Nursing homes are regarded as facilities for those in the twilight of their lives. Generally, people need to be aged over 65 to access an aged care bed.

On Tuesday the Senate will begin examining youth living in aged care after a push by the little-known Senate backbencher Linda Reynolds who, upon entering the Parliament in July last year, quietly made it her mission to draw national attention to the issue by obtaining bipartisan support to hold an inquiry into it.

Senator Reynolds said she had seen the issue firsthand through family members with physical and mental disabilities and described the situation as "distressing."

"18 and in aged care, they are too young to be forgotten," she told Fairfax Media.

"Many of the stories I have heard from younger people living in aged care are soul-destroying.

"Younger people living in aged care are not only surrounded by the deaf, dying and those suffering from dementia, but their life is also dictated by the routines and requirements of an elderly person.

"It does not need to be this way and we can do so much better than this."

The statistics and personal accounts already provided to the inquiry paint a grim picture.

Ray Jones and his wife Leona had to put their two children, Craig and Nicole, aged in their 20s into a nursing home after they were diagnosed with Kufs disease – a progressive neurological disease that results in the slow deterioration of the nervous system.

"Nursing homes are great places if you're in you're eighties and on the slippery slide to meet your maker but when you are a young person it can be a living hell," Mr Jones says in a YouTube video highlighting his family's plight.

Leona Jones wrote in her submission to the Senate that they promised their children they would never put them in aged care but in the end had to "betray" Craig and Nicole because their disease was so rare it meant there was no support available.

"Our son was frustrated and angry, he was a young man living among the elderly with dementia.  We actually bought him a punching bag at one stage as a way for him to channel his frustration," Mrs Jones wrote.

By the time Craig and Nicole could move to a shared supported accommodation house, Craig had become institutionalised and reluctant to move.  He eventually followed his sister to their new home and lived there for 13 months before his death three years ago. It was his wish to die in his own home and not in hospital, something the move made possible.

Leona Jones says they should never have had to consider aged care for their young children.

"I am appalled that after 12 years of having children in care there are still young people living in nursing homes.  I would walk over hot coals if I could prevent this.  There is no place for young people in nursing homes," Mrs Jones told the Senate.

The Summer Foundation is an organisation dedicated to stopping young people from being forced to live in nursing homes because they face social isolation and "deep and persistent disadvantage". The organisation's submission to the senate inquiry says it has worked with people who were admitted to aged care in their teens or early 20s and remained there for more than 20 years.  Once placed in aged care, "it is difficult to move them out," says the Foundation.

93 per cent of younger people in aged care receive the Disability Support Pension but paid 85 per cent of their allowance to pay for their bed meaning they have little left over to spend on anything else.  More than half of the young people in aged care homes receive a visit from a friend less than once a year – or never.

But there is hope that the National Disability Insurance Scheme will be an "essential part of the solution" to the problem.  Younger people in aged care will qualify for funding under the NDIS but the Summer Foundation says the lack of "affordable and appropriate housing options" remains the major obstacle, "even with the additional resources available."

Mitch Fifield is the minister responsible for overseeing the rollout of the National Disability Insurance Scheme.  He told Fairfax Media the NDIS will help more people with disability find "a better place to call home", "whether it be through home modifications, or personal attendant care that meets their needs".

"The government looks forward to the report of the Senate inquiry, which will be a valuable input as we seek to learn the lessons from the NDIS trial sites and make adjustments before moving to full nation-wide rollout," Senator Fifield said.  Senator Reynolds added: "It is also my hope that as legislators we can find a new approach for all Australians living with complex needs, so they are treated with respect as individuals, not simply defined by the nature of their disabilities."

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