Athol and Cecily
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.
‘I just wasn't sure why we had to fight for somebody's basic human rights, like accommodation.’
Cecily’s father, Athol, is in his 60s and has early onset dementia.
’He didn't really have a stable living environment,’ Cecily told the Royal Commission. ‘Because of his undiagnosed dementia he found it very hard to hold down a job.’
By the time doctors diagnosed Athol’s dementia several years ago, he had no assets or income and lived hundreds of kilometres from Cecily.
‘It was a bit of a tricky situation financially for him and for us.’
Cecily moved her father and his partner to her regional town where she helped him apply for the Disability Support Pension and the NDIS.
‘The first time we applied for the NDIS we were denied and they gave the reason of the medical reports weren't sufficient. So we had a neurologist's report that sort of gave the diagnosis of early onset dementia … [We] applied again and were denied again.’
The third application succeeded.
‘I don't know what was different.’
Cecily said her father’s partner, after organising respite care in a nursing home, ‘basically said she couldn't have him back’.
‘So that made dad homeless, effectively. So he stayed with us for a while, but I've got young kids and it was just horrendous trying to care for an elderly father with dementia and having kids and trying to work.’
The NDIA agreed to fund supported independent living (SIL) accommodation and Cecily found a service provider.
‘They had very young staff members not trained in dementia. So there was a couple of times where dad was unsettled and became verbally aggressive.’
One night the support workers called an ambulance to take Athol to hospital.
‘He didn’t have anything wrong with him … The supported independent living company refused to have him back [and] then wouldn't answer my calls any longer. So it was really, really quite stressful.’
Cecily found another SIL provider, but the NDIS slashed Athol’s funding.
‘We got to the point where the funding in the plan ran out. So we put a review in, but again that evidence got knocked back.’
Although Athol couldn’t pay the rent, the SIL provider continued to support him while Cecily appealed to the Administrative Appeals Tribunal.
‘Even through the tribunal, the NDIA representation was hostile. It's stressful enough going into that environment where you're up against lawyers … There is no disability advocacy down here so I just did it myself.’
Cecily said the experience damaged her health.
‘It was full of legal jargon, it was via the telephone which, you know, that's not accessibly okay … There was one point when we were ready to go into the second teleconference and I rang one of my family members and said that I can't do it. You know, “That's it. I'm done, I'm at the lowest point of this journey that I've ever been.” And thankfully they gave me a pep talk and off I went and I did it.’
Cecily won the appeal but is still trying to recover from burnout.
‘Not only has this whole experience shaped dad's health and his decline in his dementia, but it has had tremendous effects on me and my family as well,’ Cecily told the Royal Commission.
‘I'm a fully-functioning able-bodied person. I cannot even imagine what this would be like for someone to have a disability and have to advocate this stuff for themselves.’
Cecily said the process felt like an attempt to remove her father’s human right to accommodation.
‘Basically, a government organisation that is there to provide these supports and had done so for that person previously, for them to then say, “Oh no, we can't provide that now”, you know, it just flabbergasts me.’
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.