Condemned it may be, but institutional care is vital for the disabled
Friday, September 30, 2005 (15:35:39)

Posted by sylvia

TheAustralianNews August 2005

By Prof. Judy Lumby

Lisa got the call at work. Police were outside her home, where her son was "holed up" after making yet another racket that disturbed the neighbours.

They were about to break down the front door when she arrived. Lisa is the only person Peter listens to, even though he often assaults her.

Peter has Asperger's syndrome. He's now an adult and Lisa is his sole carer. It wasn't quite as bad when he was at school, but the day came when he refused to get in the bus. Lisa couldn't physically force him to do anything. Peter's father abandoned the family long ago. Lisa's daughter moved out too, because Peter was violent towards her.

The last time (two years ago) Lisa tried to get Peter admitted to a mental health facility following a particularly violent incident, access was refused on the grounds he was developmentally disabled, not mentally ill.

Peter has since moved into community housing. But Lisa still regularly gets rung in the middle of the night because the inexperienced and often untrained staff can't manage him.

At the moment a couple are on trial over the death of their adult son, born severely physically impaired and intellectually disabled. Born without eyes, he was about to lose all contact with the outside world due to impending hearing loss.

Parents of disabled children love their children as much as anyone does. But caring for a severely disabled child takes a severe toll.

Paul Neville, MP for Hinkler in Queensland, has recently raised the plight of such families in the House of Representatives, noting the lack of respite care or financial assistance nationally.

As he put it bluntly: "If your child has a respiratory problem, you almost automatically get an allowance. But if your child's kicking the walls at home, spreading food around the kitchen, if he needs two parents to changes his nappy and if he chucks faeces all around the house, you're not eligible for any commonwealth benefit."

I well remember the days when severely disabled children were placed in institutions and disability nursing was a specialty branch taken up by registered nurses with special skills and dedication.

While institutionalisation was perceived to be outmoded, and even barbaric, parents and families could at least have normal lives.

Following the Richmond Report and the subsequent de-institutionalisation, which saw the mentally ill and developmentally disabled literally and actually thrown out on the streets, this branch of nursing faded away, despite protests by many in the profession who believed the need was great.

How right they have proved to be. Developmental disability and mental illness have increased. And in terms of funding, infrastructure and social awareness, mental health is well ahead of developmental disability as evidenced by the present Senate Select Committee on Mental Health.

Few doctors work in the area of developmental disability and in most cases medication cannot make any substantial difference.

What is needed is co-ordination of services, early diagnosis and ongoing intervention, along with adequate government funding, support for intensive tailored programs and social and psychological support for families. Those affected by developmental disability directly or vicariously need lifetime support.

Recently I asked some families why they thought their pleas for help went unheeded. They all said their whole lives and energies were taken up in caring for their children. They had nothing left over for political lobbying. If you have to be vigilant 24 hours a day, often with limited income, you have no capacity for anything else in your life. And in the main, society wants problems to go away.

Institutionalisation was once condemned because it was seen as a means to marginalise and hide away those we preferred to ignore. The present situation is worse because it parodies the past. We pretend to have embraced the developmentally disabled and brought them into our society, while all along we alienate them and deny them access to healthcare, education and employment.

As Graham Vimpani, professor of paediatrics and child health from the University of Newcastle, puts it bluntly: "The split between services provided through health systems and those provided through disability portfolios results in many unmet needs for children with disabilities and their families as agencies squabble over responsibilities in a climate of resource scarcity."

Meanwhile, individual potential is being lost, scarce resources are wasted and families are being ripped apart by a system which prioritises medical miracles, short-term visible results and silences those who are disadvantaged and disempowered.

Note: Professor Judy Lumby is executive director of the College of Nursing.