FRAN Murphy's brown eyes follow her daughter Renae wherever she goes. Most of the time, it's difficult to know what the mother of two is thinking, but there are also moments when her feelings are clear.

"She doesn't really have any output yet, but she does smile when she's happy and she does cry when she's sad," Renae Caulkett, 32, says. "I can also tell when she's in pain. She grimaces in pain sometimes, but the problem is we can't find out where her pain is coming from because she is only just starting to learn how to blink to say yes."

It has been five years since Murphy suffered an aneurism followed closely by a stroke at the age of 51. The sudden bleeding in her brain left the personal carer effectively trapped inside her body. Murphy has what doctors refer to as "locked-in syndrome" — a rare neurological disorder characterised by complete paralysis except for the muscles that control eye movement. She can still think and reason, but is unable to speak or move.

The tragedy has been compounded by a cruel piece of timing. At 51, Murphy was one year too old to qualify as a "prioritised" patient under a State Government program aimed at rehabilitating people with acquired brain injuries suffered outside their workplace or off the roads.

The Slow to Recover program focuses on those aged five to 50 whose injuries are not covered by the Transport Accident Commission or WorkCover insurance schemes, leaving families such as Caulkett's no option but to lobby the Government to include their loved ones in the scheme.

Despite countless requests since 2003, Murphy has not been given access to the program.

The family was given a tantalising insight into the powers of rehab, when Murphy had three months' treatment at St Vincent's after her stroke. There is one particular moment they cherish.

"One day someone asked Mum if I was her daughter and out of the blue she said 'yes'," Caulkett says. "When they went on to ask her my name, she said 'Nae'."

Caulkett says her mother also seemed to become more alert after spending time with a younger girl during her treatment: "I guess that just shows what can happen."

Despite the encouraging progress, Caulkett was told her mother could not stay on at the hospital. She was to be placed in a nursing home and at the end of a long waiting list for the Slow to Recover program.

Of all the trauma that year, nothing matched the day Caulkett took her mother to her new home.

"She always said 'don't ever put me in a nursing home'," she says. "I guess people always say that to their family members, but not having a choice was absolutely horrible. Having to take her there and leave her with all those old people for the first time was probably the worst day of my life. I think she was aware of it too."

At first, Caulkett didn't want her mother to attend any activities that would expose her to the grey-haired people living around her in their twilight years. But with time, Murphy has ventured out of her three-by-two-metre room to spend more time with her neighbours.

Says Caulkett: "She goes out to the dining room for lunch and sits through the activities every now and again, but I just think that if she was with younger people she would be much happier. There was one Christmas lunch with the residents where she cried, and as soon as I took her out of that situation, she was fine."

With small and sporadic amounts of government funding and her own money, Murphy receives about nine hours of therapy, including physiotherapy and speech therapy, a week. But it has not been enough. Without consistent work, her crippled fingers started growing into her palms last year.

"Because she doesn't have daily therapy, her hands went into a tight fist and her fingernails were growing into her hands," Caulkett says. "It could have caused an infection, so they had to perform surgery on them, but at one stage they were fearing that she might have to have them amputated.

"Luckily they could fix it by cutting the tendons inside her hands, but it probably could have been prevented. There was a student occupational therapist at the nursing home for a while who gave Mum daily therapy for about six weeks, and we found that she benefited from that. Her hands were more relaxed and she was letting go more."

Murphy is one of about 6500 people under the age of 65 living in Australian nursing homes because there is nowhere else for them to go. While the federal and state governments have committed hundreds of millions of dollars to move such people into more appropriate accommodation in recent years, Murphy has barely seen a cent of it.

The federal and state governments announced an extra $244 million to tackle the issue in 2006, but again, the program prioritised those aged under 50.

This arbitrary cut-off point has created what Dr Bronwyn Morkham describes as "the forgotten lot". The director of the Young People in Nursing Homes Alliance says although much has been made of people in their 20s, 30s and 40s in nursing homes, Fran Murphy's experience of languishing at the bottom of waiting lists is remarkably common because most of the younger people in nursing homes are aged between 50 and 65.

"Many of these people aged over 50 have waited in nursing homes for many years for someone to do something for them. They are the least likely to receive the benefits of funding. It's not their fault that they have aged beyond the cut-off point," she says. "It doesn't matter if you're two, 22, 42, 62 or 102, you should be able to access the support you need."

In Victoria, there were more than 1600 people aged under 65 in residential aged-care facilities last year. Of that number, 649 were aged 50 to 59 and 752 aged 60 to 64.

Tom Worsnop, the manager of people with acquired brain injuries at Melbourne City Mission, has also seen the heartache caused by what he calls "age discrimination" in the system.

"It's common for people like Fran to miss out on both the Slow to Recover initiative and the My Future, My Choice program. For anyone we deal with in a nursing home aged 50 to 65, this is a common experience," he says.

Worsnop says it is particularly difficult for case managers to watch the difference between their clients' separate paths. Some people, he says, make extraordinary progress with the help of these rehabilitation programs, which only highlights how much everyone, regardless of age, deserves access to them.

"The difference between someone receiving the benefits of a program and someone who doesn't receive it can be quite stark. One of the great things about our work is that people make progress. We can see that with the appropriate use of therapy you can get incredible breakthroughs in people who have basically been written off as someone who simply won't recover," he says.

"The reward of being part of that is fantastic, but the other side of the equation is really, really frustrating.

"I know there are limited resources, but it's artificial to say someone over 50 has less needs, especially when you consider that person's social role as a mother or father."

Renae Caulkett doesn't feel hopeful about her mother's future.

"If it keeps going this way, she will never get on the list. It's probably too late for Mum, but the Government needs to realise this is not right. It should provide people like her with a facility that meets her needs," she says.

The State Government pumped an extra $13 million into the Slow to Recover program this year and an extra $10 million into the My Future, My Choice program. Next week up to $1.8 billion will be up for grabs when federal and state ministers meet on Friday.

But with about 800 people suffering catastrophic brain injuries and being added to the waiting lists for government programs every year, the Federal Government has been urged to rethink its approach to the problem. To meet the growing demand, some lobbyists have advocated a universal disability insurance scheme to cover the cost of care.

One proposal drafted last year at a national summit of health-care groups, including the Australian Medical Association, suggested a $20 levy on motor vehicle registrations to cover the costs for those who are injured in assaults or recreational accidents.

Federal Parliamentary Secretary for Disabilities Bill Shorten will attend Friday's meeting and says he is "incredibly interested" in an insurance-based solution to problem. He says he has spent the past seven months investigating its economic viability.

Whether the Rudd Government goes ahead with such a plan remains to be seen, but one thing's for sure, Fran Murphy will be watching.

Julia Medew is health reporter.