Keely and Freda
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Freda is in her 70s and is mum to Keely, who has Down syndrome.
‘She … functioned fairly well until the age of about 19 and then suddenly … she lost of a lot of skills and really went downhill,’ Freda told the Royal Commission.
Doctors diagnosed Keely with dementia.
‘It's just been one horror story. But to set the scene prior to the NDIS when [Keely] really had become very difficult living at home with me – I couldn't look after her anymore.’
Keely entered a group home, which Freda described as ‘a disaster’.
‘It was a staff ratio of one-to-four … the other three ladies were functioning an awful lot better than [Keely] so their families wanted to gear the funding towards what suited the three of them. We were always the odd one out.’
When Keely became aggressive and wouldn’t let staff wash her or brush her teeth, Freda and her husband tried to get her out of the group home.
‘Along comes the ray of hope, the NDIS. This is the first ray of hope of actually being able to get her out of that group situation.’
The NDIS planner, however, was ‘hostile’ and insisted Keely didn’t need one-to-one support. Freda said the NDIS funded tens of thousands of dollars on reports that supported one-to-one care, but they ‘seemed to make no difference’.
‘It was just so evident that there was no way [Keely] could live with anyone … She would be screaming. It was just dreadful.’
Freda took the reports to the Administrative Appeals Tribunal (AAT).
‘[The] NDIS … put up a corporate lawyer against you. The man was absolutely implacable … Wanted an update report and the AAT member said to him, “They're hardly out of date.” Nevertheless, “We want updates. We want more information.” … I hate to think how much money was spent on this lawyer alone. Far more than would have been needed in [Keely's] plan.’
Freda said Keely in the meantime ‘wasn’t safe’ in the group home, and while the NDIS fought to keep her there, Freda and her husband ‘spent their last dollar’ buying a cottage and moving her out.
‘Because we're in our 70s absolutely no-one would give us a loan … I'd done some fundraising within the family and a couple of business people I know … and it's turned out to be the best thing we ever did.’
They built a garden so Keely ‘could walk on a path and enjoy the fragrances and the birds’, keeping her mobile and out of a wheelchair.
Recently Freda found a psychiatrist who re-diagnosed Keely’s dementia as Down syndrome regression disorder and changed her medication so she’s ‘more calm’.
‘I've had 40 years of this,’ Freda told the Royal Commission. ‘You have no friends left. They drop by the wayside long ago … peers are all off holidaying or enjoying long lunches. I haven't been able to do that. I'm so tired of pushing myself to breaking point by evening, every evening.’
Freda recently had heart surgery and said more than two years of fighting the NDIS has ‘just about run [her] into the ground’.
‘I'm saying to myself, “How much more does this government want from me?” We have put our last dollar into trying to be independent and not use government resources. We've housed our family member with great difficulty … I just find that at the moment I've got nothing left.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.