Submission to the Inquiry into the NDIS Amendment Bill
Introduction
My name is redacted, and I am a 33-year-old Australian living with hypermobile Ehlers-Danlos syndrome and multiple associated conditions affecting my mobility, daily functioning, and ability to live independently.
I am making this submission as someone currently attempting to access the NDIS while living with significant and progressive disability.
My conditions include cervical instability with neurological risk, multiple organ prolapses, autonomic dysfunction, vascular compression syndromes, chronic pain, fatigue, and ongoing functional decline.
I did not want to apply for the NDIS. My GP and psychologist ultimately encouraged me to do so after it became clear that my condition could no longer be safely managed without additional support.
I am deeply concerned about proposed changes to NDIS eligibility and the definition of permanence, particularly for people living with rare, complex, and multi-system conditions.
Functional Impact and Daily Living
My condition substantially impacts my ability to safely complete everyday activities.
I cannot reliably drive myself safely to appointments, maintain my household without significant symptom exacerbation, sustain employment safely, participate in hobbies, or consistently complete basic daily tasks without physical consequences that can last for days afterward.
Submission 869
For people like me, support is not about convenience. It is about safety, preserving function, preventing further deterioration, and maintaining as much independence as possible.
Without adequate supports, people with severe progressive conditions risk becoming increasingly isolated, medically complex, and unsafe. Delayed access to supports does not prevent disability. It often worsens it.
Early access to physiotherapy, home supports, and appropriate disability assistance is not only critical for quality of life, but may also reduce long-term healthcare costs associated with worsening disability and medical deterioration.
Difficulties Accessing the NDIS
My application included the exact style of evidence the NDIA states it prefers, including a Functional Capacity Assessment with WHODAS scoring, multiple letters confirming permanence, and evidence demonstrating severe functional impairment across 5 of the 6 NDIS domains. Despite this level of impairment, accessing support has been extraordinarily difficult due to the complexity and rarity of my condition.
During my first AAT hearing, I repeatedly asked what gap remained in the evidence and what additional information was needed to satisfy eligibility requirements. Despite asking directly multiple times, I was unable to get a clear answer.
When applicants cannot obtain clear guidance about what is missing or why they are being denied access, the process becomes incredibly difficult to navigate fairly.
Concerns About Stricter Eligibility Criteria
This is why I am deeply concerned about proposals to make NDIS eligibility stricter.
If people with severe, progressive, multi-system disabilities are already struggling to access s `redacted` support under the current system, I fear stricter eligibility criteria will exclude many Australians
Submission 869
with significant disability entirely, particularly those with rare diseases, connective tissue disorders, and complex chronic illnesses that do not fit neatly into rigid diagnostic categories.
Many rare diseases are poorly understood, difficult to diagnose, fluctuate in presentation, and require extensive evidence gathering across multiple specialists. People are often forced to deteriorate significantly before they are considered “disabled enough” to qualify for support.
Worry that tightening access without greater transparency further will leave many people with serious disabilities without the help they need simply because their conditions are rare, misunderstood, difficult to prove, or fluctuate in severity within existing frameworks.
Concerns Regarding the Definition of Permanence
The proposed changes to the definition of permanence are deeply concerning for people living with rare and complex conditions such as mine.
Although there are some highly specialised surgical interventions available internationally for certain complications associated with connective tissue disorders and vascular compressions, these procedures are not cures. At best, they may help manage symptoms, reduce risk, or slow deterioration.
In my case, potential surgical interventions involve extremely expensive overseas procedures costing hundreds of thousands of dollars, with significant risks and no guarantee of restored function or recovery.
Treatments existing “in theory” should not mean a person is excluded from disability support in practice. For many people with rare diseases, available treatments may be:
- financially inaccessible,
- geographically inaccessible,
- medically risky,
- experimental,
- or focused on management rather than cure.
Submission 869
If the definition of permanence changes to require people to pursue every possible treatment option before accessing support, many people with severe disabilities could be left without help for years while their conditions continue to deteriorate.
Disability support should not depend on a person’s capacity to fund inaccessible overseas treatment or endlessly pursue interventions that may only partially improve symptoms.
Access to support during this time is critical to maintaining safety, independence, and quality of life. For many people with progressive and complex disabilities, these supports are the difference between remaining functional within the community and significant further deterioration.
Recommendations
- Review and improve the clarity and consistency of the current NDIS legislation and access process before introducing further restrictions, particularly regarding evidence requirements, interpretation of “gaps” in applications, and decision-making criteria.
- Improve transparency around NDIS access decisions, including rejection rates, internal review outcomes, and AAT overturn rates, to help identify systemic issues and improve decision-making at earlier stages.
- Delay the implementation of further eligibility restrictions until existing issues relating to clarity, consistency, and accessibility within the current system are adequately addressed.
- Address fraud and misuse within the NDIS separately from access eligibility, to avoid creating additional barriers for people with legitimate and significant disabilities.
- Ensure the definition of permanence does not require applicants to exhaust all possible treatments before accessing support, particularly where treatments are inaccessible, high-risk, experimental, or focused on symptom management rather than cure. For many lifelong conditions, including connective tissue disorders, treatment may help manage complications but does not remove the underlying disability.
Kind regards,