National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1715

From:

A participant from Brisbane (anonymous)

Introduction

I am an NDIS participant living with myalgic encephalomyelitis (ME). I have been a participant for three years. I am primarily bedridden; when I am able to get out of bed I am wheelchair‑bound. I require continuous support for personal care, mobility and access to therapies and assistive technology. I live in a Brisbane area with limited services available.

Summary of concerns

I strongly oppose changes in the Bill that would reduce funding for support categories, narrow what is considered “reasonable and necessary,” increase reliance on unpaid family carers, impose stricter permanence criteria, force participants to try treatments even when harmful, expand automated decision‑making, and limit choice of plan managers or providers. Combined, these measures would put my safety, dignity and life at serious risk.

How NDIS supports keep me safe and alive

• My NDIS funding covers my personal care (help with showering, toileting, meals), mobility supports, required assistive technology and the therapies that help prevent deterioration.
• These supports enable me to attend medical appointments and essential therapies; they also allow limited social participation with my children and family when I am able.
• Without these funded supports I would be unable to get out of bed, access food or the toilet, and my quality of life would plummet. I would likely require hospitalisation, lose independent living and face severe isolation.

Concrete risks if the Bill’s changes proceed

• Reduced funding or tighter “reasonable and necessary” tests: I would lose essential personal care and therapy hours. This would directly threaten my safety (basic daily living), health (deterioration without therapy) and dignity (inability to shower or access food).
• Greater expectations of family carers: my husband is in the military and frequently away. There is no family network who can safely provide my care. Increasing reliance on unpaid carers is not realistic and would dangerously increase carer burnout and risk to my safety.
• Stricter permanence criteria and requirement to try all appropriate treatments: some recommended treatments are harmful to people with ME. I cannot be forced to undergo treatments that cause deterioration. International guidance (for example, NICE 2021) now advises against graded exercise therapy for ME — forcing such treatments would risk permanent harm.
• Automated decision‑making and new planning processes: my condition is fluctuating and sensory‑sensitive. Automated assessments and short in-person assessments (for example, a single three-hour assessment) cannot capture the complexity or episodic nature of my disability. This increases the risk of unfair or unsafe decisions.
• Changes to plan management and provider choice: when I was moved to agency management unexpectedly I lost all supports because local registered providers were not able to meet my multiple chemical sensitivity protocols and experienced ME therapists were not registered. Agency management left me without personal care and at imminent risk of hospitalisation. Limiting choice to government-endorsed plan managers or coordinators will make it harder to find providers who understand and safely support my needs.

Examples of when NDIS worked and when it failed

• Worked: When my plan allowed access to experienced therapists, regular personal care and appropriate AT, I maintained mobility, avoided deterioration and could spend time with my family.
• Failed: After an abrupt change to agency management, many of my experienced therapists and support workers were no longer available because they were not registered or could not meet my chemical sensitivity needs. I was left without care and at risk of hospitalisation. The agency did not recognise this as a serious safety issue.

What people without disability may not realise

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1715

• NDIS funding is not discretionary “extras.” For many of us it is the difference between surviving safely at home and being hospitalised or entirely housebound.
• We do not have family backups for care in many cases. Suggesting families can fill gaps ignores people with partners in essential work, single participants, and households without local supports.
• Treatments and therapies are not one-size-fits-all. Some historically recommended treatments are now contraindicated; forcing them risks severe harm.

Recommendations (prioritised)

1. Require an independent review mechanism for any major changes to funding, eligibility or planning rules before they are implemented, and require transitional protections for current participants.
2. Guarantee funding for core participation, personal care and therapy supports necessary to prevent deterioration, maintain dignity and enable community access.
3. Limit the use of automated decision-making in eligibility and planning. Any algorithmic tools must be transparent, subject to independent audit, and there must be a clear, timely human review and appeal process.
4. Clarify and strengthen the definition of “reasonable and necessary” to explicitly include episodic and fluctuating conditions, multiple chemical sensitivities and the need for specialist providers, and ensure therapeutic recommendations shown to cause harm cannot be imposed as a condition of access.
5. Strengthen safeguards for unpaid carers, including recognition of reasonable limits on family responsibility and stronger support when carers are unavailable or at risk of burnout.
6. Preserve participant choice over plan managers and support coordinators, or allow for exemptions where specialist knowledge is required to safely support a participant.

Conclusion

The NDIS must protect the most vulnerable participants. For people like me, supports are not optional extras — they are essential medical and daily-living needs that keep us safe, prevent deterioration and allow some connection with family and community. I urge the Committee to reject or substantially amend provisions that reduce funding, narrow “reasonable and necessary,” impose harmful treatment requirements, expand automated decision-making or restrict choice of trusted providers. At minimum, adopt independent review, guarantee funding for core supports, limit algorithmic decisions, and strengthen safeguards for unpaid carers.

Thank you for considering my submission. I ask that my identity remain anonymous in any public documents.