Hadleigh and Tarana
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.
Hadleigh died this year, having lived with ‘severe intellectual disability’ for five decades.
Her sister, Tarana, told the Royal Commission Hadleigh had the cognitive capacity of a two-year-old but was never diagnosed.
‘We’re talking about a person that could do nothing for herself. She couldn’t feed herself, wash herself, get up from the chair, do anything. So totally dependent on somebody being there for any of her actions to happen.’
As a child, Hadleigh’s parents didn’t want her to go into a nursing home or an institution.
‘So they kept her home. She always lived with family members,’ Tarana said.
Disability services organised day care for her five days a week.
‘And it was basically a child-minding centre. That’s all really they were back then.’
Hadleigh had a lot of accidents at the centre.
‘And finally, about four years ago, she came to me full-time,’ Tarana said. ‘And then that’s when the struggle sort of hit.’
By that stage, Hadleigh’s condition was getting worse. Doctors thought she may have Rett syndrome, which causes a progressive loss of motor skills and language.
‘She'd always been regressing down. Specialists and everyone said her condition will never improve. It will always deteriorate … And it did.’
Tarana helped get Hadleigh her first NDIS plan, which fell way short of her needs. The NDIS cut her existing funding for therapies and respite hours, despite ‘medical evidence she needed 24-hour care’.
This meant Tarana had to look after her through the night and Hadleigh could never get out of the house.
‘I wanted her to have one-on-one [support] because my belief is that’s what she should have had. More hours for a carer basically, to take her to what she would like to do, like to go swimming … to a music group, to go out.’
‘The NDIS talk about having a normal life. I hate that word because everyone’s normal is so different. Well to me, a normal life is that my sister doesn’t have to spend 24 hours with me.’
NDIS planners never met with Hadleigh in person.
‘They have people there that, I believe, have no idea about disability. You’re relying on somebody on the other end of that phone who is magical because, basically, their perception comes … by forming an image in their own mind … In the three years she was in the NDIS, we had six plans. So that shows you how wrong they got it every time.’
Tarana fought for a review of Hadleigh’s plan, which helped her get a better day program and support workers.
‘It wasn’t near what she needed, but the group of people that we got in the end to be her carers were fantastic. They loved her and she loved them. It’s just what it took with the NDIS to be able to get [Hadleigh] to have an actual life.’
For the last year of her life, Hadleigh was able to go on day trips with support workers.
‘Her favourite thing in the world was going out in the car … Any time that she could get out and not be stuck in four walls, then she was the happiest she could be … So that’s what sort of we got to in the end.’
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.