As the spotlight turns to conditions in aged-care facilities, attention is also being drawn to the problem of young people with disabilities being forced to live in residences with an end-of-life focus. By Evelyn Lewin.

Young people in aged-care homes

Nursing homes present particular difficulties for young residents.
Nursing homes present particular difficulties for young residents.
Credit: Heinz Linke / Alamy Stock Photo

Four years ago, Melissa loved her life. The then 41-year-old was working as a barmaid and living in an apartment in Melbourne with her beloved cat. She was an avid cyclist who also dabbled in painting, played guitar and was a former state champion in karate.

Very suddenly Melissa developed weakness in her legs. When she collapsed two weeks after the symptoms appeared, she was rushed to hospital. The weakness marched ceaselessly through her body and, when it hit her lungs, Melissa was intubated and admitted to intensive care.

Melissa was diagnosed with Guillain-Barré syndrome (GBS), an autoimmune illness that attacks the central nervous system. The cause is often unknown. When she awoke in the intensive care unit after 10 days, she was paralysed from the nose down. After months of intensive therapy and treatment, Melissa slowly regained use of her upper body but remained paraplegic.

A year-and-a-half after arriving at hospital, Melissa was deemed fit to leave. The issue now was where to go. She could not return to her fourth-floor flat, and there was no suitable accommodation available for independent living. “There was no other choice but to put me in a nursing home,” she says.

The prospect hit her hard. Melissa had struggled to visit her grandfather when he moved into such a facility. “You know how some people can’t handle hospitals?” she says. “Well, I couldn’t handle nursing homes … All the smells and the sickness – I just got overwhelmed.”

Melissa has now been a nursing home resident for more than 18 months.

Aged 44, Melissa is 40 years younger than the average nursing home resident in Australia, and she wrestles with many aspects of living there. She has little in common with the elderly residents, many of whom have dementia, and struggles to find a meaningful rapport with them.

While she is drained by the boredom of life in the home, she’s never at peace. “It’s hard to find a quiet spot because a lot of them scream,” she says of her neighbours. Nights are the worst. Confused residents often wander into her room, and Melissa worries about how vulnerable she is, unable to get up. “I’m always on guard.”

While she is incapacitated by paraplegia, Melissa is mentally in active midlife, and finds it difficult to cope with the nursing home environment. She understands she might not fit the picture of life in residential care. “People don’t get the picture of young, bubbly, happy people that are funny, like myself, and that are just wheelchair bound,” she says. “Every day is a struggle, it’s an absolute struggle, either physically, mentally or emotionally.”

Melissa is far from alone. According to the Australian Institute of Health and Welfare’s National Aged Care Data Clearinghouse, in 2016 there were 6200 people aged under 65 with very high support needs living in aged care. That number has remained somewhat static over the past decade.

As in Melissa’s case, the situation often arises when a patient with care needs is ready to leave hospital. While discharge is quick, it can take months to organise appropriate housing options in the community, says Luke Bo’sher, chief executive of the Summer Foundation, an organisation that aims to find alternatives to nursing homes for young people needing care. The community option Bo’sher refers to is known as specialist disability accommodation (SDA), funded through the National Disability Insurance Scheme (NDIS), and can be shared accommodation or individual living arrangements. But the numbers of SDA placements are severely limited. The Summer Foundation notes that 17,500 people are currently living in SDA, but they have identified an extra 33,000 people with very high support needs who require housing.

Private homes often aren’t a viable option, says Bronwyn Morkham, director of the Young People in Nursing Homes National Alliance. For a person with disabilities to return to their home, it needs to be accessible and have services provided from a skilled workforce to manage such special needs. Faced with situations where these conditions can’t be met, “nursing homes are one of the only options”, Morkham says.

Anthony Ryan, chief executive of Youngcare, a non-profit organisation aimed at aiding independence for young people with high-care needs, is appalled by the current situation. “I find it absolutely unforgivable that this is happening on our watch,” he says. “We’re better than this as a country.”

Ryan says nursing homes do not cater for the interests of young residents, nor do they allow for active community engagement outside the facility. According to the Summer Foundation, more than half of people aged under 65 in nursing homes receive a visit from a friend less than once a year, while 13 per cent get out of the home seldom or never. Their research also shows one in three young people in aged care has school-aged children.

Socially isolated, young residents are also surrounded by death and grieving. “They see more death and dying than any of us would in our lifetime,” says Morkham. Melissa testifies to that: “Every couple of weeks, someone’s gone. And it’s depressing, it’s really depressing.”

Perhaps the most frustrating aspect of nursing home living for young people requiring care is that their physical needs often remain unmet. Morkham says government funding allows for about 2.8 hours of staffing assistance a day, when often around-the-clock support is needed.

“It’s not the nursing home’s fault,” Morkham says. “It’s just meant to be for a very different group of people.”

In 2006, a five-year Council of Australian Governments (COAG) initiative known as Younger People with Disability in Residential Aged Care (YPIRAC) was launched in order to divert young people from nursing homes to supported disability accommodation with the appropriate level of care, or at least to help residential care facilities develop better services. With the federal government contributing half of its $244 million budget and the states the remainder, the initiative led to 250 young people being moved from a residential aged-care facility to a more appropriate supported disability accommodation. It concluded with governments promising to continue efforts to improve such outcomes.

Since its introduction in 2013, the National Disability Insurance Agency (NDIA) through the NDIS has assumed responsibility for funding appropriate housing for younger people otherwise forced to live in nursing homes, says Bo’sher.

Its yearly budget of $700 million means the NDIS has funding for about 12,000 new places of disability accommodation, says Bo’sher. As there are more than 33,000 people with very high support needs requiring housing, he says that leaves about “20,000 or so” people relying on state and federal governments to commit more funding for housing.

A spokesperson for the NDIA described young people in residential aged care needing housing as a “priority group” for the NDIS.

What that housing will look like is uncertain. Bo’sher says a fundamental vision of the NDIS was to give people choice and control over where they live and who they live with. But in order to keep costs down, Bo’sher says the NDIA may force people into shared accommodation, a move he deems unacceptable.

Bronwyn Morkham says that while we’re looking for alternatives, the challenge lies in delivering comprehensive support for under 65s while they remain in nursing homes.

Bo’sher has a different perspective. He says the NDIA needs to process requests for SDA more quickly when patients face discharge from hospital, so they don’t end up being put in a nursing home in the first place. He believes the NDIS can bring the number in nursing homes down to zero over the next decade.

“We think that’s entirely possible because the biggest barrier in the past has been an underfunded and rationed disability system, and the NDIS fixes that problem,” he says.

Meanwhile, Melissa waits in hope of leaving aged care soon. She longs to be reunited with her cat, and to be free from the restricted, difficult life in a nursing home.

Every night, she watches mournfully as the daytime staff clock off.

“They get to go home to their loved ones and their houses and their animals, and they get to switch off,” she says. “For me, being here, there’s no chance to switch off.”

This article was first published in the print edition of The Saturday Paper on September 22, 2018 as "Residential care less".

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Evelyn Lewin is a medical doctor and freelance writer.

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