Amayah

Amayah, early 30s, has cerebral palsy. She comes from a culturally and linguistically diverse background and until a few years ago lived with her parents.

For much of her life Amayah used a walking frame and was ‘very independent’. In her 20s, her mobility suddenly declined. She told the Royal Commission her mother couldn’t ‘cope with people with cerebral palsy’ and sent Amayah to respite every day.

Amayah married a man from the same cultural background and continued to live with her parents. She became pregnant with twins but had a miscarriage. ‘[My mother] hit me and then I lost my two twin girls,’ she said. Amayah’s husband left her.

Needing to use a wheelchair all the time, Amayah moved into a group home. She lived with four other residents, most of whom were elderly with dementia.

Amayah wasn’t happy. ‘I was crying all the time and ringing my dad all the time.’

Amayah said staff ignored her and prioritised the other residents above her. They routinely left her in bed or in her wheelchair for long periods of time. One morning she was left on the toilet for more than an hour. Staff said they didn’t have time to do activities with her or take her on social outings.

When Amayah complained staff called her names and told her she ‘should be in a mental home’. Staff often made racist slurs referencing her country of origin. The more she complained the more staff and management punished her, labelling her ‘the complainer’.

One time another resident was having a seizure and fell from his chair. Amayah ‘panicked’ and tried to help, ringing an ambulance. The support worker started ‘screaming and yelling’ telling her ‘you go to your room’ and ‘you don’t need to help other people’.

Staff regularly locked Amayah in her room. Other times, staff pushed her wheelchair into the corner of the room and turned the power off. She couldn’t move because ‘the switches are on the back of the chair’.

Amayah was often unwell with bowel issues. ‘[My] tummy was very big, it was a heavy kind of feeling.’ She said her GP thought the problem was her diet. ‘They were giving me lots of junk food, all unhealthy.’ The GP contacted the home and requested they provide more nutritious meals, but nothing changed.

Another time staff forgot to put the belt on her shower chair and Amayah slipped and almost fell.

Amayah made a formal complaint to the manager. She discovered staff weren’t writing incident reports. Rather than respond to her complaints, management asked her to leave. They gave her two weeks’ notice, so she had to move to temporary accommodation.

The new service provider was better but Amayah had problems getting support workers each day.

‘When I need a carer … they don’t message me. Like, who’s coming, who’s not? Please tell me. I need to know because I need a carer.’ Often the provider told her they ‘can’t find a carer’ or sent inexperienced staff. Amayah said support workers weren’t trained and were ‘mucking around’ with her medication. They also didn’t know how to cook basic meals. One tried to cook a boiled egg in the microwave. Another didn’t know how to make a milky tea.

Amayah said neither group home understood ‘about the culture … about the religion’.

Amayah is Muslim and doesn’t eat meat. A support worker bought a ham pizza for dinner. When Amayah complained the worker said she didn’t know what to do. Amayah suggested a vegetarian pizza or a cheese sandwich. The worker said she don’t know how to make a sandwich. ‘She made me cry,’ Amayah said.

Amayah now lives on her own in a supported disability unit. It has a large living room and she’s ‘very happy’. She has access to on-call support staff. While they can be ‘a bit bossy’ they ‘understand what I like, what I don’t like,’ Amayah said.