Capability and Culture of the NDIA

Submission 35

I am a current NDIS participant who has seen firsthand how many issues there are with the NDIS.

The biggest problem I have faced is the extremely restricted list of accepted disabilities. I have six diagnoses in total and am physically disabled to the point of being on Disability Support Pension. Yet, according to the NDIS I have no physical disabilities at all. Upon applying to the NDIS I discovered that they would only accept my diagnosis of level one autism spectrum disorder. After appealing this decision, I was informed that my multiple physical disabilities were considered “health conditions” and were therefore not eligible for NDIS funding. This made no sense to me as I have personally spoken with others who have the exact same diagnosis and level of functioning as me and were approved for NDIS funding, meanwhile I was rejected. Highlighting this idiocy is the fact that I have all of the symptoms of MS, which is an approved disability for NDIS, yet am not eligible as those symptoms are caused by four conditions rather than one. I was also advised upon appeal that I should get a functional capacity assessment done as this may change their minds. However, i had already submitted a full functional capacity assessment that i paid hundreds of dollars for and clearly showed my level of disability. So i did not at all believe that a second assessment would change anything.

This decision has had a huge impact on my ability to live independently as i receive funding solely for things related to my autism, which in being level one has minimal effect on my ability to live independently. As a result, i have had to spend over $4000 out of pocket on mobility aids for my physical disabilities while on measly welfare payments. I also get no assistance with physiotherapy, which is essential to my disabilities not getting worse as the documents i submitted to the ndis clearly showed. I did however get funding for occupational therapy solely for matters related to my autism, as stated in my plan, which i did not ask for and do not need so have not used at all. The most worrying part is that i get no assistance with making my housing accessible. Given the current rental crisis, there are no private rentals i can live in. The few that are affordable to someone on Disability Support Pension are not accessible, and since i get no funding towards making housing accessible i simply cannot live there. I constantly stress about becoming homeless as the student accommodation i live in may dramatically increase in price following the end of the NRAS.

Asides from the numerous issues related to getting approved for the NDIS, there are several problems related to implementing the funding one receives. Firstly, i requested a support coordinator as i struggle with searching for appropriate specialists due to my disabilities. I was rejected and told i “am not disabled enough to need one”. It is well known by now that the ndis loves to cut people’s unused funding during plan reviews. This is an incredibly flawed practice as it fails to take into account the mammoth wait times present for many specialists and treatments. In my case, i received my plan in May but was relocating states in June so was unable to use my funding immediately. Once i was settled in my new area, two months had already passed. I was not able to find a support worker until August, meaning i had missed out on three months of my plan. Trying to find a psychologist was even harder. There is already a very high demand for general psychologists, that demand is even higher for psychologists equipped to deal with the complex issues surrounding autism spectrum disorder. I was not able to get my first appointment with a suitable psychologist until the end of November, and two months later i moved cities again. After moving in January, i had to take more time to find a new support worker and decided to go with a general therapist rather

Capability and Culture of the NDIA

Submission 35

than a psychologist due to the long wait times. Even then, I did not start using my funding until the end of February. This means I had missed over eight months of my psychology funding, which will inevitably be cut when my plan is reviewed next year. I have heard this same issue time and time again from disabled people and their parents. It is something that has made me seriously consider whether it is worth continuing with the NDIS. Given my funding will be significantly cut and they refuse to give me funding for the things I actually need, it may not be worth the stress and trauma of having your disabilities scrutinised by people who don’t know anything about you.

One last issue I want to address is the funding given for support workers. I was allocated funding for both housework/domestic tasks and for accessing the community. However, The funding used for accessing the community cannot be put towards things like entrance fees or meals. This means that if I wanted to go to the zoo with my support worker, I would have to pay double entrance fees at the very least. This is something I simply cannot afford with my pension. The things around me that are accessible to someone with my physical disabilities all cost money, which means I have been unable to use any of this funding as I do not have the money to pay for my support worker. This is yet another decision that baffles me, a large portion of those on NDIS have little to no money. So why would you require us to pay double the amount to go somewhere and use our funding? I’d imagine the NDIS will use the excuse that the carers card exists, but it is extremely difficult to get this card and a lot of us are not eligible for it.

It is clear that the current version of the NDIS in no way aims to actually help disabled people. There are innumerable barriers put in place to prevent the majority of us from getting the funding we need. If we are lucky enough to get funding, trying to use it often causes more stress than it is worth. I sincerely hope that sharing my story leads in some way to the NDIS improving. I genuinely do not think I will be continuing with the NDIS next year if it remains the way it currently is as the stress of going through a plan review is not worth the funding I receive.