Olivia

‘I’m living with that fear all the time that [the NDIS] are suddenly going to give you one of these [eligibility] assessments and you can’t even find out why.’

Olivia, late 40s, has myalgic encephalomyelitis (ME) fibromyalgia, postural orthostatic tachycardia syndrome and severe endometriosis.

Prior to being diagnosed with ME about 10 years ago, Olivia worked in a senior position at an IT company. She told the Royal Commission she gave up work when her symptoms became debilitating. Her husband is her full-time carer.

A few years ago, Olivia applied for the NDIS. She said because the NDIS was new, her GP was unfamiliar with the process. The NDIA rejected her application because her GP didn’t provide sufficient evidence.

Olivia applied a second time and was rejected because her disability was ‘not permanent’. She asked for the decision to be reviewed and the NDIA instead argued she ‘had capacity’ and therefore was not eligible.

Olivia appealed the decision through the Administrative Appeals Tribunal. She said the NDIA was represented by Queens Counsel and ‘experienced legal professionals’ while she was assisted by legal aid lawyers. She said the NDIA threw up ‘every obstacle’ and ‘played lots of games’. They required her to have an independent functional assessment but refused to give her a copy of the report. The process took 22 months. One week prior to the hearing the NDIS conceded Olivia was eligible for funding.

Olivia requested a manual wheelchair and a medical bed. Initially the NDIA refused to fund these supports but eventually agreed.

Then, during a COVID-19 lockdown, the NDIA requested Olivia complete an eligibility reassessment. She said they didn’t give any reason, and she had to seek an extension so she could get reports from her specialists. She spent considerable time and effort attending telehealth appointments and allied health assessments to support her eligibility. She discovered the reassessment was triggered because ‘an assessor doing the manual wheelchair assessment decided [her] condition was a health condition’. She argued this should never have happened given the outcome at the tribunal.

‘These processes have had a profound impact on my disability. The stresses and the processes I have had to go through to get support, and to continue to get support, has made me worse physically, and means that I now spend more time bed bound than I was prior to getting onto the NDIS.’

Olivia said she lives with a ‘real fear’ the NDIA will put her through assessments again. She believes it is because of a lack of knowledge and understanding about ME in Australia.

Olivia believes the healthcare system is also prejudiced against people living with ME. At the local regional hospitals, doctors look at her chart, see the diagnosis and assume she is ‘drug seeking’ or a ‘hypochondriac’. She said, ‘They don’t treat me with the compassion and care I deserve.’

One time, Olivia went to emergency with severe stomach pain and was given paracetamol and sent home. Later, doctors discovered her appendix was leaking. Another time she went to hospital with blood in her urine. Doctors told her this was normal and gave her anti-inflammatories. Four days later, tests showed she had a ‘raging infection’ and she ended up in hospital for 10 days.

‘I don’t now go to hospitals unless I’m absolutely critical.’

Olivia said the NDIS and medical professionals ‘need to listen and understand the lived experienced of these disabilities’ and not just rely on textbooks or articles.