Dear Senators,

My name is and I am writing to express my deep concern about the proposed changes to the National Disability Insurance Scheme (NDIS). I am writing on behalf of myself and many others with Ehlers-Danlos Syndrome (EDS), a group of genetic disorders affecting collagen, the body’s connective tissue, or “glue” that holds us together. EDS is a perfect example of why the new bill simply won’t work in reality…

Challenges with the Proposed Bill:

The proposed limitations on NDIS support options and classifications would significantly disadvantage people with disabilities like EDS. EDS is a complex and highly variable condition. No two people with EDS experience it the same way, and their support needs can differ greatly. The proposed restrictions on support categories and the “primary disability” classification system would fail to address this essential diversity. Classing participants based on things like our ‘primary disability’ would limit our access to necessary therapies, assistive technology, and supports, for example.

Furthermore, the proposed limitations on funding for co-occurring conditions would be particularly detrimental to people with EDS. EDS often presents with a multitude of secondary issues, and “conditions” caused by EDS. These include autism, adhd, POTS/dysautonomia, spinal disorders and malformations - such as scoliosis, craino-cervical instability and tethered cord syndrome - chiari malformations, nervous system disorders, gastrointestinal disorders - resulting in tube feeding - untreatable chronic fatigue, and untreatable chronic pain. Denying funding for these co-occurring conditions would leave many with EDS struggling to manage their overall health and well-being.

The proposed bill appears to create an arbitrary distinction between “health conditions” and “disabilities.” EDS is a prime example of why this distinction is unhelpful. While there may be limited treatment options available, EDS can be profoundly disabling. It can significantly impact mobility, daily living activities, and employment opportunities. Many with EDS are unable to work due to the severity of their condition, yet the NDIS seems poised to reject them based on a narrow definition of “disability.” Every single accepted condition on the NDIS website is also a health condition. The NDIS is supposed to be based on functionality and reduced quality of life. This distinction disregards the reality of many chronic illnesses, including EDS, which the health system simply cannot manage effectively due to their complexity.

The proposed bill also appears to create an arbitrary distinction between “health conditions” and “disabilities.” EDS is a clear example of why this distinction is unhelpful. While there may be limited treatment options available, EDS can be profoundly disabling, significantly impacting mobility, daily living activities, and employment opportunities.

Societal and government attitudes towards those with disabilities like EDS are biassed (Disability Royal Commission, 2022). EDS patients experience high levels of discrimination, disbelief, misdiagnosis, psychiatrization of symptoms, misogyny and abuse in the medical and disability systems (Hamonet, 2016). ‘Systemic disbelief’ and disregard within a range of institutions (NDIS, healthcare, work, welfare, social services) creates barriers to equality and

Impact on People with Ehlers-Danlos Syndrome (EDS)

Inclusion for people with chronic illness and relates to even fundamental disagreement over whether conditions are biophysical or psychosomatic (Disabled People’s Organisation Chronic Illness Inclusion, 2022). People with disability due to genetic, undiagnosed and rare disease face enormous barriers to achieving optimal management.

Impact on People with EDS:

These changes would have a severe negative impact on the lives of people with disabilities like EDS. Limited access to essential NDIS support could mean increased symptoms, such as pain, decreased mobility, decreased ability to care for oneself, and greater difficulty participating in work, education, and social activities. Financial burdens on families and carers would also likely increase due to the need for additional support. A recent research study looked at the yearly cost of managing a disorder like EDS - an estimated $31,000 AUD per a year.

The Australian EDS community has already shouldered a heavy burden in managing this complex group of disorders. The Australian medical system currently offers little support for EDS, leaving many to navigate complex diagnoses and treatment plans on their own. The proposed NDIS changes threaten to further marginalise this already vulnerable population.

Any proposal to create a limited list of approved NDIS supports raises concerns for people with EDS. EDS, by its very nature, presents with a wide range of needs. Specialised equipment and therapies may be crucial for managing the condition, yet these supports may not be included on a predetermined list. This one-size-fits-all approach could significantly disadvantage people with EDS and force them to forgo essential treatments or find alternative, potentially less effective, options. A more flexible approach that considers the unique needs of each individual with EDS would ensure they have access to the most appropriate support to maximise their independence and quality of life.“

The projected future costs of the NDIS seem deliberately inflated.

People with EDS, for example, wouldn’t necessarily require the same assistive technology year after year. The future estimates also fail to consider the economic benefits of supporting people with disabilities to enter the workforce and contribute taxes.

Furthermore, the government’s focus on cost reduction seems to overlook the true costs of rejecting people with EDS from the NDIS. Without NDIS support, many with EDS would require significantly more healthcare resources, placing a greater burden on the already strained health system. Studies have shown that supporting people with disabilities through programs like the NDIS actually generates significant economic benefits.

The current legal process around NDIS access seems counterproductive when considering cost-effectiveness. Instead of paying significant legal fees to challenge the claims of under-represented disabled people, perhaps resources could be better allocated towards better education for those involved in the assessment process so that many people don’t have to reach this stage. This could potentially save the NDIS money in the long run, while ensuring those who genuinely need support are not unfairly excluded.

Other issues:

currently the “research” supplied by the NDIA on EDS (accessed by our community through a freedom of information application) to its assessors, NDIA staff, plan managers, and support coordinators is incredibly lacking. Ask any patient with EDS, and they can provide you with much more detailed research and information on our disorder, like the information the NDIA has on other conditions. This leaves us at a disadvantage compared to other applicants, where assessors don’t have all the information to make an appropriate decision.

Ehlers-Danlos Syndrome Australia supplied the NDIS with a report with updated information in 2023, and yet changes to the scheme’s internal information on EDS has yet to change.

This report can be found here: https://www.ndisreview.gov.au/sites/default/files/submissions/SUB-R8Z9-000241%20ndis-review-submission clean.pdf

Alternative Solutions:

To ensure the NDIS remains sustainable while meeting the needs of all participants, I urge the Senate to consider alternative solutions. A more person-centred approach that assesses individual needs rather than relying on rigid classifications would be far more effective.

If more funding was made available for education on complex and rare disorders in the medical system, the quality of life of these participants would significantly improve. This means much more — than just telehealth with nurses. Specialised public health clinics for disorders such as EDS, that cover all specialities would save millions. Currently patients visit multiple different clinics in the public system, covering almost every single specialty our system has to offer. If this was consolidated into their own clinics, it would save the government and the health system from this enormous burden.

Improving HEALTH

is a priority for improving quality of life for people with disability and has many positive flow-on effects for our community. This deserves an in-depth discussion around Medicare and Health System priorities to improve the health outcomes of people with disabilities like EDS.

Conclusion:

The proposed NDIS bill changes would have a devastating impact on people with EDS and many other complex disabilities. Limited access to essential NDIS support could mean increased pain, decreased mobility, and greater difficulty participating in work, education, and social activities. Financial burdens on families and carers would also likely increase due to the need for additional support.

I implore the committee to carefully consider the human cost of these changes. I urge you to ensure the NDIS remains a scheme that provides support and opportunity for all people with disabilities, regardless of the specific diagnosis.

Thank you for your time and consideration.

Sincerely,