“It’s so frustrating seeing one of your best friends share a room with an 80 year old … sometimes he looks at me and says, ‘I’m f…ed’.”
Ben Wintle, of his best mate who’s been living in aged care since suffering a stroke 2 years ago.
Despite being a younger Australian, without having adequate support out of hospital, for Mr WIntle’s mate, his only option for long term care was to enter an aged care home. And, sadly, Mr Wintle’s mate isn’t alone.
With any luck we’ll hear more stories like this over the coming months as disability advocacy groups push for a focus on younger Australians living in aged care during the Royal Commission in to Aged Care.
One major advocacy group behind the push is the Summer Foundation. According to Summer Foundation’s website, today in Australia, more than 6,000 younger people (under 65) with disability are forced to live in nursing homes.
The Royal Commission has this issue on its agenda, as we heard at last Friday’s first hearing. Opening statements from joint commissioners Richard Tracey and Lynelle Briggs highlighted the Royal Commission’s interest in the issue of young people with disabilities in aged care.
“Providers were asked what other changes, if any, to the aged care system would assist them to provide services of higher quality and greater safety to Australians, including to people with disability residing in aged care facilities,” Ms Briggs said.
Though, the Summer Foundation wants more. While welcoming the Royal Commission’s efforts, Summer Foundation (and other disability advocacy groups) say we must focus on preventing young people entering aged care in the first place, rather than improving aged care for them.
Weekly we see some 50 younger Australians entering aged care, some of them moving into a nursing home in their 20s or 30s. Can you imagine at that age living with people in their 80s?
Summer Foundation says it’s not even about the state of the centres––even the best staffed aged care centres with the best facilities, even if the food is top notch, and the rooms are like resorts, at the end of the day, young people do not belong in aged care homes.
For one, for people under 60, being in aged care can lead to a marginalised and isolated life. In a recent interview for ABC’s Radio National, Deb Hewson, who lived in a nursing home due to a disability in her 50s, says it is “Not possible to form social relationships with residents,” most of whom are frail and a lot who are suffering from dementia, many just struggling to stay alive.
A large issue is the nature of Aged Care versus the nature of rehabilitation ––which younger people with disabilities require.
It’s detrimental for a young person, Chief Executive Officer (CEO) of the Summer Foundation, Luke Bo’sher says,
“It reduces their independence and limits their ability to reach their potential.”
Systemically, in a nursing home, rather than push you to try they take away independence. That’s because traditionally aged care facilities aren’t built with rehabilitation in mind, but younger people with a disability often require rehabilitation, not just care.
Bo’sher says this is a complex issue.
“The royal commission should focus on ensuring the disability, health and housing systems deliver the range of alternatives to Residential Aged Care (RAC) that will keep young people with disability out of aged care.” Bo’sher states.
Summer Foundation chief of staff, Carolyn Finis backs Bo’sher, telling the Financial Review, that for this very reason they (Summer Foundation) are committed to hosting workshops across the country between February and April with a view to mining some of these stories. Asking stakeholders to “tell the government why young people shouldn’t be pushed into aged care.”
As it stands, aged care providers support young people with disabilities because there are no other options. The Summer Foundation project aims to offer better opportunities for young people with disabilities to ‘live an ordinary life’.
“We need really clear options that are going to prevent young people going into the aged care sector in the first place,” she said.
“This is a great opportunity for the royal commission to fast track a solution to the problem.”
Let’s hope we see some powerful, change-provoking stories from young people with disabilities unveiled by the Commission over the coming months.