Capability and Culture of the NDIA

Submission 144

My name is Cheryl, I live in Geelong, I am 70 years of age.

I have decided to make a submission to the Joint Standing Committee on the NDIS because my experiences with the NDIA have led me to strongly feel that the NDIA is not being fair to their clients. It is my hope that telling my story will mean that in the future, people will have a better experience than I have when they contact the NDIS.

I received a plan when the NDIS first started in the Barwon area, but I was later removed from the NDIS as they stated I did not meet the eligibility criteria because they believe I do not have a disability. They made this decision even though I have suffered a stroke and can not walk or use my right arm. They would not listen when I tried to explain why I needed support from the NDIS. They eventually agreed they would fund me for my psychosocial disability and my intellectual disability, but they refused to give me any funding for my permanent physical disability. I use a wheelchair full time and will never walk again, but they still refused.

Without NDIS support for my physical disability, I had to rely on my husband for all personal care and household support. This was very tiring for him, especially as he lives with an acquired brain injury. Eventually caring for me became too hard for my husband and I had to go into Grace McKellar, Wallace Lodge Nursing Home. Having to go into a nursing home made me feel unworthy, alone and angry. It felt like no one was listening to me. It has made me feel like I cannot trust anyone at the NDIA.

I lived in the nursing home for 19 months. It was a dreadful experience. I felt lonely and ended up depressed and almost suicidal.

When I came home I wanted to apply to the NDIS again for funding for my physical disability, but I was afraid they would not listen to me. I eventually re-applied and with the help of the Rights, Information and Advocacy Centre was able to get a plan that means I get the help and support I need.

My experiences with the NDIA have been confusing and frustrating. It felt like they saw me as “a bit of dirt”. Staff were rude to me and made me feel like just a number. They never explained things to me. They did not care how hard it was to attend the office in person when I did not have a wheelchair, the lady I spoke to said, “that is your problem”.

When I ring the NDIA they make me wait on the line for a very long time. When they do finally answer, mostly they tell me they can not help me and then hang up without giving me any suggestions of what to do next. When I did get to speak to someone they would question everything I said. For example I told one worker that I had been in a wheelchair for 15 years and her response was “I don’t think so”. I was angry about that as it felt like I was being dismissed, and not taken seriously.

I rang the NDIA 8 times asking for a copy of my plan. The staff promised to send it to me, but it never arrived. That made me feel very annoyed.

Things the NDIA could do differently, so people have a better experience –

• Be more honest about that they are doing, explain what the process is, and why they need the information they ask for.
• Visit people in their homes, don’t make people come into the office if it is hard for them to get around.

Capability and Culture of the NDIA

Submission 144

• Don’t just learn about people from reports. Visit people in their homes to see how they live, to understand why the supports they are asking for are important.

• Be polite and respectful when talking to people, make eye contact with them.

• Train employees to better understand what it is like to live with a disability.

• Employ more people with a lived experience of disability.

• Treat people living with a disability fairly and equally. Show them the same respect given to people who do not live with a disability.

• Do not speak down to people living with a disability, as this makes us feel small and that our needs and opinions are unheard and not important.

• Make it easier for people living with a disability to have face-to-face conversations with NDIA staff. This will avoid having to fight to be heard and having to wait for extended periods of time for an appointment. It will also allow for conversations about solutions to our personal circumstances and will mean our needs are met sooner.

I have written this submission to bring my experiences to the NDIA’s attention and to express my concerns about how hard it is for us to cope. I also want to point out how hard it is for our family members and carers to come in and find us struggling emotionally or physically. It is hard for them to watch these struggles lead to depression, behavioural issues, or mental and physical health concerns. If we had our voices heard and plans put in place sooner, there would be strategies that work to keep not only us, but also our family members and carers, in a healthier, happier mental state. This would lead to an environment that brings happiness and ease to daily duties and personal care to be attended to.

I would like to thank everybody who has read my submission. I specifically would like to thank Rachael Thompson from the Rights, Information and Advocacy Centre for understanding, being patient and caring towards me, and her time to advocate on my behalf. I would also like to thank my doctor for understanding me with what I had to say, and for all the tears we shared. After a long time of trial-and-error and fighting to be heard, I am lucky to have been able to gain such a great support network, a team of fantastic carers and support workers that work with my NDIS plan and keep me living at home with my husband longer. I can only hope that my submission really helps others living with a disability that are struggling get the same help and support as I did, just a lot sooner and easier. Thanks to all for taking the time to read my submission, I really appreciate it.