Catherine Roche talked to the royal commission about her late husband, Michael Burge, who spent two years in aged care after he had a stroke aged 56.
She described the difficulties she had navigating the space between the aged care system and the disability system.
After the stroke, Michael spent time in a hospital rehab unit where Roche faced a “constant battle” to keep him there. The hospital put “enormous pressure” on her to move Michael to other accommodation, telling her that three months is the usual time allowed.
Michael would stay in rehab for nine months before Roche was forced to move him to aged care for lack of any other options.
Roche said that she reached out to “15 to 20” other rehab centres and approached community care to find alternatives for Michael, but felt that “when they heard that Michael had moved into the aged care, they quietly put his file away and basically said, ‘We don’t have to worry about him now. He’s in aged care’.”
After an initial period where Michael’s health improved, Roche said that the aged care environment began to take a toll on the young man. Most residents were older than Michael, and half of them had dementia, Roche said, so he struggled to find any common ground.
“Over time, what it meant was Michael became more and more isolated … He would just remain in his room day in, day out,” she said.
Unfortunately for Roche and her husband, when the stroke first occurred, the NDIS had yet to be fully rolled out. When it eventually reached their area, it was not a simple process, even for someone like Roche, who had experience with government and project management.
“[For] somebody who doesn’t have that work experience, I think it would be very difficult for them to actually meander their way through the miasma of getting funding,” she said.
In the end, Roche believes that had they not been forced to move Michael into aged care and had other options for his rehabilitation, “he would still be here today”.
“In my experience, case management is fundamental to helping younger people who have a disability. The biggest challenge I faced was a lack of a road map or any pathways for Michael other than aged care.
“In Michael’s case, aged care was clearly not an appropriate place for a younger person with a disability. Residential aged care facilities are seen as a place for people to be made comfortable as they prepare to die. Michael was not there to die – quite the opposite. He wanted to recover and recreate his life,” she said.Do you have an idea for a story?
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