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News- Page 4
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News : Autism cases exaggerated by paediatricians
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Posted by Sylvia on Wednesday, June 02, 2004 (09:51:05)
ABC Net.au 18/05/2004
By Petria Wallace
ELEANOR HALL: Now to what could be a frightening statistic for parents. There's been a 200 per cent jump in the diagnosis of autism in Australia over the past decade. Queensland is the state with the sharpest increase, and a new study out today may hold the key to understanding why.
A paediatrician from the Royal Children's Hospital in Brisbane surveyed the work practices of the state's paediatricians and paediatric psychiatrists.
A study released today shows that 58 per cent of the doctors admit they've been exaggerating the diagnosis of autism in children, to help families get access to assistance at home and in schools.
In Brisbane Petria Wallace reports.
PETRIA WALLACE: The diagnosis of autism covers the full spectrum, from severe, where children are unable to speak or communicate, to mild, where a child may attend a normal school but still experience serious behavioural and emotional problems.
If you're an Australian child you stand a one in 500 chance of developing what's called an autistic spectrum disorder. Except if you live in Queensland, where over the past few years the odds have jumped to one in 100.
In her study paediatrician Catherine Skellern found that more than half of the specialists she surveyed are in some cases exaggerating the diagnosis of autism. She says the families of children with behavioural problems are desperate to get help at home and at school.
Doctor Skellern says the paediatricians and paediatric psychiatrists they go to find themselves in a predicament.
CATHERINE SKELLERN: When I asked various numbers of statements to try and tap into the specialists' attitudes towards this very issue, 82 per cent of the medical specialists specified that they agreed with the statement that the systems actually foster the use of deliberately inaccurate diagnosis.
66 per cent of them felt that it was often the only way that they could obtain needed services for children. And 64 per cent, almost the same proportion, recognize that the practice of deliberate misrepresentation is dishonest.
So they recognize that the practice exists, they are uncomfortable with it, but felt that the reasons that the practice existed was outside of their… it was in relation to the systems outside of health.
PETRIA WALLACE: By 'systems', Dr Skellern means, the Federal Government's Family Carer's Allowance, paid by Centrelink, and the Special Education Assistance, provided by the Queensland Government.
In both cases, specialists say the criteria is rigid, and cannot deal with the complexity of individual cases. In other words, the doctor feels she or he has to exaggerate the child's diagnosis to guarantee the family will qualify for assistance.
Dr Skellern defends this practice, but says she is concerned about the implications of misdiagnosing the patient.
CATHERINE SKELLERN: Okay, it achieves… helps the child in the short term, but we now have one in 100 children in Queensland receiving these diagnoses and I guess I feel uncomfortable with children who may have actually acquired diagnoses of things they actually don't have, because we don't really understand what the long-term consequences are for those children.
PETRIA WALLACE: The Australasian College of Physicians is responsible for overseeing the conduct of paediatricians.
President Don Roberton says although he's concerned by today's revelations, the doctors are only doing the right thing by the children.
DON ROBERTON: I am concerned, and I'm concerned on two aspects. One, that it does occur, but I am much more concerned that they are having to resort to this mechanism to provide the services, which they feel so strongly are needed for children.
PETRIA WALLACE: What about doctors giving a label to children who shouldn't necessarily wear that label?
DON ROBERTON: Interestingly, often the label is one that is community based, and then there is the request for the medical practitioner, in whatever branch of medicine they practicing, to either confirm that label or deny the label and say that there is some other underlying alternative disorder which is present.
PETRIA WALLACE: But should doctors, who are the professionals in this setting, bow to pressure from parents?
DON ROBERTON: No, they need to act in the best interests of the child, and the context of the family in which the child lives as well.
PETRIA WALLACE: And do you believe they're doing that?
DON ROBERTON: I believe they are advocating strongly for the needs of children, and when it comes to finding further resources for them, they are having to use stress (inaudible) which professionally sometimes they would prefer not to use. But those are currently the only available resources.
ELEANOR HALL: Professor Don Roberton is the President Of The Royal Australasian College Of Physicians and he was speaking there to Petria Wallace.
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News : Drug firm threatened us, say MMR families
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Posted by sylvia on Friday, May 28, 2004 (23:56:28)
The Guardian 12/05/2004
By James Meikle
Families who claim the MMR vaccine has caused illnesses in their children have accused one of the three drug companies involved in the case of trying to intimidate them into dropping legal action.
Lawyers for Merck & Co wanted to know whether the families were going to pursue their cases now that public funding, already worth £15m, was likely to be withdrawn. They said the costs of the action had been "considerable" and children and their parents would be "at risk of facing a liability for any further costs Merck continues to incur in defending the claim".
About 500 families are thought to have received letters from the company's lawyers, Lovells, saying Merck would not seek any order for costs as long as they "give an undertaking to us ... not to issue any further proceedings arising out of vaccination with MMR vaccine against Merck in this or any other jurisdiction".
Jackie Fletcher, of the campaign group Jabs, said she knew of two families who had already given such under-takings. "It is very threatening and intimidating. It has already put the fear of God into parents. They are just going to hear alarm bells and think, 'the cost, the money, my house'."
Lovells said it had informed the families' solicitors about what they were doing. "We were not endeavouring to pressure people to act one way or another," said a spokeswoman.
The company had simply been stating "the potential cost liability if they cease to be legally aided".
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News : Couple threaten legal action over severely autistic son
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Posted by sylvia on Thursday, May 27, 2004 (17:14:01)
AWARES 09/05/2004
NEWCASTLE-UNDER-LYME, UK: A British couple are threatening legal action after their severely autistic son was denied specialist care during a three-year battle with social services.
Jacqueline and David Golightly have received an unreserved apology from Staffordshire County Council because 11-year-old Jamie was so badly let down.
Senior managers say the youngster - who needs 24-hour supervision and cannot eat, play or go to the toilet alone - "clearly" fell victim to "a poor service" made worse by the conduct of his former social worker.
The admission comes after his parents lodged a 17-page complaint over respite support he missed out on after they asked for expert help in 2001.
The couple, of Westbury Park, Newcastle-under-Lyme, have been driven to despair and say that they were left to cope alone with Jamie while struggling to handle family tragedy and illness.
Mrs Golightly, aged 35, was diagnosed with a pituitary tumour last year and also lost her brother-in-law, Robert Love, aged 38, to lung disease. Her niece, Imogen, is battling leukaemia and in 2001 Mrs Golightly discovered her dead baby's organs had been removed during the scandal at Liverpool's Alder Hey Hospital in 1988.
The family say they have been desperate to find respite care for Jamie to help him and his 14-year-old brother, Tom, cope with the constant demands of his condition, which is compounded by a severe learning disability.
But they claim that the conduct of social services and their former social worker means that Jamie was denied the chance to spend time with foster carers on days out, weekends away and breaks from his family because referrals were never followed up. They missed out on special funding, known as the direct payment scheme, to spend on carers to support Jamie at home because the social worker ignored referrals from other health professionals.
They were also denied the cash because the social worker falsely told his managers that the family were not interested in receiving financial help. He claimed this emerged during a visit to their home in July 2002 - on a day when they were on holiday in Wales and Mrs Golightly was in hospital after breaking her foot. When they asked to see Jamie's file, the social worker's manager noted it appeared to be three years out of date. The social worker has now left the Staffordshire County Council.
But in a letter of apology to the family, the council's assistant director for children and families, Richard Jarrett, says: "I would wish to reassure you that had this social worker still been in the employment of social services, his conduct in this matter would have been the subject of formal disciplinary procedures and, furthermore, should he ever attempt to re-enter the council's employment then I would not be prepared to re-engage him."
At the end of his letter, Mr Jarrett adds: "Finally, please again accept my sincere apology for the distress and pressures caused for you by the poor service you have received."
However, Mrs Golightly, who has suffered depression during the ordeal, is now threatening legal action to claim back the funding Jamie has missed out on over the last three years."We have had an apology but I want to take it further.And I just want to wipe my hands of them," she said.
"We are quite proud people and don't ask for help.We don't want to beg, but want to be able to make sure we can keep Jamie at home with us and he can have as normal a life as possible.We have been completely let down and we have no faith in social services any more."
The family now has a new social worker and has finally been offered the direct payment scheme to fund extra care for Jamie. However, they are refusing to accept the offer because it involves them hiring carers and becoming "employers" - a responsibility they fear they will not cope with without proper support from social services.
Instead they want the authority to increase from 10 hours a month the amount of time an expert from the mental health charity, MENCAP, comes to their home to help look after Jamie.
Mrs Golightly added: "We have felt depressed, resentful, angry and just so isolated. At the end of the day, Jamie is disabled, but he's still our little boy."
A council spokesman said that the under-fire social worker had not been formally interviewed about the complaint because he had left, but "on the balance of probabilities, we accepted the allegations were proven."
The spokesman added: "They were offered direct payments for the future. If they are not happy with the resolution, they can take it further within the county council. There's a three-stage complaints procedure and they still have further recourse. We would hope they would take it further with the council before they consider any other action."
News of the Golightlys' difficulties comes after the local newspaper, The Sentinel, recently highlighted several cases of families struggling to find adequate care for relatives suffering from autism and Asperger's syndrome, under-diagnosis and evidence of a post-code lottery for treatment.
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News : Autistic pupils under attack
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Posted by Sylvia on Tuesday, May 18, 2004 (09:35:58)
NY Daily News 02/05/2004
By Heidi Evans
Like any mother who watches her child happily climb aboard the morning school bus, Sarah Ganz breathes easy when she waves goodbye to her son, knowing her 7-year-old is in safe harbor for the day.
So when unidentified hoodlums began hurling bottles, rocks and refuse from the Fort Hamilton Parkway elevated subway platform just 10 feet from the Shema Kolainu School for Autistic Children, parents and staff were terrified for these most vulnerable of children.
"These children can't speak up for themselves; they can't even let you know that something scary has happened during the day," said Ganz, whose son, Sol, was diagnosed with the severe neurological disorder when he was 18 months old.
"He doesn't even understand that the world can be dangerous," she added. "He is not aware that people can be cruel. He is used to being taken care of, people loving him and looking out for him."
Trouble began at the Brooklyn school in June 2002, when vandals started using the school as target practice as the train headed for Coney Island sped by.
From April 2003 to January, eight windows were damaged by thrown objects, according to the school's principal, Joshua Weinstein. On two occasions, he said, garbage tossed from above struck pedestrians on the sidewalk below. Luckily, no one was seriously hurt.
During Weinstein's sometimes-frustrating dealings with the city to address the problem - transit officials suggested the school put gates on its windows - teachers, would clutch each child's hand and quickly escort the children one at a time to and from the bus, or to play in the park across the street.
Chanie Stolik, a 22-year-old teacher, said an empty Snapple bottle shattered on the ground near a co-worker.
"It was frightening," Stolik said during a recent visit by the Daily News to a classroom, where she and five other teachers were enthusiastically working one-on-one with a half-dozen 7- and 8-year-olds on their colors and puzzles.
"The holes in the windows were the scariest. We thought at first they were bullets," said Stolik. "Some of the kids would look up, say nothing, and keep going."
Happily, the high anxiety parents and school staff felt was dissipating last week as city work crews put the finishing touches on an 8-foot-high, 120-foot-long wall that completely obscures the three-story brick school - and the sidewalk below - from the station platform above busy New Utrecht Ave.
"The worry was all day before this wall was put up," said Ganz, who gave Principal Weinstein high marks for his measured handling of a trying situation.
"The parents of autistic children have enough stress in their lives. My son didn't know to feel fearful, but I experienced double because I was nervous for him."
"We put a lot of effort into our son," said Ganz, noting that he has made great strides at the well-regarded school, which has 50 students and a waiting list. "We try as much as possible to teach him new skills every day, involve him with siblings and neighbors.
"He's a very big challenge, but we love him so much, we try our best to do everything we can for him."
Ganz said she and parents like her would be lost without a school like Shema Kolainu, which means "Hear Our Voices."
"All I can say is I'm happy the right steps were taken," she said. "We can count on them."
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News : Asperger's sufferer set to be released from Broadmoor
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Posted by Sylvia on Tuesday, May 18, 2004 (09:12:47)
The Telegraph 02/05/2004
By Daniel Foggo
A man held at Broadmoor Hospital for the criminally insane since he was a teenager despite having no mental illness and no convictions has finally been earmarked for release following a campaign by The Sunday Telegraph.
Piers Bolduc, 28, who has been in Broadmoor since he was 19, has Asperger's syndrome, a mild form of autism, which is untreatable with drugs because it is a condition and not an illness.
He was misdiagnosed as schizophrenic and sent to Broadmoor after being given inappropriate drugs that affected his behaviour. The hospital, which also detains psychopathic killers such as Peter Sutcliffe, the "Yorkshire ripper", lacks specialist care for people with Asperger's.
Last week the Government admitted that his release was overdue and that he should be out of Broadmoor "within months". Stephen Ladyman, the social services minister, told the House of Commons that there was no clinical or financial reason why Mr Bolduc should stay in the hospital.
"All the necessary clinical assessments have been undertaken and Mr Bolduc has been accepted for transfer as soon as a place [at a specialist less secure unit] becomes available," he said. "It is anticipated that this should be in the coming months."
Last November this newspaper highlighted Mr Bolduc's plight, which is understood to be shared by dozens of other patients with Asperger's at Broadmoor and Britain's other special hospitals at Ashworth and Rampton.
Mr Bolduc was incarcerated after stabbing someone with a penknife while on powerful drugs that he should never have been prescribed. He has been abused by other patients and spent months at another psychiatric establishment, locked in a cell on his own as punishment for breaking a pen.
In November, Broadmoor, which weaned him off his prescription drugs once he had been correctly diagnosed, claimed that Mr Bolduc was being kept there for clinical reasons. A week later, however, his psychiatrist disclosed that he was not being moved because of a lack of funding.
Following the publicity, however, the money has now been found to allow him to be moved to the specialist Hayes Unit, which is run by the National Autistic Society and caters for people with Asperger's.
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