National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1143
Dear Committee Members,
I am writing to express my deep concern regarding the proposed changes to the NDIS under the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am an NDIS participant with CPTSD as my primary disability and ME/CFS as a secondary condition. Although these conditions are listed separately, in reality they are deeply interconnected and significantly impact my daily functioning, capacity, regulation, energy, cognition, ability to leave the house, and ability to manage basic activities of daily living.
I am extremely concerned about the proposed reductions to social and community participation funding and the broader shift toward functional capacity reassessment models.
A large proportion of my Core funding is technically allocated under social and community participation categories. However, in practice, the majority of how I use this funding is not for social outings or recreational participation. I am largely housebound and frequently too unwell even to attend appointments. Most of my supports are actually being used to assist me with basic daily functioning, maintaining my health, managing my home environment, attending essential appointments, reducing isolation, and preventing further deterioration.
My fear is that future reassessments may focus heavily on unused or underspent “community participation” allocations without properly understanding how those supports are actually being used in practice by participants with complex and fluctuating disabilities.
People with psychosocial disabilities and ME/CFS are particularly vulnerable under these proposed reforms because our disabilities are often poorly understood, fluctuate, and may not present in obvious or visible ways during assessments.
I am also deeply concerned about proposals suggesting that functional capacity will be assessed without considering assistive supports, environmental modifications, or the real-world impact of fluctuating conditions and cumulative exertion. For people with ME/CFS, functioning cannot be accurately understood through isolated tasks performed once or briefly. I may technically be able to perform a task one time, but doing so may leave me unable to complete other essential activities or may trigger significant deterioration afterwards. Assessments that fail to account for cumulative impact, post-exertional worsening, sensory overload, trauma responses, and fluctuating capacity risk profoundly misrepresenting people’s actual support needs.
I am additionally concerned about increasing restrictions around supports that fall outside narrow or traditional interpretations of disability. Environmental sensitivities, sensory impacts, air quality issues, and home environmental factors can significantly worsen both physical and psychological disability symptoms and functioning, yet participants are increasingly being told these are “ordinary household expenses” or outside the responsibility of the NDIS.
The proposed reforms also risk undermining participant safety and trust by reducing flexibility and increasing pressure toward provider-led or more standardised systems. For trauma survivors, relational safety, trust, predictability, and choice around support workers are not preferences — they are essential components of safe and effective support.
I am extremely anxious about the impact these changes may have on my future supports, stability, and ability to continue functioning within the community at all.
I strongly urge the Government to: • Protect funding for participants with fluctuating, complex, and largely invisible disabilities • Ensure functional assessments properly account for cumulative impairment, fluctuating capacity, and post-exertional deterioration • Preserve genuine participant choice and flexibility • Recognise that “community participation” supports are often essential daily living supports in practice • Protect trauma-informed and relationally safe support arrangements
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1143
• Ensure psychosocial disability and ME/CFS are not disadvantaged within future reassessment frameworks • Properly consult with people with disability before implementing major legislative changes • Preserve meaningful review and appeal rights for participants
The NDIS was originally intended to support dignity, inclusion, autonomy, and participation. I am deeply concerned these reforms risk moving away from those principles and creating further fear, instability, and harm for vulnerable participants.
Thank you for considering my submission.
Kind regards,