Submission 2625 (Participant experience) | External submission

Submission 2625

Submission to the Senate Community Affairs Legislation Committee

My name is Kaiya Eason. I am a 20-year-old university student living with multiple disabling health conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), suspected hypermobile Ehlers-Danlos syndrome, neurological symptoms, chronic pain, severe fatigue, and signiﬁcant mental health conditions. I am writing to express my concerns regarding the proposed NDIS reforms and the potential impact they may have on people living with complex and often poorly understood disabilities.

I understand the importance of ensuring that the NDIS remains sustainable into the future. However, I am concerned that much of the discussion surrounding these reforms focuses heavily on participant numbers and scheme costs while overlooking the realities faced by people who are attempting to access support.

Public discussions often create the impression that too many people are accessing the NDIS or that the scheme is being used by people who do not genuinely require assistance. My experience has been the opposite. Accessing disability support is not easy. People are required to gather extensive medical evidence, attend numerous appointments, obtain specialist reports, repeatedly explain the impact of their disability, and often relive some of the most difficult aspects of their lives in order to be heard.

The process is exhausting. For many people, including myself, navigating the healthcare system while simultaneously trying to prove disability creates a signiﬁcant burden. This burden falls on people who are often already struggling with illness, pain, fatigue, ﬁnancial hardship, and reduced capacity to advocate for themselves.

I am particularly concerned about reforms that place greater emphasis on exhausting all available treatment options before a person can access disability supports. Many disabilities, particularly chronic illnesses and complex medical conditions, do not have straightforward treatments or cures. Some conditions can only be managed rather than resolved. The decision on whether treatment options have been explored are also often given to people who do not understand our conditions. If your medical doctors are telling you in writing that there is nothing left to try, then how can someone without experience in that condition counteract that? What do they know that we don’t?

In my own situation, I have spent years attending specialist appointments, trialling medications, undertaking investigations, and following treatment recommendations. Despite this, I continue to experience substantial functional impairment. My ability to stand, walk, prepare meals, care for myself, attend university, participate in the community, and maintain employment remains signiﬁcantly affected.

People should not be required to wait until every possible treatment has been exhausted before they can access support. Disability support and medical treatment serve different purposes. A person can be actively pursuing treatment while simultaneously requiring assistance with daily living and community participation.

I am also concerned about the increased reliance on functional assessments and standardised methods of measuring disability. Many disabilities ﬂuctuate from day to day. Conditions such as

Submission 2625

POTS, connective tissue disorders, neurological conditions, chronic illness, and mental health conditions can vary signiﬁcantly in severity.

On some days I am able to attend appointments or engage in study. On other days I struggle to shower, prepare food, leave the house safely, or remain upright for extended periods. A brief assessment conducted on a relatively good day may not accurately reﬂect the reality of living with a ﬂuctuating disability. This is speciﬁcally the case for invisible illness too, where there is no external impairment. The assessment would be run by someone who doesn’t know us or our history.

I am concerned that people with episodic or invisible disabilities may be disadvantaged by systems that fail to adequately capture the cumulative impact of their conditions over time.

Another signiﬁcant concern is the narrative that participants are receiving easy access to funding or support. This does not reﬂect the experiences of many people within the disability community.

It is already extremely difficult to gain access to the NDIS. Many applicants are denied despite providing substantial evidence of disability. Many are forced to seek internal reviews and pursue appeals through the Administrative Review Tribunal before ultimately being recognised as eligible.

The fact that so many people are required to progress to review and appeal processes demonstrates that the system is already applying signiﬁcant scrutiny to applications. People are not simply being handed funding. They are often ﬁghting for years to have their disability recognised and their support needs acknowledged.

For those who are already navigating disability, illness, and ﬁnancial hardship, these processes can be overwhelming. The emotional toll of repeatedly having to justify your existence, your limitations, and your need for support should not be underestimated.

I am concerned that further tightening access requirements may result in more people being left without support, not because they do not have disability-related needs, but because they cannot successfully navigate increasingly complex systems.

Without appropriate supports, people risk becoming more dependent on hospitals, emergency departments, mental health services, family members, and crisis systems. Delaying or denying support often increases long-term costs while reducing quality of life.

The NDIS exists to help people with disabilities live with dignity, independence, and inclusion. It should not become so difficult to access that people who genuinely need support are excluded because they cannot overcome additional administrative barriers.

I respectfully ask the Committee to ensure that:

Eligibility decisions remain focused on functional impairment and support needs.
Fluctuating, episodic, and invisible disabilities are appropriately recognised.

Submission 2625

People are not excluded solely because theoretical treatment options remain available.
Real-world barriers to accessing treatment, including cost, wait times, geography, and medical complexity, are considered.
Reforms do not create additional administrative burdens for people who are already managing signiﬁcant disability.
The lived experiences of people with disabilities remain central to any future changes to the scheme.

The NDIS has transformed the lives of many Australians by providing supports that allow people to participate in education, employment, community life, and everyday activities. While sustainability is important, reforms must not come at the expense of fairness, accessibility, and the rights of people with disabilities.

Thank you for considering my submission.