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MPs Call For Harsher Hate Crime Sentences

November 2, 2011

MPs are calling for tougher sentences for “hate crimes” committed against disabled people amid concern that they are on the increase.

An all-party group is pressing for such offences to be put on the same footing as acts of violence motivated by race, religion or sexual orientation, which would mean stiffer penalties.

The courts would have to take account of the motive when fixing the sentence. For example, a life sentence for the murder of a disabled person would attract a longer minimum jail term.

Kate Green, the shadow Minister for Women and Equalities, has tabled amendments to the Legal Aid, Sentencing and Punishment of Offenders Bill being debated in the Commons this week, which would ensure tougher penalties. Her backers include Paul Maynard, a Tory MP and Simon Wright, a Liberal Democrat.

Ms Green said the aim was to “put the Government on the spot” to ensure that the issue of crimes against the disabled are taken more seriously. She said a new approach was needed on a much wider front than sentencing.

“There is a growing problem of public hostility towards the disabled,” she said. “Public agencies sometimes appear to challenge the victims rather than the perpetrators.”

The move follows the tragedy of Fiona Pilkington, who killed herself and her daughter in 2007 after being subjected to 10 years of harassment and anti-social behaviour. The family complained at least 33 times to Leicestershire Police. Although an investigation by the Independent Police Complaints Commission found that the police missed several opportunities to act, four officers were cleared of misconduct.

A study by the Equality and Human Rights Commission found that the case was only the “tip of the iceberg” because harassment of the disabled was “a serious problem.” It found that many disabled people were afraid to report such abuse, fearing the consequences or that they would not be believed.

Gemma Quinn

November 2, 2011

Is this just another pile of scribble, exaggerated by the Daily Fail? I can’t believe she’s really spent four million pounds on her medical care in 10 years! I know people who have received much smaller compensation payments and still haven’t managed to spend everything in that time.

Possible New Drug Treatment For Progeria

November 2, 2011

A widely-used drug might help treat children with a condition that ages them up to eight times too quickly, Durham University researchers believe.

People with progeria also suffer heart problems, lack of growth and loss of body fat and hair.

Writing in Human Molecular Genetics, scientists said the condition was partly down to DNA damage caused by highly reactive oxygen chemicals.

They said the drug, n-acetylcysteine, could control the damage.

The average life expectancy for someone with the condition is about 13 years.

Their cells show significant defects, which researchers put into two categories: damage to the DNA and physical disruption of the cell’s shape.

Prof Christopher Hutchinson, who led the study, said trials for drugs to correct the shape problems were showing some success.

He has been investigating the cause of, and simple solutions to, the damage to the genetic code.

‘Very exciting’

The team at Durham University found that levels of damaging “reactive oxygen species” were five to 10 times higher in cells of patients with accelerated ageing.

They used n-acetylcysteine, which is already used to prevent liver damage in patients who have overdosed on paracetamol, on cells in the laboratory.

The drug soaked up the reactive oxygen. DNA damage in the cells then returned to “approximately normal levels”.

Prof Hutchinson said: “For us it is very exciting.”

However, it is unknown what the effect would be if the drug was given to children with the illness or how it would work with other drugs.

Prof Hutchinson told the BBC: “I have to say this is one more piece in the jigsaw which will eventually allow us generate treatments, but it is one more piece.”

A full randomised clinical trial of the drug is not possible as the condition is so rare. The Progeria Research Foundation says there are just 78 children known to have the condition.

Its medical director Dr Leslie Gordon said: “[Prof] Hutchison’s study has not only confirmed basic cellular defects in progeria, but has also identified potential ways to improve those defects.

“This type of biological science is how progress towards treatments and a cure for children with progeria will advance.”

The findings might also one day have benefits for ageing in the wider populations.

Prof Hutchinson said: “If you give a child a drug which extends lifespan without adverse affects then you would expect these to be useful in an older population.”

Charlie Swinbourne Wants Video Relay Services For Deaf People

November 1, 2011

In this article, he explains why.

New Drug Cuts MS Relapses By 80%, Finds Study

November 1, 2011

A new multiple sclerosis drug has been found to cut the chance of having a relapse by four-fifths.

Swiss scientists found those given 600mg of the drug daily, called ocrelizumab, had an 80 per cent reduced chance per year of having a debilitating attack.

The study looked at 218 patients aged 18 to 55, of which a third were randomly assigned a placebo, a third a 600mg dose of the drug, and a third a 2000mg dose.

Writing in The Lancet, the authors of the report concluded that the drug “rapidly suppresses inflammatory activity” around the brain, which cause neurological problems in sufferers.

The drug is still at an explanatory stage, and bigger trials are needed to confirm its effect.

There are also question marks over its safety. Last year Roche, its maker, had to pull clinical trials in rheumatoid arthritis and lupus after some volunteers died of “opportunistic infections”.

But Dr Jayne Spink, director of policy and research at the MS Society, said: “These results are really promising for people with relapsing-remitting MS. If this drug proves successful in larger trials, it stands to increase the range of safe and effective treatments that are available.”

Jim Fixed It For Deaf Woman Emma Simmons

November 1, 2011

This article has made me curious. Readers, are you DisAbled? Did Jim ever Fix It for you?

A Belfast woman has been telling BBC Newsline about the time she met the broadcaster Sir Jimmy Savile.

Sir Jimmy died aged 84 on Saturday.

Emma Simmons met him after her letter was answered on his famous television show – Jim’ll fix it.

BBC Newsline’s Julie McCullough went to meet her.

Robbie Crane

November 1, 2011

A boy from Hertfordshire who suffered brain damage after heart surgery will receive at least £5m in compensation.

Robbie Crane, now 12, of Hemel Hempstead, won an out-of-court settlement of his claim for alleged medical negligence against Harefield Hospital in Middlesex.

The Royal Brompton and Harefield NHS Trust denied liability for Robbie’s condition.

But a financial settlement was reached at the High Court in London on Monday.

Robbie, was born with a heart defect and underwent surgery at Harefield Hospital in October 1999 to correct the condition.

‘No chance’

The surgery was successful but Robbie’s lawyers alleged medical negligence when he was being ventilated after the operation.

Neil Block, QC for the trust, said although there was no admission of liability, the trust acknowledged “serious issues” had been raised over Robbie’s treatment.

Mr Justice Owen approved the out-of-court settlement, in which Robbie will receive 70% of the full sum claimed.

The money will be used to provide Robbie with the care, accommodation, equipment and support he will need for the rest of his life.

In a statement after the hearing, Robbie’s parents, Catherine and Barrie, said: “We almost can’t believe we’ve actually won this compensation for Robbie as we were told on a number of occasions we stood no chance.

“We have always provided Robbie with constant loving care and this award means he will still be cared for when we are no longer able to do so.”

Scope Launches New Bond Programme

October 31, 2011

Broadening their horizons…

Scope, the disability charity, is to break new – and potentially controversial – ground by launching a £20m bond programme this week to create new source of funds for its activities.

It will be one of the first UK charities to enter the capital markets, this one through a tie-up with the Bank of New York Mellon Corporation, which it believes could provide a template for others to follow.

The Scope Bond Programme will list on the Luxembourg-based Euro MTF stock market and follows last year’s launch of the Grangewood Venture Philanthropy Project where outside investors were brought in to finance the construction of homes for people with multiple disabilities.

“The major cash investment that we hope to generate through the Scope Bond Programme has the potential to transform the support we can provide to disabled people,” said Richard Hawkes, chief executive of Scope.

“It gives us the opportunity to talk to a new and emerging network of prospective supporters and offer them an additional way of investing in Scope alongside traditional donations and philanthropic loans. This is a landmark development for Scope and could revolutionise the way we and other large charities raise finance for our work in the future.”

So-called Social Impact Bonds have also been trialled by the prison service and other public institutions as a way of raising money from private sources but individual charities have rarely used them. Bonds are more typically used by governments or large corporations to raise money as a form of debt.

The Charities Commission, which oversees such organisations, said it had just issued new guidance to charities encouraging them to look at new ways of improving their financial or operational efficiency.

Scope says the bonds which will be aimed at attracting high net worth individuals and larger institutions rather than small retail investors. It also dismisses fears that City-style financing of charitable bodies could undermine the image of Scope or lead it into debt.

“This allows us to accelerate the work we already do and will allow investors to put their money into an investment with clear social benefits and not just financial returns,” explained Scope finance director Geetha Rabindrakumar.

The Scope programme will operate in the same way as similar corporate bond products although the rate of return or “coupon” is likely to be lower. Scope will have the flexibility to issue sterling bond tranches at varying nominal amounts, maturity dates and coupon rates under the programme.

Scope reports income of more than £100m a year with £23m of that coming from its network of charity shops, £15m from traditional donations and the rest from providing services to the public sector. About 3,000 people are employed by Scope which made a surplus of £4m in 2010.

Disability Charities Warn Against Legal Aid Cuts

October 31, 2011

Ministers are being urged not to restrict legal aid for disabled people wanting to challenge benefit decisions.

A coalition of charities including Scope and Mind argues that limiting access to “vital” help in England and Wales would harm vulnerable people.

Labour says the plans due to be debated by MPs later are “unprincipled”.

But the government insists the £2bn legal aid bill is unaffordable and help has to be targeted at the most serious cases and those most needing support.

Ministers are looking to prune £350m from the civil legal aid budget by 2014-5 as part of cuts across government to reduce its deficit.

Justice Secretary Ken Clarke has argued that the legal aid bill has spiralled in recent years and, with resources being squeezed across Whitehall, only cases where life or liberty are at stake should be routinely funded out of the public purse.

It is thought there will be 500,000 fewer civil cases as a result.

‘Serious impact’

The 23 organisations, which also include Mencap, the RNIB and Leonard Cheshire, want MPs to back an amendment to the Legal Aid and Sentencing Bill – put forward by Lib Dem Tom Brake – reversing the decision when the proposed legislation is debated.

The disability rights groups say the changes mean up to 80,000 people will no longer be able to get access to publicly funded legal advice to help them challenge benefit decisions.

Campaigners say those affected will not be able to find legal help elsewhere and it could have a “serious impact” on their finances and peace of mind – making it harder for them to return to work in the future.

“Legal advice is vital for disabled people if they fall foul of poor decision-making, red tape or administrative error,” Scope’s chief executive Richard Hawkes said.

“For welfare reform to work, disabled people have to get support to appeal decisions relating to their benefits, especially within a system where errors are commonplace.

“Cutting legal aid in this area will make it harder for disabled people to get the right support and ultimately could drive more people further away from work.”

Citizens Advice has warned the plans could be counter-productive since the £16m in anticipated savings will be exceeded in the long-term by the costs to the state as peoples’ problems “spiral out of control”.

‘Cuts targeted’

The Ministry of Justice said the move was necessary as part of plans to scale back the legal aid bill.

“We have one of the most expensive legal aid systems in the world which in the current financial climate we just cannot continue to afford,” a spokeswoman said.

The review of legal aid, she added, would ensure it was “targeted at the most serious cases and those who most need legal support”.

“Legal Aid will continue to be available in many types of cases including where someone is at risk of serious violence, losing their liberty or their home, or where children may be taken into care as well as for mental health, community care work, and child abduction.”

‘Economically unsound’

But Labour said the proposals would limit access to justice to those who could afford it.

“Receiving legal advice to prevent escalating housing, welfare and debt problems has been shown to save the taxpayer money further down the line, demonstrating just how economically unsound as well as unprincipled the plans are,” shadow justice secretary Sadiq Khan said.

“Savings must be made to bring the legal aid budget down but it should be through other areas such as retendering criminal law contracts, not by restricting access to legal aid for those in greatest need.”

Following a public consultation earlier this year, Mr Clarke amended the plans so as to protect access to legal aid for victims of domestic violence in private family cases and for children at risk of abuse or abduction.

Stormchaser: The Butterfly And The Tornado

October 31, 2011

This is on BBC Three tonight at 9pm.

Documentary which follows tornado researcher and weather fanatic Sam Hall on an epic road trip across the US in search of some of the planet’s most violent storms. This would be a gruelling trip for the toughest of individuals, but there’s an added challenge for Sam as she has a skin condition known as Epidermolysis Bullosa or EB. The layers of her skin don’t stick together and so even the slightest knock can tear or blister her skin. Once out in the States, Sam is intoxicated by the brutal tempests she encounters, but her excitement soon turns to trepidation as she heads right into the middle of America’s worst ever tornados.

Wheelchair Users Can’t Use New Railway Bridge

October 30, 2011

A campaign has been launched after a new bridge at a Kent railway station does not cater for wheelchair users.

Network Rail said there were too few users of the new bridge at Bearsted station to justify the extra cost.

However, it means disabled passengers who need to cross the track must travel to Hollingbourne or Ashford stations.

Wheelchair user Vicci Chittenden said it is this kind of lack of access that “makes a person with an impairment disabled”.

Network Rail had to apply to the government for dispensation not to build lifts or ramps on the new bridge.

The firm argued not enough people used the station to justify the cost and said the bridge had been designed in such a way that lifts could be added if required.

Neil Coyle, of Disability Alliance, said: “To do one bit and then come back for the accessibility requirements makes no economic sense.”

An online petition has been launched, with campaigners saying the lift is also difficult for those with pushchairs and heavy luggage to use.

Maria Williams

October 28, 2011

This article is from earlier this week, but I’ve only just read it. I think it is a good idea for adults with learning difficulties to stay in school until they have learnt at least the basic life skills required to live in society.

Comments, as always, are very welcome. I would be particularly interested in the thoughts of any parents who may have been in a similar situation towards the end of their child’s education.

 

X Factor Johnny Robinson Is Disabled, In IB Row Over Show Appearance

October 28, 2011

Welfare officers have been “in contact” with X Factor contender Johnny Robinson after allegations that he falsely claimed incapacity benefit.

The contestant, who is due on stage this weekend in the next episode of the ITV1 talent show, is reported to have been claiming the money while performing on the programme.

Robinson suffers from a condition called spondylitis which leaves him with a stiff spine and he takes a daily dose of painkillers.

His last performance, a cover of The Darkness hit I Believe In A Thing Called Love, saw him lowered on to the stage before he skipped across it and around the judging panel.

A spokesman for the Department for Work and Pensions said: “We cannot comment on an individual case, but we are in contact with Mr Robinson about his situation.

“Incapacity benefit is there to support people who are unable to work and if someone’s circumstances change or new evidence comes to light, they may not get the benefit any more.

“We are currently in a process of re-assessing everyone who claims incapacity benefit to see if they are fit for work.”

There were similar concerns last year when it emerged that one of the finalists, Wagner, claimed incapacity benefit despite a series of energetic performances.

An X Factor spokeswoman said: “Johnny declared to us that he was receiving benefits. He is in contact with the Department for Work and Pensions due to his appearance on the show.”

New Gene Treatment Trial For Blindness

October 28, 2011

A pioneering new treatment that uses DNA to correct a hereditary and incurable form of blindness has been performed for the first time in a British hospital.

The landmark procedure is aimed at stopping the progression of a genetic disorder which sets in during childhood and slowly leads to total blindness.

It marks the first attempt by scientists to combat the effects of choroideraemia, a condition caused by a missing gene in the light-sensitive cells at the back of the eye.

Oxford University researchers carried out the trial on Jonathan Wyatt, an arbitration lawyer from Bristol, at Oxford Eye Hospital on Monday.

Mr Wyatt, the first of 12 patients selected for the test procedure, began losing his sight at the age of 19 and was later forced to give up his job because he could no longer read clearly.

At the age of 63 Mr Wyatt still has a limited amount of sight but the condition – which affects about 1,500 people in Britain – often leads to blindness by the 40s.

In a bid to preserve his remaining sight, doctors injected ten billion copies of the missing gene, called REP 1, directly into his left eye while leaving the right untreated as a “control”.

Lacking the gene causes the cells at the back of the eye which collect light to break down and die, causing sufferers to begin losing their sight before the age of 10 and develop “tunnel vision” by their late teens.

By inserting copies of the gene into an empty virus particle, which was programmed to move towards the affected cells, known as photoreceptors, scientists hope they will have activated the gene and prevent any further harm.

Researchers expect to know if the treatment has worked within the next two years, and will treat Mr Wyatt’s other eye if the results are positive.

Doctors hope that, if successful, the technique could lead to new treatments for a wide range of previously incurable genetic eye conditions including macular degeneration, the most common cause of blindness in the elderly.

Professor Robert MacLaren, who led the trial, said: “If this works with Jonathan then we would want to go in and treat patients at a much earlier stage in childhood, effectively where they still have normal vision and can do normal things to prevent them from losing sight.

“The photoreceptors have always been the final frontier for gene therapy in the eye.

“I cannot describe the excitement in thinking that we have designed a genetic treatment that could potentially stop [the disease] in its tracks with one single injection.”

The one-off treatment, which should last for life, is not aimed at reversing the deterioration that has already taken place but Mr Wyatt said last night he believed his vision had begun to improve.

He said: “There is, I think, a possibility that it will improve the sight of the eye.

“For instance today I looked at my wife’s mobile phone and was able to identify all the digital letters – I gave her my mobile phone with small digital letters four years ago because I could not read it any more.

Tony Nicklinson V Michael Wenham

October 27, 2011

The Commission on Assisted Dying is to publish its recommendations on whether changes to UK law are needed in the next few weeks.

The Commission has been weighing up whether helping someone to end their life can ever be justified.

BBC Inside Out West brought two people with opposing views together to discuss the issue.

Tony Nicklinson from Wiltshire is paralysed from the neck down after suffering a stroke and would like assistance from his wife to end his life.

But Michael Wenham from Oxfordshire who has motor neurone disease believes taking a life can never be justified and UK law should not be changed.

Inside Out West can be seen on BBC One in the West of England at 19:30 on Monday 31 October and nationwide on the BBC iPlayer for seven days afterwards.

Production Begins On London 2012 Medals

October 27, 2011

Production has begun to make the 4,700 Olympic and Paralympic medals at the Royal Mint headquarters in Llanstrisant, South Wales.

Each one takes ten hours to complete.

Colette Hume reports.

NHS Grant To Help Learning Disabled People Date

October 27, 2011

A £50,000 NHS grant is being used to help people with learning disabilities to find a partner.

The Ark charity, in Crowthorne, is using the cash to work with community teams in East Berkshire NHS and Wokingham to find volunteer chaperones.

Called the Umbrella project, the initiative provides a matching service to help people make friends.

It also includes sessions on sexual health awareness and relationship skills for those who sign up.

Chaperones will be involved in assisting those who sign up to go on dates by offering encouragement and support.

Scott Waller, from the Ark, said it was difficult for people with learning disabilities to “get out and meet people”.

“We feel that people with learning disabilities should have every opportunity to have the best quality of life that they can and that includes having relationships and going on dates,” he said.

The Umbrella is due to be launched in January once volunteers, who will be trained in-house at the Ark, have been found.

Sarah Churman

October 26, 2011

American Sarah Churman was born with a rare condition where the hairs in the middle of her ear did not form, leaving her almost completely deaf.

She was given a hearing aid at the age of two but could only hear indistinct sounds, not voices.

In September she underwent a life-changing operation to insert an ear implant. Footage taken afterwards shows her breakdown into tears when she hears the first clear sounds.

Mrs Churman posted the video on YouTube where it has been viewed over eight million times to date.

Writing on her blog, Mrs Churman described how she felt on that day.

“I just started crying, then crying more because I could hear myself crying. Then laughing, then freaking out over my laugh.

“Then the tapping of the keys as the nurse lady did something on the computer, followed by the remote being set down on the counter…….I could hear it!!!”

Of her new-found celebrity, Mrs Churman wrote at the time when she posted the clip on YouTube she had “absolutely no idea anything like this would happen”.

The Cuts Get Personal For Sam, 2, And His Mum

October 26, 2011

Sam, 2, has Cerebral Palsy. But cuts at her council mean his mum fears that his specialist therapies will stop, making a very big, and very negative, difference to his life.

Disabled People Need Action, Says Liz Carr

October 25, 2011

Just a quick post to link to this piece by Liz Carr on mong-gate and why it’s not as important as the other issues we’re facing.

Young Learning Disabled People Get A Break Thanks To Mencap

October 25, 2011

In the Oldbury offices of the crime reduction charity Nacro, five young men sit around a table, swinging on their chairs and readjusting their headgear. Between them, they have convictions and cautions for burglary, robbery and cannabis possession. All are aged between 16 and 19 and have mild to moderate learning disabilities.

Do they always understand why they get in trouble, Mencap worker Neil Pensom asks them. “No, not really,” says Donovan Haynes, 18. “

Has anyone in the group ever done something that got them in trouble because someone else told them to? Haynes has. Would it have been hard to say no? “It would have made me look like a bitch … You need to have respect, man.” And what happens if you lose it? “You end up getting beaten up. You’d be a loner.”

The link between learning disabilities and offending is well documented. Almost a quarter of prisoners under 18 in England and Wales have a learning disability, according to 2007 research. Mencap’s Raising Your Game project, a five-year, £4.9m scheme financed by the Big Lottery Fund, is seeking to bring the figures down by helping young people with learning disabilities understand the system and the effect of offending on them and the victims.

It will also address the failure of criminal justice professionals to take the needs of young learning disabled people into account. Adele Doherty, programme manager for Raising Your Game, says she has repeatedly heard of offenders being given curfews without anyone checking they understand the 24-hour clock or can even tell the time. Yet breaking a curfew can result in custody.

Some 200 young people have been involved in developing services, in partnership with Nacro and the children’s communication charity I Can. Next month, the six-week course being trialled by the group in Oldbury, in the West Midlands, will be rolled out in seven areas across England. Mencap wants 2,000 young people who have offended or are at risk of doing so to go on the course over the next three years.

Many of them will have spent time in care or have come from backgrounds with little parental support, where they have not been taught appropriate behaviour, says Doherty. “They don’t necessarily understand the consequences of their decisions, and many are bullied or come under peer pressure to commit crime,” she explains.

In Oldbury, the course leaders have their work cut out. The boys do what is asked of them but have limited attention spans. Pensom, though, says he believes they are getting something out of it. The boys’ susceptibility to peer pressure is probably responsible for at least some of their unwillingness to open up, he says.

Away from the bravado of the group, all are more forthcoming. James Davies, 17, says although it hasn’t changed him “too much”, he has calmed down a lot. “It just makes you think. Makes you realise how dumb you can be.”

Haynes was doing two robberies a week previously to get money. Now, he says, he keeps out of trouble. “It ain’t worth it. You get eight years for that stuff.” What has made him see it differently? “Speaking about it. It made me think more.”

Some names have been changed.

One In Eight Rioters On Disability Benefits

October 25, 2011

The Daily Fail’s latest pile of scribble.

Disabled Children Received No Childcare Over Summer Holidays

October 25, 2011

I have just received the press release below from Kids.

 

One in three parents of disabled children received no holiday childcare during summer 2011, according to a survey conducted by KIDS in partnership with Mencap.

 

With half-term approaching, the survey of 1,192 parents from across England highlights that families with disabled children face a lack of appropriate holiday childcare, exorbitant childcare costs and even discrimination, as local authorities fail in their duty to provide childcare.

 

The survey reveals that two in three families found it ‘difficult’ or ‘very difficult’ to find appropriate childcare for their disabled child during summer 2011, and one in 10 disabled children were refused a place in childcare provision because of their impairments.

 

Even when parents do get childcare, it is estimated that some 19% parents of disabled children faced childcare costs of up to £11,700 per year, compared to the national average of £5,028[1].

 

The survey also highlights the continuing struggle that parents of disabled children face in order to maintain full-employment. While 19% of those surveyed were able to maintain a full-time job while caring for their disabled child, nearly half (41%) stated that they need childcare to be able to work. The lack of affordable, appropriate childcare was cited as a major reason that 43% of parents were unemployed.

 

During National Parents Week, and ahead of half-term next week, KIDS and Mencap are calling on local authorities to improve their childcare provision to meet the requirements of families with disabled children, who have been amongst the hardest hit by cuts to local authority budgets. Welcoming the recently announced £300 million by government for childcare, KIDS and Mencap urge local authorities to use this to make reasonable adjustments so that all children can access good quality childcare.

 

Kevin Williams, chief executive of KIDS, said, “It’s disappointing, but not surprising, to hear that so many families have found themselves unable to access childcare for their disabled child this summer.  Caring for disabled children without the right support can have significant consequences for a whole family, not just a disabled child.  The effect can be profound:  disabled children lose out on opportunities to socialise with peers, relationships between parents can become strained or even break, and siblings or other family members may take on additional caring responsibilities.  The financial implications are clear from the survey results.

 

“KIDS knows, from our 40 years of experience of working with disabled children, young people and their families that good quality childcare provision isn’t a luxury.  In the longer term, the cost of providing support for families which have broken under the strain of caring for a disabled child can be significantly higher than ensuring they have access to appropriate childcare support in the first place – not just financially.”

 

David Congdon, Mencap head of campaigns and policy, said: “We know that families with a disabled child have many additional costs associated with their child’s care. Compounding this, parents face a real struggle to juggle caring for their disabled child and finding and maintaining full or even part-time employment.

 

“Local authorities have a duty to provide sufficient childcare, which should be a universal service. Too often families of disabled children are let down during the holidays because of the inability of local authorities to provide suitable childcare for a fair price. We hope that the recently announced additional funding for childcare will reach disabled children and their families as a priority.”

My Letter Published In Disability Now

October 24, 2011

I wrote a letter to the editor of Disability Now a few weeks ago, then forgot all about it. Until, that is, I opened the latest issue to find it in print. It’s not an article, or even close to one, but still, it’s nice to be noticed by writers I admire.

Regional Coverage Of Hardest Hit From The BBC

October 24, 2011

Were you there?

http://twitter.com/#!/scope/status/128406881898205184

 

http://twitter.com/#!/scope/status/128407386783354880

 

http://twitter.com/#!/scope/status/128407898907877377

ME May Be Caused By Immune Defect

October 24, 2011

Researchers in Norway believe Chronic Fatigue Syndrome (CFS), also known as ME, may be caused a wayward immune system attacking the body.

The illness, the cause of which is uncertain and has no known cure, has attracted significant controversy.

A small study, reported in PLoS One, showed a cancer drug, which inhibited the immune system, relieved symptoms in some patients.

The ME Association said the findings were “very encouraging news”.

Doctors in Norway stumbled across their first clue in 2004 when treating a patient with both Hodgkin’s lymphoma, a cancer of the white blood cells, and CFS.

When she received cancer treatment, her fatigue symptoms improved for five months.

‘Dramatic’

The latest study, carried out at the Haukeland University Hospital in Bergen, built on the previous discovery by testing 30 patients with CFS.

Half were given two doses of Rituximab, a cancer drug which eliminates a type of white blood cell, while the other half were given a fake treatment.

In those patients receiving the drug, 67% reported an improvement in a score of their fatigue levels. Just 13% showed any improvement in the sham group.

Øystein Fluge, an oncology consultant at the hospital, told the BBC: “There was a varied response: none, moderate, dramatic relief of all symptoms.

“Two had no recurrence [of their symptoms], their life was turned completely around very dramatically.”

Their theory is that a type of white blood cell, B lymphocytes, are producing an antibody which attacks the body.

The drug wipes out the lymphocytes which in some cases may “reset the immune system”, however, in other patients the fatigue symptoms would return when more B lymphocytes were made.

Caution

Mr Fluge said: “I think the fact that patients responded to treatment, improved cognitive function, fatigue and pain makes us believe we’re touching one of the central mechanisms.

“But we’re scratching at the surface, I would not characterise this as a major breakthrough.”

The researchers are now investigating the effect of giving more doses over a longer period of time.

If their hunch is right it will throw up more questions, such as what is the immune system actually attacking and whether or not an actual test for CFS/ME be developed.

Dr Charles Shepherd, the UK ME Association’s medical adviser, said: “The results of this clinical trial are very encouraging news for people with ME.

“Firstly, they help to confirm that there is a significant abnormality in immune system function in this disease.

“Secondly, they indicate that altering the immune system response in ME could be an effective form of treatment for at least a subset of patients.

“We now need further clinical trials of such anti-cancer agents to see if other research groups can replicate these findings.”

Cystic Fibrosis Charity Faces Threat

October 24, 2011

A charity warns today that it has just days left to raise £6m for an effective treatment for cystic fibrosis (CF) or a “once-in-a-lifetime opportunity” will be missed.

A shortfall in funding, caused by the economic slump, means that clinical trials to repair faulty genes in sufferers of the chronic lung disease could be axed. Early trials have shown that the treatment prevents lung damage caused by the disease, which affects 9,000 people in the UK.

The Cystic Fibrosis Trust has so far raised £1m this year. Gifts and guaranteed pledges are needed by the end of October for trial drugs to be ordered.

Professor Eric Alton, of the UK CF Gene Therapy Consortium, said: “A decade of work has put us in this position. No one else in the world is capable of doing this, and it is crucial for CF patients that we should push forward.”

Arvind Jain

October 24, 2011

Delays at the Great Ormond Street Hospital led to a boy dying an agonising death, a health watchdog has found.

Arvind Jain, 13, who had Duchenne Muscular Dystrophy, died in August 2009 after waiting months for an operation.

The ombudsman’s report found he had “suffered considerable distress” and criticised referral procedures as “chaotic and substandard”.

The Great Ormond Street Hospital said there were “failings in clinical care”.

Arvind’s sister Shushma said: “To read that he was suffering all the time, that was disgusting.

“He had been asking us repeatedly if he would get the operation and we would be constantly reassuring him that he would not die.”

The degenerative disease Arvind, who lived in Cricklewood, north London, suffered from was not immediately life threatening but in January 2009 his condition had become acute enough for him to struggle with swallowing and feeding.

He had a temporary medical solution where a tube was inserted through his nose to help him get the required nutrition.

He also experienced a number of other medical complications although none of these was considered life-threatening.

Referral process ‘chaotic’

The permanent solution recommended by his consultant paediatric neurologist was a gastrostomy insertion which would allow Arvind to feed through his stomach.

The Great Ormond Street Hospital Trust (GOSH) excels in such procedures, however, a series of communication errors meant despite repeated and urgent requests from his neurological consultant, proper investigations were not carried out into Arvind’s suitability for the operation.

After five months of delays he and his family were reassured that as soon as he got the operation he would be much more comfortable.

Another hospital also offered to carry out the operation in the event that the delays continued.

But the surgical team that was due to carry out the operation never managed to assess Arvind.

His condition deteriorated to the point where he was not well enough to be operated on and Arvind died on 9 August 2009.

The Parliamentary and Health Service Ombudsman’s report said he “suffered considerable distress and discomfort”.

It also describes a series of basic shortcomings in Arvind’s care.

The report said: “The standard of care provided for Arvind fell so far below the applicable standards as to amount to service failure.”

The ombudsman added: “I cannot say that the trust provided honest evidence-based explanations or listened to the family to understand their complaint and the outcome they were seeking.”

The family complained shortly after Arvind’s death but it took the hospital a year to arrange a meeting between the senior management, the responsible senior clinician and the family.

The medical director of GOSH, Professor Martin Elliot, said the hospital has “learned from this tragedy”.

‘We let him down’

“We apologise unreservedly to Arvind’s family. We let him down in failings of clinical care and we let his family down in the way we handled their complaint.”

Prof Elliot said the hospital has reformed its complaints procedure.

The family insist they have not yet given up on holding individuals accountable for the failures that led to the teenager’s death.

Chief executive of Muscular Dystrophy Campaign, Robert Meadowcroft, said: “Hospital staff must listen carefully to the parents of boys with this condition, as they often have a wealth of knowledge about their son’s condition.”

Amputee Veterans’ Care Gets £15M Funding

October 23, 2011

Prosthetics services for military veterans are to receive funding of up to £15m, Prime Minister David Cameron has announced.

A review of services was carried out after concerns from charities and service personnel that the NHS was under-equipped.

The Department of Health has now said a number of specialist units will be set up across England.

Mr Cameron said the report set out a “clear strategy” for better services.

The £15m, which has been found from the Department of Health’ s contingency fund, is to be invested between April 2012 and 2015.

The government will now work with service charities, including Help for Heroes and The British Limbless Ex-Service Men’s Association (Blesma) as well as NHS specialists, to create new high-quality NHS facilities for prosthetic limb provision and rehabilitation.

The aim is to bring them up to the same standard as the Defence Medical Service at Headley Court. That deals with personnel who are still serving, but once they leave it is the NHS centres which take on their care.

The government is also working with the administrations in Scotland, Wales and Northern Ireland to improve arrangements there.

Feedback from those using and running these facilities will also be applied to services run for patients from all backgrounds who need such care.

‘Confidence’

Dr Andrew Murrison MP, who compiled the report for the government, said: “The rapid rollout of the recommendations I made last year on veterans’ mental health has been impressive and I look forward to these latest proposals being progressed with the same enthusiasm.

“I hope the action points I have offered honour the military covenant and benefit military amputees but I have been clear that they should also help to improve the service available to all limb centre users.”

Prime Minister David Cameron said: “As a country and as a government we have a particular duty to servicemen and women injured on operational duty.

“This report maps out a clear strategy for ensuring that those brave people can be confident they will receive the same levels of access to prosthetic limbs and specialist care from the NHS as they do at Headley Court. They deserve nothing less.”

Jerome Church, general secretary of Blesma, said: “Over the last few years, our young veterans preparing to move on into civilian life have become increasingly concerned about the standard of prosthetic support they will receive from the NHS.

“We are now much more confident that the NHS will be able to provide the prosthetic support veterans need and deserve – for the rest of their lives.

“We are also delighted that this enhanced support will be extended to all veterans who lost limbs in earlier conflicts.!

Bryn Parry, chief executive of Help for Heroes, added: “It’s recognition that military amputees need specialist support not currently available within the NHS.”

Disabled French Woman Kidnapped In Kenya Dies

October 22, 2011

Sad news.

A French woman kidnapped from Kenya by Somali gunmen earlier this month has died, say French officials.

Diplomats said they were told of Marie Dedieu’s death by contacts through whom they had been negotiating her release.

The exact date and circumstances of her death are not known, but her poor health and the fact medication had been withheld had led to fears this “tragic outcome was highly likely”, they said.

Mrs Dedieu, 66, was one of four Westerners recently taken from Kenya.

In September, Briton David Tebbutt was killed and his wife Judith abducted from a luxury resort of Kiwayu on the Kenyan coast.

Earlier this month, two female Spanish aid workers with the charity Medecins Sans Frontieres (MSF) were seized from the Dadaab refugee camp near the Kenya-Somalia border.

All three kidnapped women are still missing.

Sadly this news has not come as a great surprise to people who knew Marie Dedieu in Lamu. She had been spending the European winters there for several years and her friends say she was in very poor health with cancer and a heart condition making daily medicine a necessity.

If as the French foreign ministry suggests she was denied access to the life saving medicine, her death was tantamount to murder. If the pursuit of a hefty ransom payment was the motive for the kidnapping then taking somebody in poor health who was also severely disabled seems a strange choice. It is not clear who was holding her.

In lawless Somalia, al-Shabab, pirate gangs and bandits are all possible candidates. When money is the goal the groups also co-operate with each other. The Kenyan government is likely to portray Mrs Dedieu’s death as another reason to justify the incursion into Somalia to fight al-Shabab. But analysts say there is no concrete proof that al-Shabab was behind the recent kidnappings and the group has denied any involvement in them.

Mrs Dedieu, who was a wheelchair-user and had to take regular medication for cancer and heart problems, had lived part-time in Kenya since the 1990s.

She was taken from her beachfront home on the small island of Manda in the Lamu archipelago on 1 October by an armed gang.

Officials confirmed she had been taken by sea to Somalia and that the kidnappers did not take her wheelchair or medication with them.

In a statement, the French foreign ministry expressed its “indignation at the total lack of humanity and the cruelty shown by the kidnappers of our compatriot”.

It demanded that those responsible be brought to justice.

Kenya troops

The Kenyan government said Mrs Dedieu died in the captivity of Somalia’s militant Islamist group, al-Shabab.

“The kidnapping and detention of Marie Dedieu was a terror act not only against her, but also against Kenya, her home country France and the entire world,” it said, in a statement.

But correspondents say it is not clear that al-Shabab, which controls most of south and central Somalia, abducted her.

Somalia has been wracked by fighting between various militias for two decades, so weapons are widely available and there are many armed groups who could be responsible.

Al-Shabab has not previously seized foreigners far from its own territory, while the numerous pirate gangs working out of Somalia normally kidnap ships and their crew for ransom rather than operating on land, correspondents say.

Kenya has responded to the spate of kidnappings by sending troops into Somalia on Sunday to fight the militants.

In a statement, MSF said it wanted to “firmly diassociate” itself from any military action aimed at freeing the Spanish doctors.

“Abductions are extremely complex and need to be handled with care. Therefore, MSF is very concerned that security and the resolution of the incident could be compromised by any use of force being related to the case,” MSF Spain head Jose Antonio Bastos said.

He said MSF had no verifiable information on who was responsible for the abductions and what their motives were.

“MSF is currently engaging with all relevant actors to seek the safe and swift release of our colleagues and any use of force could endanger this,” Mr Bastos said.

A Somali government general, Yusuf Dhumal, told the BBC Somali Service on Tuesday that his troops were with the Kenyan force heading towards an al-Shabab-held town of Afmadow, 120km (75 miles) from the border

Reuters news agency reports that columns of al-Shabab battle-wagons mounted with heavy machine guns have rushed to reinforce Afmadow, which is about 90km north of the port city of Kismayo, al-Shabab’s main economic power base.

Al-Shabab has denied carrying out any abductions and has warned of attacks in Kenya unless the troops withdraw.

The group, which has links with al-Qaeda, has threatened Kenya on several occasions in the past.

But it has rarely acted outside Somalia – the only previous major attack it has said it carried out was a 2010 suicide bombing in Uganda’s capital Kampala in which dozens of people died.

Fresh Protests Highlight Severity Of Benefit Cuts For Disabled People

October 22, 2011

Demonstrations are being held across the UK in protest against benefit cuts for disabled people.

The Hardest Hit marches, organised by the Disability Benefits Consortium (DBC) and the UK Disabled People’s Council (UKDPC), aim to highlight cuts to local services for disabled people in the government’s welfare reform bill.

The demonstrations in Birmingham, Brighton, Bristol, Leeds, London, Manchester, Newcastle, Norwich, Nottingham, Belfast, Cardiff and Edinburgh come after campaigners claimed that disabled people face harsher cuts to their benefits than first envisaged.

The warning came after figures released by the government showed that savings generated by a proposed reduction in payments would be £1bn less than expected.

An analysis for the Hardest Hit campaign shows that the government will need to take an extra £1bn from social security to make up the shortfall.

Ministers have admitted that limiting the employment and support allowance will save only £4bn, rather than £5bn originally envisaged, over five years. Neil Coyle, director of policy at the Disability Alliance, said: “The Treasury has made it clear that they do not care where the axe falls – you simply have to deliver the savings. With the disabled already being targeted we will see more cash coming from the people least able to pay and in greatest need.”

One of the most significant, though little-heralded, changes of the government’s welfare reform bill, which is passing through the House of Lords, is that the welfare state should no longer be regarded as a savings bank. In the past the public were told that by paying into national insurance, they would be guaranteed benefits should they fall on hard times. Instead, the government will limit employment and support allowance to a year.

A spokesman for the Department for Work and Pensions said the government was committed to supporting disabled people.

He added: “However, the current benefit system is not always reaching those who need it most, which is why we will be introducing the new personal independence payment to ensure people get the right levels of support.”

Disability Groups Fear Further Benefit Cuts

October 22, 2011

Disabled people face harsher cuts to their benefits than first envisaged after figures released by the government showed that savings generated by a proposed reduction in payments would be £1bn less than expected.

An analysis by disability campaigners mobilising for the Hardest Hit marches this weekend, protesting about cuts in welfare support, shows that the government will need to take an extra £1bn from social security to make up the shortfall.

Ministers have admitted that limiting the employment and support allowance will save not £5bn but £4bn over five years. Neil Coyle, director of policy at the Disability Alliance, said: “The Treasury has made it clear that they do not care where the axe falls – you simply have to deliver the savings. With the disabled already being targeted we will see more cash coming from the people least able to pay and in greatest need.”

One of the most significant, though little-heralded, changes of the government’s welfare reform bill, which is passing through the House of Lords, is that the welfare state should no longer be regarded as a savings bank. In the past the public were told that by paying into national insurance, they would be guaranteed benefits should they fall on hard times. Instead, the government will limit employment and support allowance to a year.

Coyle says that many of the allowance’s claimants, many of whom are disabled by terminal illness or severe injury, will lose £94.25 a week. “That’s £4,900 a year. This is unjust and wholly targets disadvantaged people and is much higher than the government’s quoted £36 a week.”

Jaspal Dhani, chief executive of the United Kingdom Disabled People’s Council, an umbrella group for hundreds of local disabled people’s organisations, said: ” It is extremely worrying to see that they need to save a further billion pounds. Does this mean a further round of cuts to the support disabled people rely on? Disabled people can’t be squeezed any further, that is why so many of us will be joining the Hardest Hit protests in cities across the country and online.”

Although Labour leader Ed Miliband and David Cameron clashed over the issue earlier this summer – when the Labour leader said that 7,000 cancer sufferers could lose out – there has been no stepping back from the government. Steve Winyard, chair of the Disability Benefits Consortium campaign group, which represents 40 charities, said: “Disabled people are experiencing a perfect storm of escalating living costs and cuts to support and benefits. But daily life costs more if you have a disability, which means disabled people are hit disproportionately hard.

“Many are already living in fear of cuts to essential benefits, which is why so many people are taking part in Hardest Hit protests, despite the physical and financial difficulties of getting to an event. If the government announce an extra billion pounds of cuts to disability benefit the impact will be devastating. We cannot sit back and allow the cuts to go unchallenged.”

The Department for Work and Pensions said there were always “revisions to budgets and savings and these fluctuate with the economy”. It added: “This government is absolutely committed to supporting disabled people and we continue to spend more than £40bn a year on disabled people and their services. But the current benefit system is not always reaching those who need it most, which is why we are introducing the new personal independence payment to ensure people get the right levels of support.”

PIP Assessments Could Mean Repeat Of WCA Chaos, Claims Scope

October 21, 2011

As many as 2 million disabled people risk losing welfare support because of the introduction of a flawed assessment scheme that means billions of pounds will not be paid to those who need it most, warns the disability charity Scope.

The charity says the Personal Independence Payment (PIP), which the government is introducing to replace Disability Living Allowance (DLA), has a failed regime of eligibility criteria. Scope is backing weekend protests by disability groups who it says are the hardest hit by government cuts.

There are 1.8 million working-age DLA recipients – and Scope says all will be affected by the government’s proposal to reassess recipients using a new work assessment and fewer rates of benefit. At least 600,000 people will lose out because the lowest rates of support for care are being cut and almost all other working age claimants will be wrongly assessed, says the charity.

The government’s own figures show that to meet the Treasury savings targets, another £366m has to be found. There is concern amongst campaigners that the new assessment, which will reassess all new and existing claimants who are of working age, will be used to target disabled people who receive the middle and higher rates of care payments.

Scope says the government is introducing a tick-box medical assessment that “won’t help it achieve the very aims it has set out, and could see a repeat of the problems it has faced over its fitness to work test, the Work Capability Assessment, which has seen thousands of people appealing decisions by assessors, with 40% found in favour of the claimant”.

Richard Hawkes, chief executive of Scope, said the assessment should take into account how a disabled person’s daily life is affected by barriers and extra costs such as poor housing, lack of public transport and a lack of a circle of friends or relatives

“We are concerned that the new assessment the government is planning to use is flawed because it doesn’t take into consideration all the barriers that disabled people face in daily life. Without understanding the extent of barriers people face, the government has no hope to overcome them and genuinely enable people to take part in daily life.

“We believe that the alternative assessment we have designed will give disabled people the opportunity to address the barriers they face and therefore drive down costs in the long-term, rather than placing a sticking plaster over them.”

A DWP spokesman said the figures were speculative. He added: “At the moment over 70% of people get DLA for life without any systematic checks to see if their condition has changed. This is why we are introducing the Personal Independence Payment with a new face-to-face assessment and regular reviews – something lacking in the current system – to make sure people are getting the right levels of support”.

Able Radio: Charities, Campaigns And Celebs

October 20, 2011

Readers, here is what I said on Able Life on Able Radio with George Johnson yesterday. It is no longer a sneak preview, because, as of this week, you can hear the whole show. If you can spare an hour, that is.

Anyway, I’m talking about charities, campaigns and celebrities, and for those who don’t want to hear the music, I start about 10 minutes in.

Nicky Clark On The Airwaves

October 20, 2011

Nicky Clark took to the airwaves today to discuss Ricky Gervais.

  • Here she is on BBC 5 Live’s Breakfasst Show.
  • And here she is on Radio 2 with Jeremy Vine.
  • The issue was also discussed on 5 Live’s Your Call, which you can listen to here.

Nurses To Be Given Assisted Suicide Guidelines

October 20, 2011

The Royal College of Nursing has launched new guidance for nurses and healthcare assistants on how to respond to requests from patients related to assisted suicide.

The document aims to reinforce that assisting a suicide is illegal and provides practical examples of how to deal with difficult conversations.

Radio 5 live Morning Reports spoke to Tim Curry from the RCN.

Gavin Proctor

October 20, 2011

There are no words to describe my feelings about this story.

A power cut during the night killed a man with muscular dystrophy as nursing home staff were unable to connect a back-up power supply, an inquest heard.

Gavin Proctor, 35, a resident at the Ashdale home in Pembroke, was on a ventilator to help with his breathing.

A jury, which returned a narrative verdict, heard he probably would have lived if an emergency generator or a battery pack was connected.

Mr Proctor’s parents Gary and Val want tougher rules for nursing homes.

“The Health and Safety Executive and Care Standards in Wales should have stricter rules for nursing homes to safeguard vulnerable patients like our son Gavin, to stop this tragedy happening to other families,” the couple, who also lost their first son the the disease, said in a statement.

“Although Gavin was deteriorating in general, at the time of his death he was in good health. It’s quite clear to us that Ashdale nursing home failed in the duty of care for our son.”

His father, Gary, added that he believed the home should be punished.

“When you consider we lost our first son through the same disease and we lost this one, not because of the disease really, but because of errors made – and no punishment is applied.

“If I got a speeding ticket I get three points on my license and a £60 fine, but our son dies and there’s nothing – not even a smack on the hand. I don’t think that’s right.”

Torch

The power failure happened early on 4 January 2009, cutting off the supply to his ventilator and knocking out all the lights.

Senior managers at the home told the jury staff were told regularly how to switch on a back-up generator in an emergency.

However the inquest heard even if the generator had been switched on, it would not have saved Mr Proctor’s life because it did not provide power to his room.

Staff would have had to run extension leads to him in the dark, or use back-up battery packs.

The nurse on duty that night, Helen Corcoran, said she had never connected the battery pack before, which Mr Proctor used for going outside, and was not able to see because the torch she found was not working.

Mr Proctor suffered a cardiac arrest and died at the scene.

The cause of death was given as muscular dystrophy.

The Crown Prosecution Service (CPS) has already decided that the home owners will not face prosecution for Mr Proctor’s death.

Did Nicky Clark Take My Advice Yesterday?

October 20, 2011

Yesterday, I Tweeted special mother, Disability Rights Campaigner and writer Nicky Clark to say:

http://twitter.com/#!/samedifference1/status/126607538954317824

I have just noticed that, soon after my Tweet was sent out, this appeared at the Guardian‘s Joe Public blog. I’m not sure whether Nicky took my advice, or whether she had already written the piece. Either way, it is, as usual, brilliant, and I’m very glad that it was written and published.

MS Centre To Close In January

October 19, 2011

A care centre for people with multiple sclerosis in Warwickshire is to close by the end of January.

The MS Society will send letters to those involved this week and a redundancy consultation has started with staff at the Helen Ley Centre.

The centre has nine residents and also offers day-care and holidays.

The society said it would try to find alternative care for patients and would consider external business offers to continue running the home.

In July 2010 the society announced its decision to move out of providing respite care directly.

It has been trying to sell the Leamington centre, along with ones in York, Surrey and East Lothian.

A deal to buy the Helen Ley Centre fell through earlier this month.

Ricky Gervais Tries To Defend Offensive Tweets

October 19, 2011

Unsuccessfully, in my eyes. Readers, I’ve never heard of slang dictionaries, or urban dictionaries. Maybe that makes me a few letters short of the English alphabet- but I don’t think there were such things when I started using slang as a teenager. Even if they do exist today, that’s hardly the point, is it? Fifty year olds know what the ‘M’ word used to mean. So they should have stopped using it long ago, especially if they are famous or in the public eye.

Ricky Gervais has also contradicted himself in the Sun article below. Or maybe he doesn’t know that Susan Boyle has learning disabilities?

When, oh when, will British comedy go back to being just harmless fun?

COMIC Ricky Gervais was rapped by disability groups last night for a string of “mong” jokes.

He uses the word on Twitter in phrases like “Good monging” and “Two mongs don’t make a right”.

He posts snaps of himself in what he calls “monged-up” poses, with captions like: “My favourite drink is toilet.”

And he once referred to singer Susan Boyle as “looking like a mong”.

Mongol is an offensive and dated reference to people with Down’s Syndrome.

Mark Gale, of Mencap, said yesterday: “It’s very disappointing. Such language can perpetuate discriminatory attitudes.”

Frank Buckley, of Down Syndrome Education International, said: “Most would consider it as offensive as comparable terms of abuse referring to racial background or sexual orientation.”

But Ricky, 50, insisted: “I have never used the word Mongol. I have used ‘mong’, but never to mean Down Syndrome and never would.”

He added: “The meaning of words change over time — ‘gay’ for example. The modern use of the word ‘mong’ means dopey or ignorant — it’s in slang and urban dictionaries.”

Thanks For The Coverage, SocietyGuardian, But…

October 19, 2011

A new report from the University of Glasgow, which finds that there has been a significant increase in the amount of negative reporting of disability issues in the print media. Commissioned by disability equality organisation Inclusion London, the report – Bad News for Disabled People: how newspapers are reporting disability– looked at newspaper stories from 2004-05 and compared them with coverage of disability issues over the last year. It found fewer articles “which describe disabled people in sympathetic and deserving terms”, while the number of reports on disability fraud had risen. Researchers also hosted focus groups, at which the frequency of stories of “benefits cheats” was highlighted. Anne Kane, policy manager at Inclusion London, said:

The findings of this research will strike a deep chord with disabled people who have to live with the daily reality of offensive, hate-filled and false media coverage – coverage that is becoming more offensive in rhythm with the savage impact of government spending cuts on disabled people.

The researchers at Glasgow University have done a great service by analysing the disturbing way in which bad government policy finds its reflection in pejorative language and an increasing portrayal of disabled people as ‘undeserving’.

The disabled people questioned in the study said they felt threatened by the changes in the way disability is being (mis)reported and by the planned cuts to benefits – with these two assaults combining and reinforcing each other. This points to the action that needs to be taken: a stop to cuts that threaten more isolation and poverty and a stop to media coverage that stigmatises and breeds fear.

 

Next time, please tell me something I don’t know. Although I really wish I didn’t have to write that. My sarcasm is aimed at the issue, not @SocietyGuardian who is very sensitive to disability issues.

The Ultrasonic White Stick

October 19, 2011

The ultrasonic waves used by bats have inspired a new piece of technology which can help blind people to detect obstacles.

Developers have come up with stick which can vibrate when it’s near objects, so that the user can sense their way around.

Jenny Hill reports.

Best Of The Rest Special: Language, Twitter and Ricky Gervais

October 19, 2011

When this blog was very young, readers, I used to do a link round-up feature called Best of The Rest. There are so many disability blogs these days that I just don’t have the time to read them all, so it stopped.

At the end of last week, however, Ricky Gervais made disablist comments on Twitter. I seem to have missed the whole incident, but luckily three four great disability bloggers didn’t. They all wrote such great posts that I decided to do a list of links. So here we go:

Dyslexic Boy Wins Right To Challenge NI Education Board

October 19, 2011

This is part of the Is Dyslexia A DisAbility? Debate at Same Difference.

A nine-year-old dyslexic boy has won the right to challenge his lack of direct access to a specialist literacy teacher.

The boy was granted leave to seek a judicial review at the High Court on Tuesday.

Judge Mr Justice Treacy heard that nearly 70 other children within the South Eastern Education and Library Board are in the same situation.

The boy, who is from the greater Belfast area, cannot be named.

He is one of 400 children in the education board area that requires external help with literacy problems.

The boy can only spell words of two to three letters, although, he has been assessed as being of average intelligence or cognitive ability.

Mr Justice Treacy said: “The issue is of some importance and also there is a degree of urgency.

“If the applicant is right it could have very serious consequences for the applicant and indeed for other children who may be in the same position.”

Psychological harm

Rachel Hogan of the Children’s Law Centre said: “The consequences for a child like this are very, very severe.

“It’s not just about reading and writing and how they learn.

“They feel different from their peers and they would often suffer emotional and psychological harm as a result of this.”

The legal challenge, taken in the boy’s name by his mother, is seeking to judicially review the decision not to allocate direct teaching support on the basis of his needs.

It claims the board failed to consider its statutory duty and to provide early intervention support, and was motivated by a desire to save resources.

Mr Justice Treacy granted leave to apply for a judicial review on the basis that an arguable case had been established on all grounds of challenge.

The case will proceed to a full hearing next month.

Lack Of Access To Parliament For Wheelchair Users

October 18, 2011

Many thanks to Lisa Nundy MP for asking this question in Parliament.

Many thanks also to Left Foot Forward for the video and for accepting this guest post from Lisa Nundy MP today.

 

Trailer For New Comedy Life’s Too Short

October 18, 2011

I’m looking forward to watching this.

Nicolas Hamilton On Brothers, Dads And Dreams

October 18, 2011

FOR Formula One ace Lewis Hamilton, driving a racing car is second nature – but for his brother Nicolas it can be an agonising experience.

 

Nicolas, 19, was born with cerebral palsy, a condition which leads to problems with movement, posture and co-ordination.

 

But the brave youngster has defied the odds — and the doctors — by completing his first season in the Air Asia Renault Clio Cup saloon-car racing championship.

 

Watching him hunched over the wheel of his Total Control Racing team car at a Brands Hatch race earlier this month, symptoms of the chronic illness were plain to see but his top ten finish in the contest also confirmed an undoubted talent.

 

That result in the final race of the season contributed to a 14th-place championship finish overall, delighting not only Nicolas but also his father Anthony, who masterminded Lewis’s racing career.

 

Nicolas — who has relied on walking sticks and wheelchairs for much of his life — said: “I don’t think I’m too bad for someone who only started racing six months ago.

 

“I never thought I’d be able to walk, let alone drive a racing car.

 

“My legs are weak and I have very little muscle tone. I have to do a lot of work on my Power Plate (a vibrating piece of gym equipment that causes muscle contractions) just to be able to walk around.

 

“Doctors reckoned I wouldn’t be able to do it but I’ve proved them wrong. I’ve shocked a lot of people including Lewis and my dad — not just by getting in a car but by progressing so quickly. I really am following my dream.” Nicolas’s car has been modified so he can compete alongside able-bodied racers.

 

It has a moveable seat, wider pedals that are raised off the floor and a hand-held clutch that allows him to get up to speeds of 130mph.

 

Surrounded by motorsport from an early age, Nicolas has been encouraged by Anthony and by seeing Lewis, 26, graduate from karting, Formula Three and GP 2 before eventually arriving in F1 and becoming world champion in 2008.

 

Nicolas said: “Lewis has always tried to encourage me.

 

“He has seen me on simulators and thought I was good and said I should try racing but I wasn’t sure I’d be capable. I don’t know if Dad was initially convinced because I was a disabled kid.

 

“The turning point was last year when Lewis bought me my own personalised helmet for my 18th birthday and Dad was like, ‘Now we just need the car’.

 

“I started testing last September and in February I got my racing licence after proving to officials that I could release my seat belts and escape a crashed car in just seven seconds. Two months later, I made my debut at Brands Hatch at the opening race of the season.”

 

Nicolas has been attending F1 races since Lewis made his debut in 2007 and McLaren star Lewis is often among the spectators watching his brother. But Nicolas is wary of any comparisons between the two.

 

He said: “Lewis will always try to make a race and just to know he’s supporting me is a massive boost.

 

“But any advice he offers doesn’t really work with front-wheel drive cars! Lewis encourages me if I’ve gone wrong in the race and tells me what I could have done differently but in terms of driving the car, the advice comes from my team.

 

“Lewis is very much his own person and I have never lived in his shadow. Obviously we are both competitive but I am never trying to compete with him. I am just trying to be the best that I can be.”

 

Nicolas and Lewis were brought up in a council house in Stevenage, Herts, by Anthony and Nicolas’s mum Linda. Lewis’s mum Carmen — Anthony’s ex-wife — lives 20 miles away in London.

 

Anthony gave up his job with British Rail in 1995 to dedicate himself to Lewis’ career and he is now right behind his younger son.

 

Nicolas said: “My dad has always pushed me. He is a hard taskmaster.

 

“He sees that I’ve got a lot of potential and he wants the best for me. Even though I am in my first year, he can see that I am better than people in their third year and they have been racing since they were eight years old.”

 

Anthony said: “I’m extremely proud of Nicolas and it’s great that he’s been winning races but that’s not the significant thing here.

 

“When Nic was 18 months old and not walking, we were getting worried. The hospital said he would be all right and he would grow.

 

“The next thing they told us was Nic had cerebral palsy and not only was he not going to walk properly but he would need a wheelchair and bifocals by the age of two.

 

“Nic has used his wheelchair when it’s been necessary and he has fallen out numerous times and hit his head on the floor but I have never said that he can’t drive because of his disability.

 

“He has dislocated his rib occasionally and it’s happened this season. It’s because of his posture and the way that he sits in the car but he just gets on with it.

 

“I have never once heard him say, ‘I am not well, I can’t do this or I can’t do that’. Nic never complains about anything.

 

“There will be a lot of pressure on Nic, but that’s life.

 

“His is an inspirational story. Not just for disabled people but for anyone with a dream.

 

“Nic might not make it past the next stage but equally he could be good enough to test in F1.

 

 “I think it’s going to be very exciting. He is Lewis all over.”

All Terrain Mobility Scooter

October 18, 2011

A scheme to give disabled people a taste of the countryside could be rolled out around the UK.

Countryside Mobility South West hires all terrain mobility scooters and a wheelchair accessible boat.

More than 500 people have paid £2.50 each to hire a scooter in the first year of the project.

Charity Living Options, which runs the scheme at 20 parks and lakes around the South West, is now looking for other venues around the UK.

James Maben of Countryside Mobility South West said: “The scheme is based on town centre Shopmobility where people hire mobility scooters to do their shopping.

“What we have done is take that principle out into the countryside.

“People are booking their holidays in the South West because of the scheme.”

Wheelchair user Gordon Guest, at Haldon Forest in Devon, said: “When I got into a wheelchair I thought I would be stuck in a city.

“Now I can get out into the countryside in some amazing places.”

Phillip Schofield Opens Disabled Children’s Centre

October 17, 2011

A new extension to a centre for children with disabilities in Berkshire and Oxfordshire has opened.

The Chiltern Centre in Henley provides short-break care to children with complex medical health needs.

The extension includes two new bedrooms, a specialist bathroom and increased living and play space.

It was funded through a £268,000 government grant, and was opened by TV presenter Phillip Schofield, who is the charity’s patron.

‘Good news’

Chair of the trustees at the Chiltern Centre, Paul Barrett, said: “Phillip Schofield turned up and did the honours for us in great fashion. He’s our celebrity patron as he lives locally.

“We cater for about 85 families from the Thames Valley, at weekends and holidays we’re full to bursting.

“This extension is very good news.”

It was funded through a grant from the Department of Health’s Social Enterprise Investment Fund.

The centre has been running as an independent charity for eight years.

Schofield announced a fundraising initiative in February, which has so far raised £170,000 for the running costs of the centre.

The Sonic Bomb

October 17, 2011

Charlie Swinbourne has written a review of an alarm clock for deaf people that really made me smile. So I thought I’d link it here for any readers who share my sense of humour- or those who could use a really loud wake up call!

Face Blindness Cause Studied

October 17, 2011

The awkwardness of asking someone out as a teenager is bad enough – but for Paul Schofield not recognising the girl he liked made things even worse.

For Mr Schofield, now aged 63, the moment he experienced the confusion was the first indication he had prosopagnosia or “face blindness”.

It is a condition, the Isle of Wight resident says, that still makes him feel embarrassed and socially awkward.

Now, he is hoping that taking part in research carried out at Bournemouth University he will finally understand what causes it.

The memory of realising he had problem while he was at secondary school, is still strong in Mr Schofield’s mind.

“I met a girl and quite liked her, and I called round to her house to ask her out,” he said.

“When the person answered the door I said, ‘Is Loretta in?’. She was Loretta, I didn’t recognise her.

“[Prosopagnosia] prevents you from being more forward, people really don’t like not to be recognised.”

Researchers are hoping a test to record people’s eye movements will produce results to help sufferers who say they live in a state of low-level confusion and cannot recognise members of their own family.

Sometimes those who have it even have difficulty placing their own faces.

“It’s absolutely specific to faces, they know what a face is, they know the basic configuration of a face but they just fail to identify individuals no matter how close those people are to them,” Dr Sarah Bate, Bournemouth University said.

Researchers at the university estimate that one in 50 people in the UK suffer from some form of the condition.

The study involves sufferers like Mr Schofield looking at a number of faces for five seconds, with a recording made of his eye movements as he processed what he saw.

When it was carried out on people without the condition, the test showed they looked at the face with a regular triangular pattern of movements, which moved about from the eyes, nose and mouth.

It is believed people with the disorder do not form the triangle from the eyes to the nose and mouth.

‘Possibly hereditary’

“Paul focused on less individual features, doing almost the reverse,” Dr Bate said.

After the test Mr Schofield said: “I discovered that I was actually looking at the person’s mouth more than the eyes, whereas in my mind I was looking at the eyes quite a lot.

“We also discovered that I was looking at a wider field of view, people’s ears and their foreheads.”

There is no cure for the condition which could be hereditary. Sufferers say they cope by remembering non-facial information like someone’s voice or hair style.

Prosopagnosia features on BBC Inside Out South on Monday, on BBC One at 19:30 and on BBC iPlayer.

Horizons And History Months

October 17, 2011

Where have you seen my latest Disability Horizons article before, readers?

US Study Finds Link Between Low Birth Weight And Autism

October 17, 2011

Babies born weighing less than 4lb (1.8kg) could be more prone to developing autism than children born at normal weight, a study suggests.

Writing in Pediatrics journal, US researchers followed 862 New Jersey children born at a low birthweight from birth to the age of 21.

Some 5% were diagnosed with autism, compared to 1% of the general population.

But experts say more research is needed to confirm and understand the link.

Links between low birthweight and a range of motor and cognitive problems have been well established by previous research.

But the researchers say this is the first study to establish that these children may also have a greater risk of developing autism spectrum disorders.

The babies in the study were born between September 1984 and July 1987 in three counties in New Jersey.

They all weighed between 0.5kg and 2kg or a maximum of about 4.4lb.

At the age of 16, 623 children were screened for risk of an autism spectrum disorder (ASD).

Of the 117 who were found to be positive in that screening, 70 were assessed again at age 21.

Eleven of that group were found to have an autism spectrum disorder.

From these results, the researchers calculated an estimated prevalence rate of ASD of 31 out of 623 children, which is equal to 5%.

Jennifer Pinto-Martin, professor at the University of Pennsylvania School of Nursing and director of the autism centre where this research was conducted, said: “Cognitive problems in these children may mask underlying autism.

“If there is suspicion of autism or a positive screening test for ASD, parents should seek an evaluation for an ASD. Early intervention improves long-term outcome and can help these children both at school and at home.”

Dig deeper

But Dorothy Bishop, professor of developmental neuropsychology at the University of Oxford, said it was important to put the findings in perspective.

“The association looks real, but nevertheless, most low birthweight children don’t have autism, and most children with autism don’t have low birthweight.”

Georgina Gomez, action research leader for The National Autistic Society, said more research is needed to confirm the link between low birthweight and autism and better understand why babies born underweight may be more prone to developing autism.

“Low birthweight has been linked to a range of motor and cognitive problems and often goes hand-in-hand with premature birth and birthing complications.

“It is important to dig down further to try to understand the biological processes and events that could explain this proposed connection.”

New Fund For Carer Breaks

October 17, 2011

A funding package has been announced to allow more than 3,500 carers to have short breaks from their responsibilities.

A total of almost £934,000 has been allocated to 48 organisations across Scotland.

The funding has been offered to both young carers and adult carers.

Those they are looking after include disabled children, people with dementia or mental health problems, and adults with learning or physical disabilities.

All the projects will be run by voluntary sector organisations.

One of the organisations selected to benefit from the new funding is the Young Carers Project run by Perth and Kinross Association of Voluntary Service.

Co-ordinator Raymond Jamieson said: “This grant will enable us to start up the homework club.

“This club will give the children a safe, quiet environment to do their homework.

“I will also provide them with an opportunity to socialise with their peers outwith the caring responsibilities they face at home.”

Barber Shaved ‘Fool’ Into Man’s Head, Court Told

October 16, 2011

A barber shaved the word “fool” in 1in letters on the back of the head of a man with severe learning difficulties, a court has been told.

Michael Campbell, 35, who has no formal qualifications in hairdressing, had been working at Jam Cuts, in Stapleton Road, Bristol, for just three weeks when Michael Ricketts walked into the salon on 11 February.

Ricketts, 49, has communication difficulties and was described at the court as a “vulnerable adult” who mumbled his words and was difficult to understand.

Bristol magistrates heard that he went into the barber’s and asked to have a pattern shaved into his hair. Unbeknown to him, Campbell allegedly shaved the word “fool” with a smiley face underneath, the prosecution claimed.

Giving evidence, Campbell said Ricketts had asked for a pattern and that he had shaved the word “cool”, which had then been misinterpreted. He added that he had not noticed Ricketts had learning difficulties.

Campbell denies a charge of assault and one charge of failure to answer bail. No photographs were taken of the haircut and the court is relying on live testimony.

The court heard evidence from three witnesses who said they were confident of the wording on the back of the head of Ricketts, who originally came from Jamaica.

Jackie Lester, a senior careworker for Bristol city council, working at a drop-in centre for people with learning difficulties, spotted the word when Ricketts visited on 14 February this year.

She said: “Michael had the word fool written on the back of his head, with a little line meant to be a smiley face. I was really shocked.”

Ruth Tily, defending, suggested she could have misinterpreted the word, to which Lester said: “You may suggest what you like, but I am very confident about what I saw on his head. I just couldn’t believe it. I was stunned. I asked Michael where he got the haircut from, and he said Stapleton Road.” She said that if the incident had not been reported to the police she would have done so herself as he was “a vulnerable adult”.

The case continues.

The Bike Racing DLA Cheat

October 14, 2011

A benefit cheat who claimed he could not walk was secretly filmed throwing his motorbike around while racing to victory in a British motocross championship competition.

Jake Preston, 20, claimed he was crippled with a rare condition called Syringomyelia, causing him severe pain in his neck and spine from the age of four, Bolton Magistrates’ Court heard. However benefit fraud investigators followed him at weekends as he took part in motocross races across the UK.

Preston, who had been racing bikes since the age of 10 and competed in Holland at one point, was filmed winning one race and coming third in another during the British Masters Motocross Championships in Whitby, North Yorkshire, with the defendant having “quite a talent” at handling the powerful off-road bikes across rough terrain.

He had also taken part in a construction course at Bolton College, getting to his studies in his Vauxhall Corsa, a mobility car, again paid for by taxpayers.

Preston, from Loweswater Road, Farnworth, Bolton, Lancashire, had claimed the higher rate of disability living allowance (DLA), for both his mobility and care needs, getting around £100 per week to pay for his care and fraudulently pocketing £15,128 in total between September 2007 and March 2010.

He pleaded guilty to a single charge of failing to notify the Department for Work and Pensions (DWP) of a change in circumstance – the improvement in his condition – which would effect his claim.

William Birtwell, prosecuting, told magistrates the higher rate of DLA was for people who need “significant care” both during the day and night.

After Preston turned 16 in 2007, he made the claim for DLA in his own right, filling in the form claiming he could not walk a yard without severe pain and stopping to rest. He also said he would fall and stumble and had problems going up and down stairs. However fraud investigators found a “significant disparity” between his lifestyle and his claim form, Mr Birtwell said.

Joe O’Conner, defending, told the court there was “no dishonesty” from Preston, as he “relied on the advice of other people” to fill in the form and simply signed it off himself.

Preston will be sentenced later after the preparation of a pre-sentence report. Preston was sentenced to a 12-month community order with the requirement to do 250 hours of unpaid work. He was also ordered to pay costs of £150 at £10 per week and must now pay back the benefit payments he fraudulently claimed.

Victoria Tube Station Staff Told Not To Help Blind Passengers

October 14, 2011

Victoria Tube station staff have been told they cannot help visually-impaired people (VIPs) to platforms at peak times during the station’s renovation.

A leaked document advised the London workers not to provide assistance when a one-way escalator was in operation.

The Rail, Maritime and Transport union said it sent out the wrong message in the run-up to the Paralympic Games.

However, London Underground (LU) said VIPs were given travel advice and could be offered alternative transport.

Work to refurbish the 42-year-old escalators in the main ticket hall began in January as part of a £700m redevelopment to cope with an increasing number of passengers.

During the evening rush hour the two escalators in operation are in the up position to clear the platforms as quickly and safely as possible.

The memo, to a duty station manager, said staff would be unable to assist any VIPs at Victoria between 15:30-19:30, Monday to Friday, because of the escalator system.

During these times VIPs are advised to travel to nearby stations, such as Pimlico or St James’ Park, or other transport arrangements are made for them.

LU said this meant they avoided crowded conditions and the move had been welcomed by many passengers.

But, the RMT argues if they had enough staff they could assist VIPs regardless of the refurbishments.

RMT General Secretary Bob Crow said: “In the countdown to the Paralympics what sort of message are Boris Johnson and his transport officials sending out to the world when the visually-impaired are effectively banned from London’s biggest tube hub because he refused to listen to RMT warnings about the impact of staffing cuts?”

Gina Newton, from Action for the Blind, described the advice as shocking.

She said: “They are supposed to be able to assist you so you can have the same journey as everybody else.

“Due to these [job] cuts I’ve had friends… where they’ve been waiting for up to 20 minutes to be assisted down to the platform.”

The one-way escalator system, which came into operation in January, is due to finish at the end of the month.

Rhys Thomas Home After Parents’ Four Year Fight

October 13, 2011

The father of a young man who suffered severe brain damage after choking on chewing gum says it has been a four-year battle to get him home.

Rhys Thomas, 20, of Holywell, Flintshire, was left disabled after gum became lodged in his windpipe in 2007.

Since then he has been in various hospitals and homes while his family have been trying to get him home.

Health officials have apologised, saying lessons have been learned.

Graham Thomas has described his frustration at the way the family were sent “from pillar to post ” as they tried to make arrangements for his son to be looked after at home.

A £100,000 extension at the family home, paid for with community support as well as a £35,000 grant, is now being used to house Rhys along with specialist carers.

‘Winning or losing’

“The system works in a way that it wants you to fail, if you fall at the first hurdle: That’s one less person for them to be worried about, and concerned about,” says Mr Thomas.

“To anybody who’s listening you’ve got to be determined and not accept ‘no’ from anybody, and pursue them even if it takes year and years.

“It’s not a case of winning or losing, but you can achieve what you set out to achieve.”

Mr Thomas says the move was delayed several times and he hopes lessons have been learnt to avoid another family going through a similar ordeal.

In a statement, the Betsi Cadwaladr University Health Board, which is funding Rhys’s care, has apologised.

The statement said: “The health board is very sorry that despite significant efforts made by Rhys’ family, health board staff and other agencies, that it took so long for Rhys to return home.

‘Valuable lessons’

“Planning Rhys’ discharge and home care has been a very lengthy process due to the complexity of his care needs.

“We have also learnt valuable lessons about how to speed up the process in such unique circumstances.”

Rhys was 15 when he had been chewing gum before he went to bed.

It became lodged in his windpipe and he suffered a heart attack, thought to have been caused by lack of oxygen.

Mr Thomas said the family were initially told they could bring Rhys home for 24-hour care by November, but delays were caused by the need to recruit and then train specialist staff.

Extraordinary People: Hayley- The World’s Oldest Teenager

October 13, 2011

An update on the progress of Hayley Okines, who has the rare condition progeria, which brings about the physical signs of premature ageing. Having been filmed on four previous occasions, she now reaches the age of 13 – the average age of death for children with the disease and a significant milestone. The documentary follows Hayley as she enjoys typical teenage pursuits such as boys and clothes, suffers a dislocated hip – a sign of her body degenerating in a way normally associated with old age – and gets fresh hope after hearing of a scientific breakthrough from the USA that may stop the ageing process.

Tablets Turned Into Braille Keyboard

October 12, 2011

A team of US researchers has devised a way for people with impaired vision to use the touchscreen of a tablet such as an iPad as a Braille keyboard.

It turns some previously fundamental thinking about how to make technology accessible to blind people on its head.

Instead of using a keyboard or mechanical writer, users type directly onto the flat glass.

The inventors used a novel design for the keyboard to overcome the lack of tactile features.

Smart keyboard

“Instead of having fingers that find the buttons, we built buttons that find the fingers,” said Stanford’s Sohan Dharmaraja, one of the researchers on the project.

Users place eight fingers on the screen and the keyboard appears. Shaking the device activates a menu, and further interaction is achieved by regular touch gestures.

Mr Dharmaraja, alongside team-mates Adam Duran – an undergraduate from New Mexico University – and assistant professor Adrian Lew, came up with the idea during a boffin’s X-Factor-style contest.

The competition, organised each year by Stanford University, challenges students to come up with some innovative future computing ideas over their summer break.

In demonstrations Mr Duran typed out a complicated mathematical formula and the chemical equation for photosynthesis.

But it also offers a solution for more basic problems.

“Imagine being blind in the classroom, how would you take notes? What if you were on the street and needed to copy down a phone number? These are real challenges the blind grapple with every day,” said Prof Lew.

There are some obvious benefits to using touchscreen technology over traditional Braille writers.

“Current physical note takers are big and clunky and range from $3,000 (£2,000) to $6,000 (£4,000). Tablet PCs are available at a fraction of the cost and do so much more,” said Mr Dharmaraja.

Promising development

As part of the project, the students had to learn Braille. The system, originally developed for the French military, is made up of six dots arranged in various patterns. They are read by people’s fingertips.

But the system can seem outdated in a modern era where touchscreens are ubiquitous.

Accessible touch screen devices such as the iPad offer a huge range of possibilities for developers and for blind and partially sighted people,” said Robin Spinks, the Royal National Institute for Blind People’s manager of digital accessibility.

“This prototype Braille keyboard for touch screen devices represents a very promising development, and RNIB look forward to being able to test it with our members in the future,” he added.

It may be some while until the Stanford project is turned into a commercial reality but the team are determined.

“Who knows what we will get because of this device. It is opening a door that wasn’t open before,” said Mr Dharmaraja.

New Technology Can Track Our Emotions And Attention

October 12, 2011

When I started watching this, I was quite interested in it. But I lost interest when I realised that the report doesn’t cover how such technology could help severely disabled people.

I have friends with severe Cerebral Palsy who cannot communicate verbally. I have always wished I had a way of knowing what they really thought about me, or about what I say to them. Technology like this seems like it could make that wish come true for me. I wish the report had covered that point.

Comments welcome, as always.

 

BBC Criticised By Deaf Groups Over Subtitles

October 12, 2011

Hard-of-hearing viewers have been left “utterly perplexed” by errors in the live captions – which have also renamed the Ireland rugby team “Island”.

Deaf people have expressed their shock at being told a town was expecting a visit from the “Arch b**** of Canterbury” during one local BBC news broadcast.

In another embarrassing faux pas, a reporter visiting a farm spoke of how the pigs “love to nibble anything that comes into the shed, like our wellies.”

Unfortunately the subtitles alongside the report changed the last word to to a rather childish homophone. After one viewer captured it on screen the error became an internet sensation.

During the Queen Mother’s funeral, the solemn words “We’ll now have a moment’s silence for the Queen Mother” became “We’ll now have a moment’s violence for the Queen Mother” in one BBC broadcast.

The blunders have become so regular that a dedicated website has been set up by bemused viewers.

One found in another broadcast a BBC announcer said “government making holes for surgeons” instead of “making helpful decisions.”

While the Labour leader was referred to as “Ed Miller Band” in a news broadcast earlier this year.

And in one Daily Politics show, one politician announced to the presenter, Andrew Neil, that he did not believe in “soliciting” himself, when he had actually said “shortlisting”.

Pre-recorded subtitles are done before transmission and appear in time with the programme. Live subtitles, however, are made by a stenographer typing words phonetically as they listen to a show, or with speech recognition, where someone talks into a microphone while listening to the broadcast, and a computer recognises their words.

The latter can lead to the use of words that sound similar to the intended one, but give a very different meaning.

The group Action on Hearing Loss has found that of those who use subtitles, nearly 60 per cent report problems with subtitles on catch-up television services.

Last week, BBC subtitles left deaf rugby fans baffled, thinking that the Welsh side were playing “Island” instead of “Ireland” in the World Cup.

The frequent mistakes in the corporation’s live subtitling have now come under fire from deaf groups.

Emma Harrison, Action on Hearing Loss’s Director of Public Engagement said she receives regular complaints about errors in subtitling:

“Access to television is really important to people with a hearing loss. We urge all broadcasters to monitor the quality of their subtitling to ensure high standards, and invest in technology to reduce mistakes so people with hearing loss can access television in the same way as hearing people,” she said.

“We would also like Ofcom to play a greater role in monitoring subtitling complaints.

“As part of the Government review of the Communications Act, we are calling for new laws to provide full access to television entertainment, and want subtitling to be available on all programmes, regardless of whether it is traditional or catch up TV.”

The BBC said: “We recognise that subtitling is a hugely important service, and we endeavour to ensure it is as accurate as possible. There are occasions, particularly during live broadcasts, when mistakes will happen but we do all we can to keep this to a minimum and are constantly striving to improve accuracy.”‬

Able Life: Motability And The Mail

October 12, 2011

Here is your usual sneak preview of my Able Radio discussion with George Johnson. This week, unfortunately, we will be discussing the Daily Mail.

Danny Hornby Revisited

October 12, 2011

When Virginia Bovell realised there were no schools offering the intensive support that doctors said her three-year-old autistic son needed back in 1997, she got together with four other families and set up a specialist school offering intensive, autism-specific teaching.

Fourteen years later Treehouse, the school they created in north London, is recognised internationally as a model for how children with autism should be taught.

But Bovell has recently found herself confronted with a new challenge.

Her son Danny, now 18, is on the brink of leaving school and she has been searching for a suitable place for him to continue his education. Dismayed at the quality of what’s on offer for children with autism after school, once again she has joined forces with other parents to campaign for radical improvement.

A report published next week by Ambitious About Autism, the charity aligned to Treehouse school, reveals that only 19% of children with autism continue with any kind of education after they leave school, and concludes that this is because there are so few colleges equipped to accommodate them. About 85% of adults with autism are unemployed.

The report, Finished at School: What Next for Young People with Autism? says: “Families often feel there is nowhere for young people with autism to go once they have finished at school.”

Most autistic children are faced with what Bovell describes as premature “retirement” in their late teens, with the option of living at home with their parents for the rest of their life, going to live in a residential community (of which there are very few), or spending time at daycare centres, often full of people who are two or three times their age.

Without continued support, the skills that children have been taught can be lost, leading to a “huge waste of funds”, the charity states.

“Dedicated teaching staff say that one of the saddest, most frustrating aspects of their job is that they put in all this effort and see all this progress for a young person at school and then find it totally heartbreaking to see that nothing was available afterwards,” Bovell says.

“Hearing about adults with autism who can’t access learning opportunities post-school is desperately dispiriting.”

Although their campaign focuses on improving opportunities for young people with autism, the charity’s findings will resonate with parents of children with other disabilities, who often find that state support throughout childhood is replaced by a black hole once they reach 16.

“For young people with autism, school is all too often the end of their education,” writes Robert Buckland, the Conservative MP for Swindon South who sits on the all-party parliamentary group on autism, in a foreword to the charity’s report. “By failing to support young people to continu e learning beyond school, we create a barrier to them living more independently and gaining employment. This ends up creating large long-term costs to society.”

Adult social care services face increased costs “due to our failure to support young people to live in their community and contribute to society,” the report argues. The annual cost of supporting people with autism in the UK is estimated to be £27.5bn, the report says.

Bovell’s new campaign is significant because the work she and other parents (including her ex-husband and Danny’s father, the novelist Nick Hornby) did to improve services for children with autism had a profound impact on expectations nationally, showcasing what was possible and encouraging parents to demand more from their local authorities.

Three years ago, a permanent complex of beautifully-designed school buildings was opened for Treehouse, complete with specialist playground equipment, music rooms and facilities for teaching children to cook and live independent lives. Over the past decade there has been greater recognition that autism, which is a lifelong neurological condition, affects a larger number of people than was previously accepted. Despite this, local authorities have not responded to the growing need.

“When we were starting, one of the reasons there was very little provision was that people were still working on a prevalence rate of four or five per 10,000, now it’s widely recognised that the autism spectrum affects 1% [of children],” Bovell says.

“No one knows whether this is just to do with improved diagnosis or an actual increase in prevalence. But autism is no longer a very, very low incidence condition which we can ignore. There need to be more services. Campaigners have been talking about a ticking timebomb for some time, pointing out that if there are this number of children coming through education, when are adult services going to wake up?”

The charity is developing plans with a number of further education colleges to support young people with autism to continue their education. There is no autism-specific college in London and the charity wants to change that.

“You can make a national difference through your own school, if you are putting up a template to illustrate what others can be doing as well. What we’ve done here has been codified and replicated elsewhere. We want to do the same in further education,” Bovell says. “It has to be replicable. We are trying to change the environment for all young people with autism wherever they live.”

The government’s green paper on special educational needs published earlier this year offered a proposal to extend support for disabled young people up to the age of 25, and the Ambitious About Autism campaign wants the government to create a legal right to educational support up to the age of 25. However, there is growing pessimism about this ever becoming policy, given the current pressure on public finances.

As a parent, Bovell says she worries endlessly about the opportunities that will be available to her son once he leaves school. “At the extreme end, you hear of adults going on living with their parents for the rest of their parents’ lives because there is no alternative. When their parents die, maybe in their 80s, leaving their child in their 50s or 60s, there is an emergency. It is an emotional catastrophe and suddenly the whole world falls apart, and they go into residential care. That is a nightmare prospect for everyone involved,” she says.

“At the other end of the spectrum, the only option is long-term residential care post-school and that doesn’t seem right either. They have had this chance to do learning and then suddenly they turn 18, they are watching television all day, with nothing much happening, often with people three times their age.”

She is hopeful that Ambitious About Autism’s campaign will help improve the prospects for young adults with autism.

“People with severe learning difficulties have stayed at home or been institutionalised for decades,” she says. “I’d hope that through the post-19 services that we aspire to develop that things will get better, that outcomes, prospects, life chances, won’t be falling off a cliff, going backwards, at the age of 19, and that things will be a lot more hopeful from now on.”

Autistic Girl Loses Voice When Pet Dog Goes Missing

October 11, 2011

An autistic four-year-old girl who only talks to animals has lost her sole point of communication.

Brody Thompson’s pet dog went missing from her family’s front garden in Newton Aycliffe in County Durham.

The family said they do not know if the 15-month-old white Bichon Frise is lost, stolen or being looked after by someone who has found her wandering.

Brody has been looking out of the window and scanning the pavement for her pet since Friday.

Her mother, Jenna Thompson, said: “Brody doesn’t really talk to people, she just talks to the dog.”

The little girl’s family have been looking for Lilly, who is tagged and microchipped, and have been putting up notices asking for help to find her.

Brody’s grandmother, Irene Hewitson, said they had hoped Lilly would help Brody’s communication skills with people.

She said: “If she’s upset or crying she goes to cuddle Lilly. She doesn’t come to us for a cuddle and if she sees something that interests her she’d tell Lilly, she wouldn’t tell us.”

She added: “We don’t want any repercussions. We just want Lilly back for Brody’s sake.”

The Taxpayers’ Alliance Have Joined In The Mail’s Madness

October 11, 2011

Thanks to Liberal Conspiracy for the info and the coverage.

Pupils Try Paralympic Sports

October 11, 2011

More than 2,000 school pupils in east London are competing in Paralympic sports this week.

They are taking part in the School Sports Championships which enable children with disabilities to compete with their peers on a level playing field.

My Complaint To The PCC About Richard Littlejohn’s Motability Article

October 11, 2011

I have just sent this email to the PCC. You are free to use it as a template if you wish to send in a complaint about this article. Many thanks to Dan McIntyre and The Broken Of Britain for their help to make this possible.

I wish to formally file a complaint in reference to a Richard Littlejohn article about the Motability Scheme. The article in question appeared in today’s Daily Mail online as cited above. A PDF of the article is attached for your reference.

Richard Littlejohn and the Daily Mail are in breach of PCC’s Editors’ Code, clauses 1i and 12i.

The article is factually inaccurate. The Motability scheme is not funded by the British taxpayer. It is operated by a charity which raises its own funds through various events throughout the year and which was formed by a group of banks. The charity works very hard to fund and promote the scheme. Motability cars do not come free to disabled people- they are paid for using Disability Living Allowance.

The article is also discriminatory towards disabled people as a group in tone and context. The Motability Scheme is very valuable to the many disabled people who use it. It gives them a great deal of independence and a quality of life that would be impossible if the scheme did not exist. The article seems to suggest that Mr Littlejohn and his employers hold outdated and discriminatory views towards the idea of disabled people being allowed independence and a good quality of life.

This article is further evidence of the continued scapegoating and malicious attitude towards disabled people in general by this publication.

Sincerely,

Sarah Ismail
Same Difference website (www.samedifference1.com)

New Centre Is ‘Lifeline’ For Disabled Children In Wales

October 11, 2011

A new £6m centre which brings together treatment and care for children with disabilities under one roof has been called a “lifeline” by parents.

The Serennu Children’s Centre in Newport means young patients can have different specialist appointments scheduled in the same place, and cut down on travelling between hospitals and clinics.

Three-year-old Darcie has Down’s Syndrome.

Her mother Frances Jenkins said: “We would have hearing in Cwmbran, hydrotherapy and physiotherapy in one clinic in Newport, an eye specialist at another clinic in Newport, and would see a paediatrician at the Royal Gwent Hospital.

“Some weeks I would spend 20 hours a week getting to different appointments.”

As well as NHS outpatient and medical treatment rooms, facilities include a sensory garden, hydrotherapy pool, gym, cafe, and a 3D medi-cinema, due to be opened by the end of the year.

‘Social aspect’

Serennu, which means “to sparkle” in Welsh, opened in April after 20 years of planning and fundraising by the South Gwent Children’s Foundation.

Core funding came from the Welsh Government. Volunteers raised the rest and admit it has been a “long slog”.

Frances Jenkins explains how the centre is helping her daughter Darcie

The foundation’s chairman Dr Sabine Maquire said: “There have been points along the way where I know my co-trustees, and others, have doubted whether we could do it.

“I would say to others ‘you can do it, but you have to be passionate, you have to stick with it, and you will need the support of your volunteers, your parents, and the business community. You need everyone to share your vision’.”

Spending time at the centre allows families the chance to meet and socialise together, as Frances Jenkins explains.

“There’s a social aspect to this centre, not just a medical aspect and I think that is very important, especially when, quite often, you feel cut off.

“It’s almost like the bringing together of one big unit, a family unit, and that’s important because it can be very isolating.”

Centre manager, Donna Wilson, believes Serennu offers something unique.

“It’s not just about medical care and treatment, it’s a family facility.

“It has leisure facilities, we’re hoping to have a youth club for disabled children, there are sports facilities for disabled children. We want this to be a holistic family experience.”

The charity, Children in Wales, welcomes the opening of the centre, but believes people with disabilities should not have to be treated separately.

Development officer Catherine Lewis said: “I think it would be really good if disabled children and young people are able to access mainstream services because it would help show they are people first and that they’ve got a disability second.

“I very much support what’s happened at Serennu, it’s a flagship centre and it’s a wonderful development, but it would be great to see services mainstreamed across all of Wales.”

Richard Littlejohn On Motability

October 11, 2011

Yuck. Just yuck.

Car dealers are like farmers. Always moaning. Think Arthur Daley. Ask them about business and you’ll get a hard luck story. Sharp intake of breath, sorrowful shake of the head, cue violins.

Last time I spoke to my local BMW dealer he painted an unvarnished picture of economic woe.

Never known it so bad. Bottom’s fallen right out of the market. Fleet sales through the floor, private buyers AWOL.

 Even those with money to burn are keeping it in their pockets. This isn’t the time for an ostentatious show of wealth, not when so many people are being forced to tighten their belts.

Company directors who used to change their  7 Series as often as they changed the oil are now hanging on to them for three or four years. You can’t lay off half the workforce and then treat yourself to a brand new limo. I’m telling you, Rich, this game’s finished.

Spare me the sob story. I’ve heard it all before. Hard-up car dealers are about as common as skint bookies.

No, this time it’s really serious, he said, what with the astronomical cost of petrol and insurance, sky-high company car taxes and punitive ‘green’ duties on so-called ‘gas guzzlers’ higher up the range. I’ve even had to give the sales director the old heave-ho. To be honest, it’s only the Government keeping us going.

The Government? Surely they haven’t nationalised the BMW network while I wasn’t looking?

 No, I’m talking about the Motability scheme. Real life-saver that’s been.

Motability? I thought that was something to do with invalid carriages, cheap cars for the disabled, that sort of thing. Those little blue three-wheelers, like Del Boy’s van. Gearsticks on the steering column, hand-operated accelerators, ramps for wheelchairs. Where does BMW come into it? They haven’t made bubble cars since the Sixties.

Keep up, Rich. This is the 21st century. Motability runs to proper cars these days.

What, even BMWs?

Especially BMWs, he said. Most of the 1 Series we knock out these days go to a Motability customer. It’s all that’s keeping us solvent right now.

This conversation came back to haunt me when I read in the Mail on Sunday that the Motability scheme now costs British taxpayers a staggering £1.5 billion a year.

 The number of people given a free car on the taxpayer has risen by 200,000 to 575,000 over the past decade. Another 1.3 million are entitled to one, according to the Motability website. Surely there can’t be that many more disabled people than there were ten years ago? If the figure’s right, though, the streets of Britain would look like the sick bay at Downton Abbey.

Depends what you mean by ‘disabled’. The definition of disability was stretched to breaking point under Labour, which is how we ended up with more than two-and-a-half million people claiming incapacity benefit.
Even naughty schoolboys diagnosed with the make-believe disease ‘Attention Deficit Hyperactivity Disorder’ (ADHD) are classified as disabled.

The total now said to be suffering from ADHD-related conditions stands at 99,000 — up from just 800 a decade ago.

And, as a result, their parents are entitled to a car under the Motability Scheme. More than 3,000 families with children allegedly suffering from ADHD are swanning around in a new vehicle courtesy of the British taxpayer, no questions asked.

Just fill in a simple form and it’s: ’Ello, John, got a new motor?

Motability is now the biggest fleet management operation in Britain. Its chief executive pulls in £1.17 million a year. All this from a scheme launched in 1978 to help the genuinely disabled get about.

When it started, a modified Mini Clubman Estate was as exotic as it got. Today, the basic range runs to a Vauxhall Astra or a Ford Focus, with the £205-a-month lease fee paid by the Department of Work and Pensions.

But those who are prepared to make a modest top-up payment can get the keys to a luxury, executive model. More than 11,000 cars part-funded by taxpayers are BMWs and Mercedes.

And it’s not just the 1 Series, which is keeping my local dealership afloat, either.

The Motability website advertises the £35,000 BMW X3 — ‘a striking balance between comfort and agility’ — and the new Audi A6, which is ‘refined and has a luxurious, spacious interior’.

Work and Pensions Secretary Iain Duncan Smith was horrified when he uncovered the scale of the abuse of the system.

The Motability racket is just the tip of the iceberg. Under Labour, the welfare monster grew like Topsy, along with the tax bills needed to feed it. Gordon Brown’s generosity with other people’s money knew no bounds.

Millions of able-bodied people were paid to sit around on their backsides while their jobs went to willing, cheaper foreign workers.

New ‘illnesses’ were invented to justify their idleness. Anyone who challenged the lavish, unlimited generosity of the welfare state was smeared as ‘heartless’ or ‘selfish’.

The Motability scheme started with the best of intentions.

My old neighbour, who was crippled by polio as a child, drove a modified Daf 33, with Variomatic transmission. No one would begrudge the much-needed mobility, dignity and independence it brought to her life.

But Motability was never designed to supply free BMWs to the perfectly-fit families of little boys who can’t sit still in class.

Nor did anyone imagine that it would one day be overseen by a chief executive on a superstar, seven-figure salary.

If Arthur Daley was around today, he wouldn’t bother with a second-hand car lot on a bomb site in Acton, he’d be a fully-fledged and minted Motability franchisee.

The Future Of Mind Control

October 10, 2011

You don’t have to be a Jedi to make things move with your mind.

Granted, we may not be able to lift a spaceship out of a swamp like Yoda does in The Empire Strikes Back, but it is possible to steer a model car, drive a wheelchair and control a robotic exoskeleton with just your thoughts.

“The first thing is to clear your mind…to think of nothing,” says Ed Jellard; a young man with the quirky title of senior inventor.

We are standing in a testing room at IBM’s Emerging Technologies lab in Winchester, England.

On my head is a strange headset that looks like a black plastic squid. Its 14 tendrils, each capped with a moistened electrode, are supposed to detect specific brain signals.

In front of us is a computer screen, displaying an image of a floating cube.

As I think about pushing it, the cube responds by drifting into the distance.

Admittedly, the system needed a fair bit of pre-training to achieve this single task. But it has, nonetheless, learned to associate a specific thought pattern with a particular movement.

The headset, which was developed by Australian company Emotiv for the games industry, has been around for some time. But it is only now that companies such as IBM are beginning to harness the wealth of data that it can provide.

Using software developed in-house, researchers have linked the Emotiv to devices such as a model car, a light switch and a television.

Control signals come from two main sources; electroencephalography (EEG) measurements of brain activity, and readings of nerve impulses as they travel outwards to the muscles.

Restoring movement

New techniques for processing such information are enabling sophisticated real world applications.

Already the team has used the system to help a patient with locked-in syndrome, whose healthy, active mind became trapped in a motionless body following a stroke.

“We linked the headset to the IBM middleware, and when he pushed the cube on the screen, that behaved like a click of the mouse – so he was able to use the computer,” explained IBM’s Kevin Brown.

Many commercial mind control technologies are designed to restore physical ability to those who have lost it.

At Switzerland’s Ecole Polytechnique Federale de Lausanne (EPFL), researchers have applied brain-computer interface technology to create thought-controlled wheelchairs and telepresence robots.

“A disabled patient who can’t move can instead navigate such a robot around his house to participate in the social life of the family,” explains the team leader, Professor Jose del Millan.

“To do that, a helmet detects the intention of some physical movement and translates it into action.”

Japanese company Cyberdyne is helping people who cannot walk to regain mobility by dressing them in a full-body robotic suit called Hal.

Just as some of IBM’s readings come from nerve impulses, rather than brain waves, Cyberdyne uses tiny sensors on the limbs to measure the subject’s intention to move, even if the physical act is impossible.

The robot body responds by moving its arms or legs. Webcams and computer screens enabling the user to pilot their machine and communicate with friends and family through their proxy body.

Outside the healthcare field, another implementation, being developed by EPFL in partnership with car maker Nissan, is an intelligent vehicle that can use brainwave data.

Supported by numerous external sensors and cameras, brain wave sensors read what the driver is planning to do next.

Having anticipated their intentions, the car takes over, eliminating the need for tedious and time consuming physical movement.

For those who prefer pedal power, Toyota is working with Saatchi & Saatchi, Parlee Cycles and DeepLocal to develop a bicycle which can shift gear based on its rider’s thoughts.

Suits and microchips

Headsets and helmets offer cheap, easy-to-use ways of tapping into the mind. But there are other, more invasive techniques being developed.

At Brown Institute for Brain Science in the US, scientists are busy inserting chips right into the human brain.

The technology, dubbed BrainGate, sends mental commands directly to a PC.

Subjects still have to be physically “plugged” into a computer via cables coming out of their heads, in a setup reminiscent of the film The Matrix. However, the team is now working on miniaturising the chips and making them wireless.

BrainGate is developing ways of using the output to control a computer cursor, on-screen keyboard, and even manipulate robotic arms.

After testing it on monkeys, the scientists have now started human trials. Lead researcher Prof John Donoghue hopes that one day, his groundbreaking research will help people with spinal cord injuries or locked-in syndrome to walk again just by thinking of moving their limbs.

Robot warriors?

But extracting information from the brain, be it by internal or external sensors, is only part of the story.

Much of the current research effort is looking at how to efficiently process and utilise the vast streams of data that the brain produces.

Turning analogue thoughts into digital information links human beings directly to electronic information networks, such as the internet. The brain becomes becomes yet another sensor to be analysed and interrogated.

And as techniques for crunching that output get more sophisticated, the technology it drives will move beyond simple device control.

“People like data,” said IBM’s Ed Jellard. “So if you can see patterns of data, the geekier people will be very interested to see what is going on in their brain and how it is changing over time.

“I would be interest to know if my brain is getting stronger and if I have more intense thoughts. Things like that could be useful.”

While it is possible to translate brain waves into machine processable data, there remains something unique and special about those signals that rocket around inside our skulls.

They are not the same as lasers in a fibre optic cable or electrons in a microprocessor, and tapping the mind will raise philosophical and ethical questions, according to Prof Noel Sharkey.

“Once the military get a hold of it, they will push it very hard,” he explains.

“At the moment they are filling the airspace in Afghanistan with drones that only one person can control – but if they get the helmets well enough developed, they’ll be able to control a number of planes or robot warriors directly with their thoughts.”

There are also questions about what form cyber crime would take in the age of the wired mind?

“Imagine some kind of a wireless computer device in your head that you’ll use for mind control – what if people hacked into that, what could they do to you and your property?,” continues Prof Sharkey.

“And what if you are forced to wear a device and someone controls you with his thoughts, making you do things?…”

The possibilities, both positive and negative, are literally mind boggling.

Wheelchair using author launches picture books to normalise disability

October 10, 2011

I have just received the press release below from author Hannah Ensor. This event has the support of Whizz-Kids.

What: WellyWalks Photocall & Book reading

Time: 2.30pm

Location: Willowcroft Primary school

Date: Saturday October 22

The launch of local author Hannah Ensor’s new children’s picture books – written with young disabled people from the charity Whizz-Kidz – make their debut at a book launch at Willowcroft Primary school, Saturday October 22, 2 – 3.30pm.

 

Two books, Biscuit Baking and Welly Walks, are simple stories told with humour and mischief that celebrate childhood play – irrespective of using a wheelchair. They are designed to make children aged two to five years old – and their parents – look past disability.

 

Five-time World Champion and six time Paralympic medalist swimmer Fran Williamson will join the family friendly afternoon – filled with balloons, bubbles, face-painting and more. Hannah, a wheelchair user herself for the last five years, will also be reading from her books and signing copies.

£1 from the sale of each book will be donated to Whizz-Kidz to help more children enjoy fun and full childhoods, and get the right wheelchairs for them at the right time. There will also be a charity collection on the day.

 

Hannah said: “I was inspired by young non-disabled people who were sometimes unsure how to react to my wheels – how better to help than with books full of joy and laughter?

 

“It was brilliant fun. Working with young people from Whizz-Kidz was one of the highlights of the process – catching their humour, approach, and life experiences. I am already planning my next books with Whizz-Kidz.”

 

Stuart Denard, Head of Corporate Partnerships at Whizz-Kidz added, “We are delighted with Hannah’s books, and thrilled that she collaborated with members of our Kidz Board to capture the fun and feelings of other young disabled people.

 

“We think it’s a wonderful, collaborative project – proud to be involved, and very grateful to be receiving donations on each book.”

 

To buy the books online, visit http://bit.ly/wellywalks

 

–       Ends –

 

For further information please contact

Rob Dyson, PR Manager on 020 7798 6103 or r.dyson@whizz-kidz.org.uk

Hannah Ensor, Author & Illustrator on 07717454648 or stickmancomms@gmail.com

Dr Ann McPherson’s Daughter Writes About Assisted Dying

October 10, 2011

I thought some of you might be interested in this article by Beth Hale, daughter of campaigner for assisted dying and GP Dr Ann McPherson.

Report Criticises MS Patient Care

October 10, 2011

NHS services for multiple sclerosis (MS) sufferers, of which there are more than 100,000 in the UK, have barely improved at all in the past five years, a damning report has revealed.

Basic symptoms such as pain, fatigue and problems with cognition are not well treated, the findings suggested.

And guidelines issued by the National Institute for Health and Clinical Excellence for the management of patients with the condition are no closer to being met now than when they were launched in 2003, according to a national audit of MS services.

The audit, conducted by the Royal College of Physicians and the MS Trust, also found that a third of NHS trusts had no plans to improve neurological services in the next year. Most were giving insufficient attention to joining up services across the NHS or with social care, results showed.

Less than three quarters (69%) of MS patients said assessment of “hidden” symptoms like fatigue, depression, cognitive or sexual impairment and bladder control were both sensitive and thorough. This figure was largely unchanged from the previous audit, when the proportion was 67%.

Pam Macfarlane, MS Trust chief executive, said: “People with MS have complex needs that rely on well co-ordinated health and social care services. Despite a culture of targets and increases in spending in the past 10 years there has been little progress in this area.

“With huge changes in commissioning and squeezed budgets there is no evidence that things are going to improve and we are extremely worried about the future for the services that people with MS depend upon.”

Professor Derick Wade, associate director of the audit, argued that the planned changes to the way health services are commissioned provided “a unique opportunity to improve the planning, commissioning and provision of services for MS patients”.

But he warned: “We must not repeat the mistakes and inertia of the past eight years – we must move forward, identifying where services are deficient and making them better. In particular, we believe there is an opportunity for increased collaboration between different healthcare organisations and between health and social services. MS patients deserve a better future.”

A Department of Health spokesman said: “This is exactly why we need to modernise the NHS. Support for people with long-term neurological conditions has not been good enough.”

Giles Duley Again

October 9, 2011

A new exhibition of photographs is about to open in London featuring the work of Giles Duley, a photographer who has spent the last 15 years documenting the effects of war on civilians.

It is a subject he now understands in a totally different way.

On his final photo assignment in February in Afghanistan he stepped on an explosive device and lost his arm, and both legs.

David Sillito went to meet him and find out why he wants to return to Afghanistan as a photographer.

Paralympic Swimmer Fran Williamson Retires

October 8, 2011

British Paralympic swimmer Fran Williamson has announced her retirement from the sport.

The 26-year-old from Cambridge, who has cerebral palsy, competed at two Paralympic Games in Athens and Beijing, winning four silvers and two bronzes.

In 2010 she won gold in the 50m backstroke in the World Championships in Eindhoven.

“My career has brought me so much. Everyone involved with the sport has been amazing to work with,” she said.

“As well as 23 treasured international medals, I’m grateful for the things and experiences I’ve gained: friends, knowledge and motivation, as well as empathy for sports people who have to squeeze into skin-tight suits to compete!

“But the opportunity to train, travel and compete with some of the most talented people in the world has been the ultimate highlight and a true privilege.”

Williamson won two bronzes at the European Championships in Berlin earlier this year, which proved to be her final major international competition – 10 years after she made her international debut.

“In Germany I realised that with new athletes coming through in my S3 category, the chances of me being able to compete for a place on the podium in London were pretty tough,” she added.

“Instead of this being a negative, I turned it into a positive. I always knew that there’d be a sign when it was time for me to stand down – this was definitely it, especially when I realised what I could offer outside the pool. I came up with tons of plans, which I’m excited about, and finally decided it was time for a new chapter.”

National Performance Director John Atkinson added: “Fran has had a key role in the sport for the past decade and I know this decision must have been difficult for her to make. Her achievements in the sport have been vast and they are an outstanding credit to her and British Swimming.”

Wheelchair User Drowns In Dorset

October 8, 2011

A severely disabled woman has died after she fell into the sea on the Dorset coast while strapped into her electric wheelchair.

The woman, aged 20 and from Solihull in the West Midlands, sank to the bottom of the harbour at Lyme Regis when her wheelchair rolled off the wall, Dorset Police said.

Police, paramedics and the Royal National Lifeboat Institution (RNLI) were called to the incident shortly before 1pm on Friday.

Her family, the boat skipper and RNLI personnel from the nearby lifeboat station dived in and managed to free her, taking her unconscious to the surface.

She was flown by air ambulance to Dorset County Hospital in Dorchester but later died.

Dorset Police have launched an investigation and are appealing for witnesses to the incident on the 19th-century harbour wall, known as the Cobb, which features in Jane Austen’s Persuasion and John Fowles’s The French Lieutenant’s Woman.

A police spokesman said: “They were on holiday in Lyme Regis and were waiting to go on a charter boat trip when tragically the wheelchair fell into deep water.

“Rescue efforts were made by the family, the boat skipper and later by emergency services, including coastguards, lifeboat and police. After considerable difficulty, she was able to be freed.”

The Paralympics’ Possible Legacy For Disabled Workers

October 8, 2011

I thought some of you might find this interesting.

Cerys Edwards

October 7, 2011

Dangerous drivers could face longer jail terms under a proposal to go before Parliament.

A new crime of causing serious injury by dangerous driving will carry a maximum sentence of five years.

Tracy Edwards, whose daughter Cerys was left paralysed and brain damaged after a car crash, says she welcomes the plans.

Liz Jones Of The Daily Mail Is Deaf

October 7, 2011

Did you know that, readers? I didn’t! Thanks for the info @SocietyGuardian.

You said: “Shall I tell you why deafness gets no truck, no special treatment, no politeness? It’s because it is seen as the disease of the old.”

Liz, for the first time in nearly this whole column, I agree with you. There’s very few positive deaf role models out there, and we could really do with a Harry Potter style character who wears hearing aids rather than glasses, to make deafness cool in some way for the first time like, ever.

We could also do with better researched articles that don’t make deaf life out to be harder than it really is. We want other people to help us sometimes, but we also need to help ourselves.

Nicky Clark On The Ouch Talkshow

October 7, 2011

Nicky Clark is one of the guests on the latest Ouch! Talkshow. I’m listening as I type, and thought some of you might like to do the same. Please click here if you are interested.

Online Resources for Family and Friends of Individuals with Autism

October 7, 2011

This is a guest post by Nadia Jones who blogs at online college about education, college, student, teacher, money saving, movie related topics. You can reach her at nadia.jones5@gmail.com.

People with autism are too often stigmatized as disabled individuals with limited lifestyle options. The truth is that autistic individuals live enriching, fruitful lives just as much as any other person, disabled or not. However for those uneducated in autism, initial understanding of the illness can be tough. Luckily the community supporting autistic individuals, their family and their friends is very large and welcoming. The more people educate themselves about autism and autistic individuals, the better the environment we can make for our autistic friends and family. Here are some great resources for enlightenment regarding autism and the issues facing autistic individuals and their supporters.

Autism Society

The Autism Society is the nation’s largest grassroots organization dedicated to the spread of autism advocacy with the goal o better the lives of autistic individuals at any cost. You may recognize their ribbon on cars and windows; it’s the ribbon designed to look like it was assembled with puzzle pieces. The Autism Society increases the national awareness of autism and its effect on the lives of everyday people through programs aimed at addressing people who don’t know the basic facts and myths of autism. The Autism Society has chapters all over the U.S. so it’s easy to get involved and volunteer for a local event in order to help with the cause.

Autism Speaks

Autism Speaks is another advocacy group that spreads awareness for the autism community. This organization works to isolate scientific evidence for treating autism and also devotes much of its funding towards researching a cure. The organization also participates in advocacy to help familiarize people unfamiliar with the disability through national campaigns. Their site features a huge archive of articles detailing the latest research and scientific breakthroughs regarding autism—you can browse around quite a bit and gain information that you may not have otherwise gained regarding autism. The thorough empirical data on autism would be quite an enlightening read for those interests in the science behind the disability.

ASAT

The Association for Science in Autism Treatment (ASAT) is a non-profit organization that aims to spread autism awareness by sharing scientifically reliable data with uninformed individuals. The group emphasizes a push towards higher accountability for professionals who are supposed to help better the lives of autistic individuals and their friends and family. ASAT strives to bring enlightenment to those who can most effectively address the problems surrounding autism, whether it’s education of the disability, research to its cause, or interaction with the individuals affected. The organization is a great resource to refer to a professional who may need educating on the nuances of autism.

Autism Community

The Autism Community, like its name suggests, is a community made up of individuals with first-hand experience regarding autism and its effects. The site offers indispensible resources for people who seek it out; the resources are categorized by the groups most likely to seek them out: parents, educators, and professionals. The site also features recommended books for those who want to read up on narratives related with autism. The people in the community welcome newcomers with a patience and understanding that you won’t likely find elsewhere on the web. The Autism Community would be the best site to start on if you’re looking for friends and mentors who can relate to your experiences with autism.

 

Four In Ten Disabled Children Live In Poverty

October 7, 2011

Four in 10 disabled young people in England are living in poverty, amounting to a “staggering” 320,000 children. And the figure will rise because of government cuts to welfare payments, according to a report by The Children’s Society.

The charity’s analysis looks for the first time at the additional costs of caring for a child who might be paraplegic, infirm or seriously physically incapacitated, and concludes that the official poverty rates understate the number of disabled children in penury by a total of 32,000.

Counting on the basis of a disabled child living in a household with a disabled adult, the figure for those existing in poverty rose to 49%.

The Children’s Society says that benefit changes in the controversial welfare reform bill, now being considered in the House of Lords, will cause the disability component of child tax-credit to drop from £54 to £27 a week.

This change, which will cost the families of 100,000 disabled children £1,500 a year each, could begin when the government replaces the present benefits system with its universal credit scheme in 2013.

The Children’s Society said the statistics had been calculated by removing the disability living allowance (DLA) paid to families, to reflect the additional costs of bringing up children with disabilities.

Once this allowance was taken into account, child poverty rates among disabled children increased from 36% to 40% – 10 percentage points above the rate for all children.

The findings, which mean that poverty rates among disabled children are higher than government statistics have stated, have alarmed disability groups and sparked calls for a rethinkof the planned reforms.

More than 30 charities have launched an e-petition, called Don’t let disabled children pay the price of welfare reform, on the government’s website, which has so far received more than 5,000 signatures.

The petition argues that cutting benefits removes a vital lifeline for many disabled families who could be pushed below the poverty line.

Bob Reitemeier, chief executive of the Children’s Society, said: “These findings are staggering and very worrying. It seems that all forms of support for disabled children are seriously hampered when families live on a low income. Hidden costs, such as transport, heating and learning aids, are forcing more disabled children and young people and their families into poverty.

“It is essential that the government does not cut rates of support for disabled children under the universal credit. We believe that this cut in support can only lead to more disabled children being pushed into poverty and we are urging the government to review it.”

The Department for Work and Pensions said: “The government will continue to spend over £40bn on supporting disabled people. The changes we will introduce through universal credit will mean that severely disabled children will receive more support than they presently do under existing rules. Under universal credit there will be no cash losers for existing claimants.”

Man Superglues Himself To JobCentre Desk Naked In Benefit Protest

October 6, 2011

http://twitter.com/#!/wheresbenefit/status/122001010125320192

EHRC Issue A Statement On The Case Of Jane Cordell

October 6, 2011

http://twitter.com/#!/paulbharrison/status/121956335028932608

Steve Jobs Dies: Disabled Tweeters Pay Tribute And A Link Roundup

October 6, 2011

I woke up this morning to the sad news of the death of Steve Jobs. I was planning to get a guest post from a disabled person or special parent about how Apple has made a positive, disability-related difference to their life. But then I went on Twitter and found a few Tweets that told me what I was looking for. So, in tribute to Steve Jobs, I’ll post those here, and link to some posts about the iPad and communication from the history of Same Difference. I’d love to add to the Tweets throughout today and tomorrow, so please share yours or any you find.

RIP Steve Jobs- thank you for improving the lives of so many disabled people, probably without realising it.

Tweets

http://twitter.com/#!/crip_tic/status/121851610870726656

http://twitter.com/#!/lisybabe/status/121853408666857473

http://twitter.com/#!/emmajtracey/status/121855772073279488

http://twitter.com/#!/goldencaesar/status/121748421785812993

http://twitter.com/#!/wired/status/121993125525856256

Posts

Baroness Jane Campbell Wants Our Views On PIP

October 5, 2011

Cross posted with pleasure from Diary Of A Benefit Scrounger and The Broken Of Britain.

Here is a copy of a mesage we just received from Baroness Campbell. I’m too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :

“As you will see from yesterday we talked about the importance of language. So I’m thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that’s what it’s about, disabled People’s extra cost of living. It shouldn’t not based on independence (defined by professionals) conditionality. 

The condition that one should become “personally independent”, which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people. 

It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.

 It must not be measured by able-bodied people’s assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance. 

We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn’t be constantly reassessed as to how our so called independence is going. I’m thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)

I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.

World Report On Disability

October 5, 2011

Thanks to Society Guardian.

• The first ever World report on disability, produced jointly by the World Health Organisation and the World Bank, which finds that more than a billion people in the world today experience disability. Professor Stephen Hawking, who wrote the report foreword, has also sent a video message of support. It his hoped the report will “make a significant contribution to implementation of the Convention on the Rights of Persons with Disabilities”.

Carers In Scotland To Benefit From Heating Help

October 5, 2011

The Scottish government is extending a scheme that helps people to install new boilers or heaters and home insulation so that carers, who look after family and friends, will be able to benefit.

The hope is that might mean lower bills in future for people like 49-year-old Tommy who is back living with, and caring for, his mum who has dementia at their home at Craigton in Glasgow.

England V Scotland At Disabled Golf

October 5, 2011

Golfers who are blind, amputees, or were the victims of strokes are to take part in a new competition.

The inaugural Auld Enemies Cup match between Scotland and England will be held at Slaley Hall Resort in Northumberland and starts on Friday.

Jim Gales, 47, from Fife, will captain Scotland and Graeme Robertson, 48, from Berkshire, will captain England.

The Scottish team also has golfers from Aberdeen, Edinburgh, Glasgow, Glenrothes and Tayport.

Scottish Disability Golf Partnership has organised the three-day event.

The group’s members and operators are disabled people.

It helps people with Downs syndrome, people with learning difficulties, accident victims and wheelchair users to learn and play golf.

Philippe Croizon

October 5, 2011

From the shore, they look like two keen swimmers.

Most days, Philippe Croizon and Arnaud Chassery are ploughing the waters of their local boating lake, training for their next big challenge.

But beneath the waterline, they are very different. Philippe has no arms and no legs.

Seventeen years ago, while adjusting a television aerial on a roof, the former steel worker was given an electric shock by an overhead power line.

An electric charge of 20,000 volts fused him to the metal ladder on which he was standing.

He would have been killed instantly – but another thunderous charge snapped him back to life. By the time help arrived, he was so grievously burned that both his arms and his legs had to be removed.

“When they amputated my last limb, the left leg, I wanted to die,” he said. “I was so depressed, as low as you can get. But you have to make a decision – and I chose to live.”

He says he was inspired to swim while in hospital. He saw a documentary on television about an Englishwoman who had swum the English Channel earlier that year.

“Wow, I thought. Why can’t I do that? Why can’t I swim the Channel? I don’t know why but it became an obsession,” said Philippe.

Fourteen years later, the 43-year-old became the first limbless man to cross the 34km (21-mile) Channel between France and England – a feat that has only been achieved by some 900 other, able-bodied, swimmers.

He crossed from Folkestone to Cap Gris Nez in 13 hours, 23 minutes – well ahead of his 20-hour target.

Precious partnerships

Now, he and fellow Channel swimmer Arnaud plan to swim four further straits between five continents.

Next year, the pair will attempt to cross: the icy Bering Strait between Alaska and Russia; the shark-infested Gulf of Aqaba between Asia and Africa; and the straits between Gibraltar and Morocco, and between Papua New Guinea and Indonesia.

Philippe is surrounded by loving and devoted people including his partner, Suzana, whom he met through the internet.

She drives him to training and is always there to assist with some of the more mundane things Philippe cannot manage.

But by the lake, it is Arnaud who takes over.

On the edge of the jetty, Philippe raises the stumps of his legs onto which Arnaud gently slides a pair of silicone protective sleeves. Then he fits Philippe’s plastic, fibre-glass thigh extensions. They are each specially adapted to hold the large blue flippers that propel him through the water.

Once he is “dressed”, Arnaud wheels his friend down to the water’s edge. From here onwards, they are equals.

Ex-couch potato

“It took two years to prepare for my first Channel swim,” said Philippe.

“I started from nothing. Before the accident, I was a real couch potato; the closest I got to sport was watching the football with a bag of crisps. So, little by little, I transformed my body for the swim. I lifted weights; I swam every single day – 36 hours a week. Over two years, I swam around 4,000km (2,485 miles).”

The training regime does looks exhausting, even for Arnaud.

At home they sit on the grass and do their sit-ups together. In the house, Philippe has his own gym. A rack fitted with pulleys that attaches to the stumps of his arms.

In the water, Philippe averages 2.5km/h (1.55mph), half the speed of a swimmer like Arnaud. But by training together, they are learning to synchronise their efforts. During the challenge, they will swim side by side – except in the Bering Strait – where Arnaud will set his own pace to keep warm.

Philippe hopes that their challenge will encourage a different attitude to disability in those areas of the developing world where they will travel.

“When it comes to training, Arnaud has to kit me out, fit the prostheses. On land, I’m really just a big baby.

“But a big part of this expedition is the solidarity between Arnaud and me. Whatever I do, Arnaud does. Whatever he does, I do. We remove the differences between us. In the water, we are identical. We are both human.

“We want to show people [in Africa and Asia] that with determination, with endurance and with a lot of training, you can do the same things as able-bodied people.”

No limits

Certainly Philippe is an inspiration to those with a disability in his own country – including his 17-year-old son Gregory, who is dyslexic and was born two months after his father’s accident.

“I am very proud of my dad,” he said. “He is just unbelievable. I sometimes think he is crazy to do all these things. But if he needs to do this to live, then I think he should do it.

“My dad is a big example to me. He is showing me that everybody can achieve extraordinary things.

“I have severe dyslexia, so I find it very difficult to write and read texts. But when I see that my dad managed to swim through the Channel, I just think: I will fight for it! I will work hard at school and I will make it! And it’s working: since last year, I have received only good marks – I am top of my class.”

The biggest challenge for Philippe and Arnaud will be raising the 500,000 euros (£430,000) they still need to fund the trip.

In the Gulf of Aqaba, they will need to swim alongside a flotilla of boats carrying spotters – for sharks and poisonous jellyfish – and doctors, should it go wrong. There is plenty of expense.

“We are preparing in the hope we can raise the money,” said Philippe.

“The only thing we are scared of is sea creatures – sharks, things like that. But we’ve got a lot of safety help on the surface – there will be three or four boats around us.”

After two hours training in the lake, he was off to a nearby chateau near Poitiers to meet a team who were hot-air ballooning. The basket in which he travelled had been specially adapted for a wheelchair – it was the balloon’s inaugural flight.

Strapped in, a smile etched across his face, he drifted off into the clouds as if he had been hot-air ballooning all his life.

“You see, we can do anything,” he shouted, beaming.

Philippe Croizon is quite a remarkable Frenchman – for whom the sky really is the limit.

Able Life: Disabled- What’s In A Word?

October 5, 2011

This week for Able Life, George Johnson spoke to Frances Leckie about a recent blog post she wrote called Disabled- What’s In A Word? I then responded to her comments. Here is a sneak peek of what we all said.

Wiltshire Council Defends Free Blue Badges

October 4, 2011

Plans to reform the blue badge disabled parking permit scheme have been criticised by Wiltshire Council.

The government says the current scheme needs to be updated because of fraud and abuse, but that local authorities can now charge up to £10 per permit.

Conservative-controlled Wiltshire Council says each badge currently costs £4.84 to administer and it is able to absorb this cost within its budgets.

Deputy leader John Thomson said the new scheme would see each badge cost £15.

Some 24,000 people in Wiltshire have blue badges and, at present, get them issued for free.

Continue reading the main story

“Start Quote

Our attitude is that most people in Wiltshire are honest and that not every body is a crook”

John Thomson Wiltshire Council

Mr Thomson said: “We’ve been told [by the government] that we can charge £10 for this – but the by the time you’ve taken the cost of making the payment we’re not going to get £10.

“We have an extremely efficient four-page application form that can be filled in over the telephone. What they are proposing is a 22-page form.

“One of the reasons they are introducing the new permit is to cut fraud.

“It’s really fraud in the city they are targeting. This ‘fix all problems’ solution puts up costs and complicates the process.

“Our attitude is that most people in Wiltshire are honest and that not every body is a crook.”

Claire Perry, Conservative MP for Devizes, said she had a great deal of sympathy with the council’s position which operated a “very efficient” service turning the badges around within a week.

But Mrs Perry acknowledged that there was a “huge amount” of fraud and misuse of the badges.

“This means people who genuinely need the [disabled] bays often find them full.

“At [the Conservative Party] conference I will try to talk to the department and say ‘we have an excellent system in Wiltshire – can we have an opt-out clause?’.”

The blue badge scheme enables eligible people to park for up to three hours on double yellow lines for free.

It also allows free on-street parking where there are parking meters or permit schemes – if local authorities agree to waive the cost.

Boy Gets Compensation After Leg Amputation

October 4, 2011

A boy who had a leg amputated after suffering a blood clot in his foot has won a £900,000 compensation payout from an NHS trust.

Leo Ison, now six, from Bedworth, Warwickshire, was three weeks old when he had to have his left leg amputated below the knee.

His parents claimed his injury was down to the failure of Leicester’s Glenfield Hospital to spot a clot quickly enough.

The trust said it wished the family “all the best for the future”.

‘Level home’

His parents, Fiona and Ian, had claimed he would only have lost his toes if the blood clot was treated earlier.

They said in a statement: “He has been on the NHS waiting list for an operation, but this settlement means that he can pay to have his operation sooner, instead of having to wait until who knows how long under the NHS.

“We can also now look for a level home to live in so Leo doesn’t have to worry about stairs and has a wet room all of his own.”

University Hospitals of Leicester NHS Trust was not represented in court on Monday.

In a statement, it said: “We are pleased the court has approved the terms agreed with Leo’s family to bring this claim to a close.

“We wish Leo and his family all the best for the future.”

In Touch At 50: Looking Back And Looking Forward

October 4, 2011

I hope to be able to catch this on iPlayer later on:

Fifty years ago this week the very first In Touch hit the airways on Network Three, the channel dedicated to minority programmes. We look at how the presenters over the years – all of whom have been visually impaired or blind – compiled their scripts and got to grips with working in radio.

Plus Peter White talks to Jane Copsey one of the early presenters and Damon Rose, founder and editor of the BBC’s online programme for disabled people Ouch about the programme’s future in the digital age.

Welfare Reforms Could Undermine Young Carers

October 4, 2011

The children’s minister has warned colleagues that the government’s welfare changes “appear to undermine” ministerial commitments to support children of disabled lone parents by cutting as much as £3,500 a year from benefit payments.

In a letter seen by the Guardian, the education department minister, Tim Loughton, points out to Lord Freud at the Department for Work and Pensions (DWP) that the “planned changes in the welfare reform bill appear to undermine our efforts to ensure young carers are recognised and supported”.

The letter – between two Conservatives – exposes divisions over how heavy a burden the poor and vulnerable should bear from the budget cuts. Many argue that slashing welfare payments to disabled lone parents means their children will be forced to spend more time caring and less time growing up.

Peers begin to comb through the controversial welfare reform bill todayon Tuesday in the House of Lords. If it becomes law the government will abolish the severe disability premium and the enhanced disability premium when it replaces the present benefits system with its flagship universal credit scheme in 2013.

The payments are meant either to support disabled people who have no adult relative to help care for them or to recognise the contribution that children make in that situation. More than 42,000 children are likely to be affected by the changes.

According to the Children’s Society, which raised the issue with the Department for Education, this “means that families with a young carer looking after a disabled parent could lose up to £69.50 per week – more than £3,500 per year”.

The cut, says the charity, could be “equivalent to 20% of household income after housing costs”. In the letter Loughton argues that the system of welfare payments “goes some way to supporting these young people and their families”.

The children’s minister warns that should the cuts proceed they would simply load costs on to health service and social care budgets. “If it meant young carers were no longer able to provide care this could result in considerably greater costs being passed on to the NHS or children’s social care.

“Young carers often provide support to other family members in extremely difficult circumstances. You will be aware that my department strongly supports the government’s carer’s strategy and its commitment to protect them from excessive caring responsibilities.”

Loughton, considered an effective minister, has been instrumental in ensuring that young carers are not left to fend for themselves.

The children’s minister points out that his counterpart in welfare, Chris Grayling, had made a commitment to parliament that the issue would be given further consideration, asking what provisions would be in place to support families with young carers.

Campaigning groups have long said the government should make sure that “the family is supported in the home rather than relying on children to provide care”. Bob Reitemeier, chief executive of the Children’s Society, said: “These changes will only serve to pile more pressure on children caring for a disabled parent. It is wholly inappropriate to withdraw support to families with young carers and will make life much harder than it already is for potentially thousands of vulnerable children. Children frequently tell us that their caring responsibilities affect their education, wellbeing and futures.”

The cut in welfare payments, which saves the taxpayer little more than £50m, will also infuriate disabled groups – already angered by what they claim is the government’s hidden agenda to “cut the deficit on the backs of the needy”.

Last year the charity Scope calculated that of the approximately £90bn of proposed cuts, £9bn will fall upon disabled people, making them the hardest hit.

The DWP said: “Universal credit will create a simpler and fairer system and will target support to those who need it most. It will also ensure that the support given to disabled people is more consistent throughout their life.

“Disabled adults in greatest need and some disabled children will receive more support than now and there will be no cash losers as a result of the move to universal credit. We continue to spend over £40bn a year on disabled people and their services and our commitment to help support disabled people live independent lives runs at the heart of our welfare reforms.”

MS Centre’s Future Uncertain

October 3, 2011

A respite care centre for people with multiple sclerosis in Warwickshire is facing an uncertain future after a potential sale fell through.

In July 2010 the MS Society announced its decision to move out of directly providing respite care.

It has since been in talks to sell the Helen Ley Centre in Leamington Spa, along with centres in York, Surrey and East Lothian.

The centres offer day-care and holidays for MS sufferers.

In June the MS Society said the Helen Ley centre was being sold to MS Respite and Care Services and current staff would be transferred as part of the deal to “save” services.

But that deal has fallen through and a new buyer is now being sought.

Tony Payne, from Coventry, whose son Mark uses the centre, said: “It is terribly disappointing to hear it could still be closed.

“My son gets six weeks respite a year. As his main carer it’s invaluable. When you’re caring 24-7 you need time apart to re-assess and relax.

“The news that the sale has fallen through doesn’t make you feel secure.”

Barbara Williams, from the MS Society, defended the decision to find another provider.

She said: “The board of trustees took a very difficult decision and to change the way that we used our money to transfer the centres to alternative providers but for us to then be able to support many more people to have a break.”

Disabled Woman Catches Carer Stealing From Her Purse Thanks To CCTV

October 3, 2011

This is something all disabled people should read.

Giude Dogs To Be Allowed On Tube Escalators

October 3, 2011

Good.

Guide dogs will be allowed on moving escalators on the Tube for the first time under changes to a bylaw, it has been announced.

Transport for London (TfL) said it had been advised for years that dogs should not be allowed to use moving escalators to prevent injuries.

Passengers had to carry dogs or use lifts or stairs instead.

But recent research has proved that dogs can be trained to use a moving escalator.

The rule banning dogs on escalators dated back to the days of wooden escalators and fears that dogs could get their paws caught.

‘Antiquated bylaw’

Although Tube staff would often provide assistance to visually impaired passengers, including by stopping escalators where possible, the official line was that this may not be possible “at busy times” in case it caused overcrowding.

But research carried out by The Guide Dogs for the Blind Association has shown once guide dog owners are trained, they will be able to safely use escalators.

The charity will now carry out a training course for Guide Dogs users to learn to use the escalators safely.

The change, which comes into effect this week, will also apply to the Docklands Light Railway and London Overground.

A TfL spokesman said: “It was not always practical for disabled passengers with an assistance dog to carry them on escalators, particularly if the person was visually impaired.”

Oliver Barton, client services manager at Guide Dogs for the Blind, said: “Once guide dog owners are trained, they will be able to safely use escalators if they provide the only means of accessing TfL managed stations.”

London Mayor Boris Johnson said: “The modernisation of this antiquated bylaw helps make the Tube more accessible for all.”

Cell Boost For MS Treatments

October 3, 2011

A new cell discovery could pave the way to novel treatments for multiple sclerosis, rheumatoid arthritis and other auto-immune diseases, scientists believe.

Researchers in the US identified a previously unknown molecular interaction that helps programme the immune system to attack the body’s own cells.

The findings explain how and under what conditions a particular enzyme, PKC-theta, activates disease-fighting white blood cells called T-lymphocytes.

Scientists led by Dr Amnon Altman, from the La Jolla Institute for Allergy and Immunology in California, identified a small region of the enzyme that appears to be vital to the process.

British expert Professor Christopher Rudd, from Cambridge University, said the discovery was a “big advance” with clinical implications. “This now means that this region in PKC-theta can be targeted by novel therapeutics, or that protein fragments of the region itself could be used to treat a variety of immune disorders,” he said.

The research is published in the journal Nature Immunology.

Dr Altman said efforts to find ways of blocking the enzyme’s activity have been ongoing at several drug companies.

He added: “Here we have found an alternative way of blocking the function of PKC-theta. Essentially, the enzyme remains fully active, but it can’t trigger T-cell activation because it’s not in the right place in the cell.”

Targeting the interaction between the enzyme and immune cells was likely to be highly selective and have a minimal effect on other cells in the body, he said.

However, he stressed that finding a way to stop PKC-theta binding to its molecular target on T-lymphocytes was not an easy task.