Jody and Nic
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.
‘There’s no getting over that the end of [Jody]’s life was pretty bad. And it really highlighted to us some of the barriers that people ageing with cerebral palsy face particularly in the healthcare system, but also in the funding of support needs.’
Jody was born in the mid-1960s with cerebral palsy. Her brother Nic told the Royal Commission that Jody was ‘an amazing human being’ and lived a ‘passionate, engaged life’. She was independent and travelled into the city daily in a motorised wheelchair.
At 28, Jody had a serious accident. Her wheelchair toppled off a train station platform. She fractured her leg and lost two front teeth. Doctors immediately treated her leg, but not her teeth.
Jody had an ineffective bite and facial disfiguration. Nic said specialists decided it wasn’t practical to fit a dental plate because of Jody’s disability. No-one investigated an alternative.
Because of her daily travel, Jody’s wheelchair often broke down.
One time, Jody’s chair stopped while she was crossing the train tracks. Another time it broke down in the middle of a busy intersection. Luckily members of the public helped her get to safety.
Each time Jody’s chair broke down, a support worker had to help arrange its repair and Jody had to stay home.
Jody was fiercely independent and tried to find a way to fund a new wheelchair. At the time, state government disability services funded equipment. She tried to negotiate a solution but they were inflexible and refused to address the issue.
‘She was actually told by the funding people that she needed to be more careful with the use of her chair because she was getting too many breakdowns, which just is really not acceptable,’ Nic said.
In her mid-40s Jody started to gain a large amount of weight. She asked disability services to fund additional support worker hours so she could go swimming, but they refused.
Jody thought the weight gain might be related to her hormones. She worried about the affect it might have on her health and mobility and tried to find coordinated medical support to help her. She discovered the adult cerebral palsy clinic stopped treating people when they turned 40.
About five years ago Jody, then in her early 50s, started having frequent falls while transferring from her wheelchair at night when she was home alone. She also began to experience considerable pain in her shoulder.
Jody’s GP recommended she see a neurologist. She had to wait 10 weeks and continued to have falls. The neurologist admitted Jody to hospital for a series of complex tests including an MRI. She had to stay in the hospital for more than six weeks waiting for the tests. ‘That was one of the first highlights of where her disability was really a massive barrier to diagnosis,’ Nic said. ‘As soon as she got into the system, they couldn’t really adapt the system to cope with both her day-to-day needs, but also then to give her some priority.’
Jody was in a standard hospital bed. She couldn’t use the button to call the nurse, so the hospital gave her adult diapers. Jody told Nic she found this quite embarrassing because she knew when she needed to go to the toilet.
‘She was just so upset, she was lying in bed, she couldn’t see TV – and it was just purely because they had not positioned the bed in a way that she could actually physically see the TV … She was convinced that they just look at her body and just think that there’s no hope.’
Jody had to have spinal surgery and remained in hospital for 13 weeks. The hospital told Nic they couldn’t deliver a rehabilitation program because of her disability. The senior rehabilitation doctor said Jody was ‘past her use-by date’.
The hospital transferred Jody to an aged care facility. She died unexpectedly one month later.
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.