Photo: Courtesy of Youngcare

By Yasmin Noone

Young people living in nursing homes are one of the most marginalised and isolated groups of people in Australian society, a new Monash University report has found.

Their life in residential aged care is also socially isolating and boring, and because they are placed in the wrong atmosphere for their needs, young people with disabilities living in a facility generally lead impoverished lives.

According to the Young People in Nursing Homes whitepaper released earlier this month, around 44 per cent of young people in aged care receive a visit from a friend less than once a year.

More than 20 per cent went outside “seldom or never” and 34 per cent of young people with a disability living in a facility almost never participated in any community-based activities like shopping, sports, or visiting friends and family.

“An estimated 3,300 people under the age of 60 live in nursing homes, which are not suited to their needs,” the whitepaper said.

“Aged care facilities are not designed or resourced to facilitate the active involvement of young people with high clinical needs in everyday activities or support their continued participation in the life of their community.

“Young people in nursing homes are one of the most marginalised and isolated groups of people in our society, with 53 per cent receiving a visit from a friend less than once per year and 82 per cent seldom or never visiting their friends. They are effectively excluded from our society.”

The five-year research project, conducted by Monash in collaboration with the Summer Foundation, summarises current research and policy related to the issue of young people in nursing homes in Australia.

The report aims to profile the ‘typical young person’ living in aged care, explain why they are there and describe the impact of living in a facility for older people before one’s time.

It states that almost 60 per cent of young aged care residents have an acquired brain injury (ABI), 13 per cent have multiple sclerosis and around nine per cent have Huntington’s disease.

And while there is always going to be a number of young people in society who live with a disability, the report suggests that the current figures are extremely high.

This, the report explains, is the result of improvements in medical technology and rehabilitation services over time, which has increased survival rates and life expectancies of people with an ABI. These days, people with degenerative diseases such as multiple sclerosis are also living longer.

“This has resulted in a new population of people with severe disabilities and complex care needs that require 24-hour supervision or very high levels of daily care and support, challenging the established disability service system,” the report states.

The report concludes that young people living in aged care is a “serious social issue, which can – and must – be fixed”.

CEO of the Summer Foundation, Di Winkler, said that in order to “fix” the current system, there must be a stronger focus placed on prevention rather than cure.

The system, she said, should be more responsive and support younger people with a disability to live in their own home, in the community for longer.

“There are some aged care services that work really hard to provide the best services for young people but they are just not resourced or to set up for young people to live there and lead an active life,” said Ms Winkler. 

“The average older person lives in residential aged care for about three to four years but I’ve known younger people who have lived there [up to] 30 years.

“…[So] we should stop people from going in there in the first place.

“One of the key learnings from this initiative is that it would be more cost effective and less complex to stop young people from going into aged care rather than letting them go in and then getting them out.”

The recent release of an Australian Institute of Health and Welfare (AIHW) report demonstrated that over five years of the Younger People with Disability in Residential Aged Care program, which ceased on 30 June, approximately 140 people under the age of 65 years were moved out of residential aged care into age-appropriate accommodation.

CEO of Youngcare, Marina Vit, agreed with Ms Winkler. She stated that the now ceased YPIRAC funding should be restored and new money provided towards the cause. 

“The AIHW report illustrated in the space of five years there was only a two per cent reduction in the number of young people living in aged care facilities,” Ms Vit said.

“Clearly a lot more needs to be done to tackle this problem.

“Disability is not a life choice. These are circumstances that are forced upon people unexpectedly, impacting individuals and families in ways that no one can ever really grasp until they are in that situation.”
 

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5 Comments

  1. The message is not about age but the right services being provided to all people who need care, young and old. Why should older, or younger people, miss out of leisure and lifestyle options by age or illness/disability. Sue Hendy CEO COTA Victoria.

  2. There is no focus on the needs of younger people with dementia. Their disability is cognitive, not physical and require different supports to those with ABI or other illness.
    there are a number of people with younger onset dementia living in nursing homes for older people in Australia, which is often inappropriate. Where are their needs being identified and addressed?
    they often fall between the cracks of aged care and disability services.

  3. My issue with Youth in Aged Care is that while the issue is pursued as it needs to be pursued, individuals get caught up in the machinations and politics of the process.
    I am aware of local ACATs(Aged Care Assesssment teams) who will not process younger people into Aged Care on `principle’ however it is cuurently the best option because it is currently the only option.
    The issue needs to be pursued, but not with a method that creates `people in crisis’ as living examples to be used as `evidence’. The term Disabled Youth refers to real people.

  4. It’s my understanding that the ‘Stronger Together Phase 2’ initiated by the previous Labour Government in NSW is being continued on by the Liberals, with $2billion being allocated over the next 5 years. Let’s hope it can be better and more effectively distributed than in the past. Our daughter’s previous YPIRAC funding is still continuing and it is hoped she will be out of the Aged Care Facility before the end of the year (it is now nearly 11 years since admission). The NSW State Government’s initiative on ‘Living Life My way’ shows promise to gain the right to exercise choice and achieve a person centred funding program

  5. I really get the need to focus on young people in nursing homes – so that they can have a better life. But in aged care we also need to keep people in the community for as long as possible, and boredom and depression are as true for older people in nursing homes. I agree with Sue Hendy that this is an issue of human rights for all people who require any form of institutional care. Goffman warned us of the dangers of institutional care in the 1960s and he is as relevant today as he was then!

    The young/old split while understandable can have undesirable consequences confirming everyones fears about nursing homes.

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