August 12, 2021

The NDIS is making me fear for my life

*This situation was resolved on August 12 2021, around 2pm after a four weeks long battle.

As I sit in my apartment writing this blog, I’m in fear for my life and my future. With help from the NDIS, I was able to fulfill my dream of living in my own apartment. However, due to an NDIS admin error, I am now in a position where I cannot pay my support workers. I rely on NDIS funding to pay support workers who assist me in living my life and having my basic needs met. It has been four weeks since I contacted the NDIS to rectify their error but after repeated calls and visits, I am still left in the dark.

I have a complex disability. I use a wheelchair to get around and a tablet for communication. Without my support workers, I’m physically unable to get out of my bed in the morning. I can’t eat breakfast on my own. I can’t have a shower or get dressed on my own. Nights without support mean I can’t eat dinner, or get back into my bed. Further, my ability to work on my business and engage in social activities are completely compromised.

Image description: Jono in wheelchair, wearing black and white striped T-shirt with city landscape in the background.

Over the past few years, it has become increasingly important to me that I manage my own support workers. Managing my own team means that I know all of my supports will be provided in the way I require and deserve. After receiving support for fifteen years, I finally have a team that I am confident in and extremely happy with.  

On July 20th, I attempted to submit a claim to the NDIS to pay my support workers for their shifts that week. When submitting the claims in the NDIS portal, two of my claims were rejected. When a claim is denied, it usually means that you are out of funding. I knew this couldn’t be the case as I had over $300,000 for the year allocated to core supports, and I was only five months into my plan. Very confused, I looked at my funding breakdown to discover that there was no money left in my core support funding to access. When I investigated further, I noticed there was a huge error; more than half of my core support funding had been allocated as NDIA managed instead of self-managed, which I had never agreed to or requested.

I rang the NDIS immediately and explained the situation to the employee. In response, I was told that a “light touch” plan review would be required to rectify the issue. The employee assured me that it would be faster than a full plan review but couldn’t give me any indication of timing. At this point, I didn’t know if it would be days, weeks or months.

After a week with no contact, I placed a follow up call to see how my case had progressed. Frustratingly, the employee couldn’t see any updates. The following day, I went to an NDIS office in an attempt to get things fast-tracked. I travelled two hours to the NDIS offices in Frankston, as I was familiar with some of the employees and thought they might be more inclined to help me. When I arrived, I spoke to a planner about what had occurred. She said she would get the team leader to contact me as soon as possible. At the time, it felt as though she understood the urgency of my situation.

However, it was no surprise that another week had passed without contact from the NDIS. I was becoming increasingly concerned about my inability to pay my support workers. So, once again, I called the NDIS to follow up. What was supposed to be a short check up call turned into two long hours of back and forth. During this call, I was told that there was no such thing as a “light touch” review – a review I knew I required and had been repeatedly told by the NDIS that I needed.

A few hours after that call, my Mum calls me. She was furious with the NDIS and how my case was being handled. She wanted to go into an NDIS office to demand immediate action. So, I made another two-hour trip to meet her at the Frankston offices. Mum didn’t have much experience dealing with the NDIS, so I knew she wouldn’t get very far with them independently. During my commute, I prepared a detailed script that outlined the mistakes made with my plan, my attempts to resolve the issue and my outstanding payments to my support workers.

Image description: Jono in wheelchair in grey hoodie and exiting an NDIS office.

At the NDIS office, my Mum communicated what I wrote to a planner. This planner assured me that she understood the gravity of my situation and that she could see what needed to be amended. She went on to explain that it would be an easy fix, which I had always known. It was simply a reallocation of funds from one management category to another – but I had repeatedly been given misinformation from the NDIS staff. By the time I left that day, I felt reassured that I would see the reallocation of funds within a few days.

That last visit was eight days ago. And still, no change in my funding. Over the last eight days, I have not been contacted once by the NDIS. As the weeks pass and the NDIS continues to ignore my pleas for help, I fear that my life and my future is at serious risk.

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