James Nutt, 31, was violently assaulted at the age of 18, thrown to the ground from 4.5 metres. The resulting injury left him in a wheelchair with acquired brain injury. He was left with no option but to live in aged care facilities for six years.
“As the door shut on my bedroom on the very first night, I thought, that’s it. That’s the door of my life closing. This is where I’m going to spend the rest of my life,” he said.
There are more than 6,000 young people with disabilities forced to live in aged care facilities, according to research undertaken by The Summer Foundation. The average age in these facilities is 84. Some are admitted to nursing homes in their teens and remained there for up to 20 years.
Sam Peterson, 30, has been severely disabled for most of her life, and can only communicate with the use of a speech-generating device. She has been living at a nursing home in Victoria for more than a year.
“I’m struggling with where I live,” she said. “Often I want to cry but there isn’t anywhere to do it. The future is so uncertain, and I just want to feel at home.”
Kirby Littley, 29, also lives in a nursing home in Victoria. She was admitted to hospital 14 months ago to have a brain tumour removed, and has since suffered a series of strokes leaving her profoundly disabled and in need of constant care, using apparatus to assist her to breathe and swallow.
Her parents, Carol and Kevin, visit two to three times per day, often encountering a van picking up a body.
“It’s very depressing,” said Carol. “It’s not the right environment for a young person.”
The Summer Foundation, run by Dr Di Winkler and Carolyn Finis, was established specifically to deal with the issue of young people with a disability in aged care facilities that do not meet their needs.
“I met a young person recently who told me, ‘today is a beautiful day…I got to see the outside of the nursing home.’ It had been 12 months,” said Ms Finis. There’s just not enough accessible and affordable housing for people with disabilities.”
The foundation is just one of 150 submissions for a senate inquiry into the issue, spearheaded by Liberal WA Senator Linda Reynolds. James Nuitt, Sam Person, Kirby Littley and their families all gave evidence.
“Young people end up in aged care facilities for many reasons, but most often it’s simply because there is nowhere else to go,” said Senator Reynolds. “A lot do need very specific rehabilitation and other health support which is simply not available in an aged care facility.”
She cites research stating that over 80 per cent never get to visit peers their own age, and up to 50 per cent receive no visitors at all.
“They have to live the life of an old person,” she said.
Senator Reynolds said the families of those placed in aged care are under a great deal of stress.
“Imagine what it’s like for a mother or father to have to put their 25 year old into a nursing home. It’s utterly devastating.”
The National Disability Insurance Scheme (NDIS) will go some way towards solving the problem, said the Assistant Minister for Social Services, Mitch Fifield, who is overseeing the rollout of the scheme.
“The federal government introduced the NDIS to massively increase the amount of money available to support people with disability, and in particular young people in aged care.”
Despite the increase in funding, a lack of affordable housing is still an issue. The senate inquiry will report back to parliament on this issue in June.
The Summer Foundation proposes that living independently is not out of reach for young people with disabilities, citing the housing in which Bree Synot, 20, lives.
“I’ve always tried to avoid being in nursing homes because it’s not appropriate,” Synot said. “It’s like saying you’re too hard to deal with so we’re just going to seclude you from society. We should be integrated into everyday life.”
Synot lives in a large development which includes six apartments for the disabled, as well as a space where support workers can provide 24 hour assistance. The apartments are accessible and outfitted with smart technology to allow residents to live as independently as possible, but also include communications technology so they can access help when needed.
“What we’re keen to do is demonstrate that this model of housing works and is a viable alternative,” said Ms Finis.
“It has the potential to be rolled out on a large scale. We can look at developing the volume of housing that’s really needed to address this problem and have a real impact.”
“I’d love to see a world where people with disability have a real choice about where and how they live their lives,” she said.
James Nutt has recently moved into a custom built apartment, giving him freedom for the first time in his life. He has vowed to continue to advocate for getting young people out of aged care.
“I feel anger towards the government. They’re not building facilities for groups of young people living in nursing homes,” he said.
“We’re getting you out. I’m going to push, and each year there’ll be more getting out,” he said. “I promise you that.”