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N-Dubs Star Tulisa On Being A Young Carer

August 10, 2010

Singer Tulisa Contostavlos, from pop group N-Dubz has returned to the north London school where she struggled as a teenager while trying to study and care for her mother.

In her teens, she was a full-time carer for her mother, who suffered from mental illness, and she left school before taking any exams.

Deputy head Irene Foster said the school was now much better at spotting pupils in a similar situation.

Tulisa My Mum and Me is on BBC3 at 2100 BST on Tuesday 10 August 2010 and afterwards on BBC iPlayer.

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Mortgage Aid Cut Will See Disabled People Lose Homes

August 9, 2010

Almost 65,000 disabled people, including those with profound mental health problems, are at risk of losing their homes because of a cut in mortgage payment support for vulnerable people, according to the body representing housing associations.

The benefit, which pays the interest on a mortgage, is to be reduced from its present value of 6.08% to what the government says is the Bank of England average mortgage rate of 3.67% – a cut that means a loss of £1,300 annually for every £100,000 borrowed.

The National Housing Federation says that at least 64,000 people will be at risk of falling behind on payments, with those affected struggling to “keep up with their mortgage payments, falling into arrears and eventually losing their home”.

Ministers announced the cut in interest payments in the June budget as a part of the deficit reduction programme, but the federation argues that the coalition has yet to publish a comprehensive assessment of how the changes will affect those with disabilities – undermining government claims that it would shield the poorest from cuts in public spending.

Experts said the savings, estimated at £60m, are tiny compared with the size of the welfare budget of £87bn. But the Department for Work and Pensions said the current system meant 92% of recipients receive more help than they need.

The federation’s chief executive, David Orr, said that this was a “particularly harsh way to try to bring public spending down”. He added: “The government says that it will try to protect the most vulnerable as it makes spending cuts, but this policy will hit thousands of people with disabilities, cutting off many from the prospect of owning their own home.”

Around 59,000 disabled people use the benefit to help them pay mortgages on homes they have bought. A further 5,000 people with profound physical disabilities and mental health problems have used the state payments to secure niche mortgages to pay for shared ownership homes – provided by housing associations – through which buyers purchase a fraction, usually more than a quarter, of the property and pay rent on the rest.

Since many of the claimants would not qualify for the best deals from high street banks, the scheme allows them to access rates which are comparable to those available to people who are not disabled. At 6.08%, the interest support compares favourably with the starting rate of 6.49% offered by Countrywide, Britain’s largest estate agency, for the most common mortgage taken out by customers last month.

Most of those who take up the benefit are first-time buyers with a total household income of less than £60,000. A sizeable minority are home owners who can show that their houses are no longer suitable for their needs. They may have long-term support needs, have a full-time carer, or need to live close to a medical facility.

In many cases the decision to curb the payments from October will strip from the most vulnerable a chance of leading an independent life.

Gloria Cornwall’s 23-year-old daughter, Faith, was planning to move to a two-bedroom flat with a full-time carer as part of a shared ownership scheme with a housing association in east London. The mortgage the family had secured was £100,000.

Mrs Cornwell said: “Faith was born with Down’s syndrome. She needs full-time care. I am 68 and my husband 72. Our health is failing and this was a chance for Faith to live on her own. We won’t be here forever. How can the government just take this away? We do not understand it.”

Helen Goodman, Labour’s frontbench spokeswoman on housing benefit, said: “Once again we see the terrible effects of the coalition government’s ill-conceived and crude approach to cutting public spending regardless of who it hurts. In the case it is the most vulnerable.”

Shuker Claims Singles And Doubles Wins In Belgium

August 9, 2010

Lucy Shuker. Pic: Adam Fradgley

Shuker’s performances have boosted her world ranking

British wheelchair tennis number one Lucy Shuker completed a notable double with victory in the women’s singles and doubles at the Belgian Open.

Shuker’s 6-1 6-4 win over home favourite and world number eight Annick Sevenans in the singles decider was the biggest success of her career.

The Taunton-based player, who started the week ranked 12th in the world, will return to the world’s top 10.

She also teamed up with Sharon Walraven to win the doubles.

They came from a set down to beat Sevenans and Aniek van Koot in a championship tie-break 6-7(5-7) 6-2 11-9.

In the women’s singles, Shuker beat three players ranked above her in her four matches, defeating current world number four van Koot for the second time in six weeks in the quarter-finals.

She then beat world number 11 Katharina Kruger of Germany 6-2 7-5 in the semi-finals before the win over Sevenans.

“I’m on cloud nine at the moment,” said the Briton. “I’m delighted to have beaten three top players and won my first ITF 1 Series title and to have added the doubles title as well make it all even more special.”

Channel 4 Campaign To Highlight Disabled Athletes’ Abilities

August 9, 2010

Channel 4 is to launch a two-year, multimillion-pound campaign promoting its coverage of the London 2012 Paralympic Games this weekend with a “bold” trail called “Freaks of Nature”.

The campaign will be Channel 4’s biggest ever, according to the service’s head of marketing, Rufus Radcliffe.

Launching on Sunday, the first promos feature five disabled athletes talking about their extraordinary abilities and how they set them apart from other people.

The first part of the campaign starts with a trail on Channel 4 and concludes with full-page adverts in the national press across the August bank holiday weekend.

One Channel 4 insider said: “Freaks of Nature is designed to make people sit up and think. It is quite challenging in some ways but has been carefully researched and tested and the athletes who take part agreed to it.”

The Channel 4 chief creative officer, Julian Bellamy, added: “The Freaks of Nature marketing trail is part of a bold campaign that portrays Paralympians as Channel 4 feels they should be seen – supremely talented athletes who, like their able bodies sporting counterparts, are set apart from the rest of us by their staggering ability, not their disability.

“And this reflects our ambitions for our coverage of the London 2012 Paralympic Games themselves – encouraging viewers to focus on the awe-inspiring ability on display throughout.”

Channel 4 Launches Paralympics Push

August 9, 2010

Channel 4 is aiming to make household names out of disabled sports stars such as nine-times gold-medal-winning equestrian Lee Pearson in the run-up to the the London 2012 Paralympic Games.

And the channel is launching a £500,000 search for British disabled talent to act as commentators, experts and presenters during the Paralympics.

Channel 4’s acting chief creative officer, Julian Bellamy, confirmed today that, apart from programming such as the news, the broadcaster’s schedules will be cleared for 150 hours of live coverage of the Paralympics, which run from 29 August to 9 September 2012.

The broadcaster won the rights to air the Paralympics at the beginning of this year. The event previously been aired by the BBC.

Channel 4 will mark two years until the opening ceremony with a series of programmes during this August bank holiday weekend, including the start of a new 10-part magazine programme called That Paralympic Show.

That Paralympic Show will be hosted by T4’s Rick Edwards and the wheelchair basketball medallist and broadcaster Ade Adepitan, and feature guests such as Celebrity Big Brother winner Alex Reid trying out Paralympic sports, plus regular features such as Pimp My Chair.

Steve Jones and Miquita Oliver will also host that weekend’s T4 from a country house close to the Paralympics GB training camp in Bath.

Other programmes include Inside Incredible Athletes, a documentary by Jump London director Mike Christie, featuring seven disabled athletes shot against the background of some London locations.

Speaking at the launch of Channel 4’s Paralympics build-up today in London, Bellamy said the 2012 event will be “biggest event in Channel 4’s history”. “We believe we can do for the Paralympics what we did for cricket. More than ever before, I believe Channel 4 can do something different and special,” he added.

He said research showed that 84% of the public could not name a single British Paralympian, despite Britain coming second in the medals table in 2008. “We are trying to dramatically change that lack of awareness,” he added.

Channel 4 is also investing £500,000 to find and train disabled presenters for 2012. During the coverage it wants disabled presenters to make up 50% of its Paralympics on-screen team.

Adepitan said he did not know why there was a dearth of disabled presenters. “I don’t think there’s any particular reason why but Channel 4 is doing there utmost to find the best talent to portray the Paralympics,” he added.

‘The Authorities Are Always Right’ Showing At Edinburgh Fringe 2010

August 8, 2010

I received an email from my good friend, documentary maker Sapna Ramnani, yesterday, saying that her documentary The Authorities Are Always Right is being shown at the Edinburgh Fringe Festival throughout this month.

The Authorities Are Always Right is the true story of my childhood friend, Nihal Armstrong, who, along with his mother, faced a long, difficult and painful battle with ‘the authorities’ for an inclusive education at a mainstream school in the 1990s.

Personal connections aside, this film is well worth a watch for anyone who is interested in inclusive education. I hope that any of my UK readers who are planning to go to Edinburgh Fringe will take some time to check it out.

British Historian Tony Judt Dies Aged 62

August 8, 2010

The British historian and intellectual Tony Judt has died aged 62.

The London-born author and academic died from complications associated with motor neurone disease at his home in New York.

As Professor of European studies at New York University he courted controversy with his views on Israel and the conflict with the Palestinians.

He suggested Israel should accept Arabs as equal citizens in a secular state.

In his youth, Judt was a Marxist and a Zionist. But his experiences serving with the Israeli military in the Golan Heights during the 1967 Six Day War deeply influenced him.

He came to suggest that the Zionist dream of a Jewish state was “an anachronism”.

‘Looney-tunes’

Judt urged Israel to accept a “one-state solution” to its conflict with the Palestinians, a secular bi-national state.

An article he wrote on the subject generated controversy and garnered criticism from all sides.

“Today I am regarded outside New York University as a looney-tunes leftie self-hating Jewish communist; inside the university I’m regarded as a typical old-fashioned white male liberal elitist,” he told the Guardian newspaper in January.

Judt was also the author of Postwar: A History of Europe Since 1945, acclaimed by historians as one of the best works on the subject.

He was diagnosed with Amyotrophic Lateral Sclerosis, otherwise known as Lou Gehrig’s disease, in 2008.

Although paralysed by the disease, he continued to lecture and dictate essays until just before his death.

Air Canada Repairs Wheelchair After Twitter Pressure

August 8, 2010

Pressure from Twitter users has made Air Canada fix a terminally ill boy’s wheelchair after it was damaged during a flight, his family has said.

Appeals for help from the aunt of 10-year-old Tanner Bawn went viral on the micro-blogging website.

An airline spokesman said they had acted as soon as they had heard about it. It has now promised to send the boy to Disney World.

Tanner has Duchenne muscular dystrophy and is immobile without the chair.

Tanner Bawn’s $15,000 (£9,300) wheelchair arrived at New York’s La Guardia Airport in pieces, during a trip to the city for a charity run.

Mr Bawn along with his mother and aunt, who were waiting in a hotel room in Manhattan for 24 hours, were said to be ecstatic after users of the micro-blogging site helped grab the attention of the airline.

The airline is reported to have contacted an overnight repair centre after hearing about the boy’s problems from other Twitter users and had the specialised chair returned to Tanner a day later.

“I’m impressed with how Air Canada has stepped up. But I’m still distressed that it took the internet shrieking loudly at them for it to happen,” Mr Bawn’s aunt, blogger Catherine Connors, told the Globe and Mail newspaper.

She added: “If my sister and Tanner had been here on their own with no blogging or without the vast social-media network to help them, it wouldn’t have turned out this way.”

Air Canada spokesman Peter Fitzpatrick said the airline had acted as soon as they had heard about the problem.

Tanner flew to New York City to participate in a walk-a-thon organised by his aunt to help raise money for a live-in carer in his home.

Air Canada has promised to make permanent repairs when the group returns home to Kamloops, British Columbia.

Mother Was ‘Determined To Care For Daughter Alone,’ Says Oldest Daughter

August 6, 2010

A mother who was found dead at home with the body of her disabled daughter was “determined” to care for her alone, her eldest daughter has said.

Stephania Wolf, 67, and Sam Wolf, 28, were discovered in Wheathampstead, Hertfordshire, on Saturday.

Her eldest daughter, who has not been named, said via police that Stephania was “committed” to Sam’s care.

Hertfordshire County Council said they were known to adult care services but had refused the offer of help.

It is now looking into the case.

Tests suggested the pair did not sustain any external injuries but the full results of post-mortem examinations are not expected for several weeks.

Move from Poland

Ms Wolf’s eldest daughter, a married mother-of-two from Bedfordshire, said she did not blame care services in any way for what had happened.

“They did so much, including fitting ramps and making it easier for Samantha to get around the house.

“But the care services couldn’t help any more than mum would let them.”

Ms Wolf, a hairdresser, was born in Poland and lived there when she married and had her eldest daughter.

The couple separated and Ms Wolf moved to the UK after meeting her second husband, Sam’s father.

Sam developed disabilities as a baby, including epilepsy and heart problems, and Ms Wolf and her husband later separated.

The daughter continued: “From the moment Sam was born, mum was committed to making her as healthy as possible.

“She lived for her and was determined to get her better.

“But I think as time went on she also become more and more determined to do this by herself, without help from anyone, family or care services.

“It’s tragic because it didn’t have to be like that if she was just willing to take that help.”

She said her “wonderful” mum was “vibrant, hard-working and loved going out” and Sam was “great fun and very intelligent”.

“Samantha and I had our little secrets as sisters that mum didn’t know about and she was a real character.

“I will miss them both so much.”

Police said Ms Wolf also left a brother in Germany and a sister in Poland.

// <![CDATA[//

BBC News – Campaign to free autistic son from care

August 5, 2010

A man from London has launched a campaign to get his autistic son freed from care. Mark Neary wants his son Steven, 20, returned home so that he can look after him.

Steven was put voluntarily into respite care in December last year but his behaviour deteriorated and in April Hillingdon council made him the subject of a Deprivation of Liberty Order.

Now Mr Neary’s access to his son is severely limited. The Council says the order was needed to protect Steven and people he might come into contact with.

A Department of Health spokesman said “These measures safeguard vulnerable people and protect their rights. It is unacceptable that before this law came in, care homes or hospitals were able to lock someone up or sedate them without their consent and without that person having any kind of right to appeal or protest”.

Mark Neary spoke to Julian Worricker on BBC Radio 4’s programme You & Yours.

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BBC News – Campaign to free autistic son from care, posted with vodpod

BBC News – Raoul Moat victim Pc Rathband returns to shooting scene

August 5, 2010

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BBC News – Raoul Moat victim Pc Rathband return…, posted with vodpod

Kerry Pink

August 5, 2010

Today’s Daily Mail Online carries the inspirational story of Kerry Pink, who came out of ‘locked-in’ syndrome after 18 months. She recently sent a message of hope to Richard Rudd, the man who became ‘locked-in’ after a motorbike accident. Kerry is now a wheelchair user, but she is just happy to be alive and back home with the husband and family she loves. Her story is well worth a read. She and her family have my best wishes.

Nicky Clark Discusses The Wolf Family Case

August 4, 2010

Disability Rights campaigner and mother of two DisAbled daughters Nicky Clark has been talking to the BBC about the case of Stephanie and Sam Wolf today.

She was great in her appearance on BBC Breakfast early this morning. A few hours later, she spoke to BBC Radio 5 Live’s Victoria Derbyshire about the case. You can listen to this here for the next 7 days. The discussion starts at about 0:41.00. There are more reactions to Nicky and the case for the last 20 minutes of the programme.

Dancing DLA Fraudster Gets Community Order

August 4, 2010

A jazz dancer who fraudulently claimed nearly £20,000 in disability benefits has been given a community order.

Terence Read, of Manchester, said he was crippled by arthritis and barely able to walk, but was filmed teaching dancing at a swing music night.

At an earlier hearing, he admitted failing to promptly notify authorities of a change in circumstances.

A judge at Manchester Crown Court said it was not in the public interest to send the 61-year-old to prison.

Anonymous tip-off

Judge Martin Rudland gave Read a 12-month community sentence and ordered him to complete 120 hours of unpaid work.

Read, of Northwold Drive, Blackley, claimed benefits legitimately for 10 years from March 1995, the court heard.

He suffered arthritis from the age of 25 and was virtually housebound by the early 1990s.

However, a hip replacement operation provided “instant relief” and he was able to take an interest in his new hobby.

But he failed to tell the Department of Work and Pensions (DWP) and continued to claim Disability Living Allowance between June 2005 and December 2008, amounting to £19,915.

Officials received an anonymous tip-off and filmed him at Manchester’s Printworks complex.

The video showed Read leading a group of students through their steps in a range of styles from Lindy Hop to Charleston. He was also seen carrying heavy equipment.

Read ran classes across Greater Manchester from 2005 onwards, the court heard.

David James, defending, said: “The interest in this case has been quite a significant punishment. It is difficult to walk and hold his head high now.”

Judge Rudland, sentencing, said: “You learned to live frugally and contentedly, going out rarely, until the dancing came into your life, which seemed to transform your joie de vivre.

“There is absolutely no suggestion you are a shirker who has avoided work.

‘Good work’

“I suspect over time the claim being made went to the back of your mind and it was something you took for granted.

“Your case was genuine at the start and then drifted into dishonesty.

“It is not in the public interest that you should be deprived of your liberty.”

He said Read was doing “good work” by taking swing music into care homes.

Read has paid back £3,000 of the money owed and a plan is in place to settle the remainder.

Jobs Cash For People With Autism In Scotland

August 4, 2010

A project in Scotland to create up to 50 IT jobs for people with autistic spectrum disorder (ASD) has been awarded £700,000 in grant and loans.

The Scottish government cash will help the Specialisterne project, set up by Community Enterprise in Scotland (CES), to recruit and train staff.

The Glasgow project is based on a Danish model which employs people with ASD as software testers.

Only 13% of adults with ASD in Scotland are thought to be in full-time work.

Specialisterne Scotland, which was set up with the help of The National Autistic Society Scotland and the Autism Resource Centre, will spend the next six months recruiting the first 12 potential trainees.

They will undergo a four-month training programme using Lego Mindstorm sets and robotics to identify and match their skills to work tasks.

To ensure the trainees achieve their full potential, Specialisterne aims to create a highly-planned and predictable working environment to minimise stress.

CES chief executive Gerry Higgins said: “We know from the experience in Denmark that Specialisterne Scotland has the potential to change lives for the better by providing mainstream employment at the market rate for people with autism, while transforming recruitment attitudes and business practices.

“The company will commence commercial testing in early 2011 following recruitment and training of the workforce.

“By 2015 we expect to employ a total of 61 people, 50 of whom will have autism and have a projected turnover of £1.6m.”

As a social enterprise, Specialisterne Scotland will re-invest any profit to help create jobs for people with ASD.

‘Important milestone’

Scotland was the first country to be chosen to develop the model outside of Denmark.

Thorkil Sonne, founder of Specialisterne and Specialist People Foundation, said: “With the opening of Specialisterne Scotland we have set a very important milestone in making society welcome people with autism spectrum disorder as valuable and worthy citizens.

“The opening of Specialisterne Scotland sets the scene for the first international Specialisterne operation with potential to become a showcase not just for Scotland and the UK – but for the whole world in our ambition to enable one million jobs for specialist people globally.”

In addition to the Scottish government funding, the project has also received £407,036 from the Big Lottery Fund and £30,000 from Glasgow City Council.

Mother And Disabled Daughter Found Dead After Refusing Help

August 3, 2010

A woman who died, leaving her disabled daughter apparently to starve to death, had refused the help of social workers, a local authority said today.

The woman, named as Stephanie Wolf, 56, is understood to have died several weeks ago. Her 29-year-old daughter, who was reportedly paralysed from the neck down, was unable to care for herself.

She was found alongside her mother at their in Wheathampstead, Hertfordshire, at the weekend. The bodies were partially decomposed.

A spokeswoman for Hertfordshire county council said: “They were known to adult care services but they refused the offer of our services.”

A source at the council said social services still had a duty of care to families who needed help, even if they refused it.

The authority carried out an assessment of Wolf’s home in August 1998. As a result, ramps and rails were fitted to help her daughter, a spokesman said.In March 2006, the council offered Wolf the chance for her daughter to attend a day care centre but this was also refused.

That was the last time the council was in contact with the pair. The council is now reviewing its dealings with the family, the spokesman added.

A police spokeswoman said initial post-mortem examination results showed there were no suspicious circumstances.

NI Abuse Brothers To Be Moved From Hospital Ward

August 3, 2010

I am very pleased to read this, as I covered the campaign that made it happen last month.

Two paedophile brothers on a hospital ward with patients who have learning difficulties are to be moved.

James McDermott, 61, and Owen-Roe McDermott, 52, sexually abused children over 30 years in County Fermanagh.

They voluntarily admitted themselves to Lakeview Hospital in Londonderry after they were deemed too mentally ill to stand trial in June.

Relatives of other patients on the ward said they were relieved the brothers were being moved to a different unit.

“A weight has been lifted off our shoulders,” said Dermot O’Hara.

“We are very pleased that the trust moved so quickly following our meeting on Friday, and these measures are being put in place today.”

A Western Health Trust spokesman said it was a complex situation which needed to be addressed with sensitivity.

‘Satisfactory resolution’

Trevor Millar, director of adult mental health services, said they had discussed the practicalities of offering care to the McDermott brothers.

“We are grateful that with the families’ support and cooperation, the situation has moved forward to a satisfactory resolution for everyone,” he said.

“The trust is continuing to care for the needs of all clients and will work closely with the families as we do this.”

The two brothers were allowed to return home to the village of Donagh, County Fermanagh, in June after they were declared mentally unfit to stand trial.

They admitted themselves to Lakeview after village residents protested at their return to the area where they had committed the abuse.

However, families of patients on their ward objected to them being treated there and held a series of meetings with the Western Trust.

Between them, four McDermott brothers, from Moorlough Road in Donagh, faced 60 charges of abuse spanning five decades.

John McDermott was jailed for nine years in June for the abuse, which was described as frequent, regular and persistent.

Peter Paul McDermott took his own life during his trial on abuse charges involving two young boys.

James and Owen-Roe McDermott were given lifetime orders banning them from being with children, and a two-year treatment and supervision order placing them in the care of social services.

Jeremy Clarkson ‘Special Needs’ Ferrari Joke Sparks Anger

August 3, 2010

I first heard of Jeremy Clarkson in early 2009 when he was caught on record by Australian journalists calling Gordon Brown, the then British Prime Minister, a ‘one eyed Scottish idiot’ because he is partially sighted. I didn’t like him then, and I like him even less today, because of this:

Jeremy Clarkson’s has angered disability charities and carers by describing a car as “special needs” on BBC2’s Top Gear show.

The TV presenter was comparing two Ferrari cars when he said the older one looked like a “simpleton”.

He then added the car, called 430 Speciale, should be the “430 Speciale… needs” in Sunday’s show.

His comments angered Suzi Browne at the National Autistic Society.

She said: “To use terms such as special needs in a derogatory or flippant manner only perpetuates the prejudice and bullying which people with disabilities have to cope with.”

She added 40% of autism sufferers were bullied at school.

Mum Mo Gilbert, from Crawley, West Sussex, whose son, 17, has autism and asperger’s syndrome, said: “It’s a disgusting thing to say. It’s no joke having a disability.” The BBC declined to comment.

Last time, Clarkson apologised for his disablist comment, and the BBC took no further action. I wonder why they haven’t commented yet this time. I wonder if they’ll bother to comment at all. I wonder if Clarkson will bother to apologise this time. However, as I said last year, apologising for disablism doesn’t change the pain it causes to disabled people. It doesn’t change the fact that disablist comments are wrong.

Even if, for a minute, we accept that Clarkson’s comments about Gordon Brown were unintentional, no one should make the same mistake twice. If a person does the same thing wrong more than once, it should not be called a mistake.

Clarkson has proved to the public at least twice that he is disablist. Personally, I don’t think the BBC should be allowing a disablist person to work for it in such a high profile position. That’s why I’ve started this Facebook group calling for him to be sacked. Please join it if you agree.

Government Would Rather Cut Costs Than Help Disabled People Work

August 3, 2010

According to the national statistics, there is a benefit worth £8.2bn a year where fraud runs at 1%, twice the rate of both disability living allowance and incapacity benefit. These benefits are the pension credit and the state pension, and a pilot review in 2005-06 estimated the cost to the taxpayer up to £51m a year in fraud.

The vast majority of pension credit claimants make genuine claims for money to support them in old age. Only a few very strange people would suggest that pensions should be cut for everyone, just because a handful of pensioners play fast and loose with the system. And yet, that is the argument made for the sick and disabled. Why? It is all about the tabloid-stoked perception of anyone claiming disability-related benefits as potential scroungers who are able to work. This line of thought suggests that most disabled people are capable of some kind of work – however minimal – and that benefits disincentivise work. Such thinking allows the government to take a hacksaw to the welfare state in the guise of benevolence aimed at reducing fraud.

Incapacity benefit (IB) supports those too ill to work, and disability living allowance (DLA) helps claimants meet the extra costs of their disability whether in work or not. DLA is not – cannot be – a disincentive to work as it is paid to support the costs of disability, whether in work or not, and paid for the most part at the rate of £19 per week. IB could, potentially, be a disincentive, but only if a claimant suddenly recovered and yet managed to fool the already stringent assessment procedures. The only reason why some people with serious conditions would choose to subsist on these benefits rather than work is more about the difficulty of finding suitable, accessible, and flexible work.

Finding work is difficult enough for the fit and healthy, but if you are one of the 11 million people – from cabinet office estimates – in Britain who is disabled, injured, or suffers from ill-health, then your condition may make it harder to move beyond the interview stage. Enabling most claimants to work means that jobs would have to be tailored to their needs. This means taking account for weeks and months off work, short days, regular shifts in working hours, work days and deadlines, the distraction of severe pain, post-medication sleepiness or sickness, susceptibility to colds, flu and bugs, and the need for home-working.

At least a couples of these issues will affect most claimants, no matter what their level of mobility. This fact makes a poor joke of the idea that most disabled people, even if capable of some work-related task, would be able to cope with employment not adjusted to their symptoms. Employers already complain about statutory maternity leave, so how would they cope with making adjustments to complex and long-term needs, affecting their profitability? And how can people be declared “fit” to work if employers won’t give them jobs because of their illness?

The access to work scheme has been partly successful in removing the physical barriers to work, but there is more to true accessibility than a disabled toilet and accessible office. Many more disabled people could work than the current number, but this would require a huge change in the employment market beyond the “reasonable adjustment” required by the disability discrimination act. Such a change would require huge investment by the government. Rather than facilitating the transition of some claimants into work they can do, it is cheaper to cut people’s benefits and set them up to fail in a dog-eat-dog labour market.

The “migration” of IB claimants to the new employment support allowance (ESA) is a warning for DLA claimants. George Osborne recently announced a new medical-test for DLA claimants to reduce nonexistent disincentives to work, and to tackle the miniscule level of fraud. It will probably be the same type of unfair programme, run by private contractors Atos, aimed at reducing the caseload for DLA by 20%. This implicit target for throwing people off DLA is easily seen in June’s budget.

As for fraud, there is little justification for a catch-all punishment. Atos will get £500m over seven years for kicking people off benefits, while fraud in IB over this period will add up to around £250m: the tests intended to stop the fraud cost twice as much as the actual fraud! This means that the only way Atos can be value-for-money is if they cut £250m off the ESA caseload – so that there is indeed an implicit target, just as there is for the DLA caseload. The real story isn’t of cheating disabled people, but of a government with a badly hidden agenda.

Reactions To IDS Benefit Reform Announcement

August 2, 2010

Last Friday, IDS announced plans for a major reform of the benefit system. Today, Ed Jacobs has summarised reactions to these reforms from Northern Ireland, Scotland and Wales over at mainstream political blog Left Foot Forward. He mentions disability benefits, so I thought I’d link the post for any of you who might be interested. Comments are very welcome, as always.

Josef Sudron

August 2, 2010

A toddler has walked his mother and father down the aisle – despite doctors warning  that he may never stand on his own two feet.

Young Josef was able to join in his parent’s big day using a specially-adapted walking frame that had arrived at their home just two days before the wedding.

Louise Sudron, 24, and Garry, 26, a soldier who has served in Afghanistan, said the device had made their wedding extra special.

The 23-month-old boy has polymicrogyria, a brain condition that has left him deaf and unable to walk unaided. The brave youngster is due to undergo a 10-hour cochlear implant  operation in September.

But the toddler, who uses sign language to communicate with his family takes it all in his stride.

Louise, said: ‘He loves his walking frame. The doctors told me there was a  possibility he would never walk. I never thought I would see it.

‘It was a miracle in my eyes seeing him do it. I hadn’t cried all day but as soon as I saw him walking, that was it, I was off.

‘On the most important day of my life, apart from the day he was born, he did  that for me.’

Louise and Garry have been a couple for three years and got engaged over 18 months ago.

The pair were delighted when Louise fell pregnant, despite the fact Garry, a soldier in the First Rifles Regiment, had to be based in Wales through most of the pregnancy.

Garry was home for the birth but was posted to Afghanistan a short time later.

About two weeks after Josef was born, the pair discovered their baby was deaf.

Josef was fitted with hearing aids, but they did not help and he is currently only using them to prepare for his cochlear operation.

Louise’s mother Marie Healy, 50, said: ‘Louise had also noticed he wasn’t using his hands properly and  looked at the light all the time.’

Louise took Josef to a clinic and he was referred for a brain scan before he was finally diagnosed.

Marie said: ‘It affects the left hand side of his body and he has problems with balance. He can sit up and crawl but doesn’t pick things up with his left hand.

‘He does sign language and both Louise and I go to sign language classes.  Louise has taught him lots of signs like mammy, daddy, grandma and feed me.’

Louise added: ‘When we found out, I just dealt with it and gave him everything  I could. I do his physiotherapy with him every day.

‘He has his cochlear operation on September 17 and hopefully by Christmas he  should be hearing us.

‘I’m looking forward to Josef getting his speech and starting to hear him say  mummy and daddy. People take for granted hearing their child saying, ‘I love  you mammy.’ I would give anything for Josef to say that.’

PACE Inclusive Sports Club Members Look Forward To London 2012

August 1, 2010

I’ve known Krishna Birdy and her family for as long as I can remember. I’m an occasional member of PACE and have always supported the club in all their activities. So I’m very proud to see that the PACE Boccia team recently made BBC London News.

“It is all out war on the courts.” That’s boccia, according to Krishna Birdy, founder of PACE, a charity to set up promote sport among people with disabilities.

Dan Bentley

GB’s Dan Bentley pumping his fist in the Beijing Paralympics

She says players compete against one another but also “are fighting against their own disabilities. You mentally and psychologically need to psyche yourself up.”

It may sound like a culinary delicacy, but boccia (sounds like botcha) is one of three Paralympic sports without an Olympic counterpart (goalball and powerlifting are the other two).

What is boccia?

The aim is to throw or bowl balls to get closest to a target ball called a jack. It is related to petanque, or bowls, yet it is far less known.

The best part of taking part in Boccia is quite simple. Nothing compares to the thrill of winning.
Ali Lalani, GB Boccia team player

Us Brits are pretty good at it.

In the 2008 Beijing Paralympics, Team GB brought home gold and silver in two boccia events and there are high hopes for them to win big on home soil in the 2012 Games.

“The best part of taking part in boccia is quite simple. Nothing compares to the thrill of winning,” said Ali Lalani, a member of the GB Paralympic boccia team for the past five years.

Ali Lalani

Ali Lalani, GB boccia team player

Ali added: “I think it’s the only game in the world where a person with a disability can play a non-disabled person and beat them.”

Audio slideshow: The heart and gold of boccia

Local grown talent

Boccia is not an obscure sport for elite athletes. All across London small venues host aspiring players who come together to compete in tournaments at local, regional, and national levels.

According to Lucy Hall at Cerebral Palsy Sport, boccia is such a grassroots sport that the actual number of people playing is unknown.

But over 250 young people recently competed in the London Youth Games and over 700 people in 143 teams entered the 2009/2010 National Pan Disability Boccia League. Ten of those teams were from London.

PACE, based in Wembley, is one of those grassroots organisations around London that provides sporting opportunities for those with disabilities.

Boccia facts
Players must be in a wheelchair. They can use devices such as ramps or chutes if they cannot throw or kick balls
Boccia can be played individually, in pairs, or as a team (three against three)
There are four classifications depending on the level of disability
Seven boccia medals are up for grabs in the Paralympics
Boccia is believed to have originated in Greece
Over 700 people in 143 teams entered the 2009/2010 National Pan Disability Boccia League. Ten teams were from London

Grassroots organisations can produce high-quality talent and many positive side effects. PACE squad members say boccia boosts confidence, increases their muscular control, and builds leadership through coaching or serving as squad captain.

Over time, PACE sees players gain freedom, independence and ways to meet friends.

“I’m sure that many disabled people don’t really get to do a lot of things because they may be restricted and boccia is one of the ways they could go out and do some social activities as well,” explains 17-year-old Alex Dukes, a squad member of PACE.

Michael Forrest, another squad member, has cerebral palsy and qualified for the national finals.

Krishna remembers it was something they had never thought of and being able to play at that level is a great achievement for him.

Ali explains “[boccia] is for athletes with the highest degree of disability within the Paralympics. So for us, muscle control and accuracy is already impaired to a certain degree. To be able to control our movements and our shots makes the achievements much more remarkable.”

PACE squad members

PACE looking forward to 2012

High hopes for 2012

2012 is especially important for England since the Paralympics originated here in 1948 with a competition for wheelchair athletes at Stoke Mandeville Hospital in Buckinghamshire.

This eventually evolved into the modern-day Paralympics and 2012 is often referred to the year when the Games truly come home.

Sport Operations Manager at Paralympics GB Duncan Tunbridge helps identify and support a core team of 20 for the GB Paralympic squad.

He said a survey undertaken by Lloyds TSB showed boccia was the least known Paralympic sport, yet it was the one people wanted to learn more about.

“Currently awareness is low, but certainly schoolchildren’s curiosity is there to find out about the sport. Hopefully London 2012 will provide a platform for that.”

You just don’t know where the future Paralympians or Olympians are going to come from.
Krishna Birdy, founder of PACE

So what should Londoners know about boccia in the lead-up to 2012?

Alex says: “In the disabled community, boccia is a very popular sport. It’s a very mental and tactical game as well.”

The GB boccia team for 2012 will be chosen in November.

Did the success of the 2008 Great Britain team motivate grassroots players?

No doubt, says Alex: “Yes! I could see how passionate they were… I’m hoping to emulate that one day.”

Blind Bank Manager’s Land Speed Record Aim

August 1, 2010

A bank manager from Sale in Greater Manchester will attempt to become the world’s fastest blind man.

Mike Newman is hoping to drive a supercar at close to 200mph (321 km/h) to reclaim the world blind speed record in Carmarthenshire.

It was taken earlier this year by a Turkish driver, Metin Sentuk, who reached 187mph (301km/h).

He will be guided across Pendine sands by his father, who is also his trainer, watching from a helicopter overhead.

Mr Newman experienced a setback during a practice run yesterday, after his car began to spin and suffered minor damage.

A replacement car is now being used, which has a top speed of 196mph.

Mr Newman, 48, who was born blind, is also raising money for charity, including Guide Dogs for the Blind, and to encourage motor sport for the disabled.

The business manager with Barclays said: “I’ve been a keen motorsports fan most of my life and this has given me an opportunity of a lifetime – a dream to drive a super car.

“In the process of that I get the chance to break the land-speed record for a blind driver, driving unaccompanied.”

The car being used is British-built, the Keating TKR, designed and manufactured by Keating Supercars Ltd in Manchester.

Mr Newman’s father acts as navigator by radio link, who for this attempt will be flying above in a helicopter.

He has been undergoing test runs along the seven miles of sands, the scene of other speed attempts down the years, in a Jaguar.

The car ran into a few problems during a run by a test driver on Saturday, but the team were hoping to make repairs.

The weather had improved after rain on Friday and Mr Newman said he was “excited” looking forward to the attempt.

Back in 2003, Mr Newman set 144mph (231km/h) record in a Jaguar in York then smashed that record in 2005 in a BMW M5 reaching 167mph.

The record attempts starts at 1330 BST on Sunday until dusk.

Simon Morris, chairman of Pendine Community Council said: “It is fantastic that Mike and the Speed of Sight team wanted to hold their record attempt on our beach.

“We are hoping for a great turn out on the Sunday of local and travelling supporters.”

Article On Writing Against Disablism

August 1, 2010

Dear Readers

I’ve just had an article published in the Summer 2010 issue of Enigma Creative Writing Magazine. It’s called Writing Against Disablism. It’s about Disablism and why we should fight against it. It also promotes Listen To The Silence, my e-book of poetry.

To read the article, please click the first link above and scroll down to page 32 of the PDF.

It’s been quite a while since my last real magazine article, so I’m very excited to be back in print! Do let me know what you think of the article in the comments below.

Thanks!

Best wishes, as always

Samedifference1

A British Soldier’s Rehabilitation

July 31, 2010

This is a truly inspirational story.

In the few seconds it took for the numbness he felt after the explosion to turn to pain, Private Derek Derenalagi knew he had lost his legs. He thought he was going to die.

He briefly did die, he later learned, on the operating table at Camp Bastion, and again when his heart stopped beating on the operating table at Selly Oak.

In the hours after the blast that threw him from his Land Rover and sent him 30ft in the air, broke his back and blew off his legs, his heart stopped three times, medics began preparations to zip him into a body bag.

“The last time my heart stopped I was pronounced dead,” said Derenalangi, 35. But medical staff detected a faint pulse and he was resuscitated. He was flown to Selly Oak Hospital, Birmingham, and spent eight days in a coma.

Just two weeks on, Derenalagi was demanding to use the gym.

“I told people: One day, I will walk,” he said.

Now, three years after his injury, in Helmand province, he has already broken records in shot put and aims to be on the podium at London 2012.

Fears For Future Of Flintshire Autism Unit

July 30, 2010

Parents have launched a campaign to safeguard a Flintshire centre for children with autism amid fears that it could close.

 The unit, part of Westwood primary school at Buckley, provides specialist therapy for up to 10 children.

 A council education official said there was “little demand” for the service and provision was “under review”.

 A parent, Simon Johnson of Wrexham, said he and others were “outraged” and wanted guarantees on its future.

 

Mr Johnson, whose daughter Mollie, seven, goes to the unit, said: “We are determined that it should stay open”.

 “My daughter, who is severely autistic, has been there three years and the service it provides is second to none.

 “I have nothing but praise for the work they do.”

 Mr Johnson said he was trying to enlist the support of Boyzone star and Coronation Street actor Keith Duffy, whose 10-year-old daughter Mia was diagnosed with the condition three years ago.

 “He’s been very effective in his campaign to get centres like this set up in Ireland,” he said. “So I’m trying to get hold of him to ask if he’ll help us.”

 The Buckley unit teaches children using a specialist method called Applied Behavioural Analysis (ABA).

 Mr Johnson said until last week, when the school broke for summer holidays, the centre employed two psychologists, leading a team providing one-to-one therapy.

But he said both psychologists had now left following the end of a service agreement between Flintshire and Wrexham councils and Bangor University.

 ‘Vital service’

“It’s outrageous that we have lost such good staff,” he said. “What we want to know now is what’s going to be done by September to replace them.”

 Mr Johnson said that “if more people knew about this centre, and realised what a fantastic service it provides, the demand would be going through the roof”.

 Mr Johnson said he had already raised the issue with local AMs.

 Wrexham council has confirmed that the agreement between the school and Bangor University to provide the ABA service has now ended.

 Graham Edwards, head of education inclusion at Wrexham council, added: “There is little demand from parents of autistic children in Wrexham for an ABA-type approach and from September 2010 we shall only have one pupil at the school.

 “The two members of staff were employees of the university and their contracts have ended with the end of the service level agreement.”

 A Flintshire council spokesman added: “We can confirm that the provision at the autism centre at Buckley Westwood is under review.

 “This is part of an overall review of service level agreements within resource centres across the authority. The centre will continue to operate while the review is undertaken.”

Draconian IB Tests Are Failing The Disabled

July 29, 2010

A disturbing sleight of hand within the revised benefits system has been performed on the electorate and particularly on the sick and disabled. It goes like this: Labour replaced the previous incapacity benefit (IB) with the new employment support allowance (ESA) in 2008 and introduced a fiendishly hard new medical test, followed by members of the government applauding their success in identifying record numbers of incapacity benefits claimants who are fit for work.

The coalition government have foolishly allowed this to continue. And so the new work capability assessment (WCA) has apparently been successful at weeding undeserving claimants out. Just look at the statistics: only 6% of claimants are now found so ill or disabled that they are eligible for full support. This compares with around 83% who passed the previous incapacity benefit test.

The public are led to believe they are forking out money for a nation of benefit scroungers. But the reason why such claimants are failing is that the test is now so stringent and mismanaged that seriously ill people are regularly being declared fit for work: the government has reached a desired answer simply by altering the question, and we take this foregone conclusion as proof that most claimants are undeserving of benefit.

Labour predicted its new ESA medical test would cut IB by 20%. It excelled even these expectations by about three times this amount. They took a good idea – to get the long-term sick back into work where possible – and ruined it by creating a test unfit for purpose. As a result, some of the sickest and most disabled people in society are failing to get the benefit they deserve. They risk falling off the welfare radar and, in effect, cease to exist. It is surely the system that is sick to the core.

Meanwhile, the Citizens Advice Bureau is deluged by sick and disabled claimants requesting help with appeals. So far, around 40% have appealed successfully. Bearing this in mind, it defies belief that Atos, the private company contracted to undertake the work capability assessments, issued the following statement in response to one claimant’s freedom of information request:

“In March 2010, a department-led review of the WCA found that generally it is accurately identifying individuals for the right support.”

The Citizens Advice Bureau is, in contrast, extremely scathing about the new test. This year, they published a document about the ESA work capability assessment, endorsed by major disability groups. It’s called “Not Working”, and its three main findings are:

• Seriously ill people are inappropriately subjected to the WCA

• The assessment does not effectively measure fitness for work

• Application of the assessment is producing inappropriate outcomes

Atos conducts its medicals without an impartial, independent body present. Atos itself is monitored and audited by its employer, the Department for Work and Pensions (DWP), from which it earns a robust £500 million for its seven year contract. Atos employees are well aware of DWP targets, even if these are not explicitly demanded or linked to their remuneration.

Claimants complain that the opinions of their GPs and consultants appear to play second fiddle to the conclusions of the Atos staff during their snapshot medical assessments. These staff may not be qualified doctors; a further statement by Atos in response to an freedom of information request is telling:

“All healthcare professionals (HCP) regardless of primary qualifications are fully trained in Disability Assessment Medicine … A customer may submit evidence from their doctor or specialist, however, unlike the more widely known type of examination, the HCP’s assessment is not concerned with diagnosis or decisions about treatment and therefore specialist diagnostic qualifications are unnecessary.”

Atos are simply concerned with fulfilling the narrow criteria presented by the WCA, the findings of which are then presented to the DWP and used to judge whether a sick or disabled claimant is fit for work or not. Many claimants complain that the Atos reports bear little resemblance to what was said in their medical assessments.

Are there alternatives? Of course there are. I am not against revising the sickness benefits system, which I went through myself. When I tentatively tried to return to work after a long period of illness (ME) I discovered it was an all or nothing system – either you could work or you couldn’t. As I wrote at the time, what is needed is primarily a sensitive medical assessment that takes greater account of the opinion of a patient’s consultant or GP, one that is sensitive to fluctuating conditions such as ME and MS and recognises and supports people who are genuinely too ill or disabled to work.

But the system also needs to be able to help sick people back into work. To date, it still doesn’t allow a person to work part-time indefinitely, for as many or few hours as they are able. Such people could simply have some of their benefit deducted according to how much they earn over the year, as already happens with housing benefit and working tax credits. Instead, claimants are told they have to work over 16 hours or not work at all in order to qualify. This is a ridiculous disincentive for those with chronic conditions to return to part-time work.

I’m afraid the future looks alarming. The coalition government is pushing forward with plans to “migrate” all incapacity benefit claimants onto ESA and will, next year, begin re-assessing all existing disability living allowance (DLA) claimants as well with, I expect, new tougher medicals. The system is likely to go into meltdown with such a workload. All this should spark a well-deserved revolt from disability groups and fair-minded MPs. In the meantime, the most vulnerable and sick in society are the most at risk.

Australia And NZ Thalidomiders Awarded £28.5M Compensation From British Manufacturer

July 29, 2010

The deal, which will see the 45 survivors receive $3m per year for 20 years, comes after two and a half years of negotiations between Ken Youdale, the father of a thalidomide victim, and Diageo, which took over the distributor of thalidomide in the 1960s.

In 1974, Australia’s thalidomide victims received what was supposed to be a full and final payment for their deformities caused by the drug.

However, the payments proved to be insufficient to last the course of their lives, and following the success of thalidomide survivors in Britain in reaching a new settlement, Mr Youdale, 86, sought more compensation.

Mr Youdale, who served as an airman in the Second World War, took up the fight after his daughter Nicole was born with birth defects as a result of the drug, which her mother took to combat morning sickness.

After Nicole died in 2003, at the age of 40, from the effects of thalidomide, Mr Youdale travelled to London to meet Diageo executives.

“I was able to say: ‘Look, this is actually what it’s costing these people to live today. Where do you think they’re getting the money to go on from?'” he told the Australian Broadcasting Corporation.

“The British company said: ‘Well, we have no liability for that because we did a different arrangement in Australia. We didn’t have a continuing trust operation, you inherited the money at a certain age, which was 25, and how you spent it was your responsibility but nevertheless we’ll look at the situation’.”

Thanks to Mr Youdale’s dogged persistence, a deal was finally reached last week.

“All I know is that my daughter would be very, very thrilled to think that I had done this for all the remaining people,” he said.

Thalidomide, first introduced as a sedative for pregnant woman, was originally distributed by The Distillers Company in the 1950s and caused severe birth defects, such as foreshortened limbs, in thousands of children.

Johnny Crescendo

July 28, 2010

Thanks to this month’s issue of Disability Now, I’ve just discovered Johnny Crescendo, the DisAbled campaigner and singer/songwriter whose lyrics are all about Disability Rights. I’m linking his Myspace page here, for anyone who wants to listen to some of his music. He’s truly DisAbled and I’m very inspired by him and his lyrics!

Storey Targets London 2012 Games Double

July 28, 2010

Paralympic and world cycling champion Sarah Storey sets her sights on competing in both the Olympics and Paralympics at London 2012.

Vodpod videos no longer available.

BBC SPORT | Other sport… | Disability Sport, posted with vodpod

Sense Calls For Action To Meet Needs Of Deafblind People In Wales

July 28, 2010

Urgent action is needed to plan for the needs of deafblind people, says a charity, as research predicts numbers are to “explode” in Wales.

The number of people affected by both visual and hearing impairment is predicted to increase from around 18,850 now to almost 30,000 by 2030.

The number of deafblind people has been “substantially underestimated”, said deafblind charity Sense.

It is calling for immediate action to meet their future needs.

The growth in deafblindness will largely be caused by demographic change – the increasing number of older people.

Sense chief executive Richard Brook said: “The results of this research are startling.

CASE STUDY: June Williams, Carmarthenshire

The hearing went first and that was very, very gradual. I wasn’t aware of the sight going except that I had certain problems that happened.Whilst the eyes were being examined it was discovered the macula [small area at the centre of the retina] was gradually degenerating.

It has actually degenerated altogether now so I have no central vision but a little peripheral.

I think the first thing that hit me was not being able to drive. I don’t live on a bus route so I suddenly felt a prisoner.

Also, I was a great reader – you look around my house and there’s 17 bookcases of books. I found it very hard not to read.

I recently had learned to paint and was enjoying that. I found that was hard to give up.

I also found that once I was away from my own home I felt a little helpless.

“We are all living with a ticking timebomb as the number of deafblind individuals in Wales and the UK has been substantially underestimated and is set to rise dramatically over the next 20 years.”

The Sense report, based on research from the Centre for Disability Research, suggests those over 70 will be the most affected, with numbers expected to rise by 87%.

“Local authorities and health professionals need to play their part in identifying and supporting deafblind people,” he said.

“The difficulties of deafblindness in older people are often exacerbated by a lack of understanding about the issue within parts of the medical and local authority community.”

The charity is calling for action to be taken such as better identification of deafblind people.

It also wants planning and budgeting based on the increased future demand and the provision of “appropriate and accessible” social care services.

Impact of isolation

“Too often visual and hearing impairment is dismissed as ‘part of getting old’,” said Mr Brook.

“Many people do not regard themselves as having a disability even if their vision and hearing has reduced to such an extent that it severely limits their ability to communicate, access information and get about.”

The assembly government issued guidance in October 2008 on providing services for deafblind people.

It covered issues such as the training of staff, access to support workers, assessments and identifying deafblind people.

Sense said the “impact of isolation” that deafblind people faced was “magnified by the associated health conditions which affect this group of older people”.

Previous Sense research suggested deafblind older people were nearly four times more likely to suffer a stroke.

Benefits Health Test To Face Urgent Review

July 28, 2010

Work and pensions minister Chris Grayling is conducting an urgent review into a new medical test for incapacity benefit after fresh figures showed only 6% of those tested were deemed to be totally incapable of working.

The figures, covering all new claims from October 2008 to the end of November 2009, show 39% are being tested as fit for work and a further 37% are dropping their claim before the assessment is complete. The figures are widely out of line with estimates initially made by officials from the Department for Work and Pensions.

The figures suggest that either tens of thousands of incapacity benefit claimants are not as ill as they claimed, or that something is wrong with the way the tests are being applied. So far the tests have applied only to new claimants for the employment support allowance, the successor benefit to incapacity benefit, but ministers are planning to apply the test to nearly 1.6 million people already on incapacity benefit over the next three years or so.

Speaking to the Guardian , Graylingtoday did not seize on the figures to claim there was an army of scroungers, but said instead many people had been made anxious about the figures. He did not suggest there was an army of scroungers, but said: “We do not think and nor does anybody else think there is anything wrong in principle about these tests. Almost every major group working with people suffering long-term disability or sickness wants them to have the opportunity to get back into the workplace. But we have to look at how [the tests] are working in practice.”

“There is quite a lot of anxiety around about the details of these tests, and whether we are categorising correctly. These tests need to be applied sensitively, especially in cases of depression or mental health. A lot of organisations such as the CAB and Mind have come to us to say they are concerned about how the tests are being applied.”

A new scrutiny group set up by Grayling met for the first time yesterday to advise him on claimants. Its members believe the tests are not being applied sufficiently flexibly. The scrutiny group is due to report by the end of the year with proposals for reform to medical tests.

Paul Farmer, Mind’s chief executive and a member of the scrutiny panel, welcomed the Grayling review. “Simplistic use of the basic figures around failed ESA (employment support allowance) applications only serve to fuel the negative rhetoric around benefits, which in itself can have a devastating impact on people with mental health problems who find themselves labelled as ‘benefits scroungers’ regardless of their genuine needs,” Farmer said.

Grayling defended the principle of the tests. “Nothing has been done about the 2.2m people that have been on IB (incapacity benefit). Many of them have not been seen or been in contact with the state for a very long time.

“They have been on the fringes of society being paid benefits every month but actually with no help, guidance or support at all. Our plan is to put 1.6m of these people through an independent medical assessment between 2011 and 2014. It is a huge challenge and has never been attempted before.”

The remainder – approximately 600,000 – will not be tested since they are due to reach retirement age before the test can be applied to them.

Those that are deemed fully capable of work are put straight on to jobseeker’s allowance, and those deemed potentially capable of work will be put in a higher rate form of employment support allowance.

Welfare Reform Threatens The Backbone Of Big Society

July 27, 2010

From today’s Guardian:

David Cameron‘s vision for a “big society” risks being undermined by his government’s other big idea: welfare reform.

Many people with physical and mental health problems are reliant on benefits to support them during periods of illness, but when they are well, a large proportion contribute to society by volunteering in their communities. They don’t choose to be ill, they don’t play the system by committing benefit fraud and then drive around in convertibles. In fact, this group of vulnerable people are so frightened of being destitute and homeless that they wouldn’t dream of committing any sort of fraud – they are living on the edge as it is.

So proposals to move people off incapacity benefits will not only have a dangerous impact on their health it will also, in one fell swoop, greatly reduce the size and diversity of the pool of people Cameron expects to help deliver his big society.

The medical assessments that will accompany the new regime could exacerbate people’s symptoms. Pressurising sick and disabled people back into work before they are ready or able may make their conditions worse, and cost more in the long term. It may be better to give them the time needed to fully recover, or attain a level of health that means they can sustain employment, rather than push them too soon and risk a relapse that could last much longer.

For those with mental illness, the situation is even worse. We are not talking about people who are feeling a bit down: serious illnesses such as bipolar disorder and schizophrenia are on a par with any chronic and debilitating physical illness, and the symptoms, for some, are not compatible with a nine to five job.

Many service users worry that the new assessments will be too medical, without the presence of a psychiatrist, with more questions about mobility and a rigid “yes or no” scoring system, which does not allow for fluctuating mental health symptoms.

Mental illness is not a lifestyle choice. It can ruin the chance of a full existence. Some people find medication and therapies that keep them stable but, for others, the search for stability can go on for a long time. These people will have to mention at any job interview that they may get sectioned at least once a year and spend anywhere between one and six months in hospital.

But these are the very people that the government should be trying to get more involved in the community. For example, those at a latter stage of recovery can be vital mentors to those just leaving hospital. They can share experiences about medication, lifestyle and adjustment to independent living, and can be a great link to people who, without that support, could be straight back in hospital.

And people with mental health problems can be useful in places such as community resource centres, offering support to those in and out of hospital. I know of one woman who had such a terrible mental health history that many around her predicted that she would never work again. She eventually began to volunteer at one of these centres. She proved popular with staff and clients, and went on to become employed as a full-time receptionist after two years of volunteering, gradually taking on more responsibility.

A vital part of her return to being a taxpayer was the benefits system, which was able to support her while she became strong enough to lose the benefits and earn. If six months into this journey her benefits had been cut, she may not have been able to sustain employment, as it could have been too soon in her recovery.

Cameron, when referring to big society, stated that: “It’s about holding our hands up saying we haven’t got all the answers – let’s work them out, together.” But if the government goes ahead with these shortsighted assessments as part of its welfare reforms, we will not only produce more long-term benefit claimants we will also risk losing a vital cohort of potential volunteers.

David Cameron, when referring to his idea for this big society, stated that “It’s about holding our hands up saying we haven’t got all the answers – let’s work them out, together.” But for all those people who are not engaged in society, they are going to be reliant on the luck of being picked up byhave to rely on the agencies the government wants to outsource state responsibilities to, and for the many living in isolation this can only spell disaster for their health and quality of life.

• Dawn Howley was in care from age 14 to 18. She is now involved with young people’s charity Kids Company and mental health organisation Stand To Reason.

Olivia Court

July 27, 2010

A toddler born with a rare condition that means her knees and hips dislocate every time she tries to play or even walk is now jumping for joy thanks to an amazing SECOND SKIN.

Little Olivia Court suffers from Ehlers Danlos Syndrome, a rare condition which causes extreme hypermobility, meaning her joints regularly bend in each and every direction and often dislocate.

The three-year-old’s condition was so extreme by the age of one she could not sit up or crawl and her parents were told she would never be able to walk.

But now thanks to a revolutionary lycra suit, that acts as a ‘second skin’, Olivia can run around and play with other children her age – a dream come true for the energetic toddler.

The suit literally works by holding Olivia in place and stopping the movements of her joints which lead to the painful dislocations.

The specially designed £2,500 body suit – which must be worn eight hours a day, five days a week – helps Olivia’s muscles become strong enough to keep her joints in place.

Doctors have been amazed by the results and Olivia will get a new suit each year in the hope she will develop enough strength to combat her condition herself.

Olivia’s parents had hoped their local NHS Trust would pay for the suit, but they turned down funding because they said there was a lack of medical evidence the suit actually worked.

It was paid for instead by their local community group Barwell and Earl Shilton Lions Club, who raised the money.

Olivia is now enjoying a much more normal life with parents Lena, 36, and Adrian, 41, a secuirty engineer, in Earl Shilton, Leicestershire.

Mother Lena said: ‘Before the suit Olivia would fall over constantly, her joints would dislocate and she would just topple over. It was heart-breaking.

‘She was always covered in bruises and would regularly miss nursery because she would suffer from chronic fatigue.

‘But the suit has made the world of difference, she can’t stop running around now and her hips haven’t dislocated since. She can play as a little girl should be able to.

‘The suit not only keeps her joints in place but it supports her spine and her core muscles and since wearing it, her hips haven’t dislocated once.

‘It really has given her a new lease of life, she loves wearing it because she knows it means she can play with her friends for longer.

‘A year-ago she couldn’t even stand up unaided and now she is running around everywhere. It really has changed her life.’

Olivia has one of the most extreme cases of Ehlers Danlos Syndrome, she was born without hip sockets meaning her hips were constantly dislocated.

Lena, 36, said the first she knew something was wrong, was when she noticed Olivia wasn’t crawling or walking like other babies.

She said: ‘Olivia would try to crawl and her legs would completely give way beneath her.

‘The doctor said Olivia had one of the most extreme cases of EDS she had ever seen.’

Olivia underwent two operations to realign her hips, in the hope bones would form to help keep her hips in place. But the operations failed.

Lena said: ‘Olivia had a plaster cast from her chest to her knees for eleven months and even then her hips would still dislocate.

‘After the operations did not work we were told Olivia would never learn to walk. But as parents we refused to accept this and so we went to see a specialist at Great Ormond Street Hospital.’

Olivia was put through a two-week intensive physiotherapy session to help build her muscles and teach her to walk.

Lena said: ‘It was an awful two weeks, she would scream and cry in pain and couldn’t sleep for muscle spasms and cramps but she came home with a walking frame, so it was worth it.

Now at three-year’s-old Olivia took her first steps, walking unaided for the first time in her life.

The revolutionary suit was almost Olivia’s last chance to be able to play like a normal little girl, it was recommended to Lena by surgeons.


NI Parents Of Young Adults With Disabilities Want Abuse Brothers Removed From Hospital

July 27, 2010

A group of parents of young adults with disabilities want two paedophiles to be removed from the psychiatric ward where they are being treated in Londonderry.

James and Owen-Roe McDermott from Donagh in Fermanagh voluntarily admitted themselves last week.

The pair abused children in their village for 30 years.

The parents, who met in Derry on Monday night, say they are considering a sit-in at the hospital if the brothers are not moved away.

One parent, who did not want to give her name, said her 21-year-old son had the mental age of a five-year-old.

“He has Thomas the Tank Engine posters on his wall. All he talks about is a washing machine and a tumble dryer.

“He has the mind of a child and that means he should not be there.”

One man said his daughter was being treated just a few feet away from the brothers.

The brothers were allowed to return home to the village in June after they were declared mentally unfit to stand trial.

Survivors of the abuse welcomed their move to a psychiatric unit but said it would not solve the problem in the long-term.

Between them, four McDermott brothers, from Moorlough Road in Donagh, faced 60 charges of abuse spanning five decades.

John McDermott was jailed for nine years in June for the abuse, which was described as frequent, regular and persistent.

Peter Paul McDermott took his own life during his trial on abuse charges involving two young boys.

The other two brothers, James and Owen-Roe, were given lifetime orders banning them from being with children, and a two-year treatment and supervision order placing them in the care of social services.

Sniffing Device Allows Locked In People To Communicate

July 26, 2010

This is fantastic!

A 51-year-old woman who was left paralysed and unable to communicate following a massive stroke has written for the first time in seven years, scientists say.

The Israeli patient, who was diagnosed with “locked-in syndrome”, typed an emotional email to her six children using a revolutionary device that is controlled by sniffing.

The woman was so badly brain-damaged by the stroke that she cannot move any of her limbs or even blink in response to simple questions. She wrote the letter within a few days of being taught how to use the device.

The technology, developed by scientists at the Weizmann Institute in Rehovot, Israel, is now being used by other severely disabled people to surf the internet and even control a wheelchair. One, a 63-year-old quadriplegic woman who can barely speak, wrote her first letter in 10 years with the device and has started using it to send emails.

“The most moving thing has been witnessing this technology give people a means of communication when they haven’t had it,” said Noam Sobel, a neurobiologist at the institute, who helped develop the technology.

The device works by detecting slight changes in pressure that are produced when a person opens or closes their soft palate, the tissue at the roof of the mouth that controls air flow through the nose. Many patients with serious disabilities are still able to move their palate voluntarily, and so can use the device, said Sobel.

When the sensor is connected to a computer, a person wearing the device can use sniffs alone to select letters on the screen and build up words, phrases and sentences.

One patient, a 42-year-old man who was diagnosed with locked-in syndrome after a car crash 18 years ago, used the sniff-controlled device to say he preferred it to a previous disability aid that performed a similar function by tracking his eye movement, writing that it was “more comfortable and more easy to use”.

The speed at which patients can write with the new device varies between around 20 seconds and a minute for a single letter of the alphabet. The 1997 book, The Diving Bell and the Butterfly, was written by Jean-Dominique Bauby at a rate of roughly one word every two minutes. Bauby, who became locked-in after suffering a stroke, selected letters by blinking his left eye.

In another test of the device, a 30-year-old man who was paralysed from the neck down in a car accident six years ago, used the device to steer a motorised wheelchair along a winding path 30 metres long. After one trial attempt, the patient completed the course as fast as healthy volunteers.

Sobel said he was anxious what locked-in patients might write after being unable to move or communicate for so long, but he said none wrote about wanting to end their own lives. “I was afraid that the minute we could communicate, all that might come out,” he said. “What’s important is giving the person the ability to express themselves.”

The findings are published in the latest issue of the Proceedings of the National Academy of Sciences.

England’s Blind Footballers Win Friendly Game Before World Cup

July 26, 2010

The English Blind Football team has beaten Greece 1-0 in a match ahead of a major international competition.

The friendly match took place at the Royal National College for the Blind in Hereford which is hosting the World Blind Football Championships next month.

It will feature 10 teams, including world champions Argentina.

The college is among places holding an open weekend ahead of the 2012 Olympic Games.

The open weekend sees dozens of different free sporting and cultural events around the region.

Blind football rules

  • The football contains ball bearings so it is audible
  • The goalkeeper is sighted or visually impaired
  • The four other players wear eyeshades to take account of differing degrees of eyesight
  • A guide behind the goal directs players to shoot
  • The pitch is surrounded by a rebound wall and there are no throw-ins

Photography students at the Hereford college are involved in an event based around blind football during the open weekend.

They are photographing centre visitors taking penalties while wearing eye shades. Their photos and art work will appear in an exhibition at the college during the championships.

The football tournament will be held from 14 August and will act as a direct qualifier for the Paralympics in 2012.

Simon Hall, an England defender, said he “thinks and hopes” the team can do well in the competition.

More than £14m has been spent at the college developing sports facilities. It also has opened an academy for blind players.

Family Of Jim Watts Will Keep Fighting To Clear His Name

July 26, 2010

I’m quite sad to read this. I’d like to think that severely disabled people who have some form of communication are reliable witnesses in court cases. But this case raises this issue. Any thoughts, readers?

The family of Jim Watts, the care home worker jailed for sexually abusing four seriously disabled women, has vowed carry on the fight to clear his name after the country’s most senior judge slashed his sentence from 12 and a half years to four years.

Watts, 58, whose appeal against the conviction featured in the Guardian last month, (June 2), was in his cell in Exeter prison and not at the High Court in the Strand on Friday as the Lord Chief Justice, Sir Igor Judge upheld the conviction and backed the trial judge’s handling of the case.

Watts’s barrister Sarah Munro QC argued that the four women, who are all in wheelchairs and have serious physical and mental disabilities, were not reliable witnesses and the police interviews failed in the basics of rapport building to establish whether the women understood the questions they were being asked. She also criticised the judge’s summing up, which she said gave unfair weight to the prosecution arguments.

The case rested on the testimony of a Japanese volunteer care worker who alleged she saw Watts “tickle” the breast of one of the women as he put on her bib to feed her in a crowded pub.

The Lord Chief Justice rejected Munro’s criticisms of the trial judge for allowing the jury to make up their own minds on the veracity of the women’s testimonies.

“All the features drawn to our attention by her were drawn to the attention of the jury. The summing up directed the jury concisely, carefully and clearly. We do not detect the unfairness or lack of balance for which it is criticised,” he said.

Watts’s wife, Su Bennett, an NHS physiotherapist who has worked with disabled people, is considering referring the case to the independent Criminal Cases Review Commission. She said:

“I don’t think any of the people involved in the investigation really know disabled people. When they are treated badly they change their behaviour and appear distressed. None of these alleged victims ever appeared distressed when Jim worked there. The only time they did was during the police investigation.”

“This verdict is terrifying for anybody working with disabled people who has an allegation made against them because it gives the police carte-blanche to investigate in an appalling unprofessional manner – no rapport building with the witnesses nothing to establish they knew right from wrong. It’s a sad day for British justice.”

The Innocence Project, an independent organisation that works to exonerate wrongly convicted people, has also shown interest in the case.

Jemma And Gus Brown On Channel 4 News Yesterday

July 25, 2010

Blogger, campaigner and guide dog owner Jemma Brown and her guide dog Gus were on Channel 4 news yesterday. You can watch the video of their appearance  here. I have to say they were both great!

Policeman Blinded By Raoul Moat Determined To Carry On With Life

July 23, 2010

Pc David Rathband said he would learn to use a white stick or rely on a guide dog to carry on with his life.

The 42-year-old married father of two said he was “devastated” by his injuries but that he was not going to spend too much time reflecting on what happened.

Pc Rathband was shot twice by Moat, in the face and the shoulder, as he sat in his patrol car on the outskirts of Newcastle.

He was released from Newcastle Royal Victoria Infirmary 17 days after being injured.

Initially, the officer thought he might only lose his sight in one eye but has since learned that will probably never be able to see again.

“It’s going to very difficult and I’m devastated, but I’m not going to dwell on it because if I do then, in my opinion, it will block out all of the things that I need to achieve to get to where I need to be.”

Pc Rathband said he was fortunate enough to have had his sight until now, so had memories of his wife, children and his life.

“I’m the lucky one and if I can master the art of walking, whether it be with a white stick or with a guide dog, I’ll be no different to anybody else,” he told BBC Five Live.

“I’m on the mend. I’m obviously looking forward to going home and I’ve managed to negotiate an early release from the ward sister.

“My facial injuries have all been sorted by the plastics team at the hospital and it’s just a case of allowing my jaw and face and stuff to knit together.

“I have to come back in three to four weeks to have another examination of my left eye just to see if there’s something they can salvage from that.”

Pc Rathband said he felt no bitterness towards Moat but was angry to be disabled.

“I am angry that he took my sight but I am not angry he shot me, I am not bitter towards him as an individual.”

However, he did concede thaking the next step on his career – promotion – “may be a little harder than it was”.

Pc Rathband insisted he would continue as an officer, adding: “I’m just a policeman and a person very proud to be a policeman and that’s one of the things that keeps me going. I want to get back to a job that I enjoyed doing.”

He defended Northumbria police who have been criticised for their actions while Moat was on the loose.

“I’m not party to all of the decision processes that were in place by my senior officers, but one thing I can say is that, as far as I’m concerned, on the morning that I became involved in this incident, albeit directly, my colleagues have been nothing but professional.”

He insisted the outcome of the investigation into the incident “will be the right one”.

BBC News – Gary McKinnon’s mother hopeful after Cameron’s US talks

July 23, 2010

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BBC News – No money to rebuild Blackpool special needs school

July 23, 2010

Children at a special needs school in Blackpool have been speaking of their sadness after losing out on money for a new building.

High Furlong School in Blackpool suffers from a number of problems, such as corridors not wide enough for wheelchairs to pass each other and a lack of adequate heating in some areas.

It was hoped that a new school would be built through the scrapped Building Schools for the Future programme, but pupils will now have to wait and see if any funds will be made available.

Hayley Cutts reports.

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Labour Says Special Schools Would Lose Out In Academies Plan

July 23, 2010

Children with special educational needs could lose out under government plans to allow all schools to become academies, Labour has claimed.

Shadow schools minister Vernon Coaker said provision could be damaged if special schools were also allowed to opt out of local authority control.

MPs are debating the Academies Bill which could revolutionise the way schools in England are run.

Minister Sarah Teather said all schools should have the same freedoms.

Under the academies programme, the government wants all schools to be able to become independent state-funded schools with greater freedom over their budgets, curriculum and the pay and conditions of staff.

Academy status would also mean that schools would have access to funds previously spent on their behalf by local councils on services such as those for children with special educational needs.

Labour had tabled an amendment to take away the right of special schools to become academies, but it was defeated.

Law fast-tracked

Children and Families Minister Sarah Teather said 50 special schools had expressed an interest in finding out more about the academies programme and that an advisory panel had been set up to consider the details of issues raised.

Because of the need for careful consideration of special educational needs provision, no special school would convert before 2011, she said.

The government expects the first of its new breed of academy schools to convert this September. All will be schools rated outstanding by Ofsted.

It is pushing legislation through the Commons in a week so laws can be changed in time for this to happen.

Mr Coaker said: “This bill inverts the way in which we pursued the academy programme. We established academies in areas of poor education performance, in areas of social disadvantage.

“This bill actually turns that on its head and allows outstanding schools to fast-track to academy status, allows primary schools for the first time to become academies… allows special schools to become academies, something that we think could damage the provision of education, particularly the provision with respect to special educational needs.”

He said there was no evidence that giving special schools academy status would bring improvements, so the government was taking a “leap in the dark”.

Former Labour minister Barry Gardiner said: “The centre will not be able to hold here. What we will lose is precisely the ability of a central provision through the local authority to co-ordinate the needs of all children with special needs.”

Deny freedoms

Ms Teather said: “If we believe it is a good thing for schools to have freedoms it does not seem obvious to me why we should deny these freedoms to others.

“We think special schools should have access to freedoms we are offering to others.

“We are treating special schools in a different way. It is a longer process. We are not expecting any to convert before 2011. The secretary of state has set up an advisory group to try to work through the details of some of the issues raised.”

She said giving special schools freedoms would allow them to make changes suitable for pupils and their parents.

Amendments added to the Academies Bill by the government include one which says pupils with special educational needs have the same rights as other pupils. Another says if an academy is named on a child’s statement of special educational needs as the best place to send them, they should get a place there.

Ms Teather added that this was an improvement on the current situation.

Admissions

Dozens of amendments have been tabled to the Academies Bill. Key issues being raised include concerns that faith schools might be given extra freedoms under the legislation to teach Creationism – denied by the government – and increase segregation by changing their admissions policies.

Others include concerns about the fairness of admissions policies and those on excluding pupils.

Labour’s Vernon Coaker said he was concerned that the legislation could allow schools to “select covertly” and “exclude more easily”.

Schools becoming academies will have to comply with the School Admission Code, which sets out guidelines designed to ensure fairness in how school places are allocated, the government has said.

Both Labour and a group of Conservatives raised issues about grammar schools – from opposite sides of the debate.

Labour claims the legislation will open the way for more selection because grammar school which become academies might expand.

But senior Tory MPs, led by Graham Brady, are concerned that grammar schools, if they choose to become academies could later change their status to become non-selective without consulting parents.

Free Schools And Inclusion

July 22, 2010

Free schools, which are apparently going to give parents power over their children’s education, are back in the news this week. They could, apparently, improve education for all children.

This got me thinking. I’ve written before about the struggles that my friends and I and our parents faced when we were trying to get into mainstream schools. Part of me wishes that our parents could have had the choice to set up free schools to teach us at. Who knows, our lives might have been much easier if they had been able to do something like this.

So, I wonder if any parents of DisAbled children today who want inclusion will set up a free school, with a mainstream curriculum, to teach their children at if their local mainstream school rejects them? What are your thoughts on this, readers? Are you the parent of a DisAbled child of school age? Have you had a struggle to get them included, and has the thought of starting up a free school crossed your mind? Are you, like me, a DisAbled adult who wishes this choice had been available to your parents? Parents of DisAbled adults- would you, given the choice, have set up a free school to teach your child at? Are you a DisAbled child in a special school today who wants to be at mainstream school, and would you like to be at a ‘free’ mainstream school?

Finally, do you think a free school started by parents of non-disabled children would be any more or less likely to include  DisAbled children than a state mainstream school, or would this make no difference?

Please leave your thoughts in the comments below, or, if you prefer, come over to Facebook and ‘like’ this blog’s brand new page, where this is the first topic of discussion.

Keep Vuvuzelas Out Of Grounds Say Hearing Loss Charities

July 21, 2010

To some, they were the definitive sound of the World Cup, a celebration of African culture and must-have momento of this summer’s football festival; to others, they were just an irritating din. But now campaigners for hard-of-hearing people are urging football clubs in Britain to keep their stadiums free of the drone of the dreaded vuvuzelas when the new season kicks off next month.

They are warning that the blaring, horn-like sound from the instruments is so loud that fans of the nation’s favourite sport could suffer permanent hearing loss if fellow spectators at a match try to recreate the atmosphere from South Africa.

Vivienne Michael, chief executive of the charity Deafness Research UK, warned: “These tuneless trumpets can emit sounds in excess of 130 decibels, equivalent to a jumbo jet taking off, and as the national charity concerned with deafness research and related issues, Deafness Research UK would like to see an urgent ban on these instruments.”

Fans in close proximity to vuvuzelas being blown risk suffering tinnitus, a painful ringing in the ears, or long-term loss of hearing, Michael added. Extended exposure to noise at 85 decibels is enough to irretrievably diminish hearing, she added.

So far, eight of England’s 20 Premier League clubs have banned them, including, Arsenal, Liverpool and West Ham. But Celtic and other clubs appear willing to let fans use them.

Another hearing charity, the RNID, wants fans to protect their own and others’ hearing by not taking them into grounds. “A vuvuzela just behind you will hit you with more than 125 decibels of sound – much louder than a road drill – which will really hurt your ears,” said Crystal Rolfe, its audiology specialist.

A Premier League spokesman said: “Nothing in our rules specifically prohibits musical instruments from being brought into grounds, as such matters are dealt with at club level. It will be down to stadium managers, in consultation with supporter groups, to determine what is appropriate.”

Echo: A Comic Character Who Can’t Hear

July 21, 2010

Deaf characters are often marginalised in literature. Echo the deaf superhero is coming to the rescue as the creators of comics strive for realism in their portrayal of deaf characters.

“With any form of portrayal including the deaf in comics, we tend to see things very much from a hearing person’s point of view,” said Paul Dakin, a GP trainer from North London who studies deaf characters in literature, at a recent conference on comics and medicine. “Most of the people who write or who are artists are hearing, and as a result, traditionally there have been other reasons to portray deaf people. So, for example, they are plot devices; they are catalysts; they are means of reflecting particular aspects or features of a hearing character; they move the plot along, but they’re not developed in their own right.”

In Hergé’s Tintin, for example, Professor Calculus is hard of hearing. His disability is used as a comic device to introduce trivial and amusing misunderstandings into the story, rather than explored in its own right. Similarly, Hope Hibbert, a deaf girl who first appeared in The Sensational Spider-Man, issue 18, uses her ability to read lips from security camera footage to give Spider-Man the information he needs to save the day.

“However, over the last 20 years an increasing number of deaf characters have started to emerge within mainstream comics,” said Dakin. “That’s given rise to the emergence of Echo. She is a major deaf character in the Marvel canon.”

Echo (aka Maya Lopez) is a superhero like no other. First appearing in Daredevil issue 9 in 1999, she is a rare deaf character with a complex emotional back story. Born deaf to a Cheyenne father and a Hispanic mother, she has the power to perfectly imitate anything she sees, including a rival’s fighting style.

“The character was going to debut as an antagonist in the story, but also as a love interest for Daredevil,” Echo’s creator and artist David Mack told me by email. “With Daredevil being blind, and constantly piecing his world together via his other senses, I felt he would be able to relate to Maya (aka Echo) who was deaf and grew up visually piecing the information of her world together to make sense of the mysterious audible world that she was not a part of.”

As research for the character, Mack read autobiographies of people who grew up deaf. “That was an incredible insight to me,” he said. “I read a book where a boy was told that the rain makes a noise, and that lightning has an audible counterpart in thunder. So then he wondered what sound the sunshine made … This kind of first person perspective really let me think from a different point of view.”

Echo uses both American Sign Language (ASL) and a Native American system developed for communication between tribes speaking different languages. The sign systems appear throughout the comic, both when Echo is signing and as background art.

Though Echo provides perhaps the most complete example of sign language in comics, it is not the first. On the front cover of DC’s Supergirl, issue 65, characters sign the comic’s title. Spider-Man himself uses ASL in Sensational Spider-Man, issue 31 (and every time he shoots webs he signs “I love you”; his hand position blending the signs for I, L and Y in ASL).

Some aspects of Echo’s character are arguably not representative of the deaf community. “Often the assumption is made that most deaf people can read lips well, whereas in fact most of them can’t,” said Dakin.

“Lip-reading grew organically out of the character and the skills she developed based on her childhood,” said Mack. “Maya grew up deciphering details from visual cues. She learned to make sense of body language, facial expressions, lip movements, piano playing, in such detail that she developed a pattern recognition in which she can decipher the pattern in just about anything visual.”

She was a “walking Rosetta Stone”, said Mack, able to decipher and repeat any movement as a physical language skill. “Aside from being able to physically absorb a system of complex movement such as dance or martial arts, she’d be a great code-breaker or glyph decipherer.”

Tyron Woolfe, deputy director for children and youth at the National Deaf Children’s Society, pointed out that no deaf character can represent the entire deaf community: “It is difficult to realistically encompass the whole spectrum of deafness in a story as it varies widely in terms of levels of deafness and communication methods.”

But, he added, “For some deaf kids, having deafness as the central theme is inspiring.”

On her influential blog Deaf Characters in Adolescent Literature, Sharon Pajka-West of Gaudaullet University for the deaf in Washington DC, writes: “I don’t think I need to go on and on about [Echo] … because I always do and you know I love this character.”

Mack said that when he wrote the characters Echo (who is deaf) and Daredevil (who is blind), he wanted to focus on what they could do rather than what society sees as their disability. “They are able to take that perceived deficit and turn it into a unique point of view that can become their asset.”

“With the right support, deaf children can do anything any other child can do,” said Woolfe. “Deaf children and young people can achieve at school, play musical instruments, write poetry or play football. We would like to see more of this creativity and determination in deaf characters, and more deaf characters portrayed in mainstream literature, with deafness not being the leading theme.”

He said the National Deaf Children’s Society would also like to see how deaf characters overcome their deafness, rather than have negative storylines in relation to deafness. “It is important that this overcoming is not taken to mean being cured, but is equated with managing one’s deafness,” he added.

Outside the deaf community, on the standard comic blog sites, Echo has had a very good reception, said Dakin. “Hearing readers are very supportive of Echo; they really like her.”

Look out for Echo in Daredevil comics (volume 2, issues 51-55) and her own upcoming series, both published by Marvel Comics.

And you’ll be seeing more of Echo in the near future. “I’ve been asked to write another Echo series and I’d love to,” said Mack.

Do Disabled People Fare Better In The Open Labour Market?

July 21, 2010

After working at a Remploy sheltered factory for 15 years, Iain Muir now earns a market wage as a forklift driver at an East Kilbride warehouse. His profound deafness presents challenges, but nothing that cannot be overcome with support, understanding and a little sign language.

Muir, 50, is a full and valued member of staff at the Furnishing Service, a company supplying furniture and fittings to councils and housing associations across Britain. His experience shows that, given the opportunity, disabled people can cope perfectly well in “open” employment.

“I’m enjoying the job,” Muir says. “My new colleagues are fantastic – they’re really friendly and helpful, and lots of them are keen to learn to sign.”

Not all former Remploy workers are so fortunate. Many of those who lost their jobs when the government agency shut 29 factories in 2008 have not worked again. The bitter row over the closure programme rumbles on, polarising views about the future of sheltered or protected workplaces, and the viability of expecting disabled people to compete in the open labour market.

An attempt will tomorrow be made to find common ground in the argument. At a conference in London, disability umbrella organisation Radar will present a discussion paper seeking to achieve consensus around what disabled people want from employment, and which models of employment are most likely to achieve it.

The paper, funded by Remploy but drawn up after consultation with a broad range of interest groups, including trade union leaders opposed to sheltered factory closures, sets out 10 propositions endorsed by a panel of almost 40 disabled individuals chosen from Radar affiliates.

These propositions start with a declaration that work “contributing to the economy” should always pay at least the minimum wage. Some sheltered jobs do not do so, often on the pretext that the role is for a trainee or intern. One worker quoted in the paper says: “I worked on a mobile gardening unit for 13 years. I didn’t get paid. It was called work experience.”

Perhaps the most contentious of the propositions asserts that “the continued existence of separate workplaces gets in the way of tackling bullying, harassment and discrimination”. Inclusion of disabled people in mainstream workplaces is, it argues, the best way to counter stereotyping of disability through the promotion and enforcement of legal rights and good practice. Two of the panellists dissented from this.

There was no dissent, however, from a proposition stating: “In general, supported employment in mainstream workplaces better promotes social inclusion than specific, separate workplaces for disabled people.” One interviewee quoted in the paper said: “Social inclusion happens when an individual is exposed to wider society, rather than simply being part of a small and separate community.”

Liz Sayce, Radar chief executive and author of the paper, says that disabled people want decent pay, the status of a job, career security and development opportunities, social interaction and the feeling that they are respected and free from discrimination.

“We conclude that in general – though not for every individual – support in open employment or self-employment hits more of the key factors than do other options,” Sayce says. “In our society, ‘real’ jobs are perceived as offering greater status than ‘special jobs’.”

This may be so, but are “real” jobs going to be available in the economic climate of the next few years? Only one in two disabled people of working age had a job before the recession kicked in; proportionally large numbers of those who are employed have jobs in the public services, which are about to shed hundreds of thousands of posts.

Peter Purton, disability policy officer at the TUC, welcomes the Radar initiative. But he warns that it would be “dangerous” to be seen to be contemplating closure of further sheltered factories – Remploy alone has more than 50 still open, employing 3,000 people – until the economy picks up.

“The reality is that [sheltered workplaces] provide decent, paid work for some thousands of disabled people who would not get employment anywhere else,” Purton says. “It’s better that they should be working, admittedly in subsidised jobs, than drawing disability benefits.”

Even if the economic picture were to improve, Purton adds, disability discrimination in the labour market remains too big a problem to dispense with sheltered provision. He does not agree “for one minute” with the proposition that such workplaces get in the way of tackling the issue.

“We are all in favour of open employment for disabled people – if there was no discrimination,” Purton says. “But there is discrimination and, therefore, people who lose their [sheltered] jobs are not going to get new jobs on the open market.”

Sayce admits that, if history repeats itself, disabled people who lose their jobs in the downturn may take years to get back into work, if they ever do. But she implores policymakers to look at the big picture, including benefit costs. “If more disabled people are employed and progress in their careers, their social and economic contributions increase.”

Paddy Power’s Blind Footballers Ruled Onside By ASA

July 21, 2010

I don’t agree with anything writtten in this article. I’m upset to read about this result. Comments, as always, are very welcome below.

With a team of blind footballers who kick a cat into a tree, it seemed to have something to offend everybody. But one of the most complained-about adverts of all time was cleared today by the advertising watchdog.

The Advertising Standards Authority received 1,089 complaints – the fifth-highest total in its history – about the campaign for the bookmaker Paddy Power, which launched ahead of the World Cup. Viewers objected that it was offensive to blind people and might encourage cruelty to animals.

Paddy Power said that the ad depicted a “normal event but featured an action that was so unlikely that it was absurd and was a ‘worst nightmare’ type scenario”, and that at the end of the ad the cat was “clearly and deliberately shown to be unharmed”.

Clearcast, the body that vets TV items before their broadcast, said that the ad set up a “jokey, highly unrealistic situation”.

Paddy Power also ensured the TV ad featured some genuine sight-impaired footballers – several of whom have represented England, including the team captain, Ajmal Ahmed – rather than only actors.

However, this would not be known to viewers, which may go some way to explaining the significant number of complaints the ad regulator has received.

The ASA said that the ad was unlikely to be interpreted by most viewers as malicious or to imply that blind people were likely to cause harm to animals while playing football.

“We therefore concluded that the ad was unlikely to be seen as humiliating, stigmatising or undermining to blind people and was unlikely to cause serious or widespread offence,” said the ASA.

In terms of the cruelty to animals the ASA said that the situation was “surreal and improbable” and was “unlikely to cause serious or widespread offence”.

Cameron And Obama Discuss Gary McKinnon Case

July 21, 2010

David Cameron discussed the case of computer hacker Gary McKinnon during his talks with the US president.

At a press conference in Washington, the prime minister said Mr McKinnon was accused of a “significant crime” but hoped for a “way through”.

Barack Obama said presidents did not get involved in extradition matters but he hoped for an appropriate solution.

Glasgow-born Mr McKinnon, who has Asperger’s syndrome, is accused of hacking US military computer systems.

Mr McKinnon, of Wood Green, North London, says he was seeking evidence of UFOs.

Both Mr Cameron and Deputy Prime Minister Nick Clegg have publicly condemned plans to extradite Mr McKinnon to the US – where he faces up to 60 years in jail.

Last year Mr Cameron said that if Mr McKinnon, 43, had questions to answer there was “a clear argument to be made that he should answer them in a British court”.

‘Significant crime’

At a White House press conference on Tuesday alongside President Obama, Mr Cameron said of the case: “It is something that we discussed in our meeting.

“Clearly there is a discussion going on between the British and the Americans about this but I don’t want to prejudice those discussions.

“We completely understand that Gary McKinnon stands accused of a very important and significant crime in terms of hacking into vital databases. Nobody denies that is an important crime that has to be considered.

“I have had conversations with the US ambassador as well as raising it today with the president about this issue, and I hope a way through can be found.”

President Obama said he had spoken with Mr Cameron about the “increasing challenge” faced by the internet and the need for greater co-operation on cyber security.

He said: “One of the traditions we have is that the President doesn’t get involved in decisions around prosecutions, extradition matters.

“So what I expect is my team will follow the law, but they will also co-ordinate closely with what we have just stated is an ally that is unparalleled in terms of our co-operative relationship.

“I trust that this will get resolved in a way that underscores the seriousness of the issue, but also underscores the fact that we work together, we can find an appropriate solution.”

American authorities allege that between February 2001 and March 2002, Mr McKinnon hacked into dozens of US army, navy, air force, and Department of Defense computers, as well as 16 Nasa computers.

They also say Mr McKinnon altered and deleted files at a US naval air station not long after the terrorist attacks on 11 September 2001.

In May, Home Secretary Theresa May agreed to an adjournment to delay a High Court decision on whether his extradition could go ahead. The government will review the case.

How To Climb World Famous Landmarks (And Deal With Challenges)

July 20, 2010

My good friend and fellow blogger Amit Sodha, of The Power Of Choice fame, wrote a post yesterday that I really like. It’s called ‘How To Climb The Lions At Trafalgar Square’.

In it, he shows pictures of himself at various stages of trying to climb these famous landmarks. This, he says, was harder than it looked. He realised that his friend, who was with him, wouldn’t be able to help. Besides, he was determined to find a way to do it himself and, after bruising his knees, (and battering his ego) he finally succeeded. It was, he says, a tough journey, and there were moments he wanted to forget- but, he says ‘Once you’re at the top you can help others up and just sit back and enjoy the great view.’

This, I thought, is just like dealing with the constant challenge that I, and many of my readers, have- life with a DisAbility or a DisAbled child. At first it looks hard, even impossible, and you can’t be bothered. But soon you realise that you’ll have to find a way to do it yourself. Along the way you’ll all bruise your hearts and minds when you realise that certain things will be impossible, and that some people, unfortunately, will not accept you or your child for who you/they are. It will be a very tough journey, and there will be moments that you will all want to forget- but, hopefully, there will come a day when you’ll be sitting at the top of the mountain, watching others have the experiences you left behind, offering valuable advice and telling them how much fun you had along the way.

Stop Stonewalling Deaf Jurors, Says Cathy Hefferman

July 20, 2010

When I received a jury summons a few years ago, I opened it up excitedly, conjuring up scenarios casting myself as a female version of Henry Fonda in 12 Angry Men, heroically leading my jury through society’s murky prejudices to deliver a landmark decision and liberating an innocent in the process. (I had a rather romantic notion of jury service back then.)

But something stopped me in my tracks. I saw that deaf people were included among “incapable persons” under the list of ineligible people. I was stunned. I’d just graduated from university and yet here I was, considered by the Irish court system as “unfit to serve on a jury”. What’s more, I was expected to meekly sign this summons and return it – in other words, agree to their exemption.

Indignation replaced shock and I wrote an angry letter to the courts service refusing to sign their document. Their reply told me they couldn’t change the wording but that they’d agree to “let me off”. I bristled and railed that this wasn’t the point – but I’d a new job coming up and there were all those new graduate dilemmas to attend to so I let it go.

But when Joan Clarke received her summons in Galway a few years later in 2006, she didn’t let it go. She got in touch with the Galway circuit court to say she wanted to do her civic duty. The court arranged for a sign-language interpreter and prepared to include her until they were told by the country registrar that no deaf person could serve.

Clarke contacted the Free Legal Advice Centre in Ireland and together they started a process that culminated in Mr Justice O’Keeffe quashing the outdated ban on deaf people serving as jurors. This landmark decision was, however, blighted when the same judge said that the presence of a “13th person in the jury room” would breach the confidentiality of jury deliberations, sounding the death knell for deaf jurors who would need interpreters in order to partake in deliberations.

The US has had deaf jurors for two decades after the Americans with Disabilities Act 1990, said that no one with a disability should be excluded from or discriminated against by a public entity, which was taken to include the courts. Canada also allows for deaf jurors and while it hasn’t yet been acted upon, a law reform commission in New South Wales, Australia recommended that their laws should be changed to allow deaf people act as jurors. In 2005, the first deaf person to be empanelled on a jury in New Zealand after it repealed its juries act was promptly made the foreman.

However, here in the UK, Jeff McWhinney hit a brick wall similar to that Clarke met when he challenged the ban on deaf jurors in the R v A Juror case over 10 years ago. McWhinney and his lawyer, Douglas Silas, demolished two of three obstacles: that relating to deaf people’s capacity and the idea that deaf people would not be able to access the exact nature of deliberations via an interpreter – ie, they would be lost in translation. Silas was named lawyer of the Week by the Times at the end of 1999 for his performance in the case.

But when it came to the issue of the 13th person, they were stonewalled. While acknowledging that deaf people in the US had taken part in juries with an interpreter, Ms Justice Anwyl still held that she was bound by the common law rule about “strangers” in the jury room.

The idea so sacrosanct to British and Irish law of 12 people alone in a jury room was, Michael Farrell – Clarke’s solicitor – argues, originally devised to prevent police or court officials from entering the jury room. He says this rule was never made with interpreters in mind.

Is an interpreter a “13th” person in the room? When I phone the bank using a system which relays between text and voice phones, the relay operator is not considered to be a third party and the bank cannot refuse my call on that basis. If they did so, it could be considered discrimination. So why is the court allowed to deem an interpreter as a 13th person if the bank can’t turn down a relay call?

And on the issue of privacy, are courts right to be concerned that an interpreter privy to jury deliberations could go on to spill the beans? Confidentiality is as integral to an interpreter’s job as the hippocratic oath is to the medical profession. From an early stage in their training, sign-language interpreters have the importance of confidentiality drilled into them time and again, which leaves them with an almost poe-faced attitude to the issue. Anyone hoping to use an interpreter as a source of information should think again – yes, I’ve tried. So this line of argument doesn’t really stand up.

And there is also the question of representation. The jury system and the right to be tried by 12 peers has become integral to British and Irish law. For it to work, it needs to prioritise inclusivity. So if that same pillar of law is used to eliminate deaf people, themselves subject to the same trial by jury, what does it say about the legal system as a whole?

Voice Technology ‘Could Help Detect Autism’

July 20, 2010

Young children with autism can be identified by listening to the noises they make, say US scientists.

Research suggests the babbling of infants with autism differs from that of children without it. The differences were spotted with 86% accuracy using automated vocal analysis technology.

Vocal characteristics are not currently used for diagnosing autism, even though the link has been suggested before.

The study is in the journal Proceedings of the National Academy of Sciences.

Autism is the name given to a group, or “spectrum”, of lifelong developmental conditions characterised by an inability to communicate with or relate to others, a lack of social skills, obsessional traits, and repetitive behaviour.

An estimated 500,000 people in the UK are believed to be affected by autism.

‘Child utterances’

The US scientists analysed nearly 1,500 day-long vocal soundtracks from battery-powered recorders attached to the clothing of 232 children aged between 10 months and 4 years.

In total more than three million individual child utterances were used in the research, the study notes.

The study focused on 12 specific sound parameters associated with vocal development.

The most important were those involving “syllabification” – the ability of children to produce well-formed syllables with rapid movements of the jaw and tongue.

Experts believe these sounds form the foundation of words.

In autistic children up to four years old, there was a mismatch between the expected parameter values and age.

Professor Steven Warren, an expert in autism spectrum disorders at the University of Kansas, US, who took part in the study, said: “This technology could help paediatricians screen children for ASD (autism spectrum disorder) to determine if a referral to a specialist for a full diagnosis is required and get those children into earlier and more effective treatments.”

The new system, called Lena (Language Environment Analysis) could make a big difference to the screening, assessment and treatment of autism, say researchers.

Speech patterns

They point out that since the analysis is based on sound patterns rather than words, it could be used to screen speakers of any language for signs of autism.

“The physics of human speech are the same in all people as far as we know,” said Prof Warren.

Dr Gina Gomez de la Cuesta, action research leader at The National Autistic Society, said: “Any tools which could help to identify speech and language difficulties at a younger age have the potential to help families, when used with professional guidance.

“However, they are no substitute for proper assessment by experienced and well-trained professionals.”

Dr de la Cuesta added: “The diagnosis of autism is based on a range of behavioural features, not just language development.

“The social aspects of communication must also be considered, and it should be remembered that every child is different and develops at their own pace.”

Tony Nicklinson

July 19, 2010

A man with “locked-in syndrome” has begun legal action, asking the director of public prosecutions to clarify the law on so-called mercy killing.

Tony Nicklinson, 56, wants his wife to be allowed to help him die without the risk of being prosecuted for murder.

Mr Nicklinson, of Chippenham, Wiltshire, communicates by blinking or nodding his head at letters on a board.

His lawyers say he is “fed up with life” and does not wish to spend the next 20 years in this condition.

According to his legal team, his only lawful means of ending his life is by starvation – refusing food and liquids. His wife Jane says she is prepared to inject him with a lethal dose of drugs, but this would leave her liable to be charged with murder.

Lawyers for the family have issued legal proceedings asking the DPP to clarify whether he would authorise proceedings against Mrs Nicklinson if she were to end her husband’s life.

If this was the case then the lawyers would argue that the current murder law infringes Mr Nicklinson’s rights to respect for his private life under article 8 of the European Convention on Human Rights.

Jane Nicklinson said her husband had been full of energy and life before he had a stroke in 2005. She said he had thought long and hard about his decision and it was his settled wish to die.

“He wants to be able to take his own life at a time that he chooses,” she told the BBC.

Jane Nicklinson: “He has no quality of life at all”

“He just wants the same rights as everyone else. I mean, you or I can go out and commit suicide. He can’t. That right was taken away from him the day he had his stroke.”

In a witness statement, Mr Nicklinson said: “I am a 56-year-old man who suffered a catastrophic stroke in June 2005 whilst on a business trip to Athens, Greece.

“It left me paralysed below the neck and unable to speak. I need help in almost every aspect of my life.

“I cannot scratch if I itch. I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won’t grow out of it, unlike a baby.

“I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers.

“I am fed up with my life and don’t want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life?

“No, I am not. If I had my time again, and knew then what I know now, I would have not called the ambulance but let nature take its course.”

Guidance

In February the DPP issued guidance covering England, Wales and Northern Ireland regarding assisted suicide.

LOCKED-IN SYNDROME

  • Condition in which patient is mute and totally paralysed, except for eye movements, but remains conscious
  • Usually results from massive haemorrhage or other damage, affecting upper part of brain stem, which destroys almost all motor function, but leaves the higher mental functions intact

Whilst aiding a suicide remains an offence, the guidelines set out factors which might mitigate against prosecution.

They include circumstances where the victim had a clear and settled intention to die, and those helping them were wholly motivated by compassion.

But the guidance does not extend to so-called mercy killing or euthanasia. Even if it was with consent it would lead to charges of murder or manslaughter in England, Wales and Northern Ireland and homicide in Scotland.

Such cases end up before a jury. In January Kay Gilderdale was cleared of attempted murder after she admitted helping her disabled daughter to die. In that case her daughter Lynn had attempted suicide.

BBC News – High hopes: Paraplegic pilot plans epic flight

July 19, 2010

A paraplegic pilot is preparing for a solo microlight journey from England to Australia.

Dave Sykes wants to raise funds for the Yorkshire Air Ambulance.

The 42-year-old suffered a broken back when his motorbike was involved in a road crash in 1993.

He has compared flying to ”going on a motorbike in the sky” which makes him feel ”free”.

Vodpod videos no longer available.

BBC News – High hopes: Paraplegic pilot plans e…, posted with vodpod

DLA Benefit Fraudster Sentenced

July 19, 2010

It’s these few who make the many of us who are telling the truth about needing DLA suffer.

A man was filmed at greyhound race, while still claiming disability living allowance after his condition eased.

Derek Davy, 67, of Hafodyrynys, near Newbridge, Caerphilly county, admitted receiving more than £3,700 since 2006.

Newport Crown Court heard that the Department for Work and Pensions (DWP) investigated Davy and secretly filmed him at the greyhound event in Coventry.

Davy was sentenced on Monday and given a conditional discharge for two years. He must pay £100 costs.

The court was told he had claimed disability living allowance since 1998, saying he could not walk any distance without experiencing pain.

He also could not stand up for long periods and used a walking stick.

But his condition had eased, the court heard, and he had pleaded guilty at a previous hearing to failing to notify the DWP of a change in his circumstances.

Timothy Evans, prosecuting, said the DWP investigated Davy in 2006 following information from members of the public and “it was plain the defendant wasn’t as disabled as he was originally claiming”.

The DWP was told that Davy and his wife, who has since died, appeared to be managing a racing kennels, said Mr Evans.

“In video footage, Mr Davy was seen carrying a bucket after mucking out the dogs and carrying cumbersome bags out of the back of his car,” said Mr Evans.

“He was seen at a racing greyhound event in Coventry where he did not appear to be suffering from any kind of discomfort.”

Mr Evans said the defendant was interviewed by the DWP in 2007 and admitted he did not take painkillers every day.

He also said he had been involved in greyhounds for a long time, but as a hobby.

‘Serious matter’

Defending, David Elias, said Davy was taking the same medication he had always taken and there had been side effects.

He said Davy’s claim had not been fraudulent from the outset and he had pleaded guilty at the first opportunity.

“At the time of the indictment he had some good days and some bad days which wasn’t the position he was in initially,” he said.

He added: “It [greyhound racing] was not a business, it was a hobby. He made no money out of it.”

Judge Philip Richards said the case was a “serious matter” because Davy had “dishonestly obtained public money”.

Davy was conditionally discharged for two years and ordered to pay £100 costs. He has also been paying the DWP the money back.

The DWP said after the case that Davy was paying back almost £24,000 in overpayments in disability living allowance made since 1998, including the £3,700.

DWP spokesperson Mike Davies said: “Clearly, theft against the Department for Work and Pensions is a criminal offence and we will continue to act on information provided by the public, as in this case, to root out theft of public funds.”

Muslim Bus Drivers Refuse To Let Guide Dogs On Board

July 19, 2010

This is the kind of thing that makes me ashamed to be a Muslim. It’s completely over the top.

Blind passengers are being ordered off buses or refused taxi rides because Muslim drivers or passengers object to their ‘unclean’ guide dogs.

One pensioner, a cancer sufferer, told how had twice been confronted by drivers and asked to get off the bus because of his guide dog, and had also faced hostility at a hospital and in a supermarket over the animal.

The problem to carry guide dogs on religious grounds has become so widespread that the matter was raised in the House of Lords last week, prompting transport minister Norman Baker to warn that a religious objection was not a reason to eject a passenger with a well-behaved guide dog.

While drivers can use their discretion to refuse to carry non-disabled passengers with dogs, they are compelled to accept guide dogs under disability discrimination law.

Yesterday both the Guide Dogs for the Blind Association and the National Federation of the Blind confirmed the problem was common, and, according to the latter organisation was ‘getting worse’.

The tension stems from a strand of Islamic teaching which warns against contact with dogs because the animal’s saliva was considered to be impure, the Muslim Council of Britain said.

It urged Muslims to show tolerance and common sense over the issue.

‘We need to be flexible on this,’ a spokesman said.  ‘Muslim drivers should have no hesitation in allowing guide dogs into their bus or car.

‘If a dog does lick you, it’s not the end of the world. Just go home and wash yourself.’

George Herridge, 73, a retired hospital maintenance manager, told the Daily Mail he was ‘stunned’ to be twice asked by bus drivers to leave their vehicles because of his guide dog Andy, a black Labrador.

Mr Herridge, who lives with wife Janet, 69, in Tilehurst, Reading, said that on the first occasion two years ago, he got off at the request of a Muslim driver because some Muslim children on board were ‘screaming’ because of the dog.

He found himself in a similar scenario in May last year, when a Muslim woman and her children became ‘hysterical’. Mr Herridge this time refused the driver’s request to alight.

He complained to the bus company which launched an investigation. It later informed him the matter had been dealt with ‘internally’.

Jill Allen-King, spokesman for the NFB, said she had been repeatedly left on the kerb by Muslim taxi drivers who refused to take her dog.

One cab driver told her he would have to ‘go home now and wash myself’ when she tried to enter his car with her dog.

Mr Baker yesterday warned bus and cab companies that, while there were within their rights to ask a passenger to leave if the dog was causing a nuisance, it was ‘much more questionable to be asked to remove a dog for religious reasons’.

He added: ‘One person’s freedom is someone else’s restriction.’

In 2006, Muslim minicab driver Abdul Rasheed Majekodumni was fined £200 and ordered to pay £1,200 costs by magistrates in Marylebone, central London, after being prosecuted for failing to comply with the Disability Discrimination Act when he refused to take a blind passenger because her guide dog was ‘unclean’.

Jemma And Gus Brown Campaign For Tougher Laws For Protection Of Guide Dogs

July 19, 2010

A BLIND Southampton student is calling for tougher laws after her guide dog was attacked twice in eight days by dogs off their leads.

The attacks have shaken the confidence of Jemma Brown, who is registered blind, and left her guide dog Gus nervous around other dogs.

The 21-year-old is angry that owners are not taking responsibility for their dogs and is urging council bosses to take action before someone is seriously hurt.

The unprovoked attacks on her dog happened while they were walking through the city centre, the first in the High Street, which saw a boxer dog pin Gus to the ground by his throat.

Four-year-old Gus was left concussed and unable to work, leaving Jemma stranded until she was able to find help.

A survey carried out by the Guide Dogs for the Blind Association found the number of attacks on guide dogs is increasing, with three attacked every month in the UK.

Having faced the trauma of three such attacks in less than a year, Jemma is desperate for Southampton City Council to introduce a by-law that would prohibit dogs from being off their leads in the city centre.

Luckily for Jemma brave Gus has recovered and is backing working as her guide, but for many other dogs the trauma leaves them so nervous that they have to retire.

Jemma said: “Gus has changed my life, giving me so much confidence and independence, so I want to protect him. Physically he was not badly injured but psychologically he has suffered a lot.

“Having this law is a simple measure, yet it would mean so much to guide dog owners who would no longer need to fear a sudden unprovoked attack.

“People need to be aware that these are working dogs and we rely on them. Something needs to be done because next time it could be a child who is attacked.”

Supporting Jemma is the Guide Dogs for the Blind Association, which pays £50,000 to maintain one guide dog during its lifetime.

Tim Stafford, from the Southampton Guide Dog team, said: “When a guide dog is attacked it is effectively an attack on the owner which has a serious impact on them both.

“An attack on a guide dog has a huge financial cost to the charity, as well as the emotional burden for the owner, who could lose their dog and forced to retrain with another because some dogs never recover and have to retire.”

A spokesman from Southampton City Council said they were looking at measures to crackdown on irresponsible owners of dogs.

He added: “We are aware of the problem and we are working to tighten laws regarding dogs on leads in certain areas of the city and we hope to implement these within the next 18 months.”

Richard Rudd’s Parents Speak Of Emotional Turmoil

July 19, 2010

The doctor leant towards his paralysed and comatose patient and asked a question that was literally a matter of life and death.

“Richard,” he said calmly. “Do you want us to continue with your treatment? If you do, move your eyes to the left. If you don’t, move them to the right.”

After a few seconds of almost unbearable suspense, Richard Rudd’s eyes shifted to the left.

He could hear. He could understand. He could communicate. He didn’t want to die.

Shortly before his motorbike accident Richard had told his parents that he would not want to be kept alive if he was ever left on a life-support machine.

They had complied with his wishes, giving doctors permission to end his treatment. Now Richard had found a way of telling the doctors that he wanted to live after all.

Richard’s mother Christine Walker, 60, admits that she has “mixed feelings” about her son’s “awakening”.

“Part of me was elated, of course, that there was a sign of life. But I also felt sadness,” she said at her home in Kidderminster, Worcestershire. “I know I have lost the Richard I had. He will never be the same again.

“I have to get used to the new Richard. But he will never have much of a life and that’s hard to take. I don’t know how aware he is and how happy he will not be walking, talking or anything else.

“You wouldn’t be human if you didn’t wonder if he would have been better off dead.”

Richard’s eye movements have implications that go much further than their dramatic impact on his family and friends.

His case has provoked a debate about terminally ill patients who state in “living wills” that they do not wish to be resuscitated but then later change their minds.

In May doctors were warned that they could be struck off if they ignored the wishes of terminally ill patients who refused treatment.

The moral dilemma has been heightened by improvements in medical technology which mean that many people who 20 years ago would have died quickly from horrific injuries such as Richard’s are now being kept alive.

Like Richard, many could be in a “locked-in” state: a condition which leaves patients able to think, hear and feel, but able to communicate only by moving their eyes and eyelids.

Richard’s father said his son had made it clear that he would not want to be kept alive on a life-support machine. “But when it happened to him the will to live took over,” he said. “It’s a very difficult area.”

Richard’s voluntary movement of his eyes “changed everything”, said Prof David Menon, 53, who was in charge of Richard’s care at Addenbrooke’s Hospital’s neuro critical care unit in Cambridge. “It allowed him to have a say in his own care.

“This was crucial, because we know there may sometimes be differences between what a patient declares when he is fit and healthy and what he feels when he is the one in the hospital bed.”

Richard, from Kidderminster, was on his 750cc Suzuki motorbike travelling to Spalding, Lincolnshire, to see his girlfriend when he was hit by a car that came out of a side road on October 23 last year.

At around 10.30pm his mother Christine received a call from Richard’s daughter Charlotte, 18, telling her that he was critically ill.

It was as if history was repeating itself: her younger son, Warren, was killed on his motorbike in 1996, when he was just 17 years old.

“I just thought, ‘Why me? Why us? Why another of my sons?” Christine said. “What have I done to deserve this?”

Richard’s mother, father and daughter Charlotte went straight to the hospital in Peterborough. They found him in a neck-brace, paralysed from the chest down and struggling to talk.

“I was in total shock,” his mother said. “I couldn’t stop crying. Then he said to us: ‘I suppose this means that I won’t be getting my leg over any more.”

Richard, 43, uttered only a few more words after that. His last word, before he slipped into a coma, was a simple “yes” when a doctor asked him if it was OK for him to carry out an operation on his neck.

He was moved to Addenbrooke’s hospital in Cambridge. His parents stayed there for three weeks so they could be close to their son, all day every day.

They slept mostly in Richard snr’s large caravan which he had towed to Cambridge, but they also spent anxious nights sleeping fitfully in waiting room chairs at the hospital.

After returning to Kidderminster they made the exhausting five-hour, 250-mile round trip to the hospital two or three times a week, sometimes taking antidepressants to ease their despair at Richard’s deteriorating condition.

“We thought he would wake up,” said Richard’s sister Tracy, 42. “He did open his eyes but couldn’t see us; there was nothing there.”

Months passed by with no sign of recovery. The doctors called in Richard’s distraught parents who took the heart-rending decision to give them permission to let him go.

It was, they thought, what Richard would have wanted.

They had recalled a conversation, after a family friend lost both legs in a car crash, in which Richard had told them that if anything similar happened to him he would not want to be kept alive.

“It is almost impossible to decide whether you want your child to live or die in that situation,” said his father, a mechanic who retired earlier this year.

“Do you let him go or say he should be kept alive and risk that if he regains consciousness he will not be able to cope with his injuries? There is no rule book and either way there will be guilt.

“We left the final decision to the doctors but we told them that if he was brain-dead and could not move, eat or communicate, we were ready for the machine to be switched off.”

When the doctors asked the family for more time they agreed and Prof Menon discovered that his patient was able to blink. He asked him three times if he wanted his treatment to continue. Each time Richard indicated that he did.

Christine believes he was doing it for his daughters, Charlotte, 18 and Bethanie, 14. “He doted on them and they on him,” she said. “I am sure that he was fighting to stay alive for them.”

The flicker of life in Richard’s eyes is testament to the power of the human spirit, of the will to live in even the most desperate circumstances. But doctors admit they do not know how long he will live.

Richard is fed through a tube, is on a ventilator and will always need 24-hour care. But his breathing has improved and he can smile, grimace and move his head and eyes.

“It’s a slow, gradual process,” his father said. “It’s not like on the TV when someone comes out of a coma and everything is fine straight away.”

His family know that physically Richard will not get much better but they hope that, with the help of medical staff and speech therapists, he will learn to communicate more by using his tongue, eyes and facial muscles.

Family members talk about Richard in the past tense, a perhaps unwitting acknowledgement that the old Richard has gone.

They have told his girlfriend at the time of the crash, Kate, 27, to “move on” with her life but she still goes to see him in hospital. “I still love him,” she says, breaking down in tears.

The family has had to cope with other tragedies. In 2000, four years after Richard’s brother Warren was killed in a motorcycle accident, his 58-year-old stepmother Mary – who has been married to his father for 25 years – lost one of her three daughters, Shirley, when she committed suicide aged 27.

Another of her daughters, 31-year-old Rachael, suffers from muscular dystrophy, a hereditary disease which claimed the lives of her father and brother in their forties.

At times. Richard’s father admits, it all becomes too much. “Sometimes I have to put it in a box and say I don’t want to talk or even think about it all,” he says.

Amid the bleakness of Richard’s condition there are, however, some uplifting moments. On Thursday his father and stepmother went to see him in the Royal Worcestershire hospital where he was moved recently to be nearer to his family.

A nurse drew a picture of a clock on a piece of paper, held it up and asked him, ‘Where’s the clock?’, Mary said. “And he looked at the clock on the wall.

“We were chuffed to pieces. Then the nurse asked him, ‘Where’s the door?’ and he looked towards the door.

“For so long there was nothing from him, but when we see things like that we know he’s definitely in there.”

Tracy says that when she goes to see Richard she tries to talk to him “as if nothing has happened” and she is convinced that he responds.

“He teases me by closing his eyes when I say ‘hello’ and then he opens them again with a little smile,” she said.

“I get him back by saying: ‘Wake up, you bloater! – he used to be tubby when he was younger. I think he gets more than we realise.”

Their father is trying to dampen down the family’s hopes for Richard because he knows his condition is fragile. “He’s up and down,” he said. “He could go anytime. We just don’t know. We can only hope, but we have to stop ourselves hoping for too much.”

His mother, however, dares to dream that Richard will be able to get into a wheelchair and watch his daughters growing up. “His sister Laura gets married in August. I would love to see him there,” she said. “That would make us all very happy.”

Bionic Legs Allow Wheelchair User To Walk Again

July 18, 2010

Inventors in New Zealand have come up with what they say is a unique device which allows paraplegic people to walk again.

The first pair of the new bionic legs has given fresh hope to Hayden Allen who had been told he would never walk again following a motor-cycle accident.

Jonathan Josephs reports.

BBC Proms: Live Signed Performance

July 17, 2010

Thanks to the BBC Ouch! Blog:

Roll up, roll up. BBC Proms features a signed performance this year and has set aside 150 standing places for deaf patrons.

Sondheim at 80 – Saturday July 31st 2010, 7.30pm at London’s Royal Albert Hall. Get more info on what proms are and how to buy tickets.

A starry celebration of Broadway marking the 80th birthday of famed composer and lyricist, Stephen Sondheim. Pieces include: excerpts from the horror-opera Sweeney Todd, the Ingmar Bergman-inspired A Little Night Music, the fairy-tale compendium of Into the Woods as well as Pacific Overtures and Sunday in the Park with George.

You’re advised to get there early and queue.

150 ‘promming spaces’ have been set aside to make sure that deaf customers get a good chance of seeing the performance. No more seats are available and you cannot prebook these standing only spots.

50% ticket reductions are on offer for all disabled people at the venue.

Paul Whittaker OBE, from Music for the Deaf, will be signing the event.

Read more about BBC Proms, now in its 116th year.

Cricket Matches And Car Parking

July 16, 2010

Yesterday, I took a break from blogging to watch live Test cricket. A special experience, which was made a bit less special by the small detail of where to safely park the car.

The disabled parking was taken by people who really needed it as much as we did. So after a bit more driving than we should have had to do, we finally found a safe spot- where we could park, with a Blue Badge, for a maximum of 4 hours. The problem? Anyone who watches Test cricket knows that a full day’s play lasts 9 hours.

The ‘clock’ that came with my Blue Badge infiorms me in bold type: Time Limit 3 Hours. So, usually, I would have been happy to see that I was allowed to park for 4.

This experience got me thinking. There must be many Blue Badge users who go out and need to use public parking spots for longer than 3 hours. Three hours is just about long enough for a Bollywood movie fan like me to watch the movie at the cinema. There’s trouble if I need to eat first, though. Live concerts last longer than 3 hours. So, usually, does live tennis and live snooker.  What if a live football match goes to extra time and a penalty shootout?

Surely Blue Badge users have the same right as anyone else to experience these very special events live without worrying that their car will cost them money they can’t afford to pay if they leave it parked for too long? Surely we’re not supposed to only take our cars to medical appointments?

Many of us can’t use public transport, as a direct result of our disabilities- the reason we need the Blue Badge in the first place.

So, Blue Badge users, I welcome your thoughts in the comments below.

BBC Sport – Disability Sports – Highlights: GB wheelchair basketball teams out of worlds

July 15, 2010

Vodpod videos no longer available.

BBC Sport – Disability Sports – Highlights: GB …, posted with vodpod

Poll Reveals Widespread Discrimination Of People With Learning Disabilities

July 14, 2010

Discrimination against people with learning disabilities and misconceptions about their lives is still widespread in the UK, despite a string of high profile hate crime cases, a poll reveals today.

A third of Britons think those with such disabilities cannot live independently or do jobs, while almost a quarter imagined they would be living in care homes. Nearly one in ten (8%) expected them to be cared for in a secure hospital out of town.

There was however also a high awareness of the challenges facing the learning disabled. Nine out of ten of those questioned for Turning Point, a leading health and social care provider, thought they experienced discrimination, and more than half (51%) thought they were the most discriminated against group in society — coming above other groups often perceived to experience discrimination, including gay people (44%), overweight people (43%) and ethnic minorities (40%).

Hate crime against those with learning disabilites — of whom there are 1.5 million in the UK — has hit the headlines repeatedly in recent months.

Last autumn an inquest heard how Fiona Pilkington killed herself and her teenage daughter Francecca — who had a mental age of four — after apparently being driven to despair by the continued abuse her family had suffered.

The survey of 1,100 adults also revealed a lack of knowledge about what constitutes a learning disability. A third thought mental illness was a learning disability, and a quarter classified dementia as one.

Adam Penwarden, Turning Point’s director of learning disability services, said such misconceptions contributed to widespread discrimination.

“People often think individuals with a learning disability are ‘different’ and discriminate against them because of this,” he said.

“In fact, they can make a great contribution to society when given the right support. This includes working, living independently and playing an active role within the local community.”

Rosa Monckton, who has a daughter with Down’s syndrome, said it those with learning disabilities were frequently inaccurately stereotyped in a purely negative way.

“When people were asked in the survey to describe a typical person with a learning disability they most frequently suggested negative characteristics such as having poor social skills, lack of confidence, shouting, being aggressive or slurred speech,” she said.

“Positive characteristics, for example being warm, extrovert or funny, scored far lower, showing people have pre-conceived ideas about how a person with a learning disability will think and behave.”

Deaf Schools, Friendship and Equality

July 14, 2010

This is Charlie Swinbourne’s latest article for Ouch!. It’s about deaf schools, which are slowly closing down, with pupils being sent to mainstream schools. It’s well worth a read.

Charlie makes good points about the friendships which form between groups of people who share a DisAbility. He wonders if these friendships and bonds will last once the schools the children share close down.  I’d just like to assure him that friendships like these do last for life. These are unbreakable bonds. The feeling is something stronger than friendship. I’m saying this with such certainty because I have experienced it myself, in my relationships with those of my friends who share my DisAbility.

The Silence

July 14, 2010

Genevieve Barr used to be a teacher- now she’s playing the lead role in the BBC’s new drama, The Silence, which started this week. Here, she writes about coming out of the classroom and into the studio, how to teach a class of 14 year olds the meaning of an English word, and not being able to hear.

Charley Boorman

July 14, 2010

Charley Boorman is an actor, adventurer and a writer. He is also dyslexic.

He says it was his father, the film director John Boorman, who spotted the signs – not his teachers, who wrote him off.

“At the time when I was going to school in Ireland people didn’t really have a clue about what it was, so I had to spend a lot of my time trying to explain to teachers what dyslexia meant.”

Frustrated in class, he played the clown he says.

“I found I was being pushed to one side and I was being ear-marked as being thick, which is a very damaging thing to be told as a young kid,” he says, laughing.

“(They said) you’re thick and you’ll not amount to much.”

Natural strengths

Those same teachers would of course be swallowing their words now.

Boorman has not only become a household name after riding his motor bike around a large chunk of the planet with and without his bike buddy Ewan McGregor – he has also written five books to tie in with the TV series.

He believes his teachers should have looked to his strengths, not his weaknesses.

“It’s unfair because often people who have disabilities – visual or hearing or wherever it is – they can very often excel in other things and it’s a matter of finding those things.

“Often dyslexic kids will excel in being a little bit mischievous or tying to find attention in other ways because they’re not getting it in class.

“If anybody has walked down the road and someone says turn left and you take a right that’s a form of dyslexia. If you write a number down backwards or you get the numbers mixed up a little bit occasionally, that’s a form of dyslexia.”

He still struggles today, particularly with writing and reading.

Without dyslexia, he jokes, he’d “be someone who can read”. “I can’t do my kids’ homework,” he adds, pointing to his two girls who are watching TV in the living room after a day at school.

In fact Boorman spends a lot of time mocking himself, just as he has been mocked many times for his problems with spelling and writing. Even his epic bike journeys have been punctuated by the occasional teasing by a friend or colleague over a misspelt word.

He says such comments just washes over him.

Teacher training

Boorman is now trying to improve the lot of children growing up today with dyslexia. He is the president of the charity Dyslexia Action – work which has taken him into schools to see for himself projects and learning aids designed for the dyslexic.

He feels more still needs to be done, especially when it comes to training teachers.

“While they’re being taught to be teachers, they need to to be taught to identify dyslexia … so that that child can then be earmarked and say, ‘right, that kid needs a little bit of extra help’.

“That was the kind of battle I had. I knew what I had, but my teachers didn’t.”

Report Highlights Gaps In Muscular Dystrophy Care In Wales

July 14, 2010

A report by a group of assembly members has highlighted serious gaps in the care of people who suffer from muscle wasting disease.

The cross-party group for muscular dystrophy argues that an extra £470,000 should be invested for the estimated 3,400 people in Wales who have one of the more than 60 different types of muscular dystrophy and related neuromuscular conditions.

It says that would, in turn, save the Welsh NHS nearly £4m a year in emergency hospital admissions.

The research has been backed by families affected by muscular dystrophy including Ray Thomas from Neath, who lost two sons to muscular dystrophy, and after whom the report is named.

The AMs report followed a nine-month inquiry and is due to be presented to Health Minister Edwina Hart later.

Giving evidence to the group, Mr Thomas said his son, Leighton, 43, who died in March from Becker muscular dystrophy, was failed by the NHS.

Six years before his brother, Robert, who was 39, died from the same condition, which affects only males.

Mr Thomas believes both his sons could have lived up to another 10 years if they had received the care they needed.

“Two weeks before Leighton died, I had to make a phone call to England to see if I could take my son to a specialist clinic,” he said.

“By the time the answer came back, yes, Leighton had deteriorated. He couldn’t make it.

“If we had the clinicians in Wales, for adults, I honestly believe that Robby’s and Leighton’s life could have been extended.

Leighton spent the last 11 years of life in a wheelchair. This Mr Thomas says was due to a lack of physiotherapy.

Chair Dai Lloyd AM said: “It was clear from the evidence gathered throughout the inquiry that specialist care can reduce emergency admissions.


“Health boards in Wales must recognise this – by working together and sharing the costs of a neuromuscular service, the NHS can save money.”

NHS Wales is pledged to hosting two care advisers, one in north and one in south Wales. Recruitment is under way but no-one is yet in post.

Nic Bungay, of the Muscular Dystrophy Campaign, said: “In January we were shocked by Ray’s story of his son Leighton having spent 11 years without ever leaving his wheelchair.

“Now that story is all the more tragic because Leighton passed away without ever having seen the better care his parents are still fighting so hard for.

“We hope the health minister and NHS Wales will take notice of the huge inequality Welsh muscle disease patients are facing.”

Richard Rudd

July 13, 2010

Richard Rudd’s mother, father and two daughters all agreed it was time to let him go.

On October 23 2009, Richard was riding a motorcycle when he hit a car at speed.

He was found six metres away from his bike.

Diagnosed as paraplegic at the scene, after spending a month undergoing various tests and scans it was confirmed that the paralysis of both arms and legs was to be permanent.

Richard’s father – also called Richard – said at the time: “To keep somebody alive whilst they’re suffering and they’re not going to get better, it’s playing God, if you like, because it’s going against nature.

“If nature had been left to take its course, Richard would have been gone a few weeks back.”

The family was clear that Richard would not want his treatment to be continued. They remembered when discussing a friend who had become paraplegic following a car accident, he said: “If ever this happens to me, I don’t wanna go on. I don’t wanna be like him.”

Initially it was believed that Richard had fallen into a coma from which he was unlikely ever to emerge.

His ventilator was the only thing keeping him alive.

Richard was unable to respond to his family – or even to doctors treating him – but then a startling discovery was made.

Defining death

The attending consultant, Professor David Menon, discovered that Richard was able to move his eyes in response to simple commands and questions.

This meant that, in theory at least, Richard could make the decision to live or die himself.

Professor Menon is a world-leading expert in the treatment of brain injuries and 13 years ago he established the Neuro Critical Care Unit (NCCU) in Addenbrooke’s Hospital in Cambridge.

It is now the largest unit of its kind in Europe with provision for 21 patients at any one time.

In this unit, the rules governing death are directly challenged.

“It’s really important to think about death not as an event but as a process,” said Professor Menon.

“That process can be strung out quite considerably and slowed down. It can also be interrupted.”

In the UK today the legal definition of death is brain death, not whether the heart is beating as many believe.

And Professor Menon thinks that it is not just survival that is important but the quality of that survival.

“Between survival and death there is a slightly grey area,” he said.

“The successes of modern medicine are often rightly publicised, but we rarely discuss what happens when medicine fails.

“For example, death is commonly viewed as an event which involves cessation of the heartbeat.

“In actual fact, it is irreversible damage to the brain that decides whether a person survives or not, and the heart needs to have stopped for several minutes before such damage results.

“Indeed, it is common, as with head injury, for the brain to be irreversibly damaged, while the function of the heart and lungs is maintained by intensive care.”

Around 40% of patients admitted to the unit make a meaningful recovery.

Two months after Richard’s accident, a speech therapist was asking him the same 20 simple questions – about his interests and family – each day.

He answered by moving his eyes left or right to signal yes or no responses.

If Richard consistently answered correctly it would demonstrate that he had the capacity to finally be asked the question about what he wants: to continue treatment or stop it – effectively ending his life.

Richard had been in the NCCU for six months before Dr Menon asked him the question he had wanted to ask him ever since he saw his eyes move for the first time.

“He remembered he had had an accident,” said Professor Menon.

“He was aware that he was being treated on an artificial ventilator and being fed through a tube going into his stomach and this was likely to be going on for some time. I didn’t specify how long.

“Finally I then asked him if we were happy for us to go on treating him and he said ‘yes’. I asked him again and on three occasions he made it clear, just with yes/no answers, that this was a consistent response.”

Making progress

Richard is now able to make facial expressions and his long-term memory is intact.

He has been moved to a different unit nearer his home in Worcester and, after seeing slow but steady improvements, Richard Rudd Snr has changed his view.

“We all sit round and talk in the pub or at work and say ‘if this happened to me, turn the machine off’,” he said.

“It’s all hypothetical and you don’t know until it happens to yourself. As a family and friends, if that person can’t decide for themselves, sometimes you feel that you can decide for them.

“Because, in theory, you think you can never live in that situation, you sometimes put that judgement onto somebody else.

“At the end of the day, you probably have no right to do that.

“But now Richard’s in the situation where that’s actually happened. It’s real life – it’s not pretend. He is in that situation.

“The will to live takes over.”

Julie McElroy Gains A BSc

July 13, 2010

Julie McElroy, now 24, has been appearing on Same Difference since March 2008 because of the many interesting challenges she has participated in.

As if all this, and the small matter of her CP, didn’t make her amazing enough already, I’ve just found out that Julie recently gained a BSc Hons in IT from the University of the West of Scotland.

Julie has inspired me ever since I first read about her over two years ago. She’s always had my best wishes- now she has my sincere congratulations as well. She has shown the mainstream yet again what I have known all my life- given a chance and some Learning Support, DisAbled students can, and do, pass any exam they wish to take.

This post is part of the Inclusion Rules! Debate at Same Difference.

Wheelchair Basketball Championships: Day 6 Results

July 13, 2010

The Great Britain men’s wheelchair basketball team continued their winning run at the World Championships with a 78-66 success over the United States.

The success in their last pool game ensures the Beijing bronze medallists top their pool ahead of Wednesday’s quarter-finals.

A strong final quarter by GB, led by Simon Munn (21 points) and Ian Sagar (17) helped them to victory.

The GB women claimed their first win of the tournament, beating Mexico 57-50.

Garry Peel’s side had lost by eight points or fewer to the Netherlands, Canada and Australia in their first three pool games.

But they finally got their reward against Mexico, pulling away in the final quarter and holding their nerve to claim the victory.

Once again, Helen Freeman led the GB scoring with 18 points but there was good support from both Helen Turner and Louise Sugden and squad newcomer Amy Conroy.

They will now face a difficult task in the quarter-finals against an unbeaten US side.

The GB men, who have been in superb form in their pool games, were tied at 51-51 with the US going into the final 10 minutes of the match with Simon Brown and Ghaz Choudhry impressing for Murray Treseder’s home side.

But GB upped the tempo after that which allowed them to run out comfortable winners and set up a last-eight meeting with France on Wednesday.

Close Down The Spending Challenge Site!

July 12, 2010

On Friday, Chancellor George Osborne launched the Spending Challenge website, aiming to ask members of the public how they want the Government to make spending cuts.

Unfortunately, the site is already full of a long list of disablist  comments such as:

Why do we have to pay out large sums of money each month so that disabled individuals can drive around in big, brand new over priced mobility cars which are ‘Free’ to them on the motability shceme?

I propose to allow the disabled and sick population of the UK, the people who have desperately sought employment to no avail due to health and fluctuating patterns, please allow us the chance to forge a new and respected industry.  Let us be farmers, to grow cannabis needs a great deal of knowledge and expertise.  Some of us have had to learn through no fault of our own other than the fate we’ve been handed, so let us strive and seek much needed financial independence.

A medical marijuana industry with the disabled community at the core would be beneficial to all, we would have employment that would suit the needs of the housebound and fluctuating elements of most illnesses.  And of course, the need for benefits would drop thus aiding the country.

And: “Everything to do with disability in this country is a rip off.”

In response to the site, Benefits and Work have released a newsletter urging people to contact their MP, asking them to tell the Chancellor to close down the site, clean it up and not reopen it until it is properly moderated.

You can also make a complaint to the Equalities and Human Rights Commission.

The site in itself may be a good idea, but I completely agree that it needs proper, strict moderation. Such sites will only work if the public takes them seriously- not if Daily Mail readers fill them with rubbish!

The campaign to close down the site, then, has the full support of Same Difference.

NHS Shake Up- GP Powers: Good Or Bad For DisAbility?

July 12, 2010

I’ve been hearing for about a week that:

Ministers want doctors to club together in consortia to take charge of billions of pounds of funds for mental health, hospital and community services.

It would represent a major change but they believe GPs are better placed than managers to respond to patient need.

This proposal is due to be published in a White Paper later today. Health Secretary Andrew Lansley supports it.

What do you think of it, UK readers? Many of us are the users of the services they want to hand over to GPs. Would this move mean that we would be more likely to access the services we needed? Would it speed up the process? Or would it make no difference at all? Please leave your comments below.

Wheelchair Basketball Championships: Day 5 Results

July 12, 2010

Great Britain’s men continued their unbeaten run with a hard-fought 75-59 win against World Wheelchair Basketball Championship newcomers Poland.

GB took a healthy lead in the first quarter with Simon Munn scoring 10 of GB’s 20 points as they led by 11.

Poland turned the tables in the second period and hung on in the third, but the hosts pulled away late on.

GB are joint top of Pool A with the US as they head into their final clash of the round against the Americans.

The British team looked strong early on, but Poland player-coach Piotr Luszynski inspired his men to a comeback as they won the second quarter 23-13.

After a half-time diatribe from head coach Murray Treseder, Great Britain came out with an extra urgency.

But Poland continued to hang on to their coat-tails with Mateusz Filipski shooting three-pointers to keep them in the game.

GB captain Jon Pollock made sure his team had some breathing space at the end of the third quarter by scoring his only three-pointer of the match followed shortly by an extra basket.

With a cushion established, GB began to draw away in the final quarter, with a three-point play from Ian Sagar making the deficit eight points.

Poland were then weakened as Jan Cryul was fouled out the game, and the experience of the British team told as they pushed their winning margin to 16 points.

Haley Sadler

July 11, 2010

Haley Sadler, 22, featured in last week’s Pick Me Up magazine. She can’t hear, and was bullied at school. Now she’s a campaigner with the RNID and has set up this Facebook page to support people who can’t hear. Her story is truly inspirational. She’s truly DisAbled and has my best wishes.

Wheelchair Basketball Championships: Day 4 Results

July 11, 2010

Great Britain’s women suffered their third successive loss at the World Wheelchair Basketball Championships with a 48-40 defeat by Australia.

The Australians were largely in control, although Amy Conroy and Helen Freeman will rue not converting free throw chances in the second quarter.

Australia held a 27-18 lead at half-time before GB cut the gap to five points thanks to Conroy.

But GB could not complete the fightback at Birmingham’s National Indoor Arena.

Wheelchair Basketball Championships: Day 3 Results

July 10, 2010

Great Britain’s men made it three wins from three at the World Wheelchair Basketball Championships with a 65-45 victory against Italy.

Italy led until the final minute of the first quarter before Jon Pollock, who top scored for the second successive match with 18 points, led GB’s charge.

Pollock, Ian Sagar and Abdi Jama helped Britain to 37-16 at half-time.

That improved to 53-34 at the end of the third quarter before GB added a further 12 points to seal the win.

The next game for Britain’s men in Birmingham is against Poland on Sunday 11 July.

Before that, the women’s team face Australia on Saturday.

Families With Disabled Children ‘Struggle To Pay Bills’

July 10, 2010

pupil in wheelchair

Families with disabled children are suffering severe economic hardship

Families with disabled children are struggling to pay household bills as the downturn hits their already stretched finances, a survey suggests.

Contact a Family surveyed 1,113 people about how they were coping financially and found 23% went without heating and 14% missed meals to make ends meet.

The group said the slump has left many parents at “breaking point”.

It is calling on the government to protect families in the forthcoming comprehensive spending review.

Srabani Sen, chief executive of Contact a Family, said: “Many families with disabled children are in financial dire straits.

“Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

“These financial pressures have been worsened by the economic slump and have left many at breaking point.”

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Almost three-quarters, 73%, said they had to forego leisure activities and days out, while 68% are not taking any holidays.

Bryan Clover of the charity Elizabeth Finn Care warned the situation will get worse when the government switches the measure of inflation its uses to calculate benefit rises, from the Retail Price Index to the Consumer Price Index, which excludes housing costs.

Mr Clover said: “The impact of that is anything that they buy from now on will feel more expensive, its going to cost them more they will have less disposable income to use. Every single thing is going to be more expensive and that means hardship is really going to start biting.”

Disability in the UK
770,000 children under 16 are disabled
98% of disabled children live at home with parental support
16% of mothers with disabled children work
Raising a disabled child cost three times more than one without disabilities
£15,270 is the average income for families with disabled children
Source: Contact A Family

The Minister for Disabled People, Maria Miller, said the coalition government was “committed to supporting the most vulnerable groups in society.”

“We’re radically reforming and simplifying the welfare system to make sure that families with disabled children get the help they need.

“Families with disabled children can face some of the toughest challenges when trying to get back into work. Our new work programme will help as it will provide a personalised package of support which can address issues around specialist childcare and respite care, regardless of the benefits they claim.

“In addition, from next year Disability Living Allowance will increase in line with the Consumer Price Index, meaning those families facing financial hardship will be better off than if we had stuck with the previous Government’s plan to claw back last year’s increase”.

Wheelchair Basketball Championships: Day 2 Results

July 9, 2010

The Great Britain men’s team put in a strong second-half display to beat Japan at the World Wheelchair Basketball Championships in Birmingham.

The Beijing Paralympic bronze medallists trailed 20-10 after the first quarter but rallied after that to run out 74-59 winners.

Jon Pollock top scored with 22 points, while Simon Munn contributed 18.

But there was a second narrow defeat in a row for the GB women who lost 54-49 to Canada.

Garry Peel’s side, who were edged out by the Netherlands in their opening game, started strongly and led 14-5 early on.

Canada pulled it back and were 27-24 ahead at the break but Laurie Williams, Louise Sugden, Helen Turner and Helen Freeman worked hard to keep the home side in it.

GB led by a point going into the final minute but five late points by the Canadians sealed the win.

The GB men were given an early scare by Japan, who saw Reo Fujimoto top score with 30 points, but once they took the lead through Pollock late in the first half, they were in control.

Two three pointers from Pollock and a couple of scores from Ian Sagar and Abdi Jama in the third quarter kept them ahead and they stretched their advantage late on to record a win ahead of Friday’s key pool game against European champions Italy.

NI Parents’ Plea To Health Trust For Autism Support

July 9, 2010

Parents of children with autism have called on the South Eastern Trust to reinstate a family support service.

At a meeting in Belfast on Thursday night, they said that parent liaison officers were vital to families when a child is first diagnosed with autism.

The South Eastern Board said the funding for the service was part of a pilot scheme for one year.

Parents said its withdrawal was “a huge loss”.

Julie Gregg, the mother of an autistic child said: “It means we don’t know who to turn to. If new legislation comes out and we don’t know anything about it. Who do we go to?”

In a statement, the board said it had reduced waiting times for diagnosis and intervention in line with children’s autism targets.

“We asked Northern Ireland Autism to pilot a family support service using non-recurrent funding for the period 2009 – 2010,” the statement said.

“We are in discussions with the charity to reorganise the family support service within the limited budget available for children’s services this year.

“The trust has not cut any recurrent funding for autism services this financial year.’

Wheelchair Basketball World Championships: Day 1 Results

July 8, 2010

The Great Britain men’s and women’s wheelchair basketball teams had mixed fortunes on the opening day of the World Championships in Birmingham.

The men, who were Paralympic bronze medallists in Beijing two years ago, easily defeated South Korea 87-43.

Jon Pollock and Ian Sagar finished as the top scorers for Murray Treseder’s side with 16 and 14 points apiece.

But the GB women’s team, which includes six players under the age of 21, were edged out 39-38 by the Netherlands.

The two sides were evenly matched throughout the game with GB leading by five points at half time (22-17) with Helen Freeman and Clare Strange in impressive form.

In the second half, the Dutch came back into it and by the end of the third quarter the scores were tied at 32-32.

Freeman edged GB 38-37 in front with three minutes to go but a basket from Roos Oosterbaan gave the Dutch the lead again and despite both teams going close to scoring, it was the visitors who emerged victorious.

The women will look to bounce back on Thursday against a strong Canada team who won gold at the recent BT Paralympic World Cup in Manchester.

The British men made an impressive start to the tournament against a relatively unknown Korea side.

They led 24-10 at the end of the first quarter and were 47-20 up at the break allowing coach Treseder to make full use of his bench ahead of the next game against Japan on Thursday evening.

Seek Work Or Lose Benefits, Warns IDS

July 8, 2010

When the Office of Budget Responsibility lost its supremo, Sir Alan Budd, this week it was over claims that the private sector would create 2m new jobs in the next few years – soaking up all those workers forced off the government payroll because of its ongoing austerity plan. The net effect, said the OBR, would be to leave the economy 1m jobs better off.

But there is evidence that that rosy outlook may be undermined from within. Yesterday, Iain Duncan Smith laid out his ambitious welfare reform programme to senior civil servants.

By taking people off out-of-work benefits such as incapacity benefit and putting them on to jobseekers’ allowance, Duncan Smith raises the prospect of a US-style workfare model where people “take personal responsibility for accepting work when it is there”.

However, economists say that the OBR estimates of the number of unemployed do not take account of the welfare reforms announced in the emergency budget. These measures, according to a paper by the thinktank Inclusion, show the jobless figure could jump to 3m by 2014, because the proposed shake-up will transfer 2m lone parents and sickness-benefit claimants on to the dole.

“In 2014, we could have roughly the same number of people on sickness benefits as we had in 1979,” said the thinktank.

In effect, says Inclusion, the government will be shifting people from “inactive” to “active” welfare benefits, where claimants are required to look for work to get money from the state. While this process was started by Labour, the coalition runs the risk of an explosion in the number of JSA claims, which would leave it politically exposed to charges that it had returned to the “get on your bike” policies of the 1980s.

Of course this may be part of the plan. Budd was Margaret Thatcher’s economic advisor and plunged Britain into, his words, a “cold-bath recession” 30 years ago.

“Rising unemployment was a very desirable way of reducing the strength of the working classes,” Budd recalled many years later. “What was engineered – in Marxist terms – was a crisis in capitalism which recreated a reserve army of labour and has allowed the capitalists to make high profits ever since.”

All this brings us to an interesting piece of Duncan Smith’s speech. The cabinet minister says that by extending the retirement age by just one year, the country could increase its GDP by 1%, that is around £13bn. By getting people to work harder for longer, so that wealth is created, might be an unappealing thought for the stressed-out millions – unless you happen to own a business. It is also what occurred in the 1980s.

Murray Field

July 7, 2010

A 12-year-old boy with muscular dystrophy has addressed a panel of MPs to campaign for better healthcare.

Murray Field, suffers from Duchenne Muscular Dystrophy which affects his heart, limbs and lungs.

The All-Party Parliamentary Group for Muscular Dystrophy said care for patients with muscle-wasting disorders can be “inadequate and not acceptable”.

Murray, from Droitwich, Worcestershire, said he wanted his life to be “as good as possible”.

He told the MPs at Westminster how the illness has affected him and that he wants NHS care in the West Midlands to improve.

 

“I love the new splints I’ve got for my legs and I’m lucky because they’re going to stop me needing an operation on my legs.

“But lots of children aren’t as lucky as me and can’t get things like this that they really need.

“I want the doctors to hurry up with treatments for us.

“I know I won’t be able to walk again but I want my life to be as good as possible.”

There are more than 60 different types of muscular dystrophy and related neuromuscular conditions, affecting some 60,000 people across the country by causing muscles to waste and weaken.

The all-party group said last August that people with the illness often faced long waits for wheelchairs and having to pay for physiotherapy.

It added that patients often found there to be a “postcode lottery” when it came to life expectancy.

They concluded that official guidelines needed to be given to trusts to ensure high standards of care as well as a review of skills in the health workforce.

A spokesman for the Muscular Dystrophy Campaign said it was very proud of Murray, who has been invited to address the same group of MPs.

The 7/7 Bombings: Five Years On

July 7, 2010

“Where were you when the world stopped turning?” This lovely song by Alan Jackson was written in tribute to all those who were involved in the September 11th terrorist attacks in New York.

However, this can also be applied to all those who were in London, England, on July 7th, 2005. That was the day, exactly five years ago today, when this day, too, went down in history for all the wrong reasons. That was the day when too many people lost their lives for no good reason. The day when too many people became disabled for no good reason.

As someone who lives in London and who, like everyone else in the city, woke up on that July 7th thrilled by the previous day’s news of the London 2012 Olympic and Paralympic victory, I feel that it would be wrong today to write an ordinary post without first mentioning those people whose lives changed forever on that day.

This being a disability blog, I’ll end by mentioning particularly those who became disabled that day. I wish them well in a new life- a life that is difficult for anyone to accept and adjust to- but one in which I hope they will one day be very happy.

Martin Brooks Wins Real Dad Of The Year Award

July 6, 2010

I’ve just read that Martin Brooks, who first featured on Same Difference earlier this year, has won the Real Dad Of The Year Award. Congratulations and best wishes to Martin and daughter Mia. He’s a truly special parent and his win is very well deserved.

Lets Assess the Government, Not The Mentally Ill

July 6, 2010

The government’s plan to force everyone receiving disability living allowance (DLA) to undergo a medical assessment is deeply misguided. If allowed to go ahead, the consequences could be catastrophic for people with mental health problems.

Looked at alongside George Osborne’s assault on incapacity benefit, capping of housing benefit (it was the Conservatives whose abolition of rent controls led to soaring rents in the first place), and the decision to link benefit rates to the consumer prices index instead of the retail prices index, it is hard to escape the conclusion that these changes constitute a cynical attempt on the part of the coalition government to manipulate public prejudice towards those least able to speak up for themselves.

Around half of all people claiming benefits because of illness have mental health problems. The cost of providing for them is considerable. And essential. Any decent society should be urgently concerned with ensuring those affected receive the support they need to lead full and rewarding lives.

In some cases, this will involve working with people to help them develop the skills and confidence they need to return to the workplace or to enter it for the first time. Where such schemes exist, they are largely confined to the voluntary sector, often run by people with personal experience of the challenges involved, and always oversubscribed.

It is a fallacy, and a deeply offensive one, that people with mental health problems do not want to work. According to a report published in 2004 by the Social Exclusion Unit, mentally ill people have the highest “want to work” rate of any disability group. It also found that fewer than four in 10 employers would consider offering a job to someone with a history of mental illness.

Providing people with the help they need, and addressing the stigma that holds them back, is no easy task. It takes time, thought and significant financial investment. How much easier to harness the stigma and turn it to political advantage! The welfare system is overrun with work-shy benefit cheats. The “allegedly disabled” (as Jeremy Paxman put it recently on Newsnight) are living it up on taxpayers’ money, claiming benefits to which they are not entitled. We must reassess everyone, weed out the scroungers! What objection could anyone have? Unless they’re cheating.

Let’s think about that. DLA exists to help those with serious long-term health problems pay for the additional support they need as a result of their condition. It is not means tested. Many working people receive DLA. It is often DLA that enables them to work. It isn’t easy to get. Claimants must complete a lengthy and personal form covering everything from toileting needs to suicidal urges. A statement is required from the claimant’s doctor as well as someone who knows them well – often, in the case of psychiatric patients, their social worker or community psychiatric nurse. Fewer than half of all claims are successful.

Now, with the openly stated aim of reducing the benefit bill, the government will employ its own assessors to decide who is worthy of help. NHS psychiatrists, who have the right to deny people liberty and to medicate them against their will, are not to be trusted when it comes to providing an accurate statement of an individual’s support needs.

As history has shown, the intangibility of mental illness, the lack of a definitive test, provides opportunities for exploitation. Unmarried mothers, troublesome offspring, homosexuals, all have been detained in psychiatric hospitals. “Proof” of mental health or ill health is impossible to provide. An assessment inevitably involves a subjective judgment on the part of the assessor. And when the assessor has an outside agenda – reducing the benefits bill, say – the lack of objective proof leaves mentally ill people vulnerable.

The awkward truth is that mental health problems are real. They cannot be bullied or wished away. If support is removed, this doesn’t mean support is not required. It means that as a society we have chosen to look away. We must not allow this to happen. The fight is on.

Osborne’s Haste Will Undermine Incapacity Benefit Reform

July 6, 2010

Reforming benefits for the sick and disabled is a difficult operation that obviously needs to be undertaken with care, given that this affects the most vulnerable in our society.

The previous British government established the employment support allowance (ESA), which simplified the system by replacing two separate benefits. More significantly it offered a personalised and non-coercive support and engagement process (designed by me) to help people return to work, instead of a system that forgot about the disabled for years at a time once they passed the incapacity assessment. These are positive steps forward.

However, ESA also has a new assessment to determine people’s eligibility and this work capability assessment (WCA) is causing increasing concern. Such assessments are very tricky to get right and sensibly the government set out to trial it for around 18 months before the planned application to the 2.5m existing claimants of incapacity benefits, due to start this autumn.

The new test has seen far fewer people being deemed eligible than was expected. Among new claimants, just over a third of claims undergoing the WCA assessment were passed. This was about 20% fewer than expected. Meanwhile, increasing numbers of anecdotal cases were coming to the fore suggesting serious problems with the test. Citizens Advice has highlighted serious concerns with the test and its implementation, and estimates that among those undergoing the process around one person in five is seeking help from them.

Similarly large numbers of those being found fit for work under the WCA test are appealing and reports suggest that in some 70% of represented cases the appeal succeeds, as well as 40% of cases where the claimants represent themselves.

Signs that the government is aware of problems are shown by two significant changes to the assessment introduced in the last three months, concerning dealing with those with acute mental health problems and those about to receive chemotherapy. Furthermore, Michael Harrington is to undertake a review so that the process is transparent and people are treated fairly.

It goes without saying that the disabled community is both outraged and scared, and the government is not doing itself any favours. The statements made by George Osborne, about getting people off incapacity benefits and on to lower-value unemployment benefits, clearly lead disabled people to conclude that the aim is to save money rather than get people into the right place for appropriate help and support.

The deeper concern here is that all this will undermine ESA itself, as it will make it almost impossible to get people on ESA to take work, because they will fear that they will never be able to get back if things go wrong. Also, a large number of people with significant health problems will be moved on to jobseeker’s allowance (JSA), which is designed for those who are job-ready and offers no help with condition management and no engagement and support from advisers for at least six months. In contrast, those people on ESA receive tailored, individual support programmes from day one.

This will clog up the JSA system and delay appropriate support to these groups, delaying rather than enhancing a return to work. Somewhat unbelievably, the government is not tracking those who fail the WCA test to see what happens to them; are they claiming JSA, getting work or disappearing from the benefit system entirely?

This isn’t a party-political issue. The process and concerns it raises straddle the old and new government. Rather there is a deep issue here of making sure the process is working before it is unleashed on the 2.5m claimants of incapacity benefits. The recent changes to the WCA process and the newly announced review need to be assessed in the field to check that they have improved matters, and the assessments of MS and Parkinson’s disease under the test also need to be checked. This means delaying the reassessment of existing claimants under the new ESA regime. Not only this, but the tracking of WCA failures needs to be undertaken to gain insight into what is happening to them.

Finally, the potential to fast track those with health problems but not deemed eligible for ESA, in order for them to gain access to earlier support under JSA, needs to be considered. The worry here is not that people are going to lose £25 a week in benefits inappropriately, or that unnecessary stress will be placed on ill people as they fight to keep the support they deserve, but that the haste and claims of huge welfare savings will undermine rather than enhance the goal of helping disabled people into work.

In the longer term, closing the gap in benefit rates between ESA and JSA would help remove much of the mutual suspicion of “gaming”, either by government to get people off ESA or by claimants to get on to it.

Disability Activist Gets Pub Access Law Passed In Scottish Parliament

July 5, 2010

A disability activist from Edinburgh has succeeded in getting an amendment passed in the Scottish Parliament that will require new pubs to show how accessible they are for disabled customers when they apply for a license.

The law is something of a milestone in a long campaign by wheelchair user and activist Mark Cooper for a comprehensive listing of pubs that have disabled toilet facilities in the city.

The amendment was added to the added to the new Criminal Justice and Licensing Act through the efforts of Labour MSP George Foulkes and Capability Scotland, and was passed on Wednesday.

It’s the result of a Facebook campaign by Cooper which he started after a night out with friends last year.

“I was out for a drink with friends at a pub” says Cooper. “We chose it because it had flat access, so we thought it would have disabled toilets. I got to the point in the evening when I had to use the toilet, then found out that it was up some stairs. I had to leave the pub and my friends and find a pub with disabled toilets.”

Cooper was invited to speak at the council about his experience, and asked to present a petition. With just a few days before the meeting, a friend suggested he start a facebook page called Barred!
When four hundred people joined in just a few days, Cooper says he was encouraged to take the campaign further.

“Because of my success in Edinburgh, I approached Capability Scotland and asked if we could take the campaign to the national level” says Cooper. “I’ve continued to get messages from impairment groups across the country saying they’ve had similar problems because of poor information.”

Labour party activist Kezia Dugdale, who worked on the amendment for MSP George Foulkes, admitted that many pub buildings in Edinburgh present a particular challenge for conversion to provide disabled access. “We knew it was going to be really hard to get licence holders to change their facilities, as many of the buildings are old and hard to convert.” She says that the new law doesn’t automatically require pubs to change their facilities, but it does require them to complete a compliance form showing what disabled facilities they do or don’t have.

However, Susan Clark of Edinburgh City Council licensing board said that there were some flaw with the new legislation that would need to be addressed. “Only applicants for new full premises licences need give this assessment, not new provisional licences” she said. “If someone wanted to avoid applying, they could take just out a provisional licence.” She also said that the law only applied to new premises, not to the nearly 2000 premises which already have licenses in the city.

Clark said that the licencing board had already begun coallating information about the disabled facilities in pubs and bars in the Capital – and had been doing so since February 2008, before Mr. Cooper launched his campaign. An update on the audit is expected at a meeting at the City Chambers next Monday – but with only eight licensing officers working in pairs across the city, it may still be sometime before a comprehensive list of accesible pubs is achieved.

US Scientists Creating A Car For Blind Drivers

July 5, 2010

US Scientists and the National Federation of the Blind are developing a car for the blind and will present a prototype next year.

The vehicle will be fitted with technology that allows a blind person to drive independently, the NFB and Virginia Tech University said.

Non-visual aids include sensors indicating turns in the road via vibrating gloves.

Puffs of compressed air on the face will alert the driver to obstacles.

Other aids to be fitted include a vibrating vest to give feedback on speed and a steering wheel with audio cues and spoken commands indicating the car’s direction.

Exploration

Last year Virginia Tech turned a beach buggy into an experimental vehicle for blind drivers.

They used sensor lasers and cameras to act as the eyes of the buggy.

The model to be presented next year will be a modified Ford Escape sport utility vehicle, the NFB announced.

“We’re exploring areas that have previously been regarded as unexplorable,” said NFB president Marc Maurer.

He added that projects like this car was changing people’s perception of the blind.

“We’re moving away “from the theory that blindness ends the capacity of human beings to make contributions to society”.

Mr Maurer said he started talking about a car for blind drivers ten years ago.

“Some people thought I was crazy,” he said.

The prototype is expected be be publicly tested by a blind driver on the Daytona race track in Florida next January.

Wimbledon 2010: Wheelchair Doubles Results

July 5, 2010

Robin Ammerlaan claimed his third Wimbledon wheelchair doubles title as he and Stefan Olsson beat Stephane Houdet and Shingo Kunieda.

The Dutchman and his Swedish partner worked hard for a 6-4 7-6 (7-4) victory over Frenchman Houdet and Kunieda from Japan, the tournament’s top seeds.

Women’s world number one Esther Vergeer won her second women’s doubles title.

Vergeer and fellow Dutchwoman Sharon Walraven beat Britain’s Lucy Shuker and Daniela di Toro of Australia 6-2 6-3.

Ammerlaan, who won the title in 2007 and 2008 with compatriot Ronald Vink, and first-time winner Olsson held their nerve superbly against the top seeds, who had won at both Melbourne and Roland Garros earlier this year.

Wheelchair winners hail ‘perfect partnership’

The Dutch/Swedish pair trailed 3-1 early on but recovered well and Houdet lost his serve in the ninth game to give them a 5-4 lead. An ace by Olsson and a neat volley at the net from Ammerlaan helped them take the set.

Again Houdet and Kunieda, both previous winners of the Wimbledon title, went ahead 3-1 in the second set but Houdet was broken again and Ammerlaan held his serve to level the match at 3-3.

In a tense encounter with both teams playing some top-class shots, it came to a tie-break and a Houdet mis-hit handed the initiative to his opponents and the Swede hit a forehand winner into the corner to clinch the win, much to his delight.

“It’s hard to explain in words – it’s awesome,” he told BBC Sport. “This is one of the biggest tournaments in the world and to win it against Stephane and Shingo is one of the proudest moments of my career.

“We knew we needed to keep to our game plan and we played well on the important points.”

To win it against Stephane and Shingo is one of the proudest moments of my career.
Stefan Olsson

Ammerlaan revealed that he and Olsson had lost in a practice match to Houdet and Kunieda on Friday so they were keen for revenge.

“We just wanted to play our game and not adjust to our opponents and I think it worked. We just played some steady tennis,” he added.

“As a team we both like to play at the net and the baseline but I also think my experience helped Stefan to be calm at the key moments.

“We all know each other well and we know what to expect and that they will play a lot of top-spin but the ground was firm and the ball was bouncing high so we just went out to attack and go for the middle of the court.”

“To win another Wimbledon at the age of 42 is special.”

In the women’s final, Vergeer and Walraven, who were playing only their seventh tournament together and lost in the decider at Roland Garros, were just too strong.

Dutch pair describe ‘amazing feeling’

Di Toro and Shuker, who were beaten by Vergeer and compatriot Korie Homan in last year’s final, battled well early on but Shuker missed a simple-looking smash which put the Dutch pair 4-2 up and in control.

Errors started to creep into the British/Australian partnership’s game and they were soon a set and a break down.

Trailing 5-3 in the second set, di Toro hit a shot long to give the Dutch duo their first match point and a rasping Walraven forehand on the next point had too much power for Shuker to return.

“I’m really proud to have won another title here,” Vergeer told BBC Sport afterwards. “Because I was here last year I didn’t think I would be nervous today but I was at the start. However, after a couple of games we started to play well and take control.

“It feels different to last year because I have a different partner and it is also my second time here but the whole atmosphere here makes it so special. “

But a downcast Shuker was keen to put the defeat behind her.

“I didn’t play well at all and I’m really disappointed,” she said. “Nothing worked today and I really struggled so I just have to forget about it and move on.”

Lucy Shuker Reaches Wimbledon Wheelchair Doubles Final

July 3, 2010

Britain’s Lucy Shuker and Daniela di Toro of Australia battled hard before securing a place in Sunday’s women’s wheelchair doubles final at Wimbledon.

The pair beat France’s Florence Alix-Gravellier and Jiske Griffioen of the Netherlands 7-6 (7-4) 3-6 6-3.

They will meet the strong Dutch pair Esther Vergeer and Sharon Walraven in Sunday’s decider.

They defeated their compatriot Aniek van Koot and Annick Sevenans of Belgium 6-0 6-3.

Shuker and di Toro, who lost to Vergeer and Korie Homan in the final of last year’s inaugural competition, held their nerve after a tense match which included a 20-minute break for repairs to Griffioen’s wheelchair.

They trailed 4-2 in the first set before winning the next three games but both Shuker and Di Toro then lost their serves while serving for the set and Griffioen and the recently married Alix-Gravellier capitalised to take the set to a tie-break.

After missing their earlier chances for the set, Shuker and Di Toro edged ahead in the tie-break and closed it out to lead.

Griffioen and Alix-Gravellier came back into the match in the second set, going 4-0 up but with the Dutchwoman serving for the set at 5-2 and 15-40 down, she needed work done on the footplate of her chair.

The break affected Griffioen’s concentration, and on the resumption she lost her serve but redeemed herself with a winner on the Di Toro serve in the next game to break her and level the match.

The pairs exchanged breaks early in the third set but Griffioen served two double faults in the seventh game to put Shuker and Di Toro 4-3 up. Shuker then held to put the pressure on the Alix-Gravellier serve.

The Frenchwoman netted at 15-30 to give last year’s beaten finalists two match points and Shuker sealed the win with a delightful smash.

“We made hard work of the first two sets but then in the third I made a conscious effort to move better and push more and see the ball and not get caught and it worked,” Shuker told BBC Sport afterwards.

“We’ve prepared well and we know we will have to play well against Esther and Sharon in the final if we are to have any chance but I’m looking forward to it.”

Vergeer and Walraven, who lost out in the doubles final at Roland Garros last month, were always in control of their semi-final, winning the first 10 games of the match with Walraven showing a delicate touch at the net.

Sevenans and van Koot finally got onto the board but it was not long before Vergeer and Walraven wrapped up the victory.

“I’m pleased with the first set and a half – we were very solid and controlled it and it was a good feeling,” said Vergeer.

“In the last couple of games we stopped moving and they started to play more persistently but overall I am happy.

“We are still getting to know each other as a pairing but every time we play we are learning more and that is good.”

BBC Newsreader Allan Robb Dies Aged 49

July 2, 2010

The Guardian reports:

Former BBC Radio 5 Live newsreader Allan Robb has died at the age of 49. Robb, who presented Radio 5 Live’s midday news and also worked on Radio 1’s Newsbeat, had multiple sclerosis.

Source: Nicky Campbell

Very sad news.

Two NI Special Needs Summer School Schemes Restored To Two Weeks

July 2, 2010

Two Education and Library Boards have fully reinstated summer schemes for pupils with special needs.

Budget constraints meant the Western and Southern boards had cut the schemes down to one week, but they will now be held over two weeks as in previous years.

The cutbacks caused an outcry among parents who said they relied on them.

Education Minister Caitriona Ruane said she discussed the schemes with board representatives on Thursday.

“I welcome the decisions from both boards to fully reinstate the schemes to two weeks with transport provided,” she said.

“I know that parents and the children involved will also welcome this good news and look forward to enjoying the schemes.”

Continue reading the main story

The SELB and WELB hope the public understands the challenges of finding the very significant savings

Boards’ joint statement

In a joint statement, the WELB and SELB said that after members met on Wednesday to discuss concerns raised about the schemes, they agreed to restore free transport.

“Following further discussions this morning involving the education minister and senior Department of Education officials, it has been decided that the Special School Summer Scheme will be run for two weeks this year in both the SELB and WELB areas, with transport provided,” they added.

‘Unprecedented pressures’

“Both boards continue to emphasise the responsibility placed upon them to live within their budgets.

“This, combined with the lateness of their allocations has created unprecedented pressures.

“The SELB and WELB hope that the public understand the challenges of finding the very significant savings which will have to be implemented across services.”

The South-Eastern board had also cut its scheme; it is expected to release a statement about its plans on Friday.

Earlier, the North Eastern Education and Library Board said its special needs schemes were “operating just as they have in previous years”.

In a statement, it said: “At no time did the board consider cutting them back.”

It said that 372 young people had registered to attend the schemes this year.

Vi Fit- Wii Fit For The Visually Impaired

July 1, 2010

Emma at the BBC Ouch! blog writes today:

The Wimbledon wheelchair tennis male and female doubles tournaments start tomorrow and continue until 4 July. This year, the UK is represented by Lucy Shuker and also taking to the court will be world number one Esther Vergeer.

This, plus all the hype surrounding Andy Murray’s bid for victory has doubtless inspired thousands of us to dig out our rickety racquets and join the local tennis club. If your blind like me and have tonnes of enthusiasm coupled with zero chance of ever hitting the ball, then a new accessible computer game may be just what you are looking for.

ViFit is a project which aims to increase visually impaired people’s activity levels by developing games which are based on the Wii Fit model. So far there are two to choose from, bowling and tennis. Both are free and available to download directly from the website’s homepage.

Once installed, the games are played using a PC with Bluetooth connectivity and a couple of Wii remotes.

Helpfully, blind technology expert Jonathan Mosen has created an extensive and practical audio demo encompassing both games. To listen, click here and find an FTP download under the Mosen Explosion Downloads and Podcast heading.

If wheelchair tennis is more your bag, you can catch coverage of the Wimbledon tournaments between 2 and 4 July on the Red Button.

Speaker Bercow Laughs Off Height Remark

July 1, 2010

Commons Speaker John Bercow has laughed off alleged remarks about his height, saying he is “entirely untroubled”.

The comments come after Health Minister Simon Burns reportedly called Mr Bercow a “stupid, sanctimonious dwarf” during a debate on Tuesday.

The Speaker told MPs on Wednesday it had been suggested he had been “short with ministers”, joking: “I’ve always been short.”

Mr Bercow, who has been in the job for a year, is 5ft 6in tall.

The minister’s remarks were allegedly uttered – though, not printed in Hansard, Parliament’s written record – after he was told to face forward when speaking, rather than looking back towards fellow coalition MPs.

‘Low-grade abuse’

Speaking later, Mr Burns did not deny the comments, saying: “We will leave it at that. I’m saying I have nothing to say.”

In her Twitter page, Mr Bercow’s Labour-supporting wife Sally wrote: “So much for the ‘new politics’.”

She also accused the minister of “low-grade abuse”.

During points of order following prime minister’s questions on Wednesday, Mr Bercow said, to laughter: “The honourable gentleman suggests I’ve been short with ministers. I’m not sure about that, but what I would say to the honourable gentlemen in the House is that I’ve always been short.

“And I’m entirely untroubled by the fact. It is probably as well.”

Budget 2010: Cuts Will Leave Disabled £300 Worse Off

July 1, 2010

The pensions minister, Steve Webb, has revealed that the decision to link benefits to the Consumer Price Index (CPI) rather than the Retail Price Index (RPI) will cost those surviving on disability living allowance and associated benefits several hundred pounds a year.

The information was published in response to a parliamentary question asked by Yvette Cooper, a former pensions minister. It shows that the top rate of disability living allowance, the main benefit for disabled people, should have risen to £83.45 a week by 2015 if pegged to RPI. Pegged to CPI, it is forecast to rise to £79.90. Carer’s allowance, which is also claimed by many disabled people, is forecast to be £60.35 a week, against £62.95.

Mike Bush, policy head at disability charity Scope, said disabled people could ill afford the cut to their benefits, especially since disability allowance is already “probably lower than it should be”. He said: “This could be the difference between disabled people participating and not participating in society.”

As well as losing out from their disability payments, many disabled people also receive incapacity benefit, which will also rise more slowly linked to CPI. Mr Bush said the disability living allowance was the only financial recognition that disabled people have extra costs to bear.

The charity fears that disabled people could be squeezed even more after the Chancellor, George Osborne, indicated this week that he was looking to achieve further savings from the employment support allowance (ESA) – which is replacing incapacity benefit – and housing benefit. He has already stated that new people applying for the allowance will face tough medical tests.

Many will also be hit by a reduction in the employment support allowance, which yesterday’s figures indicated would have been £75.80 by 2015 under the RPI measurement, rather than £73.25 under CPI.

David Congdon, at learning disability charity Mencap, said many people with learning disabilities “do not get the opportunity to work”. He added: “These are very important benefits. Disability living allowance acts as a safety valve for people who may not get other benefits.”

Celebrating Holland- I’m Home

June 30, 2010

Thanks to @funkyfairy22 for sending me this on Twitter.

A follow up to Welcome to Holland, by Cathy Anthony
a parent, advocate and Executive Director of The Family Support Institute in Vancouver

“I have been in Holland for over a decade now and it has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned. I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty. In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay. Today, I can say how far I’ve come on this unexpected journey. I have learned so much more, but this too has been a journey of time.

I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans changed, like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring – Holland wasn’t so bad!

I think that Holland is used to wayward travellers like me and grew to become a land of hospitality, reaching out to welcome, assist and support newcomers. Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and, at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it Home.

I have become a world traveller and discovered that it doesn’t matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn’t planned yet I’m thankful, for this destination has been richer than I ever could have imagined!”

Welcome To Beirut- Autism Essay By Special Mother

June 30, 2010

Thanks to @dontplaymepayme for sending me this on Twitter:

WELCOME TO BEIRUT by Susan F. Rzucidlo

(Beginner’s Guide to Autism)

“I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this..”

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM”!

There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping “Life long diagnosis” and “Neurologically impaired”. Bullets whiz by “refrigerator mother” ” A good smack is all HE needs to straighten up”. Your adrenaline races as the clock ticks away your child’s chances for “recovery”. You sure as heck didn’t sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life, well you tried, well, you weren’t caught too often. Hey! you’ve never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She’ll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You’re insurance company refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn’t sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful. Don’t get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

I think this is beautiful, and can be applied to any special parent and/or any special child.

An Anonymous IB Claimant Tells The Guardian They Are Scared

June 30, 2010

Multi-organ failure left me disabled but I am afraid that the government’s plans to slash the welfare bill coupled with ‘efficiency savings’ at my council could leave me with no support

The government’s plans to cut the welfare bill by taking as many people as possible off incapacity benefits might be reassuring for the financial markets but for me is a disaster.

Let me explain. Some years ago I had multi-organ failure that resulted in brain damage. This left me with no sense of balance – it means I cannot walk without an aid and even when I do I walk painfully slowly. My fine motor skills – the ones that allow your fingers to do things with precision – are totally devoid, and my voice, if it sounded vaguely intelligible it would be an improvement.

I am on the highest rate of disability living allowance, thanks in no small part to my welfare rights adviser, who is fearful of his own job security. He has, after a prolonged battle, successfully argued that I don’t need to attend job interviews or the harsh new employment and support allowance (ESA) medical interviews to assess my capability to work (which have been discredited in a report by Citizens Advice and leading disability advocacy charities).

Incapacity benefit was replaced by ESA in 2008. Less than 10% of claimants now receive the higher rate of ESA, for those deemed genuinely unfit for work. After a battle, I am one of the few on the higher “support” rate. The test is so harsh I hear it is forcing people to attend job interviews, with the threat of their benefit being cut altogether if they don’t (or can’t) look for work. And now the government is intending a further crackdown.

Recently, I have finally got the rehabilitation help I need, thanks to my new “personalisation” budget – of which I am one of the first recipients and a test case.

This rehab care is the kind where I am helped to regain lost skills, practise speech exercises and the carers are prepared to take risks and help me walk about rather than just do the bare minimum domestic duties such as cooking and washing. I received this rehab funding primarily because my neurological consultant considered it so important to my rehabilitation. He wrote a letter to the awarding panel explaining that I needed specialist support workers trained in brain injury for half of my care. I previously had one – risk adverse – agency providing all of my care.

In my experience, many carers do not seem to have received any specialist training and their main concern seems to be with signing the book so they get paid. When I would go for a shower they were under strict instructions: if I were to fall, watch me fall rather than risk injuring themselves.

When my case went before the adjudication panel the local authority funded the extra hours of specialist care on the understanding that the Independent Living Fund (ILF), a centrally funded body, would make up the shortfall and eventually fund all the specialist care, leaving the local authority with only the domestic care to pay for. Ultimately, then, the local authority would save money. But now I am told that the ILF has rejected my claim outright.

The ILF has run out of money. Only three months into the financial year it has closed its books to all new claims regardless of need.

Now I am afraid that the local authority, in order to meet “efficiency savings”, will attempt to return me to my previous inept care provider. I have just received a phone call today from social services asking me to call them back. Obviously, they have heard about the ILF. My funding, which has only been in place for a couple of months, is now seriously in jeopardy.

I had a job. I was very good at it. I was a manager working in the health service. I was responsible for a team of staff and volunteers.

I miss feeling useful and making a contribution at work and, above all, I miss the interaction with other people. Instead of a carefree life I have only concerns. Instead of a future I have only a past. I miss the spontaneity and the laughter of my old life. The frustration of sounding like a robot who has learned to speak English from a badly-translated guide makes me lose all sense of motivation. Mainly, my days are spent doing repetitive exercises and trying to write short stories on the computer, but typing is painfully slow due to a lack of fine motor skills.

Having struggled through the labyrinth to get benefits, I am scared of the further, even more difficult medical assessments that the proposed cuts might mean. And I am scared of having my benefits cut. The welfare budget is to be slashed and I fear that the trapdoor is already underneath me.

• The contributor has requested anonymity.

Review To Look At Fairness Of Incapacity Benefit Tests

June 30, 2010

The government yesterday announced an independent review of the methods used to assess the work fitness of those claiming incapacity-related benefits.

Disability charities say the current tests are too inflexible – failing to take into account the variation in long-term conditions.

The review will chaired by Professor Malcolm Harrington, who will produce a report by the end of the year in a bid to see if the assessments are fair and transparent .

The announcement came on the day that ministers said they were starting two pilots into reassessing 2.6 million existing incapacity benefit claimants. The government will start reassessing 1,700 claimants in Burnley and Aberdeen from October 2010, and then start – as Labour planned – a national process from February next year.

The assessments will try to determine whether claimants are in fact able to work or whether they need additional support or “unconditional help”.

Ministers also announced details of plans for how private companies should compete to run the new multibillion-pound contracts in getting millions of unemployed people into work.

The contracts will in many cases not give private firms any money until they have found work, with the fee rising probably after someone has stayed in work for six months, 12 months or even two years. Emma Harrison, director for A4E , the largest private contractor, said she was delighted that the government was merging the different welfare to work schemes into one work programme, saying it would cut time and the cost of bidding for many small contracts.

She said contractors were in discussion with banks to see if they would provide loans to cover the new regime of payment by results.

The welfare-to-work scheme, potentially costing about £3bn a year, will see providers paid almost exclusively by results and out of savings made from getting people off benefits, and payment would come after delivery.

Chris Grayling, the employment minister, said the reforms would help “break the cycle of benefit dependency that has blighted some communities”.

“We expect that our delivery partners should be able to demonstrate the capital strength to take on the risks inherent in an exclusively or heavily outcome-based approach where we seek to deal with the cases of millions of people on out-of-work benefits,” government advice says.

An internal government memo seen by the Guardian shows that thousands of Jobcentre staff are expected to be made redundant by next March.

The Public and Commercial Services union says the government’s actions were unprecedented as in the past frontline staff had only been let go in an economic boom – rather than in the depths of a recession.

PCS general secretary Mark Serwotka said: “When unemployment is still rising, it’s economically absurd to drive even more people out of work and sever the lifeline for thousands and thousands of vulnerable people in our communities.”

Mutual Carers

June 30, 2010

From today’s Guardian:

Annie Lowry with her son Ian Annie Lowry, 93, has cared for her son Ian, 54, since meningitis contracted as a baby left him with physical and learning disabilities. Photograph: Christopher Thomond

Annie Lowry is 93 and has lost her sight in one eye. Despite her age and failing health, she is still caring for her son, Ian, as she has for more than half a century.

Ian has had learning and physical disabilities since he contracted meningitis as a baby. He has undergone 10 operations on his legs and back, but his movement is restricted and he is anxious and withdrawn. At 54, he still needs constant support.

Although mother and son have a raft of support at their bungalow on the western outskirts of Sheffield, Annie is finding it tougher to cope. And she worries about what will happen when she dies. “It’s hard to come to terms with,” she says. “I feel badly for Ian.”

The Lowrys are one of tens of thousands of families that have cared for a son or daughter with a learning disability all their lives, saving the state billions of pounds. Now the parents are themselves increasingly in need of care and support, the question is: who is going to take over their role?

It is a question to which the government and wider society have given surprisingly little thought. We even have no real idea of the numbers involved. Yet local councils, which would be the first call for help when family care broke down, already know that the spiralling cost of learning disability services is one of the biggest headaches they face, accounting for £1 in every £4 spent on adult social care, and rising at an annual rate of at least 7%.

Numbers of learning disabled adults are soaring, simply (and happily) because they are living much longer than in the past. Only a few decades ago, a majority would have died by their 30s. Large-scale research in the US found that the median age of death of people with Down’s syndrome nearly doubled in just 14 years, from 25 in 1983 to 49 in 1997.

Researchers Eric Emerson and Chris Hatton, of the University of Lancaster, forecast that numbers of people with a learning disability will grow by 20% between 2001 and 2021. Growth among those over 60 could be as high as 50%.

This means also that care needs will grow exponentially: people with a learning disability tend to age earlier than average, and, studies suggest, are more prone to heart conditions, stroke, osteoporosis, mental health problems and dementia. One in two people with Down’s syndrome over 60 has dementia.

How many of these care needs are currently met by families? We do not know. English councils are under no obligation to collect figures for learning disabled adults living in the community and many of them are not in touch with services – not unreasonably, given that support for adults with mild or moderate disabilities who live with their parents is at best limited.

What figures there are make alarming reading. The Learning Disability Coalition (LDC) estimates that six in 10 learning disabled adults live with their families and receive most of the care and support they need from them. On the basis that there are an estimated 828,000 learning disabled adults in England, this would represent some 500,000. Of these, 167,000 are thought to be living with parents aged 70 or over.

In Scotland, where the devolved government made policy on adults with learning disabilities one of its first priorities and ordered councils to collect proper numbers, 48% of learning disabled adults are known to live with their family carers. This is rather less than the LDC’s 60% – but would still imply that, in England, 140,000 are living with parents aged 70-plus.

Despite such big numbers, older people with learning disabilities have been neglected by policymakers. A commitment in the 2001 Valuing People white paper to ensure co-ordination between learning disability and older people’s services was largely unfulfilled. Equally neglected was a call by the charity Mencap in 2002 for a systematic approach to defusing the “housing timebomb” of learning disabled adults living with their parents. Eight years on, the timebomb ticks ever louder.

The Foundation for People with Learning Disabilities, a voluntary organisation that has pioneered work on the needs of this age group, says growing numbers of learning disabled adults are now themselves acting as carers, for their parents, in return for the continuing support they receive from them.

Molly Mattingly, assistant director at the foundation, says: “It’s vital that people with a learning disability are adequately supported by services in their role as carers. They should be helped to plan for the future so that they can cope should something happen to their parent. But this does not mean living separately before they are ready.”

In Sheffield, Ian Lowry is having to do a lot more to help his mother – “reaching up for things”, as she puts it – and is becoming slowly more confident at going out on his own and using local buses. His sister Sandra, who lives nearby, visits every day and other support includes six hours a week of domiciliary help through a council direct payment.

Annie is particularly complimentary about a carer’s support worker provided by the charity Crossroads Care. “She is wonderful, absolutely wonderful,” she says. “She takes me shopping; we have a good chat.”

The Lowrys moved from Carlisle six years ago to be near Sandra. But Ian has found it hard to settle. “When we first came, he didn’t go out for 12 months,” says Annie. It was a testing time: Ian’s father, Edwin, a former stonemason, was still alive but was ailing and having distressing fits. Annie was caring for both men. “I had the district nurses coming in at night to give me a rest,” she recalls. “I wasn’t getting much sleep.”

Despite Annie’s sight difficulties, she still manages the jigsaws that she and Ian like to do, as well as bingo and dominos at social events run by the vibrant Sheffield Mencap & Gateway group for families affected by learning disability. “The main thing for him is boredom; we are a little bit isolated, Annie says.

“But I should thank the Lord for what I have had. There have been ups and downs, but it’s fighting and not giving in that’s important. When you look around, you see people a lot worse off than yourself.”

The Roffeys

Audrey and Andrew Roffey rely on each other. Audrey has cared for her son all his 49 years, but now it’s his turn to help care for his mother as glaucoma is causing her eyesight to fail.

The Roffeys live in Bromley, south London, where Andrew, disabled from birth, is an active member of the local partnership board for learning disability and co-chair of the local mutual caring support group. The group works with 17 other families in a similar position.

As a carer for Audrey, who is 80, Andrew makes tea and coffee, helps with meals, washes up, operates the washing machine, assists her in and out of the bath, and accompanies her on the bus. His role is officially recognised by payment of carer’s allowance of £53.90 a week.

Audrey Roffey and her son Andrew Audrey Roffey, 80, with her son Andrew, 49. Photograph: Felix Clay

He used to have a part-time job at a local pizza parlour, where he worked for nine years, but the business closed when the lease expired. Previously, he had worked full-time as a hospital kitchen porter and, for about 10 years, in a bakery.

Losing his job has knocked Andrew’s confidence. “It was a big shock to me, but I’m looking for something else,” he says. “He’s gone backwards in the last six months,” says Audrey. “He doesn’t like travelling, or crowds, or lifts or tall buildings. He gets panic attacks.”

Audrey used to work in personnel in the oil industry and Andrew was born in the Hague. He attended “about 20 or 25” different schools as the family moved around. In 1972, following divorce from Andrew’s father, Audrey moved to Bromley with her then two sons. Andrew’s brother, Christopher, was later to take his own life following the death of his wife.

Andrew enjoys using the computer and has a girlfriend, who is also learning disabled and is a mutual carer for her father. Andrew’s literacy skills are limited, however, and Audrey needs to ask Bromley Mencap support workers to help with reading letters and documents.

Audrey is emphatic that Andrew, who had an unsuccessful spell in sheltered accommodation, could not cope on his own. Power of attorney for him is held by Christopher’s parents-in-law, who live in Kent and will take responsibility in the event of her death. “I couldn’t manage without Mencap,” says Audrey, “but we couldn’t manage without each other.”

The Kelseys

The Kelsey family has downsized from a three-bedroom house to a ground-floor flat in the Norton district of south Sheffield. It’s all part of the planning for the day when daughter Sandra will be on her own.

Doreen, 83, and her husband Lewis, a former engineer, have cared for Sandra, who has Down’s syndrome, for almost six decades. Although they know she must prepare for independent living, it is still a wrench after so long together.

“I do tend to be a bit over-protective sometimes,” admits Lewis, a sprightly 87, “but it’s what we have always done.” Sandra chips in: “Sometimes I feel like he is smothering me a bit.” But Lewis counters: “That’s a natural father’s reaction.”

The banter is typical of this evidently warm family unit. Sandra, 58, appears self-assured and articulate – she describes herself as “daunted” by what lies ahead – but she has poor literacy and household budgeting skills, and freezes when faced by anything involving numbers.

Lewis, Doreen and Sandra Kelsey Sandra Kelsey, 58, is cared for by her parents Doreen, 83, and Lewis, 87. Photograph: Christopher Thomond

The only paid job she could get after leaving special school was a shortlived role counting mops in a Remploy sheltered factory. Failing at that, she was declared unemployable. She later enjoyed working in the canteen of a sheltered workshop, but when it was contracted out to a commercial operator she could not keep up with the faster pace.

For much of Sandra’s life, the Kelseys have got by without any outside help. As far as they are aware, she had no social workder for 30 years after leaving the canteen job. But things are very different now, and they are liaising closely with Sheffield’s older families planning project, a rare example of co-ordination at local level to address the agenda.

“We didn’t know who to go to, or where to go before,” says Doreen. “Then we started to get the support we wanted for ourselves.”

The Patels

Nimesh Patel lives with his mother, Urmila, in East Finchley, north London. He is a big Arsenal fan, loves music and goes to a lot of organised activities, but gets very agitated when things are not straightforward and there is any uncertainty.

Last year, Urmila, 68, had to have open-heart surgery. It could have been a traumatic time for mother and son, but thanks to an emergency support plan put in place by local charity Barnet Mencap, the two of them came through.”We had to make sure he didn’t know about it,” says Shobha Parmar, the charity’s Asian family support worker . “As soon as he heard the word ‘hospital’, he would panic.”

A placement was arranged for Nimesh, 42, while his mother was away, and care workers were drafted in to look after him during the three weeks Urmila was confined to bed on her return home.

Nimesh and Urmila Patel Urmila Patel, 68, cares for her son Nimesh, 42. Photograph: Linda Nylind for the Guardian

The operation and the care support package for Nimesh was good, but the experience has made Urmila worry about the future. “I can look after him if I live longer than he does. I will know he is all right,” she says. “I think a lot about afterwards, what’s going to happen, if that isn’t the case. I hope he can stay here if somebody comes in to look after him.”

Urmila, who was widowed in 1989, owns the family’s modern terrace house, but she and her son rely on benefits and direct payments to get by. She has a second son, who lives elsewhere in London, but says he has his own life and doesn’t want to make demands of him. Nimesh has two Gujarati-speaking support workers, each for seven hours a week, and a third support worker provided at some other times. Barnet council also funds 30 nights’ respite care annually. “I don’t think every family is this fortunate,” says Urmila.

Parmar confirms this. As word spreads of her work with Asian families with a learning disabled child, more are coming forward who have had little or no support from council or charity services. More than 20 now attend a regular coffee morning that she runs.

“In just two months I have had seven new [Asian] families registering with me,” Parmar says. “One came yesterday: the mother is 75 and the daughter 50 and they didn’t know anything about the service before.”