Sitting in attendance at a Royal Commission Community Forum can be an extremely confronting experience, but amongst all the heartbreaking personal accounts of abuse and neglect of elderly people, the one story that affected me the most didn’t actually involve an elderly person at all.
A young mother in a wheelchair who had been severely disabled in an accident was assisted to the microphone by a personal carer who then proceeded to read out a letter that detailed the young disabled women’s experiences living in an aged care home.
The heartbreaking words in this letter spoke of an existence comprised of complete and utter isolation and was capped by a closing sentence that myself and everyone else in the room will most likely never forget.
“The only hope that I have in my life is to rehabilitate my arms to the point where I can give my kids a hug and then kill myself.”
As the people in the audience fought to hold back tears, another young disabled woman had her chance to speak, and sadly, her experiences echoed the same grim story of the previous speaker.
This young woman had been an artist before an accident had left her severely disabled. Her words described her life in an aged care home.
“I used to be a very creative person, but being isolated to this point has taken my creativity. I have even forgotten how to daydream – I only think about what I’m staring at, and usually, it’s the same thing all day.”
While becoming suddenly disabled would obviously bring about some extreme lifestyle changes, the lifestyle depicted in these women’s stories could not be described as ‘living’ at all.
But the issues highlighted by these two women were not the result of poor individual facilities – the responsibility of their care has simply been given to a system that is currently not equipped to cater to the needs of younger people – and clearly, something needs to change.
The Summer Foundation has spent over a decade fighting for changes in human service policies and practices related to young people in nursing homes, in an attempt to stop people in these situations from being forced into inappropriate accommodation.
HelloCare recently sat down with the Summer Foundation’s, Acting CEO, Carolyn Finnis, to discuss the issue of younger disabled people living in aged care.
While most isolation occurs from being treated differently to everyone else, one of the big problems for young people living in aged care facilities is being treated the same.
“Aged care is geared towards people in the closing stages of their lives; the majority of aged care residents are 80+ years and the life expectancy in residential aged care (RAC) is around 3 years. The activities, food, daily structure, and support models are geared around this age group,” said Carolyn.
“Living in RAC (Residential Aged Care) can lead to disastrous outcomes for younger people. Most younger people (under 65 years) who live in RAC were admitted after acquiring a disability as an adult. Almost half are in partner relationships at the time of admission and more than 1 in 4 are parents of school-aged children. As you can imagine, RAC isn’t a suitable place for a younger person to try to maintain a relationship or raise a family.”
“Being in aged care leads to a marginalised and isolated life – tragically, 82% rarely or never visit their friends. The distress this causes their families is immense.”
“The ‘do for’ model of care in RAC also limits the confidence, independence, and rehabilitation potential of younger residents, complicating the pathway out of RAC and into more suitable housing.”
While Carolyn did not believe that young Australians living with disability should be made to live in aged care facilities, she did provide insight into why so many people are forced to do so.
“Most Australian homes aren’t accessible. After acquiring a disability – or experiencing an increase in their access and support needs due to the progression of a degenerative condition – around 50 younger Australians per-week end up having to move into RAC because their previous home no longer meets their needs and/or they need to find alternative housing”, said Carolyn.
“The majority (59%) of younger people in RAC enter directly from a hospital setting. Once a person is medically stable there is pressure on them to move them out of hospital, but accessing the NDIS and modifying your house (or finding somewhere new to live that meets your needs) can take much longer.”
When asked if the government is doing enough to support young and disabled Australians, Carolyn pointed to The National Disability Insurance Scheme (NDIS) and the Younger People in Residential Aged Care Action Plan as positive examples of a government trying to address the issues being faced by younger Australians living with disabilities, but warned that the systems must evolve in order to provide those in need of high disability support with the means to live fulfilling lives in the community.
“The availability of accessible housing also remains a significant issue. For a small proportion of NDIS participants, the NDIS funds the cost of their housing through Specialist Disability Accommodation (SDA) payments,” said Carolyn.
“SDA payments are made to the providers of housing which has been specially designed for people with very high support needs. The SDA scheme is seeing lots of new players come into the disability housing market, resulting in the creation of diverse housing options and some fantastic choices for people with SDA funding about where they live and who they live with.”
“In March 2019, the Federal Government released a Younger People in Residential Aged Care Action Plan, which aims to halve the number of younger people with disability entering RAC within 5 years.”
“Importantly for the 6000 younger Australians currently living in aged care, the government’s Action Plan has also committed to supporting them to find appropriate alternative housing.”
“The Action Plan acknowledges the complex nature of the problem, and recognises the need for the Health, Housing and Disability sectors to work collaboratively to reduce the number of young people admitted into aged care.”
The Summer Foundation has spent years working closely with residential aged care professionals, people with living with disability, and families to understand the issues around accessing comprehensive disability support, and this wealth of knowledge has allowed them to create a free online resource for RAC to support their younger residents and integrate them back into their communities.
If the Royal commission has taught us anything over the last few months it is that happiness means more to people as they grow older than clinical care.
Generally speaking, aged care facilities are a place where people go as they approach the end of their lives, while young people with disabilities are often in the midst of trying to understand how they can go about creating a new life and rediscover happiness within themselves.
Lumping these two groups of people together because of their shared need for clinical care – despite the fact that they are in completely separate stages of their lives – does nothing but add to the growing list of expectations being placed on aged care facilities and completely destroys the dignity of those already struggling to adjust to life with a disability.
Australia simply needs to do better.
This photo depicts Sarah Brady courtesy of ABC