National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1317
To Senate Committee,
I am very concerned at the proposal in Section 1 Part 8 — Tightening meaning of permanence to reduce access where an impairment can be treated.
In 2025, at age 22, I applied to the NDIS for the first time, after developing a severe disability which was not recognised under the NDIA’s list B conditions (permanent but variable) due to a historical lack of awareness and medical interest in the condition.
I had to go through an extremely arduous process to gain access to the NDIS because the NDIA assessors weren’t satisfied I had tried all appropriate treatment options. Immediately following diagnosis, as instructed by my specialist, I began intensive neuro-physiotherapy and CBT psychology treatment weekly. When neuro-physiotherapy failed and led to further deterioration, I started seeing a physiotherapist instead. When that failed, I saw an exercise physiologist. As my condition continued to deteriorate, I began doing speech pathology, O.T., and dietetics, as much as I could afford to, in accordance with what my neurologist suggested. The experts agreed there was no role for medication in terms of treatment.
I spent all my savings on allied health treatments. I couldn’t work or study and I spent as much as I earned from my disability support pension on healthcare therapies (about $20k/year), grateful that I could live with my family at the time. Despite the thousands of dollars spent on healthcare treatments, the NDIS ruled that I did not satisfy the permanency criteria because they weren’t convinced all treatment options had been explored. But, as far as current medical research was concerned, there were no other available and conclusive treatment options that I hadn’t already tried.
After the first year and a half of costly intensive treatments, I could no longer afford frequent appointments. My health continued to deteriorate rapidly, I couldn’t afford the treatments I needed to prevent further deterioration, it became extremely difficult for my carer who had to give up work and live off a carer’s pension, and I became very dependent and isolated. My tax-paying friends were very frustrated that I was being denied the support I obviously needed.
I appealed the NDIA’s decision, providing a new letter from my specialist where he explicitly stated that the condition was permanent and that all appropriate treatment options had been exhausted. The NDIA assessor did not overturn their original decision.
I raised it to the ART tribunal and, after a frustrating twelve months, the NDIA’s lawyers decided that the original evidence I provided did, in fact, meet the treatment and permanency criteria. I received that email this month. Two years following my original NDIS application, I am still waiting for access to the NDIS supports I need to maintain a dignified life.
I am concerned about the proposal to tighten the meaning of permanence to reduce access for potentially treatable conditions because the NDIA is already making it extremely difficult for disabled people to prove that their condition is permanent. I have even heard stories from others in the community who claim that the NDIA wasn’t convinced their limb amputation was permanent, or that they weren’t convinced a family member’s Down Syndrome was permanent. Don’t stories like these prove there is no need to tighten the already air-tight permanency criteria?
It is already extraordinarily difficult to prove condition permanency for conditions that aren’t recognised on the NDIA’s category A and B lists. It is absolutely unnecessary to try to tighten this criteria further as it will significantly harm underrepresented groups of the disabled community.