NDIA Accountability Project

NDIS participant experience of Ehlers-Danlos Syndrome and Autism supports

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

Submission 1878

Submission to the Senate Inquiry into the NDIS Amendment Bill NDIS (Securing the NDIS for Future Generations ) Bill

Date: 29 May 2026

I am an NDIS participant living with Ehlers-Danlos Syndrome and Autism. I applied for access to the NDIS in July 2021 and was approved in August 2023. The process was extremely difficult and highlighted how exhausting and inaccessible access can be before a person receives the support they need.

Since being approved, I have been working toward putting in place the reasonable and necessary supports that help me move toward my goals and live with more dignity, respect, and stability. I understand that the NDIS needs review and that changes may be needed to ensure it is designed and operating effectively, however, I do not believe that changes should come at the expense of the people the NDIS was designed to protect.

I am particularly concerned about access and automated decision-making, functional capacity assessments, and any changes that would reduce participant choice and control. I strongly support self-management because it allows me to choose supports that are appropriate, informed, and safe for my conditions.

Through self-management, I can access therapies, assistive technology, and support workers who understand my needs and have experience working with people with Ehlers-Danlos Syndrome and Autism. Self-management helps me create a life in which I can work towards living safely, independently, and with choice and control.

If I were forced to use registered providers, this would create and increase risks to my safety, trust, flexibility, continuity of support, and independence. I ask the committee to support amendments to the draft Bill and Rules so that people like me, who self-direct our supports, can continue using our trusted workers. I also ask you to support a specific self-directed registration category, so participant-led arrangements are recognised and visible without forcing us into provider-controlled models.

Since I was approved, I have been able to attend regular therapies appointments, purchase assistive technology and consumables, and engage support workers to help me with my activities of daily living, and transport so I can access the community. For example, I now have a ramp and a rollator, which are invaluable in enabling me to leave the home with my husband or a support worker. These supports make a practical difference to my safety, mobility, and wellbeing.

My disability is complex and affects nearly every part of daily living. My symptoms include joint instability, joint dislocations and subluxations, allergies, fatigue, pain, headaches, digestive issues, dysautonomia, respiratory issues, sensory sensitivities - to name a few. Because of this, I am not independent and I am often isolated. I am unable to drive or use public transport. I need help to get up, get dressed, and prepare for the day. I am currently not working.

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

Submission 1878

The supports I receive are not luxuries. They are what make it possible for me to function, remain safe, and continue working toward a better life. Without them, everything would be much worse. I am working toward finding permanent work, because not being employed has taken a toll not only financially, but also on my mental health and overall wellbeing.

People who do not live with disability may not realise how much planning, effort, and constant decision-making can be involved in getting through an ordinary day. For me, the NDIS is about enabling independence, inclusion, and participation. The practical consequence of this Bill, if it reduces access, increases automation, or weakens self- management, could be that people like me are pushed further into isolation, poorer health, and greater dependence on family members.

I ask the committee to consider my request and recommend that:

  • Human decision-making remains central to NDIS access and support decisions.
  • Automated decision-making is not used in ways that override individual circumstances and lived experience.
  • Self-management is protected, strengthened, and expanded, not reduced or restricted.
  • People continue to be able to access providers and workers with the right expertise for their disability.
  • Any assessment process recognises the complexity, variability, and invisible nature of disabilities such as Ehlers-Danlos Syndrome and Autism.
  • A specific self-directed registration category is created so participant-led arrangements are formally recognised, visible, and supported.
  • Reforms are designed to improve the NDIS without making it harder for participants to access the supports they genuinely need.

The NDIS has already made a meaningful difference to my life. I want to continue building my capacity, my independence, and my connection to the community. I ask that any changes protect my goals rather than placing them further out of reach.

        , Victoria

NDIS participant