"The forgotten ones"
http://www.theaustralian.news.com.au/story/0,20867,20418171-23289,00.html The forgotten ones
Thousands of young disabled patients must spend their lives in aged care homes. Kellie Bisset reports on attempts to get them out
September 16, 2006
AUSTRALIA'S health and disability systems failed 26-year-old Grayden Moore. Two years ago a skateboarding accident left the promising young tennis player with a serious brain injury. And although hospitals in both Queensland and NSW were able to offer him lifesaving surgery, no one seemed to know quite what to do with him next.
As a result he ended up in a nursing home, unable to speak and barely able to move, and facing a bleak future surrounded by sick and dying patients three times his age. At one stage doctors even suggested he should be left to die peacefully - but his family refused to give up.
Nearly 18 months later, Grayden Moore can talk, walk with a frame, and chat over the internet. While not back to his former sporting standard, he's already shown an aptitude for wheelchair tennis - and even completed in last month's annual City to Surf fun run in Sydney, albeit in a wheelchair. He plans to do the run again next year - but without wheels.
His progress has delighted his mother Laurelei, a former nurse, and his father Derek, a GP, who describes his son's condition as "a slowly evolving miracle". But the only reason Grayden has come this far is because his parents fought the fight of their lives to get him out of the nursing home and into Weemala, an extended care service for disabled patients run by the non-profit Royal Rehabilitation Centre in Sydney.
After two failed attempts, and being told repeatedly that aged care was their only option, the Moores scored a victory over the system by refusing to continue paying for his nursing home bed, forcing his place to lapse.
"It has been an absolute nightmare that nearly tore us apart," Laurelei says. "You think 'they must be able to do something, we have paid our taxes, we have private health cover, he will be looked after' - and he absolutely was not. My husband's a doctor, my brother's a doctor, two of my children are doctors . . . and nothing helped."
Originally considered ineligible for rehabilitation, Grayden languished in a nursing home for several weeks after his surgery, sedated with high doses of anti-epileptic medication. This sent his body into a toxic coma and he was rushed back to hospital.
After narrowly surviving that trauma, he was sent back to the nursing home. Within two months his weight plummeted to 49kg. The home agreed to send him to the Royal Rehabilitation Centre for assessment.
"He was dying from malnutrition," Laurelei says. "From then on he really started improving very quickly . . . but after a few months it was suggested he go back to the home. We said 'No, he's not'. He nearly died twice because of that - it is a totally unsuitable place. The third time would have been the end of him."
According to Royal Rehabilitation Centre CEO Peter Williamson, Grayden's amazing recovery could be repeated many times if there was enough money in the system to assist people with an acquired brain injury on the long road to rehabilitation.
Instead, a lack of funds means more than 6000 people under 65 - including some as young as nine - languish in nursing homes for the rest of their lives, with little or no specialised care and no chance of re-integrating into the community.
Some of them have an acquired brain injury, some have neurological conditions such as multiple sclerosis and others have physical disabilities including spinal injury.
Many of those injured in catastrophic accidents fall outside the compensation system, which only covers motor vehicle accident victims, so they can't afford their own care.
For those patients with acquired brain injury, recovery can take two or more years. But, depending on which state they live in, inter-departmental buck-passing means they might be funded for a few months of rehabilitation via the health department and receive no long-term support from poorly funded disability services. So they end up in federally funded nursing homes.
Worryingly, the numbers of young people in this predicament are growing. The National Alliance of Young People in Nursing Homes estimates there will be more than 10,000 young people living in aged facilities by 2010.
"It is a hopeless system," Williamson says. "Our organisation has been advocating for at least six or seven years for a whole-of-government approach to this."
At last though, things seem to be moving. In February the Council of Australian Governments (COAG) committed $244 million over five years to cut the numbers of young people living in residential aged care. Following last year's Senate Inquiry into Aged Care, which urged action in this area, COAG has made assisting those under 50 a priority.
The funds will help set up alternative long- term care options, and help prevent young people entering nursing homes in the first place. Many have welcomed this as a great start, but experts warn it's crucial we don't mess up a golden opportunity by throwing dollars at inappropriate solutions.
"It could go either way," Williamson says.
"It is about being very smart and innovative to allocate these funds that will provide long-term solutions, not short-term quick fixes."
For Bronwyn Morkham, this money has been a long time coming. "This issue has been around for 40 years and nothing has been done." The national director of the National Alliance of Young People in Nursing Homes, she agrees the funds are a good start, but the unmet need is "chronic and astronomical".
"It is one of life's ironies that we spend so much money saving lives then we throw them on the scrap heap," Morkham says. "We have been remarkably fortunate to have access to the latest medical technologies . . . but we have been too successful for our own good. The growth in demand for long term care has been so astounding people have not seen it coming, and the system has been caught out."
Apart from appropriate medical care and rehabilitation, argues Trevor Parmenter (see column this page), it's quality of life, and a reason to wake up each day, that many young nursing home residents aren't getting.
An article published in Australian Health Review a few years ago (2002;25(3)) says the medical literature shows that proper social support aids rehabilitation.
"It is relationships and friendships and interaction with other people that are the basis for a good quality of life for them," Parmenter says. "We judge our society by the way it reaches out to these people. Until this (COAG) initiative, we really put them away and threw away the key."
Parmenter is director of the Centre for Developmental Disability Studies, based at the Royal Rehabilitation Centre.
He says the whole concept of effective rehabilitation is moving from bed-based to home-based support, and he's hoping the new funds might help patients move back into the community.
Adeline Hodgkinson, director of Sydney's Liverpool Hospital brain injury rehabilitation unit, says there are examples of different community care models that already work well - so there's no need to reinvent the wheel.
She says care models can include properly supporting families to provide care (though this happens rarely); providing 24-hour paid carers; offering daily, but not full-time care; group homes with a shared carer, or collections of individual units that pool care resources. Even blocking off sections of nursing homes themselves for young people has been flagged as an option.
The alternative is being transplanted from your own peer group to another, almost alien, generation. "Some young people might share a room with multiple people who come and go and die next to them and that might occur for 10 or 20 years, depending on how long you are there," Hodgkinson says.
The recent NSW state government announcement of a new 10-year plan for disability services, including $1 billion over the first five years, has raised hopes that along with the COAG plan, momentum might finally be building in NSW.
However, many point to Victoria as a role model for other jurisdictions. It runs the Acquired Brain Injury: Slow to Recover program, covering long-term funding for brain injured patients without accident compensation. But Morkham says there are thousands on the waiting list and staff members are fielding inquiries from desperate families in other states.
The alliance says that every year, $372 million is wasted by keeping the frail aged in hospitals because they can't access a nursing home bed. If younger people were offered more suitable accommodation, it argues, beds would be freed up for the people who should really be there.
This "bed block" is evident elsewhere in the system. Young people also sit in hospitals waiting for rehab places taken up by patients with nowhere to move - and this delay affects their ability to recover.
Parmenter says there are also thousands of parents looking after disabled children who have never received a government service. As they age and become unable to cope, the pressure on the system to take in extra patients will build.
It seems COAG's intervention has come at a timely point, but progress is still slow. Only three states have so far signed bilateral agreements with the commonwealth to put the new funding system in place, and few, if any, decisions have been made on deciding what kind of services it should pay for.
Grayden Moore though, is an example of what can be done.
"This is the first place we have been in two years where the environment has been positive," his mother says. "The system failed us and it is failing all our young people. Grayden can't believe he was relegated to a nursing home - he was horrified by that and says thanks so much for fighting for me, and thanks for not giving up."
Thousands of young disabled patients must spend their lives in aged care homes. Kellie Bisset reports on attempts to get them out
September 16, 2006
AUSTRALIA'S health and disability systems failed 26-year-old Grayden Moore. Two years ago a skateboarding accident left the promising young tennis player with a serious brain injury. And although hospitals in both Queensland and NSW were able to offer him lifesaving surgery, no one seemed to know quite what to do with him next.
As a result he ended up in a nursing home, unable to speak and barely able to move, and facing a bleak future surrounded by sick and dying patients three times his age. At one stage doctors even suggested he should be left to die peacefully - but his family refused to give up.
Nearly 18 months later, Grayden Moore can talk, walk with a frame, and chat over the internet. While not back to his former sporting standard, he's already shown an aptitude for wheelchair tennis - and even completed in last month's annual City to Surf fun run in Sydney, albeit in a wheelchair. He plans to do the run again next year - but without wheels.
His progress has delighted his mother Laurelei, a former nurse, and his father Derek, a GP, who describes his son's condition as "a slowly evolving miracle". But the only reason Grayden has come this far is because his parents fought the fight of their lives to get him out of the nursing home and into Weemala, an extended care service for disabled patients run by the non-profit Royal Rehabilitation Centre in Sydney.
After two failed attempts, and being told repeatedly that aged care was their only option, the Moores scored a victory over the system by refusing to continue paying for his nursing home bed, forcing his place to lapse.
"It has been an absolute nightmare that nearly tore us apart," Laurelei says. "You think 'they must be able to do something, we have paid our taxes, we have private health cover, he will be looked after' - and he absolutely was not. My husband's a doctor, my brother's a doctor, two of my children are doctors . . . and nothing helped."
Originally considered ineligible for rehabilitation, Grayden languished in a nursing home for several weeks after his surgery, sedated with high doses of anti-epileptic medication. This sent his body into a toxic coma and he was rushed back to hospital.
After narrowly surviving that trauma, he was sent back to the nursing home. Within two months his weight plummeted to 49kg. The home agreed to send him to the Royal Rehabilitation Centre for assessment.
"He was dying from malnutrition," Laurelei says. "From then on he really started improving very quickly . . . but after a few months it was suggested he go back to the home. We said 'No, he's not'. He nearly died twice because of that - it is a totally unsuitable place. The third time would have been the end of him."
According to Royal Rehabilitation Centre CEO Peter Williamson, Grayden's amazing recovery could be repeated many times if there was enough money in the system to assist people with an acquired brain injury on the long road to rehabilitation.
Instead, a lack of funds means more than 6000 people under 65 - including some as young as nine - languish in nursing homes for the rest of their lives, with little or no specialised care and no chance of re-integrating into the community.
Some of them have an acquired brain injury, some have neurological conditions such as multiple sclerosis and others have physical disabilities including spinal injury.
Many of those injured in catastrophic accidents fall outside the compensation system, which only covers motor vehicle accident victims, so they can't afford their own care.
For those patients with acquired brain injury, recovery can take two or more years. But, depending on which state they live in, inter-departmental buck-passing means they might be funded for a few months of rehabilitation via the health department and receive no long-term support from poorly funded disability services. So they end up in federally funded nursing homes.
Worryingly, the numbers of young people in this predicament are growing. The National Alliance of Young People in Nursing Homes estimates there will be more than 10,000 young people living in aged facilities by 2010.
"It is a hopeless system," Williamson says. "Our organisation has been advocating for at least six or seven years for a whole-of-government approach to this."
At last though, things seem to be moving. In February the Council of Australian Governments (COAG) committed $244 million over five years to cut the numbers of young people living in residential aged care. Following last year's Senate Inquiry into Aged Care, which urged action in this area, COAG has made assisting those under 50 a priority.
The funds will help set up alternative long- term care options, and help prevent young people entering nursing homes in the first place. Many have welcomed this as a great start, but experts warn it's crucial we don't mess up a golden opportunity by throwing dollars at inappropriate solutions.
"It could go either way," Williamson says.
"It is about being very smart and innovative to allocate these funds that will provide long-term solutions, not short-term quick fixes."
For Bronwyn Morkham, this money has been a long time coming. "This issue has been around for 40 years and nothing has been done." The national director of the National Alliance of Young People in Nursing Homes, she agrees the funds are a good start, but the unmet need is "chronic and astronomical".
"It is one of life's ironies that we spend so much money saving lives then we throw them on the scrap heap," Morkham says. "We have been remarkably fortunate to have access to the latest medical technologies . . . but we have been too successful for our own good. The growth in demand for long term care has been so astounding people have not seen it coming, and the system has been caught out."
Apart from appropriate medical care and rehabilitation, argues Trevor Parmenter (see column this page), it's quality of life, and a reason to wake up each day, that many young nursing home residents aren't getting.
An article published in Australian Health Review a few years ago (2002;25(3)) says the medical literature shows that proper social support aids rehabilitation.
"It is relationships and friendships and interaction with other people that are the basis for a good quality of life for them," Parmenter says. "We judge our society by the way it reaches out to these people. Until this (COAG) initiative, we really put them away and threw away the key."
Parmenter is director of the Centre for Developmental Disability Studies, based at the Royal Rehabilitation Centre.
He says the whole concept of effective rehabilitation is moving from bed-based to home-based support, and he's hoping the new funds might help patients move back into the community.
Adeline Hodgkinson, director of Sydney's Liverpool Hospital brain injury rehabilitation unit, says there are examples of different community care models that already work well - so there's no need to reinvent the wheel.
She says care models can include properly supporting families to provide care (though this happens rarely); providing 24-hour paid carers; offering daily, but not full-time care; group homes with a shared carer, or collections of individual units that pool care resources. Even blocking off sections of nursing homes themselves for young people has been flagged as an option.
The alternative is being transplanted from your own peer group to another, almost alien, generation. "Some young people might share a room with multiple people who come and go and die next to them and that might occur for 10 or 20 years, depending on how long you are there," Hodgkinson says.
The recent NSW state government announcement of a new 10-year plan for disability services, including $1 billion over the first five years, has raised hopes that along with the COAG plan, momentum might finally be building in NSW.
However, many point to Victoria as a role model for other jurisdictions. It runs the Acquired Brain Injury: Slow to Recover program, covering long-term funding for brain injured patients without accident compensation. But Morkham says there are thousands on the waiting list and staff members are fielding inquiries from desperate families in other states.
The alliance says that every year, $372 million is wasted by keeping the frail aged in hospitals because they can't access a nursing home bed. If younger people were offered more suitable accommodation, it argues, beds would be freed up for the people who should really be there.
This "bed block" is evident elsewhere in the system. Young people also sit in hospitals waiting for rehab places taken up by patients with nowhere to move - and this delay affects their ability to recover.
Parmenter says there are also thousands of parents looking after disabled children who have never received a government service. As they age and become unable to cope, the pressure on the system to take in extra patients will build.
It seems COAG's intervention has come at a timely point, but progress is still slow. Only three states have so far signed bilateral agreements with the commonwealth to put the new funding system in place, and few, if any, decisions have been made on deciding what kind of services it should pay for.
Grayden Moore though, is an example of what can be done.
"This is the first place we have been in two years where the environment has been positive," his mother says. "The system failed us and it is failing all our young people. Grayden can't believe he was relegated to a nursing home - he was horrified by that and says thanks so much for fighting for me, and thanks for not giving up."