Emani
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.
‘If I had had the disability support and the right advice when I first became sick with ME, I would never have ended up in aged care. I think I would be pacing, working part-time, living a quiet but much, much richer life.’
Emani, mid-30s, has myalgic encephalomyelitis (ME), chronic fatigue syndrome and lives in the dementia ward of an aged care facility.
She told the Royal Commission that prior to having ME she was a ‘young and healthy woman’ who travelled the world.
Initially doctors advised Emani to exercise and push herself rather than rest. This caused her immense pain and suffering.
‘There was a point when I was living at home … I was in a completely dark room. I was lying on my bed. I couldn’t talk to people. I couldn’t hold a conversation.’
Emani needed 24/7 support and her mum became ‘absolutely exhausted’ looking after her. She applied for disability support from the state government but wasn’t eligible because they deemed she ‘didn’t have a disability’ but a ‘health condition’. Emani considered suicide.
Out of options, she moved into aged care accommodation. The facility has provided the nursing support she needs and ‘have done their best’. At times though, it’s been ‘horrendous in terms of trying to manage living with sensitivities and ME and trying to stay safe’.
When the NDIS was established, Emani applied for support but they also told her she had a medical condition, not a disability. Eventually she was able to convince them her disability was neurological and she received funding. However, the NDIA rejected her application for a wheelchair saying she couldn’t ‘demonstrate she could use it’.
The NDIA has threatened to ‘kick her off’ several times. One NDIA planner told her, ‘You’ve got chronic fatigue syndrome, you don’t deserve our help with that.’ They question whether her ME is curable despite her medical specialists saying it’s not. Recently, they told her she needed to undergo specific treatment such as graduated exercise therapy and cognitive behaviour therapy. Emani said her medical specialists are against these therapies and believe they cause more harm. She believes NDIS medical treatment guidelines need to be updated.
Emani has applied for specialist disability accommodation (SDA) so she can move out of aged care. It took nine months to have the first planning meeting and the outcome was her having to pay ‘more money’ for ‘more reports’.
After almost three years, the SDA funding has been approved. She intends to custom-build a home suitable for her needs.
In the last few years Emani’s been ‘using science to rest and recover and not to push too hard’. She is able to pace herself and her quality of life has improved.
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.