Letter

I would be grateful if you would indulge me and hear out my story; about being disabled; how NDIS is failing me in my situation and many others in theirs, and because I am a solutions based kind of person; a few ideas on how to approach your budgets (or more importantly, budget cuts) that will not negatively effect the tens of thousand of NDIS recipients who are struggling out in the community.

My name is and I am 55 years old. I was born with a defect in my lumbar spine which flared up from time to time as I grew up and went into the workforce. In my late twenties, I had a severe flare up that did not improve after time and eventually a Neurosurgeon advised that I needed a spinal fusion at the L5/S1 level. After many months of rehabilitation, I returned to the workforce but after 5 years, the pain returned, worse than before. Scans were taken and it was discovered that one of the titanium screws holding my vertebrae in place, had broken off in my spine.

After another spinal fusion to replace the faulty one, I endured years of various treatments and procedures, but none of them made a difference to my severe pain levels and I was finally diagnosed with Spondylolisthesis and Degenerative Disc Disease. I was unable to return to work. That was 20 years ago.

In addition to my physical condition, I have been subject to a number of sexual assaults (at ages 7, 17, 24 and 40 years old) that has left me with crippling anxiety from PTSD. I also have been diagnosed with Major Depressive Disorder. I have had numerous hospital stays for my mental health where dozens of drugs were trialed and every avenue for treatment was explored and exhausted. Short periods of improvement were the best of the outcomes but at most they only lasted a few weeks.

So my life right now looks a bit like this… I am in constant chronic pain which is increasing as my spine continues to degenerate. I mobilise with a 4 wheeled walker and struggle with menial tasks such as cooking (which was a great love), personal care and cleaning. I live in a private rental with 5 other people who all have either significant cognitive impairments or suffer from Schizophrenia. I am terribly isolated, have no worth or purpose.

My experience with NDIS since moving back to Perth from Lismore 3 years ago has been pretty frustrating. I was taken advantage of by two Support Coordinators who greatly overcharged for their time whilst not actually doing anything to support me. Both were reported to NDIS but I received no correspondence to follow up with my complaint.

My first approval through NDIS was in support of my physical disability, however there were small allowances in the plan for support of my mental health, probably as part of the depression that often accompanies chronic pain. It was recommended by my mental health Dr’s that I try to get my MDD and PTSD listed as additional disabilities to assist in obtaining the therapy I so badly need and regular support to get me out of my bedroom and into the community.

After the result of my review last May, I am wondering who is actually processing these requests. Based on the sheer lack of compassion, I would not at all be surprised if AI was at the helm. Being told that improving my quality of life is not “good value for money” was a gut punch I didn’t expect to receive from the government department charged with looking after some of the most vulnerable people in our community.

More recently, after several attempts, NDIS approved my MDD and PTSD as a secondary disability. Thinking this was a positive thing I enthusiastically spoke with the NDIA delegate about the types of support that would assist me with my Mental Health. Imagine my distress when my new plan turns up

(mid-June 2026) minus $70,000 from the existing plan that was rolled over less than a month before. Please make this make sense. Is this a lesson for us as participants? “Don’t bother us with your needs or we will make you wish you hadn’t”? We have been advised that for a re-assessment of these changes, further reports must be provided from both a “Specialist OT and Specialist Physiotherapist”. Unfortunately, the funding required for me to get those reports is no longer available in my plan. I am also at a point in my physical disability where I will need a wheelchair soon. This was discussed with the delegate who assured my support worker, support coordinator and myself that funds for the OT report required for the purchase would be included. But they were not. I also discussed the fact that my 4 wheeled walker needed to be replaced. No funds were made available. This kind of discrepancy is throughout every part of my plan.

While I am lucky enough to be able to express myself clearly most of the time (although my ability to express myself concisely has been used against me), a lot of participants are not capable. When I am at my worst, I completely shut down. Communicating my needs is a tricky thing to navigate at the best of times and being told you’re, “Not disabled enough” to get assistance is cruel.

Rather than taking a shot at the easy target (the participants – who are, across the board, not receiving what they need), maybe have a look at your systems and/or procedures or perhaps have a more robust audit system to hold providers accountable.

It took three tries for me to get my second disability approved. At each application, we were advised of different/new reports we needed to provide or update. I’m sure the delegates have plenty to do and the time required for a new delegate reading my entire file 3 times sure seems like a waste. There is so much double handling and handballing it is impossible to keep track.

Another frustrating issue that I often see regards the cost of some providers. I am very lucky to have kind home support workers that go above and beyond in caring for me and advocating for my position, however, is not the norm. There are many other providers that charge 2-3 times the listed drate which essentially means where NDIS provides funding for 3 hours of support, I am only getting one. For example, one of my Exercise Physiologists was charging me over $250 plus mileage which is well above what I understand she should have been charging. Once she submitted her invoice (after a few months and multiple sessions) we fired her, but by that time, my therapy budget had been used up. In another situation, I was paying for a service privately which cost $80 but when I advised I would be claiming through NDIS, the price changed to $150.

This is not unusual; it is what we as participants are now coming to expect as quite likely. Perhaps looking at some of the specialist providers (Physio, Psych, OT) and questioning the significant discrepancies between the set rate and what they are charging.

I am asking you for help. Writing this has taken me a few weeks and has been difficult to complete. I am exhausted. I am overwhelmed. I cannot navigate this system,

and I am not getting any help to improve my quality of life. While I know it would be easier for me to shut myself away and not say anything, I just can’t do that anymore. Both of my conditions are getting worse, and I am scared to even imagine my future.

In summary, my concerns are:

• There is a serious problem in communication between participants and anyone related to NDIS – no compassion, empathy, kindness or really any understanding.

• The rate provided by the NDIS rarely reflects the rate that is being charged by specialist providers; therefore, participants get nowhere near the assistance they need from funding that already barely covers the absolute minimum.
• It seems no one in NDIS and/or associated departments has a full grasp on the complexities of the system they are managing. Every phone call is a new person with a new idea of what the requirements are. How am I supposed to navigate a system that is too difficult for employees to manage?
• Having NDIS refer to the care I need to have some quality of life as “bad value for money” is disgusting.
• The constant undermining and minimizing of my disabilities and related struggles negatively affect my mental state and reinforce my belief that I have no worth and don’t deserve anything.

Suggestions for improvement

• I think having assessments done should be in person and preferably on site. Seeing as the Functional Capacity Reports are apparently not read, come and see how we live and tell us to our faces that funding is too high.
• Make the requirements for the various applications clear and preferably documented so we are not guessing what will be sufficient evidence. This will assist Support Coordinators/participants as well as delegates.
• Consider closer audits by “qualified” providers to ensure the charged and the set rates are similar.

I have often heard politicians saying things like, “NDIS is not for the expense of disabled people to be taken out for a coffee.”\n\nHow easy it is for an able person to go for a coffee, something you wouldn’t think about. For people like me, leaving our home or even our bedroom to go for a coffee is a treat, something to look forward to, and quite possibly the only time we have any interaction with the public. It is also impossible to do without help.\n\nPlease, consider for a moment how that might feel.\n\nI appreciate you taking the time to read my story. If there is anything you can do to help, I would really appreciate it.