Treated like naughty kids

Sun Herald, Sydney NSW Australia, November 2, 1997

MP’s will vote soon on whether the NSW Guardianship Board, under attack for “playing God”, should sanction medical experiments on people under its care.
Jacqueline McArthur reports.
It was a rare holiday, taken on doctor’s orders. And Jack Skuse selected a trip to Murwillumbah for what was to be his final journey with his beloved wife of almost half a century. Where better for Mary, 73, a mild dementia sufferer, to take a much needed rest?
Besides she could visit he brother, who was terminally ill in the local hospital. But the couple had not even unpacked after the grueling 600km (960 miles) journey from Sydney before an embarrassed young policeman tapped the retired boot maker, 82, on the shoulder and broke some alarming news.
The NSW Guardianship Board had assumed responsibility for Mary’s case. The couple had failed to get its permission for the trip, so they were ordered to return to Sydney under police escort, like naughty children who had run away from school.
The board took control of Mary’s life eight weeks later. And for four years, the couple was forbidden to take overnight excursions. Finally, the Board ordered Mary into a nursing home. She died, alone, weighing less than 20kg (44 pounds). A doctor claimed she was malnourished
Ever since the Guardianship Tribunal was set up in 1989 to take over the lives of 11,000 people unable to make their own decisions, it has been enveloped in controversy.
The Protective Commissioner and Public Guardian – Dickensian titles for its bureaucratic office bearers – administer the Board’s decisions. Essentially, it takes responsibility for the lives of those under its care. It has $600 million of investments and charges fees for the service.
Bewildered relatives and carers, many of whom have struggled for decades to deal with sick loved ones, suddenly find they cannot get access to money. Sometimes, they cannot even visit. It is a highly charged breeding ground for suspicion and frustrated rage.
Now, as the Federal and State Governments consider extending guardianship powers, calls for a full investigation are becoming louder. The 800 members of the Carers of Protected Persons Action Group (COPPA) are calling for a royal commission.
Their claims come as the Board faces its biggest challenge: a predicted budget blow-out and the potential to allow medical experiments on people who cannot legally consent to anything. What worries many people is the move towards expanding the Board’s powers to include medical trials.
A recent parliamentary committee recommended the trials – which could include drug testing, surgical procedures or the fitting of diagnostic devices – despite an estimated 33 of 58 submissions warning against it.
The wording in the legislation is so loose, said COPPA’s Paddy Costa, it may mean “anything from lobotomies to vaccination or deep-sleep therapy to sterilizations”. It is a tinderbox atmosphere of emotion and threatens to become as explosive as the issue of aged care.
Costa formed COPPA two years ago after a family member became involved with the Board. She is the custodian of hundreds of letters which arrive daily from concerned carers. Emotional phone calls and piles of faxes describe very human tales of sacrifice and suffering, ugly family feuds, recriminations and exploitation.

Among the cases she (Costa) cites:
A 32 YEAR OLD injured in a car accident as a teenager and later awarded $415,000 was left with $615 after taking his case against the Office of the Protective Commissioner (OPC) to the Supreme Court.
More than $330,000 went to his wife of five months in a divorce settlement he had repeatedly refused to sign but which was approved by the OPC. Finally he sought a barrister to fight the Board’s decision and this year was released from its care.
He lost his house and said he was forced to live on $120 a week. I was a 16 year old who had just come out of a six month coma when a lawyer convinced me that they (the OPC) would look after me”, he said this week.
MRS “X” recently died from a cerebral hemorrhage which her friends believe may have been caused by the stress of dealing with the Board. Her son had been brain damaged after being hit by a drunk driver and he was awarded $1 million in compensation.
Mrs. “X” was forced to hire a barrister to fight for $100 a week pocket money for her son and $60 a week for herself to pay for medication, food and clothing. She was meant to receive a $450 wage for the care of her son, receive holidays and have three days respite.
“The court automatically handed over the man’s money to the Protective Commissioner, who did not believe it was in his interests to pay for his mother’s false teeth or glasses. She used super glue to hold these together”, Costa said.
A WOMAN attempted suicide after the Board decided to sell her family home on behalf of her father. After six shock-therapy treatments and hefty legal expenses she was told it had decided instead to rent the property to a stranger, although she had offered to pay market place rental price.

Costa said the Board’s handling of sensitive decisions and their effect on families should be investigated.
“These people have had to kidnap their parents from institutions to place them in suitable care; they have divorced; had nervous breakdowns and neglected their own children; gone bankrupt and split their family ties irrevocably” she said.
Costa claims accountability is a big problem. “Don’t look to the Ombudsman or the Governor for accountability,” she said. They have no authority here. You’ve got the Supreme Court Protective Division to complain to. But the same Public Guardian and Protective Commissioner’s Office is the registry for that court.
They are exempt from Freedom of Information in many areas and Section 57 of the Guardianship Act threatens jail and heavy fines for publishing and broadcasting.”
The allegations against the Board cover a range of grievances. Carers say the use of unsworn evidence in court has led to horrific ordeals in which allegations of incest, exploitation, abuse and neglect have been tendered by health care or social workers, but never confirmed.
They complain the only right of appeal against the Board’s decisions is through relatively expensive Supreme Court intervention. Many family members existing on a carer’s pension are unable to afford a barrister to defend them in court.
Carers and clients have accused the Guardianship Board of leaving them in virtual poverty, demanding exorbitant fees and forcing some to sell their family homes against what they feel would be the wishes of the protected person.
These allegations and the mistrust a number of carers harbor about the Board have added to their fears about expanding its powers to include the approval of medical trials. “We are asking for a Royal Commission and nothing less.” Costa said.
The hundreds of letters and our overwhelming evidence suggest these bodies are doing more harm to people than it was ever imagined 11 years ago.”
While trials must have only therapeutic benefits, as stated in all international codes on human experimentation, the issue brings the contemporary Australian nightmare of Chelmsford deep-sleep therapy back to the current lexicon.
“What have these people got left?” Costa said. “How could a distant bureaucrat be given absolute power over your mind and soul, and now – the last invasive action – experimenting on your body?”
The Guardianship Board, according to its President, Nick O’Neill was set up to fill a “glaring gap” in the law which left those who were incapable vulnerable to exploitation, doctors open to litigation and family disputes unresolved.
This year the Board and its associated authorities, the Office of the Protective Commissioner and the Public Guardian will make decisions for 10,000 people. The proposed controversial changes to the care of the elderly could mean up to 8,000 will be added to their client list.
Officials are braced for a fresh wave of anger from relatives and carers. “This is going to make life extremely difficult for a large number of people as we try to process the tribunals in time,” O’Neill said. “We are heading for something bigger than we could have imagined.”
The State Government-run bodies employ 300 staff and the Board holds quasi-judicial hearings, arbitrated by a select group of lawyers, health professionals and experienced community members, which determine the best interests of those brought before them. O’Neill maintained doctrinaire decisions on medical experiments “would never work in anyone’s favor.”
Regarding the COPPA complaints he said: “Carers’ concerns come at a time when they are under great stress anyway. It is a complex and heavy responsibility to decide on what’s best for the person who cannot decide for themselves.
The critics make up a very small part of the people we work with.” He said the Board must weigh the importance of protecting an individual’s privacy and “appearing to air everything for the sake of accountability.” “We have to explain to families in writing about how we made our decisions,” he said. “No other court has to do that. We have experienced people making these decisions.”
Protective Commissioner and Public Guardian, Brian Porter said many carers were too involved to see that the bodies were “acting to the letter of the legislation in making the best decisions for the people who can’t make their own. It’s our only role”.
Jack Skuse attended his wife’s funeral three months ago. He recalls with anger the holiday that first brought him into conflict with the Board.
“Even the policeman wanted us to sneak over the border,” he said. “He wanted to turn a blind eye to ordering old people not to see their loved ones. He didn’t think there was anything wrong with two elderly people going on a short holiday and neither did our doctor.”
“They hit us out of nowhere and there is nothing you can do Now she is free.”. They took absolute control over her and finally locked her up like a kid in a room. She suffered quite a bit from that.