He didn’t let his disabilities stop him from walking his own “hero’s journey” a la Star Wars – receiving a university medal, starting a PhD, and marrying Estella, a full-time chef. In 2003, the NSW government granted him a care package that included 24-hour care by registered nurses. But two years later, the nurses were replaced with unqualified support workers, and Mr Detterer said the standard of care deteriorated to the point he now believes his life is at risk. Dion Detterer's wife Estella adjusts his tracheostomy tube, which he needs 24/7, at their Blue Mountains home. Credit:Wolter Peeters With the NSW health system already accounting for nearly a third of the state’s budget, his situation raises uncomfortable questions about how to balance the unquestionable needs of an individual with those of the wider community. Mr Detterer said there were large gaps in the 24-hour roster and alleged some of the Southern Cross-employed support workers had behaved inappropriately, allegedly drinking alcohol prior to a shift, smoking marijuana, and even asking his wife for a massage.

“Up to 90 hours are unfilled each fortnight and my wife can’t cover the gaps because she’s the breadwinner keeping us afloat with the mortgage,” he said. NSW Health Minister Brad Hazzard says they're working to find "some sensible balance" to improve Dion Detterer's situation. Credit:Andrew Quilty “Most of the support workers aren’t suitable and can’t operate ICU-level equipment. One couldn’t identify the tracheostomy kit while I was suffocating and my wife had to race in her car just to get to me to save my life.” Out of desperation, he wrote to Health Minister Brad Hazzard last year asking for registered nurses so he could continue to “contribute to society in a meaningful way – as a researcher and a developer in the field of genomics and, more importantly, as a husband and son”. A couple of months later, a case conference with representatives from EnableNSW, which runs the Home Ventilation Program, Southern Cross, Muscular Dystrophy NSW and NSW Health was held. While a plan of action was drawn up, nothing changed.

Dion Detterer was born with muscular dystrophy. Credit:Wolter Peeters “I want my care to be clinically and legally appropriate, I want to know that I am going to be alive tomorrow if something goes wrong,” he said. “I believe they’re cutting corners and, while I understand the budget is very tight, they’re risking people’s lives.” Mr Hazzard told Fairfax Media the cost of caring for Mr Detterer was $400,000 a year and, if registered nurses were provided, “it would be a lot more expensive”. He has checked with HealthShare NSW, which runs EnableNSW and contracted Southern Cross, and said the care provided to Mr Detterer was consistent with what was being delivered across Australia.

“It’s a challenging balancing act – the service must be adequate and appropriate but we also have to recognise the cost is very high to taxpayers,” Mr Hazzard said. “Nevertheless, I’ve asked them to have another look at Dion’s case and see if there’s anything we can do to find ... some sensible balance that will help him move forward with his life.” Southern Cross spokeswoman Barbara Merran said it had no knowledge of a support worker drinking before a shift but was made aware of someone smoking marijuana during one. She said this worker immediately underwent drug and alcohol testing and the results were clear. He was still removed from Mr Detterer's program. “This unsubstantiated accusation has caused great distress to the support worker and his family,” she said.

Ms Merran said Southern Cross provided quality care, made evident by the fact Mr Detterer had not been admitted to hospital for a long time. “There would be no gaps in Dion’s roster if he had accepted the two support workers we recruited [but] we are continuing to take steps to improve the stability of Dion’s roster through ongoing [job] advertising. “Southern Cross continues to work with Dion, his family, the funder and other parties to try and address Dion’s concerns.” PhD supervisor Professor Paul Kwan, from the University of New England, said he was impressed by Mr Detterer’s intellect and ability to quickly pick things up. Loading