NDIS submission

We live in rural Australia (Far South Coast NSW). My late husband had Multiple System Atrophy (MSA) a rare degenerative progressive condition impacting all autonomic body functions, including motor control (including tremors), communication skills, the ability to eat and drink safely. He was diagnosed in November 2019 with MSA and we started the process of applying for the NDIS in early December 2019.

After we submitted the application we received a request from the NDIA to provide more information in the attached form (it was not attached). I rang the NDIA to request the form and was told to just write a letter containing all the information we had just talked about. The information requested was identical to the information already previously provided to the NDIA. More delays and my husband’s 65th birthday fast approaching causing concerns to us. But we made it on time. NDIS planning process For the planning meeting we were advised that we shouldn’t worry too much about it, it would just be an informal chat, despite the written information advising that we should prepare a few written documents for the meeting. All the information we prepared was ignored at the meeting with the planner. The planner entered what was discussed into his laptop but there were a few omissions/mistakes in his report (eg. in the plan there was an item for a builder to provide a quote about home modification but no items for the modification itself). The draft plan was not given to us to check for any mistakes before it was submitted to the NDIA. The planning process is not transparent, it is not clear how dollar figures are allocated to the activities/goals etc. It just felt that our information went into a black hole and we had to be thankful for whatever money we received. The planner also advised us, that my husband could choose to move to the age care system once he turns 65. Given the severity of this disability and progressive nature of the condition this was very bad advice as my husband would have missed out on critical support he needed to receive in a timely matter.

All our requests had to be submitted in writing to the NDIA (which is fair enough). However, the NDIA had not hesitations to just ring up and then try to “negotiate” our requests to a lower dollar figure. In one of those phone calls the NDIA employee suggested a dollar amount for transport discussing with my husband (despite the NDIA being advised that I was the one dealing with all the “paperwork”) which was lower than the amount in the current plan (after we had requested an increase). There is no public transport available in rural NSW and we needed a wheelchair accessible taxi to go to town (theoretical for social events too, but it turned out that the NDIS amount just covered one return trip a week to town eg for doctor’s appointments). The NDIA employee also seemed to be unaware what a wheelchair taxi is and that someone in a power wheelchair, who is not able to transfer, can’t use regular transport. Better training needs to be provided to the employees if they really have such a lack of knowledge of the disabilities. Record keeping issues and mistakes in plans Documents to the NDIA submitted seemed to disappear or were being displaced. Just by chance in one of those phone calls from NDIA they asked if there was anything else after discussing one issue. I asked about the home modification application, but apparently there was no record of our application (despite us having received confirmation that the application had been received). This meant that in the middle of winter my husband had to drive in his wheelchair to one of our accessible cottages for a shower and that went on for more than two months as he could not get into a shower in our house. This left him very vulnerable to pneumonia.

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Every time there is was a change in circumstances a new plan was required. We submitted reports from the OT, speech pathologist, palliative care team, the community nurses and our service provider. The OT report was very detailed in what was required for my husband’s support in terms of carer hours, services and equipment. The planning meeting over the phone seemed to go well. We then received a plan which was not even updated in the personal profile section, had wrong information in it (for example that we had requested self-management, how many hours of home care support we were currently receiving etc) and none of the submitted reports had been considered. Despite significantly higher needs for support the funding provided in the new NDIS plan was lower than the previous plan.

I contacted the NDIA regarding the mistakes and issues with the plan and the inadequate funding. It was a lengthy conversation which seemed to be going well and the employee appeared to be noting down all the mistakes I described. I was told that the corrected information would be reviewed and we would be contacted by phone. No call was received. Weeks later my husband received a letter that an unauthorised request for a review had be done by his wife and therefore the NDIA would not pursue this request any further. If this was correct, why would the employee have conducted the review on the phone with me? I had provided all required ID to act on behalf of my husband at the first planning meeting and yet again the NDIA had “misplaced” all those documents. More paperwork to fill out and more delays.

We eventually received the outcome of the internal review which again ignored all the submitted reports and no corrections were made to the mistakes in the plan and the inadequate funding. The advice was that we could go to the AAT if we did not agree with the outcome. In a further phone call to the NDIA, in which I mentioned that the plan had numerous mistakes and had not considered any of the reports we had submitted, the advice again was that we should go to the AAT. This was clearly NDIA’s preference and we had no other option to challenge this plan which we had pointed out on numerous occasions that it was wrong.

There needs to be a process in place where mistakes made by the NDIA should be corrected by the agency and not being referred to the AAT. There also needs to be some accountability for the many cases ending up at the AAT, as this is a lengthy, expensive and stressful process particularly for people with a progressive condition. There could be a performance indicator for how many cases are being referred to the AAT, how many are people taking their case to the AAT (or simply give up) and a high number should indicate that the Agency is failing. As I mentioned previously we live in rural NSW (5 hours from Sydney away), all the advocacy groups I contacted, could not help due to high demand on them (or not covering our region). We don’t have access to a lawyer, nor the money or time to do this (my husband would not have been able to travel so far, nor would it been affordable to get a wheelchair taxi and I could not leave him on his own). This is clearly not a workable situation. This added to our already stressful situation and it didn’t help reading of stories in the news of other NDIS participants experiencing similar stressful situations in which essential funding was not provided anymore.

Our service provider then decided to put in for a change in circumstances (and we included again all the relevant updated reports). We were getting so low in funding that I was considering cutting back on the care my husband was receiving just to make the funding stretch to the end of the plan (we required two carers as my husband needed a lifter to get him in and out of bed/wheelchair and in the bathroom). Our service provider was prepared to carry to cost of the carers in case we were running out of money until we received new funding. However we had two other service providers

who provided about half of my husband’s carers and they could not afford to do this. It should not be up to service providers to carry the burden of the mistakes made by the NDIA. I was already in a very stressful situation caring for my husband 24/7 and now had the additional worry that I would not have enough carers to support me. This was not my understanding of what the NDIS was

designed to do.

We had another over the phone planning meeting about the change in circumstances application, which included the OT and the service provider too. This time the advice was that it had to go to the expert panel in the NDIA for review. More delays! Eventually (9 months after our first correction request) received a new plan which had taken all the reports into consideration and provided adequate funding for the level of care which was needed. It was just in time before we would have run out of funding and would have lost the majority of our carers (and once you lose your carers they are lost forever as there is such a shortage of carers in regional NSW). I’m not sure if anyone in the NDIA realised on how stressful those processes and delays are for people who already are in very difficult circumstances.

NDIA’s decisions need to be more transparent, there needs to be a proper process of review (and for fixing mistakes) and an external independent body such as an ombudsman for people to go to for complains. The AAT is clearly not the appropriate process, just a massive waste of money (all the money being paid for NDIA lawyers which could go to the participants instead). The whole process disempowers participants and puts people under enormous stress. The NDIA systems need to be overhauled to have basic public service principles and systems in place to ensure transparency, accountability including record keeping (make sure files don’t get “lost”).

The system also need to make sure that there are case managers (or at least accurate files), so when we contact the NDIA we don’t just talk to someone answering the phone without any knowledge of the case. Employees in the NDIA need to have appropriate training so they have at least a basic knowledge of the disability sector. There should also be employees with experience/training to look after participants in rural and regional areas. The people we dealt with seemed to be Sydney focused without any knowledge or appreciation how different the situation is in rural/regional areas. The presentation of the budget information is also very difficult to understand, it should be easy to provide information of how much was allocated in the plan, and how much is spent and still available. Another problem with the NDIA is that equipment needs to be bought new (which makes it very expensive) or recently there is an emphasis on renting (which is not always the cheaper options). Every time there is new equipment required an OT report is required which might be fair enough for very expensive equipment but it is also very costly and eats into your plan. Quite often the recommendations then also get assessed by an NDIA’s expert panel which is a waste of time and money (doing the work of the OT again without any personal knowledge of the person concerned). If the OTs are accredited with the NDIS the OT’s judgment should be trusted (and maybe every now and then there could be an audit of the OTs if it is deemed to be necessary). Again living in rural NSW choice is very limited and we have to rely on people living in the region.

I’m still very grateful for the NDIS but it needs a lot of improvement. I think the design and intention were good but then the implementation got worse and worse (and it appeared to us that money saving for the government was the primary goal). Without the NDIS my late husband would not have been able to live and being cared for at home. He would have ended up in an age care facility and he would have most likely died a lot sooner (given the staff shortages there and Covid outbreaks). However, the systems need to be significantly reformed and improved to make sure that the focus is on supporting people with disabilities and their carers. It should not be a constant struggle for participants to receive the necessary support.

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