KIM LANDERS: For many of us, nursing homes are a place we imagine we'll go when we're very old and can't care for ourselves.
But almost 4,000 young Australians with disability, they live in aged care too, and advocates say there has been little progress on finding them somewhere else to live.
They're hoping new tools to support people to make the transition will help to avoid a life of isolation.
More from national disability affairs reporter Nas Campanella.
NAS CAMPANELLA: Home for Helen Burt is more than just a place she can decorate and call her own. The Melbourne woman who lives with multiple sclerosis uses a wheelchair. She moved into her apartment which is funded by the National Disability Insurance Scheme 16 months ago after years in a nursing home.
HELEN BURT: You are really living in an institution where everyone is years older than you and they're there for the last years or months of their life and whereas you're trying to live. All your decisions are taken away from you.
NAS CAMPANELLA: She says moving out wasn't easy.
HELEN BURT: Well, I guess I'd given up hope and I assumed that's where I'd be for the rest of my life but when someone told me about an information session for an option and right from that moment my life changed.
NAS CAMPANELLA: Helen Burt's now using her lived experience to assist others make the same transition. She was part of a group which has designed tools to support and encourage people with disability to move out of aged care.
The project was overseen by research advocacy organisation the Summer Foundation.
Its CEO is Dr Di Winkler.
DI WINKLER: So there are videos, audio recordings, written materials about moving out of aged care. So many people move into aged care and they're told aged care is the only place for them.
NAS CAMPANELLA: According to Di Winkler, aged care isn't set up for younger people to live a full and active life.
DI WINKLER: Sometimes people have been to rehabilitation and all those gains are kind of lost because in aged care everything is done for you. Young people living in the aged care is characterised by loneliness and isolation.
NAS CAMPANELLA: And she says although there has been progress in getting young disabled people out of aged care, it's not fast enough, and the system needs improving.
DI WINKLER: The National Disability Agency needs to step up and match the efficiency of the aged care system in the timely allocation for funding for housing and support.
If you're an older person in hospital it takes three days for the aged care system to sort out your eligibility. The NDIA takes 60 days.
The risk is that people will still enter aged care unless we really fix the system.
NAS CAMPANELLA: In a statement a spokesperson for the NDIS Minister Linda Reynolds says the Government is committed to meeting its target of ensuring that by the end of 2025 no young person under 65 lives in aged care unless there are exceptional circumstances.
It says an additional $35 million has been allocated to provide support for people to leave aged care and that in the last financial year there was a 43 per cent reduction in the number of younger people entering the system.
KIM LANDERS: Nas Campanella reporting.