
Syndrome (POTS), and Long COVID. These conditions profoundly limit her ability to function, participate in daily life, and maintain independence.
I welcome the opportunity to comment on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. While I support the goal of ensuring the NDIS remains sustainable, I am deeply concerned that several elements of the Bill will unintentionally exclude or disadvantage people with complex, fluctuating, energy-limited disabilities.
This submission focuses on:
How the Bill’s proposed changes will affect people with ME/CFS, POTS and Long COVID
Why the Bill’s assumptions about treatment, permanence and functional capacity do not align with current scientific evidence
Practical recommendations to ensure the NDIS remains accessible, fair and safe.
- Lived Experience: Why This Matters My daughter’s illness has caused her to go from studying science at University of Melbourne, singing and dancing in theatre productions & playing netball, to being bedbound. However, her disability is largely invisible. On a “good” day she may appear conversational or able to complete a small task. What is not visible is the post-exertional malaise (PEM) that follows even minor activity — a delayed crash that can last hours, days or weeks.
Her symptoms include:
Severe exhaustion and muscle weakness
Cognitive dysfunction (“brain fog”)
Orthostatic intolerance and tachycardia
Sensory overload
Severe, full body pain
Inability to stand, shower, or prepare food
Dramatic worsening after exertion.
Her functional capacity is not stable, not predictable, and not accurately assessed in a single appointment. She requires:
Assistance with daily living (everything except going to the toilet)
Support to manage pacing
Telehealth access (she isn’t well enough to get to a clinic)
Environmental and sensory modifications
Energy-conserving equipment, and
Consistent routines to avoid deterioration.
These supports are not optional. They are essential to prevent medical decline.
The Bill, as drafted, does not reflect the lived reality of people with fluctuating, energy-limited conditions.
- Key Concerns with the Bill 3.1 “All appropriate treatment” requirement
The Bill requires participants to demonstrate they have undertaken “all appropriate treatment” before being considered eligible.
For ME/CFS, POTS and Long COVID, this requirement is clinically inappropriate because:
There is no cure and no universally effective treatment
Many proposed treatments are ineffective or harmful (our daughter spent $10,000 to be treated by a pain specialist, who made her condition far worse for months)
Patients are often pressured into unsafe interventions
The scientific community has not agreed on a standard treatment pathway, and
People may be penalised for declining harmful or experimental treatments.
This requirement creates an impossible evidentiary burden for people with complex chronic illness.
3.2 Functional capacity definition does not reflect fluctuating disability
The Bill introduces a new definition of functional capacity that relies heavily on observable performance.
This approach is incompatible with conditions characterised by:
PEM (Post-exertional malaise)
Delayed crashes
Orthostatic intolerance
Cognitive dysfunction; and/or
Hour-to-hour variability.
A single assessment cannot capture the true functional limitations of people with ME/CFS or Long COVID. This risks systematic under-assessment and exclusion.
3.3 “Directly related” support requirement risks excluding essential supports
The Bill tightens the requirement that supports must be “directly related” to the impairment.
For people with ME/CFS, POTS and Long COVID, essential supports include:
Pacing support
Cognitive support
Home assistance
Sensory-friendly environments
Telehealth
Assistive technology for energy conservation
These supports prevent deterioration but may be rejected as “not directly related” under the new rules.
3.4 Ministerial power to reduce funding for categories of supports
The Bill allows the Minister to reduce funding for “specified groups of supports”.
This creates instability for people who rely on:
Support coordination
Allied health
Telehealth
Home assistance
These supports are already difficult to access for ME/CFS and Long COVID.
3.5 Increased administrative burden
People with Disability Australia (PWDA) has highlighted that the Bill increases:
Evidence requirements
Plan renewal complexity, and
Scrutiny of supports.
People with cognitive dysfunction and severe fatigue cannot navigate complex bureaucratic processes. This risks functional exclusion from the Scheme.
- How These Issues Can Be Addressed The Committee has the opportunity to strengthen the Bill by ensuring it does not unintentionally exclude people with complex chronic illness.
4.1 Amend the “all appropriate treatment” requirement
Replace with:
Recognition of conditions with no cure
Acceptance of specialist reports
Protection against coercive or harmful treatments
A requirement that treatment expectations align with current scientific evidence.
4.2 Ensure functional assessments reflect fluctuating and energy-limited conditions
This could include:
Multi-day or longitudinal assessments
Recognition of post-exertional malaise
Acceptance of lived-experience evidence, and/or
Use of specialist reports rather than single-day observations.
4.3 Protect access to essential supports
The Bill should explicitly recognise that supports such as pacing, sensory control, telehealth and energy-conserving equipment are medically necessary for people with ME/CFS and Long COVID.
4.4 Limit ministerial power to reduce support categories
Introduce safeguards requiring:
Consultation with disability organisations
Impact assessments
Transparency and parliamentary oversight
4.5 Require co-design with disability communities
Emerge Australia, People with Disability Australia (PWDA), Women with Disabilities Australia
(WWDA), Women with Disabilities Victoria, and other relevant organisations should be formally included in the development of rules and guidelines.
- Conclusion My daughters life has been profoundly altered by ME/CFS, POTS and Long COVID. She deserves a system that recognises her disability, supports her needs, and does not punish her for having a condition that medicine cannot yet cure.
The Bill, as drafted, risks excluding or undermining support for people like her — people whose disabilities are real, severe, and already poorly understood.
I urge the Committee to amend the Bill to ensure it remains fair, evidence-based and accessible to all Australians with disability.