Young people should live in the community

Photo courtesy of the Summer Foundation.

By Yasmin Noone

Young people who live in residential aged care go outside less, are more socially isolated and spend more time in bed compared to those younger adults who live in more age-appropriate settings, a new report shows.

The Victorian Young People in Residential Aged Care (YPRIAC) Initiative report, released by the Summer Foundation earlier this week, has shown that moving out of residential aged will increase in a younger person’s quality of life.

The report details the results of the now-ceased Victorian YPRIAC program, which provided funding and support to enable young people living in residential aged care to find age-friendly accommodation and preventing those young people at risk of entering a facility from moving in.

Monash University, in partnership with the Summer Foundation, conducted interviews with 68 people with disabilities and families who received services through the five-year YPIRAC initiative.

The study found that moving out of nursing homes enriches the lives of young people with disability as living in a more age-appropriate setting encourages the younger adult to go outside more often, have more opportunities to make everyday choices, have greater social interaction and spend fewer hours in bed.

Summer Foundation CEO, Dr Di Winkler, said the report provides further evidence that young people should not be forced to live in nursing homes because there is nowhere else for them to live.

But, she stressed, aged care facilities are not “bad” – they are just the wrong setting for a young person with a disability to live.

“Residential aged care is set up for people at the end stage of their life,” Dr Winkler said.

“The activities offered in aged care are not the ones that young people chose to do.

“There is also an expectation that older people [in residential care] will deteriorate, get sick and pass away, while a lot of young people have the potential to be more able and independent over time.”

The report also showed that changes in quality of life outcomes were less dramatic for younger people who lived in residential aged care and received enhancement services such as disability equipment to enhance comfort, communication or independence or individual support for weekly outings to engage in a community-based leisure activity.

“The most striking change identified in people who moved to community models of accommodation and support was the opportunity to make everyday choices,” the report reads.

“This included choosing what to eat, as well as the timing of going to bed; simple everyday choices normally taken for granted.”
 
Dr Winkler agreed with the report and interview findings which show that “even things like being in a house with a kitchen that young people have access to makes a difference [to their quality of life]”.

“Some young people who have moved out of aged care [and into age-appropriate] accommodation are able to do fairly simple domestic tasks where, in an aged care facility, it is not practical to do so.”

Dr Winkler said the evidence about the YPIRAC program was most powerful when it came from the younger person themselves during an interview.

“A person with MS, for two years, couldn’t communicate except through grunts. Through this program, he [was provided with funding] and received a communication device. He said ‘it was like going to be mute and waking up being able to talk again’.

“Another man, Ben aged 22, was assaulted in an unprovoked attack. He was in aged acre for three years. He couldn’t talk and was fed through a peg. He moved out and staff were then able to spend more time with him and able to support him with communication and assisted him to eat. He is now eating [with only some peg feeds] and has started talking.”

Nicole, aged 33, used to live in residential aged care but was given the opportunity to move to more age-appropriate accommodation in Victoria through the YPIRAC program.

“It was great to get out,” Nicole said.

“Now I am in my new home with other young people. I can talk. I can go to bed when I want. I can eat when I want to. I have got my own space.

“If I want to go outside I can go out now. It’s so different here to the nursing home – I wanted to get out. I couldn’t, I was locked in… The doors were locked.”

In 2006 the federal, state and territory governments funded a $244 million National YPIRAC program that ended in June 2011.

At the start there were 1014 people aged under 50 in nursing homes. When the funding stopped in May 2011, there were still 621 in nursing homes across Australia.

“While this program has made a tremendous difference to the lives of people who received funding to either stop them going into a nursing home or moved them out, there are no new packages available to prevent new admissions of young people to nursing homes,” said Dr Winkler.

“Although it is expected the National Disability Insurance Scheme (NDIS) will provide the funding for the support this target group needs to be able to live in the community, it will not address the chronic shortage of housing options for young people in nursing homes,” said Dr Winkler.

Around 200 people under age 50 are expected to be admitted into residential aged care per year between now and time the NDIS is implemented in 2018, in the absence of an interim funding/support program for young people in residential aged care. 

Dr Winkler called on governments to reintroduce the YPIRAC or a similar transitional program to enable young people at risk of moving into aged care to receive rehabilitation 12-18 months worth of services and possibly improve their health. 

“More housing services must be built and Australia needs services that prevent nursing home admissions and create pathways back to community living, such as slow stream rehabilitation.”

Disability Discrimination Commissioner, Graeme Innes, said: “…Nursing homes have an important function in our society but they are no place for young people with disability.”