Hayley

‘When a person is diagnosed with a significant condition, the next step should be for someone to help them … If they stop working, how do they access funds, how do they live, what changes do [they] need to make to do well and live a life that is doable?’

Hayley, late 40s, has degenerative conditions that affect her sight, mobility and short-term memory. She also experiences profound incontinence and mood instability.

When she first became unwell 10 years ago, she ‘really struggled’ to figure out how to look after her kids.

‘I was on the couch, not really able to get up … and the kids were locked in the loungeroom with me. We had a lunch and a morning tea there and waited for dad to get home and sort of take the kids, and bed, bath and everything else that needed to happen.’

Desperate, Hayley contacted the department of child services and reported herself for neglect. The department provided a nanny for a few hours on a temporary basis. Hayley told the Royal Commission this was helpful, but she had to constantly reapply for the nanny.

‘Every 13 weeks I needed doctors' letters to support the ongoing issue, so it was quite a lot of effort to help keep her there.’

The children missed out on ‘a bunch of basic things’. They didn't have play dates. No-one came to the house. They didn't participate in sport or after-school activities.

When Hayley could no longer turn the taps on and off, she realised she needed more support. An occupational therapist assessed the home and recommended a number of modifications.

The department approved Hayley’s development application and put the work out to tender. The builder they choose quoted $98,000 to modify the bathroom. Hayley believes if she’d contracted privately, it would have cost $20,000.

It took two years for the builder to finish the bathroom and then widen the doorways for wheelchair access. He told Hayley he would complete the landscape stairway with a staircase and chairlift within a few months.

But there was a breakdown between the builder and the engineer, and the work stopped.

Hayley contacted everyone involved, eventually making a complaint to the disability minister. The minister sent her back to the department, who in turn told her to contact the builder.

‘The builder was quite aggressive with me,’ Hayley said.

He would yell at Hayley, call her names and tell her to stop getting involved – she should be grateful that she was getting a publicly funded staircase. At one stage he told her he was not progressing her modifications because he was helping ‘people who really needed it’ – she was healthy. Hayley started recording their phone calls.

Then, Hayley’s development application expired.

The department told her that for the work to continue, they needed to hold a mortgage over the home. She wasn’t in a financial position to agree to a second mortgage and made a complaint to the state ombudsman. Eventually the department agreed to remove the mortgage condition.

It has now been more than 10 years and the work has still not been completed. This has placed a huge strain on Hayley and caused her immense stress. She is terrified of falling down the stairs and her family becoming homeless.

Hayley's husband began losing his temper during the disputes and their relationship broke down. He no longer lives in the house and stopped supporting her financially.

Hayley is worried he may want to sell the home. There is a 6-year waiting list to get social housing where she lives, and any house will need to meet her increasing accessibility needs. She is not able to move out of the area because she relies on her parents, who live locally.

‘If you weren't having a hard time emotionally from the loss of your abilities, then … the process of getting assistance is so convoluted that it would definitely take you out, and it has done me on many occasions.’