Source: The Bulletin [letters]

"...Last week's Bulletin article, Broken Bodies, Broken Spirits, provoked an outpouring of letters from readers. This is what they had to say..."

More letters from our readers on disability funding.
Broken bodies, broken spirits 26.10.04

My sister, Jen, was featured in your article. The disability and health services in this country are on the decline, and it's not until you are faced with something similar to what happened to my sister that you realise how powerless you are to help. Aged and disability funding should not be grouped together. People with disabilities are so often overlooked because they do not have a voice, and their families get tired of fighting. We just want support. I paid nearly $10,000 in taxes this year and when I hear my parents talking about the costs of keeping Jen at home, or I hear my mother begging for one week's respite, it breaks my heart. The government needs to start fixing problems that ordinary Australians all use and need - our health system. It's a big ask, but I cringe to think where it will be in 20 years if we don't.
Aneta Richards, Nowra NSW

Having worked in the disability field for many years, I have found the system to be as bad as the article pointed out. The fact that government departments continue to argue while individuals and families struggle to survive is deplorable. Many of these people do not have a voice and many families are exhausted from their daily efforts to meet the challenges of a disability. Thank you for raising these issues - now if only the politicians would take the action one would expect of a just society.
Lee Nabben, The Basin, Vic

What angers me is that, because the state and federal governments can't decide who pays, disabled people have basically no help and support. My question to the government departments involved is: how quickly would you react if the taxpayers couldn't decide whether or not to pay you your wages? Two, three, 10 years? Somehow I don't think so.
Debra Atwill, Gordon, NSW

Politicians will continue to ignore people with disabilities and their families if they keep taking no for an answer. They need to speak up more and speak out. Don't be sad, get mad. Otherwise politicians will continue to ignore people in need.
Tanya Hornberg, Roma, Qld

Your article was excellent. What a pity it will be ignored by governments, just as most other such attempts have been. My interest in the matter follows a riding accident, which left me able to move only my head, and I am restricted to activities which can be performed with a mouthstick. My 24/7 carer is my wife, although we get three hours of respite per week.

It was frustrating to listen to the promises made during the recent election campaign, including the many billions of dollars in tax cuts to those on the highest incomes, yet hear very little promised for those in need. The division of help between federal and state governments is ruthlessly exploited to avoid actually achieving any worthwhile improvement.

When Christopher Reeve was in Australia recently, the NSW government promised another 100 places in the attendant care program which was welcome. The tragedy comes when comparing the 100 places with the thousands that need help. One of the few direct-help schemes provided by the federal government provides very limited help for continence aids which can be very costly for those on tiny incomes. Despite the need for this to be increased, that government couldn't find even an extra dollar for this scheme.
Heaven forbid that parliamentarians should suffer a tragedy to a family member, but perhaps only when they do will their efforts be turned from hiding the need to actually solving the problem.
D. Ireland, Armidale, NSW

I am 34 years old with a back injury and bipolar disorder. It scares me to think that when I am a lot older and my illnesses get worse, I may not be incapacitated enough to get carer's help as there isn't enough to go around today. It's bad enough having to live with a disability, but it is worse trying to survive on a measly fortnightly disability pension.
Rochelle Steele, Shepparton, Victoria

The consistent blame-shifting between state and federal governments is nothing but a con, deflecting from the daily grind many parent and carer groups face as their lives are dictated by routines and inflexible time frames. For them it matters not which side is right or wrong; what matters is whether support systems required for the provision of care for their son or daughter will be available. The number of services needed for the enormous range of disabilities can be overwhelming for any government department to address. However, advocate groups have all the expertise required to advise them of the most urgent needs in the community.

The double whammy is that nursing homes have major problems in recruiting appropriately qualified staff, due to pathetic wages and the enormously hard work required. The acute shortage of nurses is driving the industry to accept lower qualifications, which questions if the industry is really serious about their standards of care. Younger people with disabilities are only in nursing homes because the complexity of care required is beyond the capability of families and community services, so why are we downgrading the standard of caregivers?

Individual disability action groups fight for their specific needs, often at the expense of others. This is not to say that they are wrong, but why should there be differentiation when the need is so great across all disabilities. We all need to pull together, get political and clearly articulate what is required. Do we really have any other options than to target political parties? I don't think so.
My daughter has an intellectual disability, and when she was a very sick baby with uncontrollable seizures, I was advised by doctors to "put her away". She has just celebrated her second wedding anniversary. Her husband has an intellectual disability and also requires support. I am immensely proud of what she has achieved against all odds. I also have a brother who has Down syndrome, and as both our parents have passed away, he also shares a big part of our lives. Some people may think this is a burden. Please don't. I consider myself extremely privileged to be part of their lives. They motivate me to take up the fight no matter how big or small. They have enriched my life more than I can adequately express.
Johanna Marr, Dubbo, NSW

I feel the pain. I'm a single, disabled mother and one of my children is disabled with a rare chromosome abnormality who requires tube-feeding every three hours. I am also the carer for my niece who has Asperger's syndrome. My life has been a horror - riddled with child abuse and, until a few years ago, domestic violence. I live day in, day out yet I'm expected by society to keep my mouth shut and keep going. Please, where will the madness end?
Name withheld, Vic

The Brain Injury Association of NSW is a peak non-government organisation for people with acquired brain injury and their carers in NSW. For years we have struggled to get recognition for people with acquired brain injury and their carers by the Dept of Ageing, Disability and Home Care. We are continually told they do not recognise brain injury as a disability so we do met their funding criteria. But, it is an acquired physical, cognitive disability. DADHC says it is a health issue and should be funded by the Health Department. Brain injury is a community problem and rehabilitation is done by health departments, once that is completed it is up to the community sector to fund continued support of people with a disability.

Figures from Australian Institute of Health and Welfare estimate that in one year about 69,400 people in NSW alone sustain some form of brain injury; many will never get help. Many are in our jail systems, many are homeless and many are in their family homes in crisis. The federal and state governments have to recognise that brain injury is a growing disability. It should be supported like any other disability. Brain injury can be the invisible disability as sometimes there is no physical disability along with the cognitive injury.
www.biansw.org.au