Rhiannon Hudson’s story of going through NDIS access declines after several brain surgeries since 2006.

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NDIS in the regional towns of Western Australia. Rhiannon Hudson’s story of going through NDIS access declines after several brain surgeries since 2006.

Rhiannon Hudson, Dowerin (Wheatbelt Western Australia)

My first application for a NDIS request was back in 2020, to which I was declined. Coming from a long history of brain surgeries due to an ongoing brain tumour, which is the root cause of an acquired brain tumour, I made the assumption that with the letters from specialist stating all treatment utilised since 2006, an ABI diagnosis and several admissions into a public hospital would be sufficient. There were no services at this time to support myself in the wheatbelt to put together the Ndis application. The outcome of this application was a decline, which stated specifically “Rhiannon Hudson’s application for NDIS has been declined due to not all treatment options been used and exhausted”. This was absolutely gut wrenching, when I had been through three brain surgeries since 2006, many hospital admissions and significant impairments, and that this just wasn’t enough to access services.

My thoughts at the time, how disabled to I actually need to be? How many more brain surgeries do I need? How much more of my brain do I have to get cut out to be classified as disabled in this state? Who can actually help me apply for the Ndis? All these questions running through my head resulted in a deterioration in my health and giving up on applying for the NDIS. A couple of years later, I was starting to really battle to afford supports to function at a medium level. As I had 10 years’ experience as a Social Worker at the time, a Consumer Advocate in many different fields I decided to take it upon myself to complete training through Richmond Wellbeing remotely on “how to support consumers to apply for the NDIS. “ After the training was completed, I wrote down numerous notes on specific tricks on what the NDIS required for a successful NDIS application. I then contacted the Social Worker at Northam hospital, which I felt a bit funny about. I felt funny because I am a Social Worker (myself) and had been for many years.

I ended up talking to the Social Worker about what I needed for a successful NDIS application, to which I had learnt from the training. The Social Worker was amazing, she was honest and upfront about the challenges regional consumers with a disability are having with regards to applying for NDIS. She was also honest in saying that their service did not have capacity to complete an NDIS themselves, however would do their absolute best to assist myself. I explained to her exactly what wording I needed, and she agreed to allow me to write the application with her support due to my knowledge and training completion. She then assisted me to have OT and speech to complete the assessments required in the supported evidence part of the application.

During this process I did attempt to contact the services that are “ funded to support consumers to apply for NDIS“ to which I was unsuccessful. I then took it upon myself to continue the process, and wanted to put the hard work into it, as emotionally I did not feel I would cope with another decline stating, “you have not exhausted all treatment options”. I then contacted every single hospital I had been through and went through freedom of information to access all my records to evidence all the treatment options I had used and absolutely exhausted since 2006. I then went through my current GP and Psychologist and requested letters to state:

  1. what treatment I had completed
  2. how long I had been accessing treatment
  3. all treatment options had been used and exhausted
  4. my disability impacted on all aspects of my functioning. Thankfully at the end of this process I was successful. What an achievement that felt like. I am so thankful to the Social Worker and allied health team and Northam Hospital for providing this support.

However, I would like to add without my professional knowledge, skills, and expertise what chance did I have at getting onto the NDIS? What chance do thousands of people in the regions have at going through an exhausting and highly challenging process as I explained above? The process proved to me as a consumer we need a service in the regions that’s prime role is to support consumers and families through this intensive process of applying for the NDIS.

Since getting on the NDIS, I found the first assessment by NDIS, “the planning meeting“ to be very inappropriate for what people with disabilities in the regions need. The first planning meeting is on zoom, to which is very challenging due to the lack of people interactivity. This also takes away the human non-verbal communication, especially as many people with disabilities require alternative communication measures over verbal communication online.

Once my planning meeting was over, I was then left in the dark to where I go next. The worker who completed the planning meeting referred me to APM to do the next assessment on putting together all my support. I was then advised by NDIA that they don’t service Dowerin, and again that APM do. I was becoming so exhausted having to go between both services, none of which were able to support me in Dowerin, despite only being 77 km away, which in the regions is not a massive distance. I then decided to stop this fight for services and put down a rental property I had in the metro to access a service remotely in Perth.

All of these experiences having further reinforced to me the complex challenges many consumers and families impacted by disabilities face in the regions. We are talking about vulnerable people, who are the highest risk of so many different issues. Yet we have a lack of support and services despite the regions having the highest rate of risk.

My biggest passion as an individual with a lived experience of a disability in the regions is increasing support for people with disabilities. This includes developing a service that’s prime focus is on assisting people to apply for NDIS. Then supporting people on the NDIS to navigate their services in the remote towns, this includes increasing services and resources available to people with disabilities in the remote towns. (pictures below) after my cranial surgeries and West Australian article 2006 and after graduating in 2012.

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