It is hard to find the words to say how much my family has been traumatised by having to beg for the help my sister needs from the NDIS.

My sister has Early Onset Dementia. This has devastated her and our whole family. Despite the fact that this is an actual condition, the NDIS repeatedly told us that because of her relatively young age, they would not fund her care in a residential home. Even though she is nearly 30 years younger than my father, who is in his 90’s and also has dementia, her brain has been damaged much more. My sister’s partner, who is in his 80’s and has his own health problems, got to the stage when he could no longer care for her at home. I used to look after my sister in my home to give him some respite, but it got to the stage when I could no longer do this. My sister would get up twelve or thirteen times during the night and need my attention. I found it terribly hard to give her the care she needed every moment of the day after getting so little sleep. She needed trained carers who worked in shifts, so that they could go home and sleep and recuperate. My sister’s partner and I could not cope with being on duty 24 hours a day. And yet the NDIS said that she was too young for residential care. They ignored the fact that Early Onset Dementia exists. Sadly, even children can be struck down with dementia. The NDIS ignored all the professional assessments by Occupational Therapists and other professionals stating that my sister needed full-time residential care. The NDIS kept asking for more and more reports, all of which said the same thing. It was like bashing one’s head against the proverbial brick wall. They didn’t listen to reason. They didn’t base their decisions on facts.

And all the time, on the radio news, we would hear Mr Shorten saying that the NDIS expenditure needed cutting back, but that people would still get what they needed. And my sister was being denied what she needed. My family and my sister’s partner were in anguish. Everything seemed hopeless.

In fact for a long time, months, we waited for a decision, being told that it was in process, and just to wait. In the end, I contacted my MP, the Hon. Mr Alex Hawke, and he made some enquiries. Then we were told that no decision had been made because they needed some more information - and yet, despite multiple queries about why it was taking so long, this had not been communicated to us. And yet, when this additional information was provided, we had to wait again, and then they wanted another report, and another - so frustrating and incomprehensible that they were not accepting the plain facts that my sister was badly affected by this horrible disease and needed full-time, professional care.

To find out later that Mr Shorten had a $300,000 per year speech writer, in addition to access to two other speechwriters on about half that salary each made it seem all the

Worse that the NDIS was quibbling over funding my sister’s care, which was so badly needed.

It took eleven hard months of writing submissions, getting reports, making phone calls and the prodding of my MP, the Hon. Alex Hawke, for which I am very grateful, to get my sister the care she needed. It should have been provided from the start.

Dealing with the NDIS was a terrible experience and has brought untold anguish to my family. It should not be like this. If there is a clear need for help, this should be provided quickly and easily.