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In the space of two short years, Kirby Littley went from being a young teacher with the world at her feet, to a patient in an aged care home, barely able to speak.
Key points:
- More than 6,000 young people with disabilities are forced to live in aged care facilities
- Kirby Littley's parents managed to secure NDIS funding to modify their home
- Vicki Wilkinson felt the need to break out of the aged care facility she was living in
She was 28, working as a special needs teacher and had just bought her first home when she was diagnosed with the brain tumour.
The symptoms crept up slowly, from headaches to blurry vision, until one day she collapsed.
Her mum convinced her to see a doctor, she went in for scans and a few days later, while standing in line for the movies, she got a call back: something was seriously wrong.
But the diagnosis was only the beginning. After the surgery, Kirby suffered two strokes, leaving her in hospital for nearly a year.
She had lost a significant amount of mobility, was in a wheelchair and would never return to the unit she had bought.
Instead, just shy of her 30th birthday, she was admitted to an aged care home, where she was the youngest patient by about 50 years. She had no other choice.
"I was lonely," she said.
"I try not to look back at it because I was very isolated and couldn't really communicate."
Kirby spent a year in the nursing home where she was treated like a person who was waiting to die; her days were dictated by a schedule, her access to vital rehabilitation restricted and at one point staff took away the board she needed to communicate.
Her parents became her fiercest advocates and during those lonely 12 months, working hard to get National Disability Insurance Scheme (NDIS) funding to modify their house so they could bring their daughter home.
They did, but there are still more than 6,000 young people stuck in aged care homes across the country, with another 50 admitted each week.
Government pledged to get young people out of aged care
Like Kirby, most of them acquired their disabilities later in life and the problem is, once they have been discharged from hospital, they have high support needs and often have nowhere to go.
So an aged care home is seen as the quickest and easiest solution. But, according to Luke Bo'Sher from the Summer Foundation, it can also be the most detrimental.
"For a lot of people those existing social relationships might break down, and they might form relationships with other people in the aged care facility, but even for older people, the average life expectancy is only three years," he said.
"So you have this very depressing experience for so many young people in aged care that the residents they're meeting are often passing away within a couple of years of meeting them."
The Summer Foundation was set up with the sole aim of getting young people out of aged care and, after decades of government inaction, there is finally a glimmer of hope.
The Aged Care Royal Commission will soon be looking into this very issue and ahead of that, the Government has made a commitment to halve the number of young people with disabilities in aged care by 2025.
It is the first time a target has been set and the Government is relying on the rollout of the $22 billion NDIS to meet it, together with the expansion of the Specialist Disability Accommodation (SDA) market.
Mr Bo'Sher said the ambitious rollout timeline is part of the problem — people with disabilities are not getting NDIS funding quickly enough to modify their houses or look for an SDA unit.
"What's still really important to do, and that the NDIS hasn't fixed, is the pathway," he said.
"So about how we make sure that someone who's in hospital transitions into the NDIS rather than into the aged care system."
Kirby is fortunate she lives in Geelong where the NDIS has been rolled out, helping her to buy a SDA unit and a place of her own to call home.
Going to extremes to escape 'God's waiting room'
Just 250 kilometres away in Shepparton, Vicki Wilkinson is still waiting.
She took the extraordinary step of escaping from her aged care home four years ago to move in with her new husband Michael, but it was a clandestine operation done with very little support.
"I was totally isolated," she said.
"Looking back now, I felt very very isolated."
Vicki suffered a workplace accident but it was subsequent surgery that made her disability even worse. In her early 40s, and with two children, she was left with no choice but to go to an aged care home where was told she would stay for the rest of her life.
"Going to an aged care place, everyone was old and dying. It was God's waiting room," she said.
"You're totally away from the supports that you've taken for granted.
"It's very sobering but devastating. I was numb, numb for a long time."
It was not until she met and married Michael that her prospects improved. And one day she left the nursing home, moved in with Michael and never looked back.
But it has not been easy and Vicki acknowledges she has taken a massive risk by living outside a full-time care facility.
Michael built a ramp out of aluminium sheets, so that Vicki could get in and out of the house, and cleared the kitchen and bedroom so that she could move around.
"I haven't had a bath or a shower for probably two years, three years," she said.
"I have bed washes, but that's not the same."
Vicki's relying on the NDIS funding coming through so that she can buy a new wheelchair that doesn't tip over, modify her house and live something resembling an ordinary life.
If not, the threat of the aged care home looms large.
"If I become unwell now or Michael gets sick, there's always that threat that 'you know what's going to happen? You'll have to go back to a nursing home'," she said.
"That's unacceptable."
Topics: aged-care, community-and-society, carers, disabilities, australia