In calling a royal commission into Australia’s aged care system, the Prime Minister Scott Morrison has the support of the Labor Party and the aged care sector.
Although the Prime Minister said the focus would be on residential and in-home aged care for seniors, he added that the inquiry would also cover care for young people with disabilities who live in aged care homes.
I am pleased that he has acknowledged the importance of the needs of such young people. The royal commission would benefit from reading the transcript of the 2013-14 inquiry, which the WA Parliamentary Community Development and Justice Standing Committee conducted into accommodation and intensive family support funding for people with disabilities.
I was a member of that Committee.
We gathered evidence from many sources about the lack of adequate accommodation facilities and age-appropriate supports for young people with disabilities. What this revealed was confronting and often heartbreaking.
The story of Kell, reported in the inquiry report, “Client driven? Or driven to despair?” has stayed etched in my consciousness.
Kell had an accident as an 18-year-old that rendered him disabled. At aged 21 he moved into a nursing home. He could not do anything for himself. To say “yes,” he was able to open his mouth slightly to indicate a “yes,” and to say “no,” he would cry, and that was the only control he had over his body.
One of the women residents of the nursing home, who had dementia, developed a soft spot for Kell, and sought to care for him.
Kell could not chew, because he had no chewing muscles. He could only swallow food that had been pureed to almost a thick liquid. And so he existed on a diet of slop.
Because she was fond of Kell, the woman thought he would enjoy some chips from the canteen, so she would buy potato crisps and give them to him. She would crush the crisps into pieces and placed them in his mouth. However because he could not chew, pieces would end up in his lungs, which contributed to him developing pneumonia.
Nursing home staff decided that the only way to keep him safe from the caring women was to lock Kell in his bedroom. He could not unlock the bedroom, call for attention to go to the bathroom, or ask for the television to be turned on, or for the channel to be changed. Kell stayed locked in his bedroom between meals, and only then, would someone go in and feed him his slops. Sometimes, someone would remember to put the television on, but not usually take the time to find out what he wanted to watch.
That was Kell’s existence. Because of lack of alternative funding to allow him to be removed from an aged inappropriate nursing home, he remained trapped in his bedroom with the door locked.
Headwest, an organisation working to help people with brain injury, told our Committee, “Experience shows us that most aged-care settings are simply not suited for younger people … particularly with complex care needs. This was especially so for those with acquired disability due to accident or degenerative neurological conditions. Moreover, our committee learned that most people with MS, and many other conditions would rather die than go into aged-care.”
Our report noted, “Accommodation in an aged care facility was not appropriate; staff at aged care facilities did not have the ability or the skills to best support them and provide the caring and nurturing environment that younger people needed.”
As I write this, I wonder if, and hope, life has improved for Kell. I dearly trust that the royal commission will bring to the fore the need for better care for all people in aged care. And, I hope fervently that the National Insurance Disability Scheme will remove the need for young people like Kell to be placed in inappropriate aged-care homes.