Justin Yerbury and his wife Rachel have been left reeling this week after discovering the disability support service his life depends on this week will soon be terminated.
Professor Yerbury has Motor Neurone Disease (MND) and requires an electric wheelchair and, following a tracheostomy in 2018, relies on a mechanical ventilator to breathe.
Since the operation, Southern Cross Community Care has provided around-the-clock care for him in his Wollongong home.
The high-level support has also enabled the world-renowned molecular biologist to continue his research into the degenerative disease, which took the lives of his mother and sister.
However on Monday, without warning, Prof Yerbury received an email to tell him the service would be terminated in one month. No explanation was provided.
"One of the reasons Justin wants to stay alive is to fight this disease and do research, and he can't do that without his carers," Mrs Yerbury said.
"It's been suggested that Justin go into full-time care, but that's not an option for us. We can't let him go into aged care and just rot.
"We've fought so hard to keep him here and at work. But for that to continue, we need that around-the-clock care."
Southern Cross Community Care, based in Sydney, provides Prof Yerbury with 29 hours of care per day (24 hours, plus five hours where there are two staff on shift).
There's another 20 hours a week for the team leaders, plus 15 hours a week for a second carer when Prof Yerbury goes to work at the Illawarra Health and Medical Research Institute based at Wollongong university.
"Justin has an intense morning routine and it takes carers at least three hours to attend to his personal care, to get him up, showered and dressed for the day. They also need to organise his medication, feed him through the peg, attend to his skin and joints," Mrs Yerbury said.
"They spend the rest of the day doing things for him as he needs - from moving him and attending to his medical needs to relieving a scratch - they are his arms."
It was on Monday, during the morning routine when Prof Yerbury cannot check emails, that he received notification that Southern Cross would cease to provide his care in four weeks time.
Mrs Yerbury said she was notified by his carers - who'd also received the email - before her husband found out.
"Despite his requests, the company wouldn't give him an explanation as to why they were terminating their services," she said.
Last October, funding for Prof Yerbury's care was rolled over from NSW Health to the National Disability Insurance Scheme.
But Mrs Yerbury said the service provider had for some time had issues filling all the required shifts, and she'd had to step in to take up the slack.
"Between October and July I've put in 300 hours looking after Justin, as well as working, doing a PhD and looking after our family," she said.
"I spent six months with Justin in hospital and can look after him - but I want to be his wife, not his carer."
Mrs Yerbury said the situation was stressful for the couple who are already dealing with the threat of COVID-19, with those with chronic conditions at high risk of complications.
"It's important, especially at this time, for Justin to have carers that he knows and trusts," she said. "And his carers are fantastic."
The couple are now looking at their options, including local providers who can cater for Prof Yerbury's high-level needs.
"But four weeks is not a long time to get everything in place," Mrs Yerbury said. "We just feel like we've been left in the lurch."
Southern Cross corporate services general manager Nina Olle told the Mercury the decision to terminate the services had been made due to ongoing difficulties recruiting support workers.
"Southern Cross has made the decision to relinquish this service due to an inability to be able to maintain ongoing service coverage, despite all efforts made and measures put in place over the time we have supported Justin," she said.
"We have struggled to recruit support workers in this program, despite ongoing advertisements and efforts.
"We have also had difficulty with some workers frequently cancelling shifts and not being willing to fill vacant shifts.
"The result of this has been increased pressure on Justin's wife Rachel to fill these gaps, which is not sustainable or fair on the Yerbury family.
"These issues have been discussed many times with the Yerburys as we have worked towards trying to find solutions."
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