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News- Page 2
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Current and upcoming legislation
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Posted by Sylvia on Saturday, January 26, 2008 (16:50:13)
The Health and Social Care Bill
Currently passing through Parliament, it will create a single inspection body for health and social care services and extend the right to receive direct payments (payments from local authorities which enable those receiving state funded social care to pay for and organise their own care) to those who may need a friend or relative to organise the care and support for them.
Discrimination Law Review
The Government is intending to introduce a Single Equalities Bill in 2008/09 which would bring together some of the different strands of anti-discrimination law for disability, race, gender, sexual orientation and age. The Bill should be a positive development but we will be lobbying hard to ensure that the protections from discrimination disabled people currently enjoy are not eroded.
Welfare Reform Act
The main parts of this Act will come into force in October 2008. It introduces a new benefit, the Employment and Support Allowance, to replace the current Incapacity Benefit (IB). The new benefit also has a new assessment for eligibility, and there are concerns that it will be stricter than the current assessment for IB which has already been described as one of the strictest in the developed world.
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Law : Victory for parents of autistic child
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Posted by sylvia on Monday, July 02, 2007 (11:39:33)
Katie Cooper
The parents of an autistic child have won a battle with education chiefs over specialist support for their son - but fear they face years of similar struggles.
Following a tribunal, Norfolk County Council has agreed to pay for a special therapy programme to help develop four-year-old Jacob Ruel's social skills before he starts school.
His parents Claire and David Ruel, of Glebe Road, Norwich, had struggled to raise the £15,000 needed for the programme, which gives the youngster one-to-one sessions at home to help him to develop the social skills language and other abilities his disorder inhibits.
Although delighted at the victory, they fear the battle will be the first of many as they strive to provide the best possible education provision for their son.
Mrs Ruel said: “I know for a fact that like so many parents of children with special educational needs we will need to keep hassling the LEA to make sure he gets the help he needs.
“I know money is tight for these organisations but really my husband and I have been very lucky.
“But it must be awful for people who can't afford to fund their children in private programmes or to bring tribunals against authorit-ies to try to argue their child's case.
“We have spent a lot of money on solicitors and it has been incredibly stressful.â€Â
The appropriate education provision for children in Norfolk with autism and other learning difficulties has been hotly debated in recent years.
Norfolk County Council is increasingly trying to educate such children in mainstream schools, but some parents argue the standard and intensity of supervision needed is not available.
In one high profile case, the parents of Evan Jones, from Wymondham, who suffers from severe dyslexia, successfully fought for the county council to pay for him to receive schooling outside the county, where a tribunal ruled his needs could not be met in Norfolk.
Jacob will start at St John's Catholic Infant School, in Heigham Road, in September, where his parents hope he will get the supervision he needs.
The couple had held many fundraising events in their local pub, the Unthank Arms, to raise funds for education provision and their close friend Nikki Wright even did a sponsored slim to raise more than £2,000 for Jacob. A spokesman for Norfolk County Council said: “We are confident we can meet Jacob's needs at St John's Catholic Infant School, with additional support coming in from a special school, the school support team, speech and language therapy and sensory integration occupational health.â€Â
Have you struggled to fund specialist help for your child? Call education reporter Kim Briscoe on 01603 772 2419 or email kim.briscoe@archant.co.uk
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Law : Autism diagnosis training laws pass both houses
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Posted by Sylvia on Sunday, May 08, 2005 (21:27:00)
Delmarva 04/04/05
By James Fisher
An effort to diagnose autism in children as early as possible has led both houses of Maryland's legislature to pass laws that would train pediatricians to detect the disorder.
The legislation would set up a pilot program in the Department of Education to teach health care providers how to detect signs of autism in children under 2 years of age, and put those screenings into practice in at least two places in the state.
At least 30 pediatricians would be selected to take part in the pilot program. A state health department, at the same time, would be charged with studying how well the state's doctors monitor young patients for autism.
"I think that's an excellent idea," said Tom Lott of West Ocean City, who with his wife, Carolyn, is involved in a Worcester County support group for autistic children. Lott said doctors reviewing videotapes of autistic children have identified certain motions and behaviors that are telltale signs of the neurological disorder, thought to be affecting more children than in the past.
"Autism is like a rut. If you get to a kid early on, you can get him out of that rut," Lott said. But he said his own son, before being diagnosed as autistic, was not considered at-risk by some pediatricians.
"They would blow you off," Lott said.
The Sun in Baltimore reported Tuesday that funding for the pilot program is still being discussed in Annapolis.
Lott said he was concerned about a different bill, in the U.S. Senate, that would prevent states from banning the use of mercury in vaccines. Some doctors and patients of autistic children believe exposure to mercury accelerates autism's onset.
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Law : No legal aid available for MMR parents
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Posted by sylvia on Wednesday, October 20, 2004 (23:48:53)
Leeds Today 18/10/2004
By Katie Baldwin
Parents fighting drug companies over claims their children's autism is related to the MMR vaccine have been told they won't get legal aid.
The announcement, by the Legal Services Commission (LSC), affects 26 families hoping to take their cases to the High Court.
But 11 cases where parents felt their child had suffered other illnesses as a result of the vaccine were reinstated with financial support.
These include cases where the child has suffered conditions such as encephalitis, epilepsy and deafness after being vaccinated.
They will be funded by the commission to see if compensation can be claimed from the companies producing the drugs.
Clare Dodgson,the commission's chief executive, said: "I have every sympathy for the parents and their children.
"These children are clearly ill and their parents genuinely believe the MMR vaccine caused their illnesses.
"However, we have an obligation to only fund cases which have reasonable prospects of success and where the cost of the action is reasonable when compared with the potential damages."
The reinstatement of the 11 cases was welcomed by the pressure group JABS.
Jackie Fletcher, national co-ordinator, said: "We are pleased because there is very much a case to be answered in the MMR situation.
Endorsement
"This is an endorsement by the commission that there is a case."
She said the families would now be contacting their solicitors to take their cases forward.
But Ms Fletcher, whose 11-year-old son developed epilepsy and other problems after having the jab, said there was bitterness that funding for the 26 other cases had been denied.
"We are very disappointed that it has been restricted in the way that it has. It should be opened up to more families."
In September last year, legal aid was withdrawn from the cases of more than 1,000 children – many from Yorkshire – who developed medical problems after receiving the jab.
The commission said medical research had not provided a conclusive link between the MMR vaccine and autism and there was no acceptance among worldwide medical authorities that the jab caused the symptoms experienced by children.
This meant the litigation was likely to fail and it would be wrong to spend a further £10 million of public money funding a trial on top of the £15 million already invested.
The decision was upheld by a Funding Review Committee and again by a judicial review in February this year.
From there, the families of 37 children appealed the decision, arguing that their cases were particularly strong. Of those, 11 were deemed to be suitable.
A spokesman from the commission stressed any family was free to take their case forward privately if they chose to fund it themselves.
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Law : It’s not the state’s job to guarantee a quality life
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Posted by sylvia on Sunday, October 10, 2004 (12:26:11)
The Sunday Times - Ireland 10/10/04
Last week, lawyers for the minister for education went to the High Court to begin the process of obtaining more than €1m in legal costs from the parents of a boy with a severe learning disability. According to experts called by his family at the hearing of the action earlier this year, Richard Clare suffers from attention deficit hyperactivity disorder (ADHD). His mother, who took the case on his behalf, argued that his quality of life and future prospects for a normal existence had been impaired by the state’s failure to provide early and appropriate therapy and education for Richard, who is now 18.
After hearing all the evidence, the judge decided that the boy’s difficulties were not directly attributable to a lack of resources or state intervention. While Richard’s problems might well have been due to his ADHD, they could also have been exacerbated by life experiences, by difficulties growing up, by his home or school environment, and so the judge concluded that negligence on the part of the minister for education couldn’t be blamed for the boy’s circumstances.
So it is clearly not the state’s fault that Richard is facing whatever troubles lie ahead for him. But the case raises — and doesn’t really address — the more subtle question of whether it is the state’s responsibility, leaving blame out of it, to do whatever it takes to raise the quality of life of a child with special needs to that of his peers.
Until quite recently, a child exhibiting the sort of behaviour now diagnosed as ADHD would have been classed as bold, naughty, disruptive, incorrigible. But science has apparently demonstrated a link between brain chemistry and such behaviour, and this is borne out by experiments that illustrate how certain food additives, containing these impugned chemicals, can alter children’s behaviour for the worse. Artificial colourings, E- numbers, man-made flavourings seem to impact adversely on certain children and make them fractious, irritable and easily distracted.
When foods — mostly the cheaper, highly-processed, intensely salted and sweetened rubbish that kids enjoy most — are cut out of their regular diets, these children show a marked improvement in concentration levels and response to discipline and temperament. But in children diagnosed with ADHD, dietary changes only go part of the way towards addressing their difficulties, and some need constant medication to regulate the errant brain chemistry.
In America some states take a proactive attitude to diagnoses of ADHD. An American friend, whose child suffers from the condition, had to hire an anti-interventionist lawyer to prevent authorities insisting on
a course of Ritalin as a pre-requisite to the child continuing to receive an education from the state. She was anxious to exhaust all therapeutic avenues of treatment before conceding that the drug was the only answer for her child. In the end, alas, they had no choice but to accept that the drug was their best chance of regulating his behaviour.
So ADHD certainly appears to be a genuinely debilitating condition and one that has serious implications for a child’s long-term prospects of success and happiness and stability in relationships. Just why it presents in certain children doesn’t seem to be clear — unlike conditions such as cerebral palsy, it hasn’t been linked to oxygen deprivation during delivery, for example, and so its emergence in a toddler or a young child can’t really be considered anybody’s fault. It’s a bafflingly but naturally occurring disruption of brain chemistry, and one that can be modified by therapy, special education and, in extreme cases, medication. So does the state have a duty to provide that therapy, that education, that intervention at taxpayers’ expense where there is no negligence and no legal liability involved?
Even if all of Richard Clare’s problems were not due to ADHD, does a sophisticated welfare state nevertheless have an obligation to make sure that he gets such help as he needs to overcome his difficulties? Or is there a cut-off point, beyond which the state has no higher duties? Last week, too, a controversy arose over the entitlement of a severely deaf nine-year-old girl to tuition in Irish sign language (ISL) — this is not about learning to sign “as Gaeilgeâ€, but is instead the language of the Irish deaf community, and the means by which they communicate with one another. The contrary thinking is that deaf children should be encouraged to communicate in English and to learn orally.
If this child’s parents believe that ISL is essential for their daughter’s quality of life should the state be obliged to provide it at taxpayers’ expense? It’s difficult to guess what decision an Irish court would have made in the heartbreaking baby Charlotte Wyatt case that has just concluded in Britain with a decision by their High Court that the child should not be resuscitated the next time her breathing stops. Her parents had fought desperately for her right to go on living so long as that was medically possible. Here, under our constitution, when there’s any conflict of rights, the right to life supersedes all others.
There, it was a question of quality — since the baby’s life was never likely to achieve any tolerable quality, it was considered better to let it end.
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