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News- Page 3
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Law : Parents of Autistic Student Seek Relief From Federal Court
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Posted by Sylvia on Friday, March 05, 2004 (08:30:41)
KA TV 04/03/2004
Little Rock (AP) - A federal judge is to rule on the legal requirements of school districts toward autistic students in a class-action lawsuit that could affect many Arkansas schools.
U.S. District Judge James Moody was hearing the last of testimony in the case Thursday morning. He was expected to issue a ruling at a later date.
Thomas and Dianna Bradley filed the lawsuit on behalf of their son David and other students of similar circumstances. The suit alleges that the Williford School District did not provide the legally required educational program to their son.
But the state says it did provide a sufficient education to David Bradley and others like him.
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Law : Changing rules for the disabled
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Posted by Sylvia on Thursday, March 04, 2004 (11:28:15)
The Star 04/03/2004
By Pang Hin Yue
It is an uphill battle but parents and caregivers are supporting the Bar Council’s ongoing signature campaign to end discrimination against the learning disabled in the education system.
KAMARIAH Md Amin, Susila Devi and Helen Chin are among the 15,000 petitioners who share a common agenda. They want equal rights for the learning disabled in the education system and they want the Government to be fully committed to providing resources and support. Enough of lip service, they say. Their passion and conviction come from their own painful experiences of having their special needs sons sent to schools that eroded their self-esteem and confidence.
Kamariah’s son, Basri Kamil, now 22, has Down syndrome and is a wheelchair user. Through her untiring efforts, he was among the first batch of special needs students to be accepted into mainstream school in 1989. It started off promisingly, but over time, says Kamariah, “things began to fizzle out.â€
It came to a point when her son was asked to leave the school in Subang Jaya, Selangor, not once, but five times.
“They threatened to expel him five times but I refused to budge,†recalls Kamariah.
As a former English teacher and as one who knows the system, she felt the school authority’s attempts had only exposed their prejudices towards the learning disabled. It was the memorandum, albeit non-legally binding, which she prepared as a member of the Selangor and Federal Territory Association for the Retarded Children that led to the Education Ministry’s decision in 1987 to allow the learning disabled to attend special classes in mainstream schools. Despite her efforts, Basri eventually left for another school to restore his self-esteem.
The law was, and still is, not on the side of the learning disabled and that includes persons with Down syndrome, autism, cerebral palsy, mental retardation and dyslexia. In fact, the Education Act (Special Education) Regulations 1997, discriminates against rather than protect the learning disabled.
Shocking but true, their admission to schools is left entirely to the discretion of the teachers and education officials – and not experts such as psychologists and speech pathologists – to decide who is deemed “educableâ€. All this goes against the United Nations Convention on the Rights of the Child and Article 12 of the Federal Constitution which guarantees, among others, freedom to education.
The Education Ministry maintains that the responsibility of educating children with learning disabilities in this country is shared between it and the National Unity and Social Development Ministry.
“However, most members of the community feel that the statutory responsibility for basic education of all children, including children with learning disability, should remain with the Education Ministry,†says Mettilda John of Dignity and Services, a non-profit advocacy service provider for the learning disabled.
The absence of equal rights to education for the learning disabled causes parents like Susila Devi to feel that they are at the mercy of headmasters and teachers. When the school’s authority is sincere in making concerted efforts to teach and care for the learning disabled and engage parents in dialogues, all is well and good. But when that does not happen, it can be hell, as in the case of her autistic son, Anand, when she enrolled him at a school in Subang Jaya, Selangor, three years ago.
The students in the special education class endured more than verbal abuse. Their teacher routinely tied them up when she was unable to cope with their behaviour. “Such an inhuman act would not have occurred if teachers were trained to manage their behaviour appropriately,†asserts Susila.
The absence of safety precautions was another reason that got the former accountant worrying. There had been occasions when the disabled students wandered off to the main road. Above all, the lackadaisical attitude of the teacher did not inspire confidence. So after despairing for half a year in the school, Susila felt it was time to take Anand out of the oppressive environment and resumed teaching him at home.
“I have no faith in the system,†she says. Until and unless teachers are appropriately trained and adequate resources are provided to motivate them to give undivided attention to the learning disabled, Susila feels the situation is unlikely to improve.
The problem is it is difficult to pinpoint who is responsible for implementing the existing guidelines for good practice at the grassroots level, observes John who has over 25 years of experience in working with children and adults with special needs in Britain.
“Having legislation that ensures the rights of the learning disabled are upheld is a start but what is more important is its effective implementation,†says John.
This is where the Bar Council comes in. Spearheaded by Helen Chin, a lawyer, the Bar Council is pressing for reforms, calling for new laws to be passed to give a clear definition of individuals with special needs and to ensure their rights are in tandem with those found in the UN Convention on the Rights of the Child and UN Declaration on the Rights of Disabled Persons.
Driven by the need to “make life better for our (disabled) children,†she was roped in by the Bar Council to study and compare the various legislations that are already in place in other countries pertaining to services and rights of the learning disabled.
Chin got into active campaigning two years ago because “as a lawyer and a mother of an autistic son, I’m constantly in contact with families with special needs and I share their frustrations.â€
Her son, Anthony Lee, 15, suffered at the hands of his teacher who, among others, derided him as “a mental case†when he was in Year One.
“I was so depressed,†she recalls. Instead of praising her son for his ability to read and write, the teacher focused on his negative behaviour. Like Anand, Lee quit school after a few months to be home schooled.
But Chin refused to wallow in pity. She decided she would fight bigotry constructively. The opportunity arose in 1999 when a Bar Council circular came out, calling for members to submit proposals on the existing laws that needed to be reviewed.
Thus began her journey of drafting the memorandum and organising a public forum. In January this year, the Bar Council took the matter one step further, launching an online signature campaign in its webpage (www.malaysianbar.org.my/default.htm). Response so far has been encouraging.
To date, the Bar Council has gathered about 15,000 signatures and parents like Cho Suet Sen and Shirene Bidari are actively garnering signatures from friends and families.
“I’m doing it because there are no rights, no provisions in our education system for children like my son who is dyslexic,†says Cho, who is a committee member of the Dyslexia Association.
Another seminar is being planned before June, entitled Disabled but not uneducable: Liberating the disabled through education. The Bar Council is making every effort to get the participation of the Education Ministry.
“We will be handing the memorandum and the signatures we gathered to the ministry. This is a pressing issue,†says Chin.
Describing the ongoing signature campaign as “very timelyâ€, Dignity and Services director Peter Young says it has to go beyond passing laws to protect their rights.
“This must be followed through not just in education but also in providing training and employment opportunities,†adds Young, who has over 20 years of experience working with persons with learning disabilities.
He observes that although the situation is improving, adults with learning disability are still getting a raw deal when it comes to employment. “They do not get to hold good jobs. Most are reduced to doing menial tasks,†he observes.
Young feels the onus is on both the Government and the private sector to bring about a positive change in the contributions of the learning disabled to the workforce.
Indeed, there is no denying that the law is only effective if there is enforcement.
“It harks back to the issue of implementation. If there is a law but it is not enforced, it has no teeth,†contends Kamariah.
“Which is why parents must speak out and exert their rights,†adds Chin.
Not only do more teachers have to be recruited, the Education Ministry needs to ensure proper training is given so that teachers do not resort to dehumanising tactics to get learning disabled students to comply.
In Britain, explains John, teacher aides are hired to attend to learning disabled students. If they act disruptively, the aides will take them out to another room or another activity for a short time. After they have calmed down, they return to class.
But in Malaysia, teachers do not have such luxury yet. Given the hive of activities and the courses they have to attend to, they are often stretched to their limits, notes Susila. Moreover, the best teachers are rarely the ones the learning disabled have.
There is a general consensus that reforms need to take place on many levels. There is a dire need to change the mindset of policy-makers and teachers. Parents have to be empowered too so that they can exert their children’s rights. Their participation should be valued and encouraged. The Government, on its part, has to allocate a budget and train more teachers and have aides to cater to the learning disabled.
“We run the risk of being stuck in the dark ages as far as education is concerned if we don’t start now,†warns John.
There are easily over two million disabled persons in Malaysia, going by the United Nation’s estimation that 10% of any given population is disabled. It is unlikely that the number will decrease in years to come. The economic and social costs will be enormous if the needs of the learning disabled continue to be sidelined.
To support the Bar Council’s signature campaign, visit The Malaysian Bar
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Law : Legal aid verdict for parents in MMR fight
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Posted by Sylvia on Wednesday, March 03, 2004 (22:22:04)
IC Coventry 03/03/2004
Parents who believe the MMR vaccine caused their son's autism will find out next week if they will have to abandon legal action against a drugs company.
Roy and Sue Pargetter are appealing against a decision made last September which resulted in their legal aid being withdrawn.
Their solicitors are seeking a judicial review to overturn the decision and by Monday the Pargetters, of Farmside, Willenhall, Coventry, will know if they can continue with their case.
The couple have been fighting for compensation for their 13-year-old son Luke, an Ernesford Grange school pupil who has autism and bowel problems, for five years. They were hoping to take the drugs companies behind the measles, mumps and rubella vaccine to the High Court next month. But without legal aid, they will not be able to afford to pursue the case.
Father-of-three Mr Pargetter, 47, said: "I am very disappointed, not just for me, but for all the other people. We shouldn't be made to wait.
"The evidence is definitely there (linking the MMR vaccine to autism). They know there is genuine cause for concern over MMR."
Last month, the work of Dr Andrew Wakefield, the man behind the research linking MMR to autism, was discredited by the scientific establishment.
The editor of The Lancet, the journal in which the study appeared, said it was flawed as it was believed Dr Wakefield had a conflict of interest when the study took place.
But Mr Pargetter said Dr Wakefield's work had been "brilliant".
He said: "They are making a scapegoat out of him."
The claims are being brought under the Consumer Protection Act 1987 against the manufacturers of the three brands of the vaccine, Merck and Co, Aventis Pasteur and Glaxo Smithkline.
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Law : Senate Passes 2 New Bills On Vaccinations
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Posted by Sylvia on Wednesday, March 03, 2004 (21:31:09)
The Iowa Channel 02/03/2004
DES MOINES, Iowa -- Two Senate committees have approved bills regarding vaccinations.
In the Senate Education Committee, lawmakers approved a bill that would require colleges and universities to provide students who live in residence halls with information on meningitis vaccinations.
The move comes after two University of Northern Iowa students died of the bacterial infection last fall.
In the Senate Human Resources Committee, a bill allowing only trace amounts of a mercury-base preservative in childhood vaccinations was approved 9-3 Monday.
Sen. Ken Veenstra, of Orange City, who sponsored the bill, said he was concerned about possible links between the preservative and disorders, such as autism, attention deficit hyperactivity disorder and speech or language delay.
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Law : Mother's anger at withdrawal of MMR jab legal aid
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Posted by Sylvia on Monday, March 01, 2004 (20:18:03)
Peterborough Now 25/02/2004
The mother of an autistic child today hit out at a decision to cut legal aid for families who are attempting to prove the MMR jab ruined their children's lives.
Rosemary Kessick's son William is one of 1,000 children who are being refused funding to sue SmithKline Beecham Plc and SmithKline and French Laboratories Ltd, the makers of the controversial triple vaccine.
William (15), was among the first children to receive the MMR vaccine in 1989, when he was just 14 months old and an apparently happy and healthy child.
Today he is severely autistic and has Chron's disease.
William's case was due to be heard at the High Court last October, when legal aid was suddenly withdrawn.
The Legal Services Commission, which had spent £15 million on the action for the families involved, refused to approve a further £10 million.
An appeal for a judicial review into that decision was heard last week, but Mrs Kessick will have to wait at least two weeks to hear the result.
Mrs Kessick (49), of Larklands, Longthorpe, Peterborough, said: "I think it's disgusting when you look at the amount of legal aid which is given to prisoners in jail and asylum seekers.
"To pull funding at a time when the evidence is quite clearly becoming extremely strong is absolutely outrageous.
"It's the ultimate insult to deny that these children are ill and have got a problem and to deny them their day in court."
The legal aid blow comes in the wake of Government criticism of Dr Andrew Wakefield's study into potential links between MMR and autism and bowel disease.
Sir Liam Donaldson, England's chief medical officer, branded his research as flawed after he was accused of failing to reveal that he received £55,000 to carry out separate research for parents.
The General Medical Council has launched an inquiry.
Government attacked over criticism of doctor
Today Mrs Kessick slammed the Government's timing of its criticism of Dr Wakefield's study.
She said: "It's a complete set-up. The science is good and Dr Wakefield is good.
"And if they take Dr Wakefield down they will have to take me down as well."
Millions saw Mrs Kessick, who runs the Allergy induced Autism charity, talk about William's tragic case on a five television documentary, MMR: The Debate in December.
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