By Ian Henschke
This week the Royal Commission into Aged Care Quality and Safety returned to Adelaide for hearings about home care.
One of the first witnesses was Lyndal Henderson, who pointed out being gay posed special problems. Her partner Veda, who had early onset dementia, had pleaded with her “don’t put me in a home”.
Veda is a retired rock musician. She was a member of a group called The Party Girls. Her rare form of dementia was diagnosed at 61 and now she’s 68.
Lyndal told the Commission neither Veda nor herself have family nearby. She had concerns about dealing with a traditional “faith-based” care provider.
She felt she was still suffering from a form of post-traumatic stress disorder as a result of the toll taken on her while she cared for her partner without help.
“It’s hard for a single person doing that 18 to 20-hour shift until support arrives,” she said.
Now they have a home care provider they are happier with, who charges 10% less in administration fees, and they work to support others with dementia in their region. You can learn more about their work here.
Guilt and sense of failure
Raelene Ellis from the Sunshine Coast in Queensland was another witness who spoke about her home care experience. She reinforced the message that despite care eventually being provided for her mother, who she was caring for, the emotional toll was still too much to bear.
She broke down on the stand when she described the guilt and sense of failure she felt when she eventually placed her mother in residential care.
Her experience of the level 4 home care package she finally got was not great. Raelene said she only received around nine hours help a week from a package that was worth $50,000pa. The $20,000pa in administration costs was, in her view, excessive.
Coincidentally, I have heard a very similar story from a National Seniors member in Melbourne who is looking for help for his mother. She is now in her 90s and has dementia. He, too, complained directly to me about what he saw as excessive fees.
Another member from Adelaide emailed after his home care experience. In his case, it arrived too late and now he’s watching the proceedings and is angry at what he’s seeing.
“Shameful creaming of money in admin fees in aged care. Both parties at fault. Privateers have no place in aged care!”, he wrote.
It’s a common story and one the commission is now forensically addressing.
Providers are being put on the stand and asked to justify and explain their fees.
CALD groups missing out
Another interesting session this week was from the Culturally and Linguistically Diverse (CALD) perspective of both home and aged care.
Mary Patetsos from the Federation of Ethnic Communities’ Councils of Australia (FECCA) provided some powerful arguments. She spoke to her organisation’s submission and said CALD groups were not being catered for properly.
Their diverse cultures, languages and faiths had to fit into the norm and there was often just tokenism by the providers. She said although people from non-English speaking backgrounds made up more than a third (36%) of all older Australians, their needs are largely ignored.
“They accept the norm because they don’t feel safe to ask. They are least likely to complain or ask for things to be done differently,” Mary said.
National Seniors research led by Professor John McCallum has done some fine work addressing this issue and you can read more here.
Mary said it was the CALD communities’ own support groups, often made up of tireless volunteers, who bridged the gaps in the My Aged Care System and the problems of providers not adequately meeting needs.
She also managed to make the Commissioners and most of those in the courtroom smile when she gave the line of the month. She said there had been so many enquiries into reforming the system that now “age care reform is exhausted”.
A reminder the Royal Commission hearings can be watched and there is also an audio-only stream. Transcripts are also available for every session.
And if you want to make a submission yourself, you can still do so.
All the information you need, and more is available on our website.