Neve and Jarrod

Neve, mid-30s, was diagnosed with epilepsy when she was young. As a teenager, her seizures increased. Doctors further diagnosed her with a range of complex cognitive, physical and psychosocial disabilities. She requires 24/7 care. If her seizures aren’t managed carefully she is at risk of injury and death.

For the last 15 years, Neve has been living in disability residential facilities.

Jarrod, her brother, said that with the coming of the NDIS, the home Neve had been living in for about 10 years ‘dropped the ball’. Management reduced staff numbers and refused to provide additional support workers for Neve. She became malnourished and her medical care deteriorated. Management allowed an occultist to visit Neve when she was experiencing psychosis.

Jarrod and his wife, Rachel, engaged a new disability services provider. There was a three-month transition period and at first they found staff warm and accommodating. But very quickly Jarrod noticed errors and a ‘lack of basic competence’.

Staff lacked training and would often not show up for shifts. The inexperienced manager would call in Jarrod and Rachel to cover these shifts, but still invoice them for support workers. Two support workers took maternity leave at the same time and management failed to replace them, despite Jarrod and Rachel approving potential candidates.

Jarrod engaged a support coordinator who worked hard to improve the provider’s performance, with little success.

Jarrod made a formal complaint to the NDIS Quality and Safeguards Commission. He said the process was ‘totally unsatisfactory’. He received a single phone call in three months to ask how it was going. Neve’s parents felt disheartened and felt the commission was ‘basically a swamp’.

‘They lead you off into the swamp and kill you there,’ said Jarrod. He believes the process is ‘useless’.

The next provider was ‘extremely hopeless’. Staff failed to keep basic records or follow Neve’s medication protocols. Some staff did not have sufficient literacy and language skills to communicate, read charts or keep records. They disregarded Neve’s diet schedule and fed her sausages and beans on a regular basis.

A few months after Neve moved, the provider terminated Neve’s agreement with two weeks’ notice. Neve had to spend time in hospital until she was able to move to her new home. She had to share a room and was distressed, but there was no other option.

Jarrod said the new home is unable to provide the level of care Neve requires. There is no consistency of support staff because of the high turnover. In one year Neve has had more than 30 support workers. The workers are not sufficiently trained, do not understand her ‘complexities’ and do not follow procedures. Neve had a major fall walking down steps in the wet room alone, without shoes.

Neve’s mother, Rachel, increasingly felt her daughter’s living situation was ‘hopeless’ and that there was nothing she could do.

Rachel suicided.

In his distress, Jarrod felt he had no option but to relinquish Neve’s guardianship and her financial administration to the public trustee.

He now regrets the decision and feels ‘shut out’.

He says the public guardian has a ‘culture of antipathy between parents and guardians’ and is ‘the enemy of the family’. He is concerned Neve is in a ‘very dangerous place’ at the moment and the public guardian is not taking sufficient steps to keep her safe. He feels there is nothing he can do.

‘We are committed carers … but we are disregarded.’