London Service for Autism Sunday: Remembering 60 million people with autism

Government Ministers, parliamentarians of all parties, local councillors will join parents, carers, children and adults with autism and Asperger's Syndrome at the London Service for Autism Sunday on 14th February at 11.15 a.m.

At All Saint's Church, Inman's Row, Woodford Wells, IG8 0NH - in the London Borough of Redbridge. The service at All Saint's Church will remember over 60 million people with autism around the globe.

Autism Sunday is the brainchild of British parents and carers Ivan and Charika Corea who have a 14 year old teenager with autism, Charin Corea. They launched Autism Sunday - the International Day of Prayer for Autism and Asperger's Syndrome in 2002 Autism Awareness Year in the United Kingdom. They also initiated Autism Awareness Year, supported by 800 British organisations. It was the first ever occasion of partnership working on autism on such a large scale.

What started as a small acorn of an idea hatched in their front room in 2002 has turned into a massive worldwide event - Autism Sunday is now the first major disability event of the year, observed by many nations. They launched the Autism Awareness Campaign UK in 2000 and set up a new autism charity for a new generation, the UK Autism Foundation in 2008 - they are urging support to build a state of the art Autism Centre in London, an autism school and initiatives to help the poor.

The Prime Minister Gordon Brown has supported Autism Sunday 2010, he sent his warm personal wishes to mark Autism Sunday 2010. Britain's Prime Minister has sent his good wishes for an enjoyable and successful occasion. His wife, Sarah Brown also sent her best wishes for the event so has Her Royal Highness, Camilla, the Duchess of Cornwall.

David Cameron, Leader of Her Majesty's Government has also thrown his weight behind Autism Sunday. Mr. Cameron said: 'I would like to express my support for Autism Sunday. As many as one in a hundred people could be affected by some form of autism, and it is important that we recognise and raise awareness of the difficulties and challenges that they can face.' David Cameron sent a message wishing a successful event for Autism Sunday 2010.

Cheryl Gillan MP, the architect of the 2009 Autism Bill in the United Kingdom, wrote to Ivan Corea supporting Autism Sunday. Cheryl Gillan said: 'I am sure that this event will be a great success and will provide a great support to many people. I would like to send my very best wishes.'

Dawn Primarolo, Minister of State for Children and Young People at the Department for Children, Schools & Families has sent her best wishes for an enjoyable event.

The Mayor of London Boris Johnson hopes that the event is a great success and enjoyed by all. The Baroness Sandip Verma of the House of Lords in the Palace of Westminster, who is the Shadow Minister for Children, Schools and Families and also the opposition whip Universities,Innovation and Skills has sent her best wishes for Autism Sunday.

Ivan Corea, Co-Founder of Autism Sunday said: 'I urge autism campaigners around the world to use Autism Sunday as a platform to lobby hard on the serious education and health issues connected with autism and Asperger's Syndrome. Autism Sunday is now a massive worldwide event and it is an opportunity - to press for genuine and lasting change - for parents, carers, children and adults with autism and Asperger's Syndrome. I am urging people all over the world to write to world leaders asking them to do more for autism and Asperger's Syndrome and provide better public services in education, health, specialist speech therapy and respite care. '

He added that the recession has hurt families and people with autism and Asperger's Syndrome. Many are below the poverty line and need urgent help and support.

Janice Cox from Western Massachusett, a mother of a young boy with autism from the United States, has released a series of films on youtube to mark Autism Sunday 2010. She was also interviewed on prime time US Television on her autism poetry and Autism Sunday.

To view the Janice Cox Film 'Thing called Autism' on youtube click here

For further information on Autism Sunday:
www.autismsunday.org
www.autismsunday.blog.co.uk
www.ukautismfoundation.org

To support the work of the UK Autism Foundation who are campaigning on behalf of poor families with autism and Asperger's Syndrome:
www.justgiving.com/ukautismfound

UK Autism Foundation

Woodford Business Centre
113-115 George Lane
South Woodford
London E18 1AB
United Kingdom

Telephone: 020 8989 4810
Fax: 020 8989 5164
E-Mail: ukautismfoundation@hotmail.co.uk
Website: www.ukautismfoundation.org

Charity Registration Number: 1124511

Anger as deaf group lose parking rights

For nearly 40 years hundreds of deaf people have used a council-owned car park to be able to access a vital Norwich service.

However, members of the Norwich Deaf Community Centre have now been told by council officials they can no longer park there.

Now, calls are being made to reopen an unused underground 80-space car park nearby, to ensure users of the centre can still park there.

The car park belongs to the Norfolk County Council-run Vauxhall Centre, in Johnson Place, off Vauxhall Street, but through a “gentleman's agreement”, users of the adjacent deaf community have been able to park there.

But new regulations only allow them to use the car park in the evenings and at the weekends.

The changes mean the deaf centre users now have to either park on the nearby roads, many of which are for permit holders only, or use a public car park, the closest of which is thought to be the multi-storey in St Giles Street.

Peter Gosse, 80, vice president of the Norfolk Deaf Association who has set up a petition, said: “To tell deaf people who use the centre during the day who have physical or mobility problems that they cannot park there any longer and have to make their own way there, is a bit much.

“Most of the other people using the Vauxhall Centre are local people. I don't mind walking within reason but my wife has mobility problems and a lot of the deaf people are elderly.”

Up to 45 people use the centre every Tuesday for the Tuesday Deaf Club. Users also make use of the community centre almost everyday of the week. The deaf people come from anywhere in Norwich or up to 30 miles out of the city.

The Vauxhall Centre has historically provided day support for disabled people but last year branched out to become the site for one of the city's new SureStart Children's Centres.

The deaf community centre, meanwhile, is run by Deaf Connexions and although it is part of the same building, it has a separate lease and is run independently.

Sue Moore, Deaf Connexions manager, said: “We never had any rights to park there but they have let us out of kindness.

“Some of the users are not happy because they have got to walk a bit further or pay to park but the Vauxhall Centre has more people who are disabled and have mobility problems than what we do.

“We are trying to get the underground car park opened. It's such a wasted asset. Together with the Vauxhall Centre, we are willing to maintain it and keep it secure. There are 80 spaces there which could be used by staff and able-bodied people.”

Paul Bowerbank, county manager for sensory services at Norfolk County Council, said: “Many people who use the Vauxhall Centre have extremely limited mobility and therefore they must have priority to use our car park.

“The car park beneath the Vauxhall Centre is currently not in use due to safety concerns. In the past the facility has not been secure and we have had people sleeping rough there, arson attacks and abandoned cars left. At present, there are no immediate plans to re-open the car park.”

Norwich Evening News

Brambles Farm schoolgirl has high hopes for 2012 games

A SCHOOLGIRL’S chance meeting with a star Paralympian set her on the fast track to sporting success.

Wheelchair athlete Jade Jones was born without the top half of her right leg, yet has always refused to let her disability hold her back.

Nearly two years ago, Redcar-based sporting great Dame Tanni Grey-Thompson was special guest at a disabled school sports meeting Jade was attending.

She invited Jade, of Brambles Farm, to try wheelchair racing and the talented youngster hasn’t looked back since.

But to continue her sporting journey, she now desperately needs sponsorship to help with travel expenses.

Ormesby School pupil Jade, 14, has made rapid progress in the sport and currently lies second in the UK rankings, behind Paralympian Shelly Woods, and sixth in the world Under-16s category.

Training with Dame Tanni and her husband Ian has brought Jade on leaps and bounds since her first competitive race in Gateshead in May 2008.

She currently does 90 minutes of training six days a week, with conditioning and exercises every two days.

“Some days I can be out on the road for an hour, other days I’m sprinting. It’s hard work but I need to do it,” she said.

“When I’m racing, it’s a real adrenalin rush at the beginning. Then it’s all about using strength and technique.

“And when you win, you can’t describe it, really.

“My ambition is to win a gold medal at the Paralympics in London in 2012.”

Jade, who is also asthmatic, is very matter-of-fact about her disability, explaining how she was born with her knee effectively attached to her hip.

She said: “I used to have a false leg but I didn’t like it so I use crutches now.

“My right leg went down to where my knee was on my left leg.

“I had my foot amputated about four years ago after it started going limp. I sometimes tried to use it but once I fell and hit my head on a door frame, so the specialists at Great Ormond Street said amputation was the best option.

“I haven’t really let it affect me. I’ve tried to do as much as I can. Riding a bike’s about the only thing I couldn’t do. I’ve just tried to get on with it.”

Jade’s packed schedule will see her visit Switzerland at least three times this year, plus trips to meetings in Germany, possibly the Czech Republic and lots of domestic events.

“Last year, I was competing across the world and it’ll be even busier this year.

“Tanni has loaned me her wheelchair, but it’s getting to the events I need help with.

“I just want to try to get to as many as possible.”

Dame Tanni said: “She’s just got that spirit inside her. She’s committed and she wants to be the best in the world - that’s a pretty good starting point.

“I absolutely believe she’ll get to the Paralympics.

“It’s going to be lots and lots of hard work but if I can have any wish, it would to be sitting at the finish line in London in 2012, watching Jade Jones compete.”

Mum Beverly , who is Jade’s carer, as well as being mum to Lisa, 19, and Abbie, eight, says she’s immensely proud.

She said: “Throughout her life, Jade has just got on with anything that’s come her way.

“UK Athletics are aware of her success and potential but she was too young to be granted funding for this season, which is going to include competing nationally and internationally.

“We do get some help from Sport Aid and Sporting Chance, but this goes nowhere towards the amount of events she needs to enter.

“She is destined to achieve great success and I want to do anything I can to help her achieve her dream.”

To help Jade out, email bevboro2k8@hotmail.com

Evening Gazette

Telegraph: Letters to the Editor: Breaking the ME enigma

Telegraph: Letters to the Editor: Breaking the ME enigma (jointly signed by ME spokespersons)
Shortlink: http://wp.me/p5foE-2JX

Telegraph  |  06 February 2010
Breaking the ME enigma

SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their child’s illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery.

Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.

Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor
Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME

ME Agenda

Tanni Grey-Thompson goes back to her roots as she looks forward to life in the Lords

Why 20 years in sport and a past passion for politics are the perfect preparation for Tanni Grey-Thompson as she begins her new career as a working peer. 

Why is it that on the day of a momentous occasion for me, I always have stark reminders not to get above my station, and about what really matters? I spent Friday morning – on the day I was appointed a working peer in the House of Lords – driving to Durham, where Carys, my eight-year-old daughter, was competing in a swimming gala. She didn't win but competed really well.

In 1992, when I came back from the Barcelona Paralympics with four gold medals from track racing, the Lord Lieutenant of Cardiff said to my father: "She'll be in the House of Lords one day, you know." Strange how things work out really…

 

However, I suspect the politics professor I studied with as an undergraduate of that subject at Loughborough University will be a little taken aback by Friday's announcement given that my political aspirations took a back seat to a sporting career for 20 years.

It is a great honour for me to have been given my new role. For me, the crux of it will be about trying to effect positive change, some of it in sports – for which I will always have a huge passion – and some of it geared towards the lives of people with disabilities. But I also want to be involved with young people and wider debate on a host of other topics besides.

Twenty years in sport has given me a broad perspective on life, bringing me into contact with a variety of social issues, and with those experiences have come insight and knowledge.


Health is one debate that immediately jumps out, and not just regarding the many social problems surrounding disability. Change also needs to be instigated on issues ranging from assisted suicide and care in the home to the sporting legacy of London 2012 and the latest anti-doping regulations.

Effecting such transformation is no easy task and I plan to be very active in the discussions on all these subject matters and many more besides in my role as a cross-bench peer.

Engaging with young people is another topic that I have a strong connection with. Through my professional life as both an athlete, and latterly with organisations such as the Youth Citizenship Commission, I've seen first hand the power that sport possesses as one of the few vehicles that actually engages with young people and gets them interacting with each other and the communities in which they live.

Encouraging young people to integrate themselves with their peers, overcome prejudices, and seek out positive activities that will better not only their lives but the lives of those around them is one of the biggest challenges that modern society faces. I cannot wait to lend my voice to this challenge. Through discussion, recommendation and subsequent action, I'm certain that we can facilitate change that will benefit generations to come.

With hindsight, this new position sees my life come full circle, returning me to a field of interest where I first began as a young adult looking to make my mark on the world.

I won't profess to know every twist and turn of the political sphere, but I do know that my time in sport, plus the work I have done since retiring, has given me experiences and insights which have propelled me to this new position.

With the honour, however, will come the work. It is a working peerage, and I intend to be fully involved. That is perhaps the one deeply ingrained skill you learn from sport. Being naturally gifted at an aspect of life goes nowhere, without graft and hard work. My medals were built on hours of graft, often in a chair on rollers specially-made in the garage.

I thought I had a challenge defending four gold medals at the Paralympics but going into the House of Lords is probably the greatest challenge I will ever face. Nerves? Yes … too right. But that deep desire to help make positive changes that first drove me to politics as a student still burns as bright as ever.


I hope I can serve the country well, and I promise one thing – that I will bring the same passion and commitment to the chamber that brought success during my sporting life.

The Telegraph

MP Hails Massive £200,000 Boost for Pensioners Bus Passes

The Department for Transport has confirmed that Hastings Borough Council will receive a grant of £641,183 in 2010/11, an increase of 200,000, for the concessionary travel scheme. This follows a local campaign supported by Michael Foster MP to secure extra funding. 

The concessionary travel scheme was extended by the government in April 2008 so that senior citizens and disabled people could travel free in off-peak times not only on buses in their own area but throughout the whole of England. Following a campaign spearheaded by Michael Foster MP and Labour Councillors that was further extended to a 9am start in Hastings.

Michael Foster MP said:

"The free bus pass is a popular policy giving thousands of older and disabled people in Hastings greater freedom and independence. Our local campaign for extra funds has paid dividends and the confirmation of the extra £200,000 is fantastic news for the town.


“Free bus travel has been a great boost for many people but the Tories have suggested it may not be worth the money and could be scrapped if they win the general election. That would be a disaster for many elderly people in the town.”

Politics.co.uk

POLITICAL PARTIES 'ON COURSE TO FAIL CARERS

A national carers' charity today called on all political parties to recognise that they cannot deliver support for older and disabled people without the help of the country's army of unpaid carers.

The Princess Royal Trust for Carers estimates there are currently 6 million people across the UK who look after a family member who is sick, disabled or has a mental health or substance misuse problem.

This group saves the Government about £87 billion a year through caring at home and yet, according to the trust, none of the three main political parties has proposed how they will support carers in the next Government.

Carole Cochrane, chief executive at The Princess Royal Trust for Carers, said: "We are deeply concerned that the next elected Government could fail millions of unpaid carers. It is unacceptable that the three main parties have not made any clear indications about supporting carers or even if carers will be included in their manifestos.
 
"We support the principle of free personal care at home but the current Government's offer will not reach many of the families that we support.

"The National Carers' Strategy has laudable vision but, as our research uncovered, the NHS failed to spend 80% of its allocated funds on breaks for carers in 2008/09 as was intended. This must improve.

"David Cameron has discussed carers having the right to breaks but carers need to know how much respite they are entitled to and who is eligible.

"Breaks are one important part of the picture; specialist information, respect from doctors and other health professionals, and practical help to continue caring are also vital.

"The Conservative Party is also offering everyone opt-in insurance cover for residential care costs but for many elderly people the goal is to stay at home and that will require support from carers.

"While the Liberal Democrat party has pledged to improve access to GPs around the clock and improve local accountability for health services, we are disappointed that they have withdrawn their policy of universal increase in the provision of free personal care for those over 65 without providing details of what their policy for social care will be."

Carole added: "We want the state to support, not distort, family relationships.

"The Princess Royal Trust for Carers is calling on all political parties to deliver the following asks in their election manifestos: a guarantee that the National Carers' Strategy will not be abandoned; a Carers' Centre in every area; and that every carer has the right to breaks and higher benefits to avoid living in poverty."

The Princess Royal Trust for Carers provides quality information, advice and support services to more than 400,000 carers, including approximately 25,000 young carers. For more information, go to www.carers.org and www.youngcarers.net

Community Newswire.

Shaw Trust awards three-year contract to VEM

The Shaw Trust has awarded a three-year travel, venue and accommodation-finding contract to Venues Event Management (VEM).

 

The contract with the national employment charity, which helps disabled and disadvantaged people find work, is worth an estimated £1.5m annually
.
Venues Event Management pitched against several other agencies for the business. The agency will provide accommodation and venue-finding services to the charity. It is partnering with Quorn Business Travel to provide the travel services for the contract.

Shaw Trust buying manager Mick Parry said: "As a charity supporting disabled people, we always ensure that our suppliers consider equality, and diversify and reflect the importance of them as part of their own culture.

"Venues Event Management and Quorn Business Travel reflect the values of the Shaw Trust and offered us a perfect solution to consolidate, control and measure our spend in this area, as well as providing a cost-effective and high-quality service."

Venues Event Management business development manager Mark Fry said its work would be mostly related to the Shaw Trust's training events and small meetings, most of which will be in the UK. "The client is extremely cost-conscious due to it being a charity, so we and Quorn are mindful of this in our work with it," he said.

Shaw Trust holds a number of fundraising events each year. In 2009, it held a charity cricket match at The Hurlingham Club in London.

C&IT

ONGAR: Work begins on £6.2million theatre and arts centre

ONE of the largest arts organisations in the UK has started work today on a new £6.2million building in Chipping Ongar.

The Theatre Resource group, which specialises in projects for disabled people, already has an arts and stage complex on the site in Stony Hill, but wants to expand its capacity and geographical reach with the space and resources provided by the new structure.
The plans include a multi-purpose studio, teaching rooms, 25 bedrooms for those staying on courses at the centre and nine flats for long-term students with special needs.

It is hoped that the building work will be completed by early 2011.

Theatre Resource director and chief executive, Jeff Banks, said: "I am thrilled that building work is finally about to get underway and that our plans for the new centre are beginning to be realised.


"It is truly an exciting time for Theatre Resource".

Theatre Resource, which has a staff of 25, made more than £1.2million last year and is believed to be the biggest disabled-led arts group in the country to own its own arts centre.

Over the last year the centre has ran workshops and courses for more than 2,900 disabled and disadvantaged young people and adults, and attracted over 18,000 visits.

The project has been made possible thanks to a variety of grants from various bodies, including Essex County Council, the East Thames Group housing association, The Rayne Foundation, The Arts Council for England, Government group Futurebuilders England and the East of England Development Agency.

Waltham Forest Guardian

The CAFT Midsummer Ball

The CAFT Midsummer Ball will now be held on Saturday 3 July (instead of Saturday 26 June) and we very much hope you will consider joining us!

For more CAFT events in 2010 please see: CAFT Presents 2010 Events

www.caft.co.uk

Body Of Missing Blind Woman Found

An update on this case, which I am very sorry to read:

A 46-year-old blind woman with hearing difficulties who was reported missing has been found dead.

South Wales Police had appealed for help to trace Wendy Barnes, of Barry, Vale of Glamorgan, who had last been seen on Thursday afternoon.

The body of Ms Barnes was discovered near Sully Road, Penarth, on Friday night.

Police are not treating her death as suspicious and thanked local people who gave information to help locate her.

Supt Liane James said: “I would like to thank the community who came forward with information that was instrumental in us discovering Wendy Barnes. Our thoughts go out to her family.”

Samedifference

Police Appeal Over Missing Blind Woman

Police are appealing for help in finding a blind woman who is missing from her home in Barry, Vale of Glamorgan.
 

Wendy Barnes, 46 and 4ft 5in (1.3m) tall, also has hearing difficulties.

South Wales Police say Ms Barnes was last seen on Thursday afternoon and could be in the Barry or Penarth areas.

Anyone who may have seen her, particularly in the Gibbonsdown, Coldbrook Road and Langlands Road areas of Barry, should contact police on 101.

Ms Barnes is described as being of large build with very short greying light blonde hair.

When last seen she was wearing a tweed, beige and coffee coloured calf length skirt, a light cream patterned top and cream cardigan with pockets.

She was also wearing a beige hooded calf length coat with black shoes and handbag.

I’m posting this to help spread the word… bloggers, if you think you have readers in Wales, please cross-post it, and let’s see if we can really make a difference. Thanks!

Samedifference

Negative slogan gives negative outcome?

by Philip Patston
The slogan, “Nothing about us without us” has been bandied around the international “disability” community for years and it has just been heralded, at the Disability Intergroup of the European Parliament and the European Disability Forum (EDF) in Brussels, as “the motto … calling for a full participation of disabled people in all policies.” It was described by the President of the EDF as “an historic day for the 65 million persons with disabilities” where inclusion ”is becoming a reality.”


Really? I think the only reality this motto is creating is exclusion. In terms of genuine participation in political change, disabled people still get “nothing” about us, and that nothing happens “without” us.

When are disabled people going to get it? Why do we keep putting negative ideas into the quantum field by using negative language? When we think “disabled”, we get disabled. When we think, “nothing” and “without”, bingo! We get it.

“Everything about us with us,” is the energy we need to be generating. We need to be labeling ourselves as unique, not disabled. We need to be thinking of ourselves as part of the natural diversity of humankind, not excluded and in need of inclusion. We need to be creating a positive reality.

If you don’t believe me, consider this ancient story from the Sioux Nation:

The Creator gathered all of Creation and said, “I want to hide something from the humans until they are ready for it. It is the realisation that they create their own reality.”

The eagle said, “Give it to me, I will take it to the moon.”

The Creator said, “No. One day they will go there and find it.”

The salmon said, “I will bury it at the bottom of the ocean.”

“No. They will go there too.”

The buffalo said, “I will bury it on the Great Plains.”

The Creator said, “They will cut into the skin of the Earth and find it even there.”

Then Grandmother Mole, who lives in the breast of Mother Earth and who has no physical eyes but sees with spiritual eyes, said, “Put it inside of them.”

And the Creator said, “It is done.”

If you agree and would like to discuss this with me more, help me form the WISE SPECIES social network on Facebook. It’s a social experiment to see what happens when we purposefully create a positive reality by reframing negative thoughts.

I look forward to talking with you.

Diversity New Zealand

Disabled students wait for specialist equipment grants

Almost 12,500 students in England are still waiting for grants to pay for specialist equipment, figures from the Student Loans Company show.

The statistics reveal two thirds of students with a disability or special needs are still waiting for money.

The figures were obtained by the Conservatives following a Freedom of Information request.

The SLC, which was criticised for its mismanagement of regular student loans, says it is reviewing its processes.

Tens of thousands of students were forced to start the academic year without their full loan and grant entitlement after problems with the processing of applications.

A 10% increase in applications for university places coincided with changes to the way first-time loan applications were dealt with and technical problems.

Students complained of lost personal documents, jammed telephone lines and delays in approval for their loans.

The latest figures show at the end of January some 16,000 English-based students are still waiting for at least some of their money.

A further 2,000, whose claims have been fully processed, are waiting for their first payment.

These delays have had a knock-on effect for students with disabilities, because - in England - disabled students' allowances (DSAs) are administered by the SLC.

Of the 19,006 eligible DSA applications, only 6,507 have been fully processed and approved by the SLC. This means that, almost four months after term started, only 34% of eligible applications have been processed.


Personal helpers
DSAs are available for all UK students with a disability and are used to buy specialist computer equipment resources such as Braille paper, or to pay for personal helpers to assist on campus.

The allowance is paid in Scotland by the Student Awards Agency for Scotland, in Wales by the Welsh Assembly government through local bodies and in Northern Ireland by the education and library boards.

These figures are truly shocking David Willetts, Shadow Universities and Skills Secretary

David Gibson is studying for a post-graduate qualification in teaching at the Institute of Education in London and wants to teach geography.


He said he has yet to receive his DSA to cover expenses related to his dyspraxia and dyslexia.

Mr Gibson said the allowance would cover a computer and software to help him with his studies, as well as a mentor to talk to occasionally.

"It is the most stressful time I've had in the past 30 years," he said.

The SLC said the application process for DSAs "took longer than applications for other types of student finance".

"We are still awaiting information from 5,179 assessment centres and more than 4,297 students, and are processing the remainder of applications as quickly as possible," a spokesman said.

"We are currently reviewing the process and procedures for targeted students in consultation with relevant organisations and special interest groups and we will also be improving the training of specialist advisers."

Before students with disabilities are given DSAs, they are assessed.

Chair of the National Network of Assessment Centres Lesley Morrice said it appeared that the SLC was trying to blame the delays on the assessment centres and on the students.

That was unacceptable, she said: "We work to tight deadlines when processing students' assessments. There is no evidence of significant delays at the assessment centres on this sort of scale.

"I have been an assessment centre manager for over 12 years and these delays are unprecedented.

"The SLC implemented changes without proper consultation and without appreciating the impact on students".


'Students deserve better'
Shadow universities and skills secretary David Willetts said: "These figures are truly shocking.

"Almost four months after term started, and two months after the government said the problems were being fixed, thousands of disabled students are still waiting for the funding they need to pay for vital equipment.

"Twice as many disabled students have not been paid their grants as have been paid them.

"Ministers are still passing the buck and still failing to deliver. Students deserve better - much better."

An inquiry into the loans delays led by Professor Sir Deian Hopkin, which reported in December, complained of "conspicuous failures".

Two managers later left the SLC under a restructuring programme.

BBC News

PARALYMPIC PUSH FOR DISABILITY SPORT SCHEME

A national children's charity is hoping the 2010 Paralympic Winter Games, which start in Vancouver next month following the Winter Olympics, will inspire young people with disabilities to take up new sports.

Caudwell Children is hoping the games will increase interest in its Enable Sport programme, which provides specialist equipment to young people with disabilities.

The programme was launched in 2008, to show children with disabilities that they can take part in a wide range of sports.

Since then it has made hundreds of donations of adapted equipment for sports including football, athletics and basketball. It has donated adapted wheelchairs for footballers, specialist swimming goggles, ice skates and gymnastic equipment.

Ryan Abrahams, aged 14, from Bradley Stoke near Bristol, received a £5000 powered wheelchair from the programme to allow him to play football for the Villa Rockets in Birmingham.

His mother, Mary Abrahams, said: "We were overwhelmed with the donation from Caudwell Children.

"Playing with his friends at Villa and doing so well has really improved his confidence. The new chair is going to further improve his independence and make him an even happier young man."

Now the charity hopes the winter games will increase interest further, with children keen to participate in winter sports such as skiing.

Lee Pearson, nine-time para-equestrianism gold medal winner and Enable Sport ambassador, said: "International events like this raise the awareness of disability sports and hopefully inspire youngsters to take up new sports or set themselves goals of competing at the highest level.

"Enable Sport can help these sporting aspirations by providing the necessary equipment, which can often cost thousands of pounds."

Trudi Beswick, CEO of Caudwell Children, said: "We are not expecting a rush of applications for ice wheelchairs and skis but we hope the achievements of our Paralympic athletes will inspire some children to see what sports they could get involved in.

"The funding for specialist sports equipment through our Enable Sport initiative is still available and we want to help more sporting youngsters achieve their full potential."

The games in Vancouver will be the 10th Paralympic Winter Games. About 600 athletes from 45 countries are expected to compete in sports from alpine skiing to wheelchair curling.

Caudwell Children provides donations of treatments, therapies and specialist equipment throughout the UK. To date the charity has donated more than £11 million to thousands of children. For more information, visit www.caudwellchildren.com.

Community Newswire

'Kay Gilderdale should have been investigated'

In cases of assisted dying, anyone involved should have to account for their actions, says Phil Friend
Like a lot of other people I watched Panorama on Monday evening which focused on the subject of assisted dying. The central issue concerned whether Kay Gilderdale should have been prosecuted for assisting her daughter Lynn to die.

The programme used every technique imaginable to ensure the viewer was sympathetic to Kay's terrible plight. What it didn't go into was what kind of support, if any, Kay and her family received. We didn't hear from others with a similar condition. Some of the filming as I understand it took place while Lynn was alive but there was no interview with her. As a programme it singularly failed to inform the debate.

RADAR has always taken the (unpopular) view that Kay Gilderdale should have been investigated. However, before writing to the editor or posting comments denouncing us for our inhumanity, please note we have never said she should have been convicted.

Our position is that when one person is found to have had a hand in the death of another, that person should be forensically investigated and called to account, in accordance with the law which protects us all. The death, therefore, of a profoundly disabled person should be investigated with the same vigour as that of a non-disabled person. Anyone involved with that death should have to account for their actions in a court of law. This sounds reasonable to us, and yet the majority, apparently, do not agree.

Those campaigning for assisted dying wish to change that most fundamental of laws. This will effectively create a class of people from whom that legal protection can be taken away, whether by act of parliament or by decision of a tribunal. The Gilderdale case has created a great deal of public attention, promoted by many as proof positive of the need for a change in the law. The Inglis case, however, has been somewhat neglected by those who call for such a change. .

Tom Inglis suffered severe brain damage in a fall from an ambulance. He became profoundly disabled, and could only interact by blinking or by squeezing hands. His mother Frances became convinced ("obsessed", a relative suggested in court) that he was suffering intolerable pain, in spite of medical opinion to the contrary, and that Tom, who had been an active young man, would not want to be a "vegetable".

Foiled in one attempt to kill him, Frances, determined that he should die, disguised herself as an aunt, gained access to his room, barricaded the door and then injected him with heroin. What if Tom did not, at the moment his mother gained entry to his room, want to die? If that is the case, then he was the victim of a brutal, calculated premeditated murder. The fact that Frances Inglis was tried, convicted and sentenced for the crime at least provided justice for Tom.

Frances Inglis provides evidence of why the "loving-mother-knows-best" school of thought, which tends to assume that relatives will always have the best interests of a profoundly disabled person at heart, is dangerous and somewhat misguided.

Sir Terry Pratchett in his Dimbleby Lecture talked about allowing people the right to request death for themselves, at a time of their own choosing. For those like him who are able to communicate their desire and can articulate it and have the financial resources to manage their situations, this may seem reasonable. They are far less likely to feel they are a burden or a nuisance and are in many ways spared the possibility of feeling pressured to die.

As for Kay Gilderdale, she has now been acquitted, but the point about people such as Lynn Gilderdale and many other profoundly disabled people is that they are so utterly dependent upon others. They are often placed in situations where other people have a great deal of power and influence over them, and an awful lot of unsupervised access to them.

To exempt such individuals from legal scrutiny if they assist the person in their care to die would open the door to abuse and leave already vulnerable people at ever greater risk. Precisely because they have such power and responsibility, people who assist in a death should be subjected to full forensic scrutiny, and their assertions as to their motives and the course of events should not simply be taken at face value.

The issues surrounding these cases are extraordinarily complex – levels of support, palliative care, effective pain management, access to activities and peers, attitudes of relatives, benefit levels, presence or absence of mental health conditions – to allow a one-size fits all law to be passed, and setting up tribunals which grant a license to kill at a point in the future open the door to various abuses – what if the person changes their mind, but the person assisting them doesn't? Simply assuming that in the case of terminally ill and disabled people friends and relatives will always act in their best interests is naive and dangerous.

Rather than change legislation which is designed to protect vulnerable people, shouldn't we ensure that the individual and their family are given all the support that it is possible to provide? Perhaps then their quality of life would be enhanced making assisted dying a less attractive option.

Joe User Blog, The Guardian

Sales slump threat to city blind charity

A CHARITY that employs blind and disabled people to make beds and mattresses has seen sales slump – meaning the city council could need to increase a subsidy it provides.
Council-backed Blindcraft – one of the oldest charities in Edinburgh – had plans to become profitable after winning a deal to supply John Lewis in 2008.

But the council forecasts that the charity will see sales slump by 22 per cent to £1.56 million in the year to April 2010.

The council's subsidy is now expected to grow from £990,000 in 2008/09 to £1.08m in 2009/10.

Peter Gabbitas, director of health and social care at the council, said: "The financial year has proven difficult for all bedding companies across the UK economy."

It was announced last month that the council had axed plans to spend £30,000 on new equipment for Blindcraft, founded in 1793 for the welfare of the blind. It is now a "significant trading operation" owned by the council.


Edinburgh Evening News

Inclusive Fitness Initiative (IFI) London

The London Development Agency (LDA) has awarded a four year grant to London Sports Forum for Disabled People to project manage Inclusive Fitness Initiative (IFI) London.

IFI London, a unique partnership between the LDA, London Sports Forum for Disabled People and the national Inclusive Fitness Initiative will support a further 150 fitness facilities across the capital to achieve the IFI Mark accreditation, ensuring that they are accessible to and inclusive of disabled people.

The IFI Mark is the nationally recognised standard of inclusion within the fitness industry, awarded to fitness facilities that are inclusive of disabled and non-disabled people. The accreditation process involves the creation of accessible facilities to meet current best practice and legislation, and the provision of inclusive fitness equipment within the facilities. This is accompanied by the training of staff throughout the facility, providing disabled people with a safe, effective and value for money experience and the implementation of inclusive marketing strategies to ensure that disabled people are aware of the opportunities available. To date there are 25 IFI Mark accredited facilities in London catering for all impairments and providing a quality experience for disabled people.

David Croisdale-Appleby, Chair of the Inclusive Fitness Initiative commented "This is a new and very exciting partnership, it is the first regional project of its kind and the IFI are looking forward to working closely with London Sports Forum for Disabled People and the London Development Agency. This is a significant development for the IFI and provides another major step towards achieving one thousand inclusive fitness facilities throughout the UK by 2012.”

The LDA’s four year funding commitment will enable IFI London to build on the current foundations and expand provision across the capital. By increasing the number of IFI Mark accredited fitness facilities in London, this project will create more opportunities for disabled people to participate in physical activity and in addition, capture the true inclusive nature of London in the run up to and post the 2012 Olympic and Paralympic Games.

Alex Gibbons, Project Manager of IFI London said “IFI London is a fantastic project to provide more opportunities for disabled people across the capital. We will work with London based facilities, and partners on both a regional and national level to increase the number of IFI Mark accredited fitness facilities in London. IFI London will promote and embed a fully inclusive environment for disabled people in London.”

                                                                        

If you are a fitness facility based in London and want to find out how you can get involved in IFI London and get IFI Mark accredited please contact:

Project Manager - Alex Gibbons alexgibbons@londonsportsforum.org.uk

Project Officer - Gideon Feldman gideon@londonsportsforum.org.uk

Notes to editor

Inclusive Fitness Initiative (IFI) London

Inclusive Fitness Initiative (IFI) London is a four year project supporting 150 fitness facilities across Greater London to achieve IFI Mark Accreditation, therefore ensuring that they are accessible to and inclusive of disabled people. It is a unique partnership between London Sports Forum for Disabled People, the London Development Agency (LDA) and the Inclusive Fitness Initiative (IFI). By the end of the project in 2013 it is anticipated that at least 20% of the fitness facilities in London will have been supported to make necessary enhancements and to ensure disabled people can be effectively integrated into their services.

www.londonsportsforum.org.uk/inclusive_active.php

Inclusive Fitness Initiative (IFI)

Since 2001, the Inclusive Fitness Initiative (IFI) has been supporting the leisure and fitness industry to become more inclusive by both promoting and providing better access to fitness facilities for disabled and non-disabled people. The IFI is responsible for the development of the nationally recognised IFI Mark Accreditation.

www.inclusivefitness.org

London Sports Forum for Disabled People

London Sports Forum for Disabled People is the lead strategic development agency for sport and physical activity for disabled people in London. Their core role is to ensure that providers and policy makers understand and act upon their responsibility to be inclusive of disabled people. The organisation ensures equality and inclusion is at the heart of grass root sport provision in London.

www.londonsportsforum.org.uk

London Development Agency (LDA)

The London Development Agency (LDA) works to improve the quality of life for all Londoners by driving sustainable economic growth and keeping the capital competitive. Its role is to bring together the right people, skills and resources to deliver real results in the long term, responding to the needs and ambitions of communities and businesses. The LDA invests more than £400 million a year to create jobs and develop healthy, sustainable communities. It also supports London as a financial, educational and research centre. It tackles the barriers to employment for certain groups, encourages business and cultural activities and improves infrastructure and the environment. The LDA takes on major projects and difficult issues and is constantly looking for fresh ways of doing things and better ways of achieving sustainable growth. In this way the LDA ensures all Londoners can gain from and contribute to London’s economic success.

www.lda.gov.uk

Keep fit to your own beat in Herefordshire

People with learning disabilities can keep fit to their own beat during 2010 with the help of an innovative Fit Kit. The Fit Kit – a CD and dance fitness regime made by people with learning disabilities specifically for their peers has been created through Affinity Trust’s Opportunities Service, SCORE.

 

More than 300 people with disabilities in the South West will receive the Fit Kit in the New Year – enabling them to increase their fitness levels in their own home and at their own pace. The Fit Kit has been created by members of the SCORE project in Herefordshire who teamed up with a local DJ who provided a studio and editing suites to create the 15-minute CD.

 

SCORE members worked closely with Herefordshire Hip Hop musician Mark “Lofty” Loughman and DJ Dave “Cutlavis” Lavis. The musicians helped create and produce the track which samples the SCORE members’ voices as well as their live percussion, resulting in a high-energy, original piece of music.

 

SCORE members have been working with fitness instructors from Herefordshire’s HALO Leisure Centre to create a dance fitness regime to complement the music. These members will then take the Fit Kit project on the road, holding events across Herefordshire, teaching as many as 300 disabled people how to use their free Fit Kit.

 

Laura Harvey, SCORE member, said: “We are looking forward to teaching people the dance moves and hope that people will get fit with the beat.”

 

SCORE was set up in 2001 by Affinity Trust to enable individuals with significant learning disabilities to participate to believe, achieve and belong through participation in sport, the arts, training and supported employment.  Score aims to shape itself to the individuals involved, and follows them along whichever pathway they wish to take, providing support, friendship and trust. Gail Ladd, SCORE manager added: “Through teaching the dance routine and giving away free CDs we hope it will encourage local people with a learning disability to play the CD at home, keep fit and have fun.”

 

Affinity Trust (formerly known as Thames and Chiltern Trust, TACT) is a not for profit, limited company registered in the UK that provides person-centred, innovative approaches to support people living in the UK with learning disabilities. The mission is to enable people with learning disabilities to pursue active and fulfilling lives, gain increased independence and achieve equal rights as citizens.

 

Contact: Gail Ladd at SCORE at 01432 379380

Visit: www.affinitytrust.org

Interconnections Newsletter

‘Nothing about us without us!’

From the European Parliament: ‘Nothing about us without us!’ A historic day for 65 million people

From press release  of 29/1/10 –

 

Last Thursday, the renewed Disability Intergroup of the European Parliament and the European Disability Forum toasted the New Year in Brussels at a very well-attended event. The new President of the Intergroup - for the first time a person with a disability himself, and the disability movement presented the Disability Pact to a hundred of activists and 20 MEPs from various political groups and nationalities.

 

                 The Disability Intergroup (DI) is an informal grouping of Members of the European Parliament (MEPs) from all nationalities and most political groups who are interested in promoting the disability policy in their work in the European and national contexts.

 

                 The DI is one of the oldest Intergroups: it was established in 1980. It is currently composed of about 100 MEPs. Last December 2009, the Intergroup elected Ádám Kósa MEP (HU, EPP) as President of the DI. At the cocktail, Pál Schmitt, Vice-President of the European Parliament welcomed his Hungarian colleague and expressed his support to the disability movement. Yannis Vardakastanis, President of EDF stated:

 

Today is an historic day for the 65 million persons with disabilities. Today, for the first time in the history of the Intergroup, the motto “Nothing about us without us” calling for a full participation of disabled people in all policies is becoming a reality.

 

Ádám Kósa conceded:

 

I have a dream that persons with disabilities will finally decide for themselves. The full ratification of the UN Convention on the Rights of Persons with Disabilities as well as the adoption of the Disability Pact by the EU Member States are the necessary steps to achieve this dream that I share with 65 million persons with disabilities in Europe.

 

Read more on EDF website and find full press release attached

 

More information: www.disabilitypact.eu

Interconnections Newsletter

Cash Counts

Cash Counts: A new online service to make sure families with disabled children get every penny - by Contact a Family

Cash Counts includes:

§  An online benefits calculator – so families can work out how much they are entitled to

§  A top tips guide on benefits written by the Contact a Family helpline people

§  A ‘frequently asked questions’ page to help families through the complex benefits system.

 

Srabani Sen, Contact a Family Chief Executive, said:

 

Cash Counts gives families with disabled children the latest financial advice and information specific to them. It costs three times more to raise a child with a disability, so families with disabled children are more likely to be living in poverty and be reliant on benefits. In these tough economic times, finances are tight for all families, but for those with a disabled child things are even harder. They need a helping hand to navigate the complex benefits system.

 

Families with disabled children face enormous financial challenges. They incur additional costs caring for their child – childcare, heating, transport, home adaptations and equipment. It can also be difficult for families to hold down a job due to the demands of caring. Despite this, many are not claiming the benefits they are entitled to.

 

A mother, Stephanie Chapman, said:

 

My husband recently stopped working because the strain of working and caring for Isaac was too much. It has meant we have had to tighten our purse strings. Isaac is doubly incontinent and this means clothes, bed linen and furniture need replacing far more frequently than is usual. And we have the washing machine on at least twice a day often doing a boil wash. This is not something we can reduce, so we have to incur the extra costs.

 

Visit: http://www.cafamily.org.uk/cashcounts  

Interconnections Newsletter

Share the Care Week in March

Share the Care Week in March to raise awareness of the needs of families of disabled children - part of the BIG Breaks campaign

Verity Hitchings, Shared Care Network, writes –

 

Share the Care Week, Shared Care Network’s annual awareness week will take place from 7-14 March 2010. It aims to raise awareness of the needs of families of disabled children and to recruit short break carers for disabled nationwide. These carers are ordinary people who provide regular care to a disabled child while giving their family a regular break from the demands of caring.

 

It is part of Shared Care Networks BIG Breaks campaign which aims to double the number of families receiving a short break to 20,000 by 2010.

 

For more information:

Visit: www.sharedcarenetwork.org.uk

or contact Verity Hitchings -

E-mail: verity.hitchings@sharedcarenetwork.org.uk

Tel: 0117 9415361. 

Interconnections Newsletter

Brakes put on Croydon charity cycle fund

Croydon Council is spending £25,000 on a study to improve cycling in the borough while a cycling charity for disabled people struggles for survival.

Over the past three years, Cycling for All, which needs £35,000 to survive, has been awarded between £20,000 and £25,000 by Croydon Council through funding the council acquired from TfL.

Last year, the charity, run by Wheels for Wellbeing, based at Croydon Sports Arena in South Norwood, helped over 400 disabled people and their families cycle on three and four-wheel bikes, but this year it has been told their funding application has been unsuccessful.

Separately, the council has been given £25,000 to carry out a feasibility study into making Croydon more cycling friendly.

Janet Paske, the manager of Wheels for Wellbeing, said: “The council has no statutory duty to fund us. In 2007 it gave us £20,000 from a Transport for London (TfL) local implementation plan. The following year we got £23,000.”

In the past financial year the charity received £25,000 and also had funding from the Peter Harrison Foundation.

Ms Paske said: “Croydon Council has always said we must not rely on them for funding and we have not.”
She is appealing for help from businesses to raise the money they need.

Will Plant, who has a physical impairment, has been using the scheme.

He said: “In our case, people who struggle to walk can ride a cycle, giving them exercise they can’t do otherwise.”

Jo Ward, mum to Harvey who has autism, said: “This is a wonderful scheme for kids with special needs. They can practice their cycling skills in a safe place and there is a nice selection of bikes.

Harvey loved it and will definitely come again.”

Janet Paske, the manager of Wheels for Wellbeing, said: “Cycling for All gives disabled people lots of fun with their family and friends. Cycling can also give a senseof freedom and independence, which others take for granted.”

A council spokesman said: “The council has supported Cycling for All obtaining start-up funding from TfL for the past two years to get it off the ground.

“Biking Boroughs funding is separate from this, and our objective for it is to deliver a plan for cycling in Croydon.”

If you can help go to www.justgiving.com/wheelsforwellbeing, visit www.wheelsforwellbeing.org.uk or call 020 7346 8482.

Croydon Council will do a feasibility study will look into: q Traffic-free routes to parks and open spaces to encourage cycling uptake.
 
q More continuous sections of cycle lane on roads with direct connections between the town centre and surrounding areas.

q A network of convenient maintenance and repair shops.


q Secure, covered cycle parking at East and West Croydon stations and shopping centres, as well as places, such as Mayday Hospital and Selhurst Park.

q Introduction of a cycle hire scheme to let aspiring cyclists test the water without having to worry about buying or storage.

q Allowing cycles on trains to get around some of the borough’s hilly inclines.

Croydon Guardian

The Essay: Back to Victorian values

by AC Grayling
Criminalisation and legislation are the last resorts of the fussy moralizer. We can’t let society be controlled by finger-wagging prudes

There are fashions in morals as there are in everything else, but though fashions in clothing or music are usually harmless and sometimes amusing, the oscillation between reactionary and liberal moralities is another matter, especially when its direction is reactionary. Alas, I perceive just such a movement occurring now; which invites comment and an assemblage of reminders.

Here are some straws in the wind. Mr David Cameron, perhaps the next Prime Minister, has announced a policy of tax breaks to ‘support marriage’. At time of writing the policy’s details are still in flux, but its aim of providing a money inducement to people to get and stay married – which at a minimum specifically means acquiring a relevant piece of paper from the municipality – has a clear premise. It is that there is something about that piece of paper which turns long-term committed relationships into something ‘proper’ and worthy of reward. In the background of this view are residues of theology and control of sex, and a wish to revive and re-emphasize ideas of social acceptability, in effect by making the state a third contracting party to relationships.

Mr Cameron says his policy is based on the claimed fact that when both parents in addition have a municipal document, their children do better than if the municipal document is absent. This claimed fact is one that needs inspection, now that magical thinking about these matters is less common. In the long and unhappy history of Church and state interest in licensing cohabitation and reproduction, the argument for marriage was not about children but the supposed magic: marriage was a ‘sacrament’, ‘ordained of God,’ and so forth. The obvious fact that children flourish if they have a plurality of kind and happy adults caring for them is these days somehow parlayed by moralizers into pieties about marriage, leaving the ‘sacrament’ part to be taken care of by the wedding dress industry.

In a speech outlining his tax breaks Mr Cameron further said that the media and advertisers should be discouraged from flaunting saucy, explicit, flesh-revealing images (he ignored a cry of ‘Page Three!’ from the audience, because The Sun is on his side) in order to protect children. Moves to turn public space into a kindergarten are one of the earliest signs of moral chill, and one of the surest. Other people call it censorship, but not Mr Cameron; challenged directly about this, he did not reply.

These moralistic indications from the Conservative Party, not hitherto best known for keeping its trousers up and its hands out of tills, tend in the same direction as another of those laborious Labour government initiatives consisting of all gesture and no thought, namely, its efforts to deal with prostitution by prohibition and criminalisation. It passed a law last autumn criminalising customers of sex workers if these latter had been trafficked. Now, genuine trafficking is an extremely horrible crime involving kidnapping and coercion.

Someone who had sexual relations with the victim of such treatment is surely committing rape. As this latter point suggests, there are laws already in place to punish the crimes implicated in genuine trafficking. The Labour government, with its bad habit of duplicating existing laws, and too often on the basis of bad thinking, was unable to resist gesture politics here.

For one thing, the definition of trafficking is so broad that it obscures the serious problem of real trafficking. So if a young gay man comes to the UK from Poland (where homosexuals are persecuted) to work in the sex industry, and if a friend helps him make any of the arrangements involved in moving to Britain and finding somewhere to stay, he is thereby officially ‘trafficked’ and his friend and his clients are officially criminals.

Many people find it hard to believe that some other people might actually choose to be sex workers. They deny that anyone would become a sex worker if not coerced by pimps, drug habits, or desperate poverty. This is the thinking behind the current Glasgow campaign to stamp out prostitution by criminalising its customers. Glasgow City Council’s hope is that the Scottish Assembly will adopt the same measures for the country as a whole. The sponsors of such measures, convinced that sex work is always unwilling and horrible, would accordingly be surprised when they hear about, for example, Tuppy Owens and the Tender Loving Care (TLC) Trust, which puts disabled people in touch with sex workers willing to help them with their needs. Think of the deprivation experienced by, say, armless or paralysed men and women; think of the extraordinarily warm imagination of those who recognise that deprivation, and respond to it. A Times article reported that “The TLC has helped hundreds of people with disabilities… many sex workers offer a concession to disabled clients who genuinely cannot afford what they offer.”

Like most other activities, sex work has a large lower end where drug addiction, violence, disease and misery are rife: not all or even many sex workers are Belles de Jour. Does it solve such problems by driving it further underground, further into the arms of crime, further into stigma and exclusion? Laws against brothels force sex workers onto the street, alone, in all weathers, when they could be safer and warmer in a house together.

Less stigmatization of everything to do with the sex trade would encourage its workers and clients to access health advice and care, and to reduce the abuses that too easily occur when it is driven into the shadows. If the example of Prohibition in 1920s America teaches anything, it is that prohibition and criminalisation make all problems worse.


There is of course a better alternative in all these matters. Families with children should be helped to stay flourishingly together, however constituted and whether or not a marriage licence has been bought. People abused, coerced, harmed, no matter in what line of work, should be protected. Addicts should be helped, and criminals given less opportunity to exploit human misery in any respect. This applies to the areas where matters of morality tip over into problems; by no means all of them do, and those that do not should never be the business of the police or even of finger-wagging prudes.

Fetishizing marriage, calling for censorship, promoting ‘wars’ on drugs and prostitution through the criminal law, are the unintelligent reflexes of moralizers who do not want anyone else to do, be or see what they themselves dislike or are frightened of doing, being and seeing. In the days of Mary Whitehouse, who did not want anyone else to see on television what she personally disapproved of, the great puzzle was why she had bought a television without an ‘off’ button. Today’s new moralizers have to be reminded that if they seek to do good, it is best done through working along the grain of human nature, not against it, and in particular by sympathetic, constructive and tolerant means. But first they have to be sure that their moralizing impulse is not simply a matter of having forgotten where the ‘off’ button is when they are tempted to meddle in other people’s lives.

Varsity

Connect in the North wins Government funding bid to help kick start The Learning Revolution in Leeds

Connect in the North is celebrating securing £23,960 from the Government as part of a‘learning for pleasure’ innovation spearheaded by the Department for Business, Innovationand Skills (BIS).

Let Rip - one of over 213 winning projects, will support 10 people with learning difficulties tolearn about the music business and set up a band.

In December 2009 40 people with learning difficulties auditioned at Host Media Centre in Chapeltown. People came from far and wide in the hope of developing their talents and achieving fame in the music industry. The project benefits from the musical skills and
industry knowledge and experience of Liz Leach, Sharon Horsfall and Lanre Phillip from
Standpoint. They formed the audition panel in December and are running the workshops
now. They were very impressed at the quality of performances and are looking forward to
the intensive work over the next 3 months. Auditionees came from a variety of musical
genres from easy listening and musical hall, through punk and heavy metal to modern pop
ballads and rap. The 10 successful people have now started rehearsing and learning about
the music business.

Their achievements will be celebrated at 2 public performances in March 2010. On 12th
March they play at Seven Arts in Chapel Allerton (0113 2626777) and on 26th March at
the Carriageworks (0113 224 3801) in the Centre of Leeds. Tickets cost £6 and are
available from the venues. Call Seven Arts to be added to the reservation list and tickets will
be available on the door on the night. Tickets are available from the Carriage Works for the
performance on the 26th March

Already the project has made a long term impact. Old Chapel studios, run by Mark Hubbard,
where the band is rehearsing, has a history of fostering local talent. The Kaiser Chiefs and
the Pigeon Detectives have practiced there. Now thanks to partnership working between Let
Rip, Standpoint and Old Chapel they have built an accessible toilet. This will mean that
other disabled people can use the facility in the future.

The band have decided to call themselves “The Outsiders” and agreed their set, but that will
remain a secret until the shows in March. This will be the start of something big.

To find out more about Let Rip contact Liz Leach 0794 972 6334 or 

Cathy Wintersgill 0113 270 3233

www.citn.org.uk

Recycle, Just What the Doctor Ordered!

Many patients in the UK do not take the drugs prescribed to them for various reasons. Some patients have multiple medications on repeat prescription and continue ordering and collecting all of them, even the ones they no longer use. In other cases drugs are only prescribed in case certain symptoms occur such as an asthma attack or pain after an operation, and so may never be required.


When patients pass away, especially older patients who tend to take daily medications, they often leave a surplus of drugs behind them which tend to be binned by the family. The Department of Health estimates that as much as £800 million worth of medicine prescribed in primary care is wasted every year. If hospital and other secondary care prescriptions were also taken into account this figure would be significantly higher still. Currently the UK government has no recycling scheme for unused drugs and the majority of unwanted medication is thrown away by patients or taken to the pharmacy for incineration.

Inter Care – Medical Aid for Africa is a UK registered charity which collects unused medications from GP’s surgeries in the UK and then delivers them free of charge to over 100 health centres in 7 countries in sub-Saharan Africa.

Patients deliver their unwanted drugs to registered GP surgeries and these are then collected by Inter Care and quality-control checked by a panel of volunteer doctors, nurses and pharmacists. Certain medications cannot be recycled by Inter Care and these are disposed of as clinical waste.

Drugs which can be used are checked to ensure that they are at least 15 months from expiry and are housed in their original packaging with no visible signs of tampering. Suitable drugs are then packaged and sent at regular intervals to the African health centre which have requested them.

Inter Care was founded in 1974 by a couple called Dr David Rosenburg and Dr Patricia O'Keefe. Working as GPs in Leicestershire they saw first-hand the wasting of medication occurring in the UK whilst at the same time learning from friends about severe shortages of drugs in Africa. This injustice galvanized them into action and they started collecting unused medications.

How can I help? If this has sparked your interest, there are several ways to help Inter Care continue its work. Firstly, check with your GP surgery to see if they are registered with Inter Care and if they are not, encourage them to look at the Inter Care website and do so.

Secondly, if you do know of anyone with suitable unused medication ask them to take it to a registered surgery for recycling. For further information visit: http://www.intercare.org.uk

AttendanceA - epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England.”

· Read the petition
· Petitions homepage

Read the Government’s response

The Government understands that disability benefits provide an important means of financial support for severely disabled people who have extra costs as a result of their disabilities. 

We also know that the care and support system that we have at the moment is not sustainable.  By 2026, population estimates show that there will be double the number of people aged over 85 that there are now, and the number of people over 100 will have quadrupled.  In 20 years’ time, we expect over 1.7 million more adults to have a need for care and support.  We need to reform the care and support system radically to meet these future pressures.

In a reformed social care and support system, which offers more support to older and disabled people, we are looking to see if bringing together the new care and support system and some disability benefits into a single system may be a better way of providing support.  However, we will only do this if we can better support the needs of older and disabled people, and we have ruled out bringing Disability Living Allowance for those under the age of 65 into the National Care Service. 

Whatever the outcome of the consultation, we want to ensure that people receiving any of the relevant benefits at the time of reform will continue to receive the same level of cash support under our new and better care and support system. 

If consultation shows that integrating some disability benefits into a simplified system is the right approach, we would want to ensure that the future care and support system retains and builds on the main advantages of the current disability benefits system.  We know that disability benefits are popular because they provide a universal entitlement which does not depend on where a person lives, they provide a cash budget which can be spent on the services someone wants, and people often use them in ways that help them to stay independent and well for longer. 

These three aspects – a universal system that is consistent across the country, flexible methods of payment through personal budgets and investment in prevention – will all be important components of the new system.

Number10.Gov

Lack of help leaves Chesterfield couple frustrated after APD diagnosis

At age 20, Chelsea Briggs was always turning up the television to what her husband was finding intolerable levels. Convinced they needed to get her hearing tested, the Chesterfield couple couldn’t have imagined Chelsea would eventually be diagnosed with Auditory Processing Disorder (APD); they were then faced with a lack of support and information to help them cope.

“After a hearing test and referral to the hospital, Chelsea was given hearing aids and we thought these would help” Chelsea’s husband Simon explains: “But after further tests we were told she had APD, something we’d never heard of and we were sent away with confusing leaflets and left to cope with it on our own.”

Auditory Processing Disorder is not a problem with the ears in hearing sounds, but a difficulty with the brain in processing them, making it difficult for sufferers to understand speech. There is a lot that isn’t known about the condition.  

“Every aspect of Chelsea’s life is affected. Noisy places are terrible for her and she says that everything feels jumbled up in her head. She struggles to understand instructions - and as she has a physical disability too - I have had to become her full time carer and point of contact for all communication,”

Simon said.

With a 10 month old baby boy, the couple are now worried that their young son may be affected by the condition, which is thought may be passed on genetically. Simon explains: “Our son has had initial hearing tests and we now have to wait until he is over a year old for further tests. This is extremely worrying for us as parents, especially as we are realising how little is known about APD and how there is nothing that can be done”

Simon continues: “The most frustrating thing for me has been the lack of support and knowledge, even when I try to talk to the consultants at the hospital they don’t seem to know how to help. I try to research as much as I can on the internet and this is how I came across the charity Deafness Research UK who sent me some useful information. ”

Vivienne Michael, Chief Executive of Deafness Research UK, said: “Deafness Research UK funds research into Auditory Processing Disorders and we are currently funding a project to develop more accurate diagnostic tests. While the charity is passionate about research and finding new cures and treatments, we are also here to offer help, support, information and practical guidance for people faced with the challenges of hearing disorders. Anyone with any questions or concerns regarding APD can contact our freephone information line on 0808 808 2222 or visit our website where we have an APD fact sheet.”

Deafness Research UK is the country's only charity dedicated to finding new cures, treatments and technologies for the deaf, hard of hearing and other hearing impaired people including tinnitus sufferers. For information on research into deafness and other hearing conditions, log on to the website, www.deafnessresearch.org.uk
ENDS

About Deafness Research UK

•   Deafness Research UK is the country’s only charity dedicated to finding new cures, treatments and technologies for deaf, hard of hearing and other hearing impaired people.
•   The charity supports high quality medical research into the prevention, diagnosis and treatment of all forms of hearing impairment including tinnitus.
•   The Deafness Research UK Information Service provides free information and advice based on the latest scientific evidence and informed by leading experts. The Information Service can be contacted on Freephone 0808 808 2222
•   For more information on research into deafness, tinnitus and other hearing conditions, log on to the website at www.deafnessresearch.org.uk where you can access a wide range of information. Alternatively you can e-mail Deafness Research UK at info@deafnessresearch.org.uk
•   One in seven people in the UK – almost nine million people - suffer hearing loss.
•   Deafness Research UK was founded in 1985 by Lord (Jack) and Lady Ashley of Stoke.
•   In January 2008, Action for Tinnitus Research (ATR) was linked with Deafness Research UK under a uniting direction order under section 96(6) of the Charities Act 1993.

Scientific & medical advances

Since its creation in 1985, Deafness Research UK has awarded over £10 million in research grants to secure radical improvements in the prevention, diagnosis and treatment of all forms of hearing impairment.
The advances we have been responsible for include:
•   the development of the Otoacoustic Emissions (OAE) test to enable doctors to identify hearing impaired babies at birth.
•   research into more effective cochlear implant devices and services, including assessment, fitting and rehabilitation procedures for children.
•   improvements in signal processing for digital hearing aids in order to help improve speech discrimination and understanding, particularly in noisy environments
•   the isolation of genes responsible for many forms of inherited deafness including the most important breakthrough – that mutations in the Connexin-26 gene cause a significant proportion of congenital and childhood deafness
•   research into preventing or repairing inner ear damage, including funding researchers who were the first to report that hair cells in the mammalian balance system can regenerate
•   the discovery that an overproduction of the neurotransmitter glutamate can be linked to tinnitus, a finding which could lead to new drug treatments for the condition.

Further Deafness Research UK achievements can be found at www.deafnessresearch.org.uk and following the ‘achievements’ button. A direct link follows here:
http://www.deafnessresearch.org.uk/Scientific%20%26amp%3 ...

Press enquiries   
Jon Gardner, BeyondPR. Direct line 0114 275 6996. Mobile 07930 697773. e-mail: jon.gardner@beyondpr.co.uk
REF: DR-UK0182 – Chelsea Briggs case study

http://www.deafnessresearch.org.uk

Harper steps up campaign to end mental health discrimination in Parliament

Mark Harper MP, Shadow Minister for Disabled People, has pressed the Government to commit to implementing any recommendations arising from a Select Committee review of existing legislation which means that an MP automatically loses his or her seat if detained under the Mental Health Act. Mark Harper quizzed the Leader of the House, Harriet Harman MP, at Business Questions on Thursday 28th January 2010, after gaining an assurance from Greg Knight MP, Chairman of the Procedure Committee, that he would look at the issue with a view to it being considered by his Committee. 

The Government has already stated in response to an intervention by Mark Harper during the 4th Committee Day of the Constitutional Reform and Governance Bill that it believes that the current law is ‘untenable’ and wants it to be reviewed by a ‘Select Committee’ with a view to changing the law. Following the Minister’s commitment, Mark wrote to the Chairman of the Procedure Committee, Rt Hon Greg Knight MP, in order to alert him to the Government’s commitment, and ask if his Committee will carry out the review at the earliest opportunity.


Previously, Mark Harper tabled an amendment to the Bill which has the aim of removing the discriminatory provisions currently contained in existing legislation, and questioned the Prime Minister on the same subject in June 2009. In addition, the Speaker’s Conference, which published its final report on parliamentary representation on 11th January 2010 also called for Section 141 of the Mental Health Act 1983 to be ‘repealed as soon as practicable’.


Under Section 141 of the Mental Health Act 1983 an MP automatically loses his/her seat in Parliament if detained under the Act for a period of six months or more. By contrast there are no provisions to remove MPs suffering from physical illnesses which stop them from carrying out their duties and responsibilities for the same length of time.


No MP has ever been excluded from Parliament for this reason - but campaigners say it adds to the stigma for people who have mental problems by putting them in the same category as criminals, who can also be barred from the House.


A report by the All-Party Parliamentary Group on Mental Health in July 2008 (supported by the Royal College of Psychiatrists, Mind, Rethink and Stand to Reason) entitled ‘Mental Health in Parliament’, based on a survey of MPs, Peers and parliamentary staff, found that ‘68% (2 out of 3 MPs who responded) believed the fact that an MP will automatically lose their seat if sectioned under the Mental Health Act is wrong’.

Commenting outside the Chamber, Mark said:


“I hope that the Procedure Committee will carry out a swift review of this issue and make recommendations to Parliament. It is up to the Government to then make time available for an early decision so we can reduce the stigma attached to mental health.”

Politics.co.uk

Wheelchair user threatens legal action over disabled access to Orchard Theatre restaurant

A PARAPLEGIC man says he will take legal action if a theatre does not provide disabled access to its newly-opened restaurant.


Wheelchair-bound Wayne Evans was looking forward to dining at The Circle Restaurant at the Orchard Theatre in Dartford before seeing the Rocky Horror Show last Thursday, but was left disappointed after discovering there was no access for disabled people.

Instead the 58-year-old says he and his wife were told they could eat downstairs in the theatre’s foyer bar area and restaurant staff would come down to serve them.

But Mr Evans, who was left paralysed from the chest down following a motorcycle accident five years ago, was not impressed and did not take up the theatre’s offer.

The father-of-four said: “I rang them up and said I was in a wheelchair, and I was told that’s all very well but there’s no access.

“The Disability Act was supposed to eliminate this kind of discrimination.

“I don’t want to be Billy no mates sitting on my own.

“We got there and they had set up a table for two in the corner, which is ridiculous as there must have been at least 100 people in that bar milling around, leaning against the table.

“The rest of the people sat there were just having coffees, that’s what it’s designed for, not for somebody to have a three course meal. I’m glad I didn’t take up their offer.

“It’s embarrassing, unsuitable and totally unsatisfactory, I was quite cross about it all.

“I am peeved to say the least.”

Mr Evans, who lives in Joydens Wood, says there were no lifts and the restaurant could only be accessed by walking up stairs.

He said: “They have a lovely theatre with six disabled seats which are fabulous and six parking spaces in the theatre confine.

“They cater very well for the likes of me, but they have built a new restaurant I can’t even access.

“It’s a clear breach of the Disability Act.”

The former marine claims executive added: “It ruined everything, we were really looking forward to having a meal.

“One of the things I’ve never been able to do is to go to a theatre which has a restaurant as well - all the London theatres don’t.”

Mr Evans has since sent a letter of complaint to the theatre and has also contacted the Equality and Human Rights Commission.

According to public services website direct.gov.uk, The Disability Discrimination Act gives disabled people rights in the areas of access to goods, facilities and services, including larger private clubs and land-based transport services.

The Orchard Theatre is a 1,000-seater venue in Home Gardens which opened its restaurant in October last year.

A spokeswoman for the theatre said she was unable to comment as the theatre director Andy Hill was in a series of meetings.

She also said the theatre would need to first respond to Mr Evans prior to making any further comment.

 This Is Local London

Carers urged to claim help

THOUSANDS of carers in Hartlepool are missing out on the financial support they deserve.

Experts say there are 9,839 people in the Hartlepool local authority area who care for a loved one, but two thirds don't see themselves as carers.

Officials at NHS service Carers Direct want people to get the support which is rightfully theirs.

They say one in 10 people in the town take care of an elderly parent or disabled family member.

But 6,621 of them do not register with health or care organisations, even though they spend 20 hours or more a week looking after loved ones.

A campaign is now being launched for the hidden majority to access the help available.

Dame Philippa Russell, chairwoman of the Standing Commission of Carers, said: "So many of us take on the role of carer without even knowing it.

"Often it starts with offering to help an elderly relative with shopping, or checking if they've taken their medication.

"But before you know it, you're with them several hours or more a week –and, as their ability to look after themselves deteriorates, they rely on you even more."

Television doctor Hilary Jones is lending support to the campaign. He said: "Carers can often neglect their own health and wellbeing, as the person they care for is their main priority."

The project has the backing of a whole host of celebrities.

Actor David Jason said: "I know how difficult it can be to give of one's time and patience on an ongoing basis and I acknowledge the sterling support they give and the sacrifices they make."

Television and radio celebrity Paul O'Grady said: "Just one call to the helpline could make a difference, not only for loved ones, but for the carer themselves."

TV presenter Tony Robinson has personal experience of caring and said: "When I was helping to care for my parents, I found it difficult to know where to turn to get hold of the information I needed."

Choreographer Arlene Phillips helped to look after her father when he was suffering from dementia.

She said: "Though you want to ensure your loved ones are cared for, it can become a strain. So many people around the UK care for family members and friends and they don't realise that there is a lot of support – both emotional and financial – available to them."

The Carers Direct helpline is available for those wanting to find out more, on 0808 802 02 02.

Hartlepool Mail

UK Being Driven to Assisted Suicide by the Emotional Narrative

According to polls, the UK is becoming ever more assisted suicide friendly. From the story:

The public’s support for a change in the law on assisted suicide and euthanasia was uncovered by the YouGov poll following a succession of high profile court cases. Three quarters of those polled said the law should be amended to allow assisted suicide, a crime punishable by up to 14 years in prison. Even if the law was not changed, more than 80 per cent of the 2,053 people questioned said relatives of terminally ill people, who had made it clear they wanted to die, should not be prosecuted.

The disconnect shown by this poll result is rather astonishing.  Assisted suicide has been pushed for the last year in the UK by cases that did not involve terminal illnesses.  Debbie Purdy, for example, has non terminal MS.  Her lawsuit to protect her husband from prosecution if he took her to Switzerland for assisted suicide led to the public prosecutor effectively decriminalizing–by promising not to prosecute–assisted suicides of the terminally ill, disabled, and those with degenerating conditions, so long as the deed is done by family or friends (proving, at least, that AS is not “medical”).  Most recently, a woman who assisted the suicide of her chronically ill daughter (a bad case of chronic fatigue syndrome), was found not guilty of attempted murder–the wrong crime to charge, especially as she had plead guilty to assisted suicide–and is now in all the papers about how killing her daughter as an act of selfless love. Perhaps so, but that is easy to say by those really motivated to put the “beloved” out of their own misery–as was the case with George Delury’s doing away with his wife Myrna Lebov.
And now Terry Pratchett, a famous novelist–what is it with UK novelists these days?–has proposed literal death panels:

Sir Terry Pratchett, the author who suffers from Alzheimer’s disease, is due to deliver a lecture in which he will call for assisted suicide “tribunals” that would give the terminally ill permission to end their lives. In the Richard Dimbleby Lecture, he will offer himself as a test case for just such a tribunal. The panels would include a legal expert in family matters and a doctor with experience of serious, long-term illness, who would determine whether sufferers were of sound mind.

The UK’s social structure is in serious trouble across a broad front–a growing crisis about which the pundits hand wring all the time. The recent UK plague of  assisted suicide deaths–so reminiscent of the Kevorkian binge here in the 1990s–reflects that decline.  Add in the UK’s quality of life-based health care rationing, and it doesn’t look good for the UK’s elderly, disabled, and otherwise expensive for whom to care.

First things

The click of his calliper was as familiar as his voice... Ian Dury's daughter tells how [it] inspired her

Left leg pushed out straight behind her, the five-year-old girl limped around the art gallery, copying the rolling gait of the man in front as he gave her a running commentary on the paintings.

'We must have looked a funny pair,' recalls Jemima Dury, the eldest of legendary rock musician Ian Dury's four children.

'I wasn't making fun of Dad, but wanting to be special and different - which is how he seemed to be to me. I still remember that day, moving along behind him, he never realised I was mimicking him. 'I was trying the walk on for size, in the same way as another child might copy their parent's voice or attitude.'

This month saw the release of Sex & Drugs & Rock & Roll, a film starring Andy Serkis that celebrates the unconventional life of the singer dubbed 'the poet of punk'.

Dury, who died of liver cancer in 2000, aged 57, contracted polio at the age of ten. It left him with a withered left leg and hand, and he wore a heavy metal calliper that gave him what Jemima calls 'his unique way of walking'.

In the poster for the film, Serkis - as Dury - is seen with the young actor who plays his son, Jemima's brother Baxter. The boy is dressed just like his father. 'Baxter and I idolised Dad,' explains his daughter.

Jemima and Baxter, 37, are his children from his first marriage, to Betty Rathmell. The couple divorced in 1985 but remained friends until her death, from cancer, nine years later.

'We would stay with him for the weekend every few weeks,' says Jemima. 'He would wade in with big gestures, presents from Hamleys and trips round Harrods. Neither of us lived with Dad for any real length of time until we were in our teens and able to take care of ourselves - and him a lot of the time.'


Jemima, 41, a retired professional dancer, who lives in Hastings, East Sussex, with her partner Japhy Turner, a club DJ, and children Milo, seven, Gene, five, and Betty, two, says her father's condition has always been part of her life.

'We had never known anything other than Dad having a calliper - or iron - on his left leg. It was part of him,' she says. 'We knew he had to be careful walking and that he preferred certain chairs because they were easier to get in and out of. The click of his calliper was as familiar as his voice.

'Neither Baxter nor I questioned why Dad walked as he did or why he wore the calliper. I was seven before he explained what had happened.'

Dury told his daughter that in the summer of 1949 he had gone swimming at the outdoor pool in Southend, fairly near where he grew up in Upminster, Essex. While he was there, he had almost certainly picked up the polio virus that paralysed him.

Poliomyelitis - described in medical text at the time as an 'inflammation of the grey matter of the spinal cord' - is caused by a virus, resulting in an acute infection. Polio was one of the most feared and studied diseases of the first half of the 20th Century. It was not possible to predict where or whom it would strike, but most victims were children.

The epidemics of the Forties and Fifties caused public panic and many of the 120,000 people now in the UK who have had polio contracted it then. The disease is transmitted primarily through ingestion of material contaminated with the virus, found in saliva and faeces. This often happened in swimming pools, where young children's hygiene could be questionable.

Dury came down with heavy flu-like symptoms a week or so after going to the pool, while he was holidaying in Cornwall with his Aunt Moll at his grandmother's home. Moll's father had been a doctor and, recognising the symptoms, the family took Dury to Truro hospital where he stayed for several months.

Contrary to common belief, most of those infected experience only mild respiratory or gastrointestinal symptoms, often accompanied by fever, headache and muscle stiffness. Dury was unlucky. Apart from his right hand, head and face which remained normal, almost all of his body was paralysed.

'Dad ended up with arm, leg and buttock-muscle wastage on his left side - his hand was very small and twisted, he couldn't hold things in it easily,' Jemima explains.

'The muscles on his right side were also affected and his feet were different shapes, the left foot was very small and thin. The discharge note from the hospital said, "Still incontinent, almost complete paralysis of both arms and legs." '

Dury then spent three years at Chailey Heritage Craft School in East Sussex, an institute for the disabled that aimed to rehabilitate patients enough for them to learn a trade.

The regime was tough, and both physical and mental abuse were rife. From there he went to art school, going on to become an art teacher himself before finding fame in the late Seventies with The Blockheads.

Their 1977 breakthrough single Sex & Drugs & Rock & Roll was followed a year later by Hit Me With Your Rhythm Stick, which reached No 1 in the UK in 1979, selling nearly a million copies.


Always out to shock, Dury would often refer to himself as a 'raspberry ripple' - cockney rhyming slang for cripple. The BBC banned his 1981 song Spasticus Autisticus, his scathing reaction to that year's International Year of Disabled Persons, which he thought was patronising.

But at home, Dury showed a softer, perhaps even vulnerable, side. 'I remember Dad trying to help me with a dressing-up box costume but he couldn't do the buttons up,' says Jemima with a smile. 'We fell about laughing - but I could tell he was frustrated.'

Dury was keen that his children helped him to put on his calliper - which he referred to as 'the leg'. 'Baxter or I would help him pull a long stocking made of very soft material up to the top of his thigh to make him more comfortable once the horribly heavy metal bars and knee hinges of the leg went on,' recalls Jemima.
During the making of the film, Serkis suffered from groin and back problems after wearing a heavy Seventies-style calliper for hours. One can only imagine the pain Dury must have endured.

Despite the disease's legacy, Dury's love of swimming was unabated. As a teenager, he took part in a Paralympic games. Even though he had muscle wastage elsewhere in his body, he built up a huge lung capacity and muscular arms.

By the time Jemima was born, swimming no longer posed the same risk. An immunisation programme that started in 1955 had virtually eradicated polio in the UK.

Jemima says her father was 'incredibly open and confident. He always believed himself to be attractive - which he was'. Indeed, far from letting his disabilities hold him back, Dury led a riotous life - his womanising was legendary.

It was not until the early Nineties that he settled down with his second wife, sculptor Sophy Tilson, who was 22 years his junior. They had two sons, Bill and Albert, now 15 and 12.

'He embraced the trappings of a rock-star lifestyle and if he was drunk and feeling tough he would throw himself around,' says Jemima. 'Baxter and I knew the drill. If he fell over you grabbed his right hand and pulled him up on a slight diagonal. But as Dad grew older - especially once he was famous - I felt increasingly protective of him.'

Although he would rarely admit avoiding anything because of his disabilities, there was an exception - the galley kitchen in his mother Peggy's old flat in Hampstead, in which he lived when he married Sophy.

'It was so narrow that he feared he would fall over and not be able to get up,' recalls Jemima. 'So he never made a cup of tea, washed up or cooked. Maybe it was just a cunning way of getting out of chores.'

Towards the end of his life, Dury became a keen Unicef ambassador. Despite undergoing constant chemotherapy he travelled to Sri Lanka with Robbie Williams and to Africa to promote a polio vaccination campaign.

'Dad saw polio as a positive attribute and retained his wonderful sense of humour,' says Jemima.


'When we scattered his ashes off Hammersmith Bridge we also threw his "leg" ceremoniously into the river. Dad would definitely have approved.'

• Ian Dury, The Definitive Biography, by Will Birch, is published by Sedgwick & Jackson at £18.99

The Mail Online

Bus firms urged to get on board with scheme to help disabled and elderly

A NEW campaign has been launched to get audio and visual information on board all buses and coaches.

National charity Guide Dogs say “talking buses” that give clear audible and visible announcements about the next stop and final destination will help disabled and elderly people to use buses and coaches safely and with confidence.

The charity’s campaigns manager, David Cowdrey, said: “The law requires new trains and trams to have audio-visual (AV) information systems – but not buses and coaches.

“The lack of information on board makes bus travel less accessible than rail travel. It's time for the bus to catch up!

“Lack of AV information undermines the independence of many people who rely on bus services to get around.”

Guide Dogs’ research into disabled people’s views and experiences of bus travel shows they often feel anxious and vulnerable, and depend on others to find the right stop.

Many give up using buses altogether.

One partially-sighted woman, who was interviewed by Guide Dogs, said: “I have to ask the driver to tell me when to get off and they don't always remember.

“A bus should give me my independence, not take it away. Please introduce ‘talking buses’ so we all know where we are.”

A Merseytravel spokesperson said: “We would dearly like to be involved in such a project, but there is the issue of funding. We are, however, monitoring the progress of this project with great interest.”

Guide Dogs wants people to contact their local MP, asking them to sign Early Day Motion 506 supporting the campaign, and to write to Sadiq Khan MP, the minister responsible for public transport. You can do this via the Guide Dogs website at www.guidedogs.org.uk/talkingbuses

Liverpool Echo

Supermarket parking limits 'breach' disability laws

The UK's big supermarkets are breaking disability laws by having strict time limits in about two-thirds of their car parks, charities have told the BBC.

Private firms run some of the parking areas for Tesco, Asda, Sainsbury's and Morrisons and customers face penalty charges for overstaying.

But under the Disability Discrimination Act, businesses need to make extra allowances for disabled people.
The supermarkets say they will review their policies on disabled parking.

Supermarkets are increasingly using private parking firms and automatic number plate recognition systems to limit customer parking, often to two hours.

'Acknowledge problem'

The restrictions are to discourage drivers from abusing the free parking spaces.

BBC Breakfast contacted 200 large supermarkets from the four main chains.

Of the 124 that imposed parking time limits, about two-thirds said they did not give disabled people any extra time to shop, which is a breach of the law.

Britain's motorists are being stealth taxed by another dubious practice Neil Herron Motorist campaigner

Neil Coyle, from the charity Disability Alliance, said: "Supermarkets need to acknowledge there is a problem, and secondly, very quickly they need to ensure their car parking procedures conform with the law.
"You or I can stamp our feet and say how outrageous it is but at the end of the day there is a law that protects disabled people from this happening."

He said the supermarkets needed to end the "unfair charges" or "they can wait until someone takes a legal case and potentially face a considerable compensation case".

Motorist campaigner Neil Herron said supermarkets should get rid of the "draconian" and "legally questionable" private enforcement process and handle car parking in house.


"If someone is abusing the system, clamp them, charge them a £2.50 clamp release fee, handled by their own staff.

"Britain's motorists are being stealth taxed by another dubious practice," he said.

The BBC's Keith Doyle said all four supermarket chains have said they will review their policies on disabled parking.

"If you do need extra time, the advice is to go to customer services in the supermarkets - they have all told us they will make allowances, they will review their policies - so give customer services your registration number and hopefully you won't get a ticket," he said.

BBC

Age Concern/Help the Aged, Carers UK, Counsel and Care and Parkinson's Disease Society support government legislation

A coalition of charities has urged peers to back government legislation to provide free personal care at home for people with high needs, when it enters the House of Lords next week.

Age Concern and Help the Aged, Carers UK, Counsel and Care and the Parkinson's Disease Society have thrown their weight behind the Personal Care at Home Bill, which has its second reading in the House of Lords on Monday. (1st Feb)

It has already cleared the House of Commons, but crossbench peers and Labour rebels are expected to join the opposition parties in the Lords in asking tough questions of the government.

The bill would provide free care at home to about 280,000 people in England - 166,000 of whom already receive free care - and reablement services to 130,000 people a year.

With the bill due to cost £670m a year - £420m from government and £250m from council efficiency savings - and 1.8m people receiving care in England, the government has been criticised for focusing its resources on a minority of users.

However, in a joint statement, the charities said: "Care charges for those with critical needs are often a crippling cost to families already struggling with the financial impacts of illness or disability. This bill would mark an historic end to means-testing and charging for some of the most vulnerable people in our society to provide for their most basic care needs.

"The older and disabled people, families and carers we represent have long called for an end to charging for care services - and they would not forget if this opportunity was missed to end unfair charges for those most in need. People want to know what care they will get and how much they will be asked to pay."

Community Care

Deaf Alerter® recognised as the first inclusive access product for leisure operators

 

As demand increases within the leisure and fitness industry for accessible products to meet the legislative requirements of the Disability Discrimination Act (1995 & 2005), Deaf Alerter^® PLC’s DA2000 System is the first product to receive Inclusive Fitness Initiative (IFI) Recognised Product status.

IFI Recognised Products is an exciting new opportunity for suppliers to showcase their accessibly designed products, identifying them as market leaders of quality and inclusion within the UK sport & fitness market. The IFI are working closely with the industry to recognise many different types of access products from gripping aids to gym mats, lockers to lifts and water coolers to wheelchair ramps to name a few.  Deaf Alerter^® has been identified as the very first IFI Recognised Product and will be listed under Fire Evacuation Safety Products within the IFI Recognsied Products portfolio which will be available on-line, free of charge.

One in seven (9 million) of the UK’s population experience some degree of hearing loss; many of these people are unable to hear fire alarms or public address announcements.

IFI Recognised Products status has acknowledged the unique and original design of the Deaf Alerter^® system and the benefits it provides to both Deaf people and leisure operators in reducing the time spent evacuating a facility.

In achieving this recognition, Deaf Alerter^® has met all of the specific IFI Recognised Products Specification criteria focusing on the inclusive aspects of a fire alert system for Deaf and hard of hearing people.

Liz Parslow, Marketing Director of Deaf Alerter^® comments

“Deaf Alerter plc is very proud that our DA2000 fire alarm warning and messaging system is the first product to achieve IFI Recognised Product status; we consider life safety to be of the utmost priority.

By installing the DA2000 system, facilities seeking IFI Mark Accreditation will be taking extra precautions to ensure that vital evacuation procedures are at their best.  Inclusive fitness also needs an inclusive environment.”

With increasing demand from IFI Mark accredited fitness facilities and the growing numbers of both public & private facilities that are working towards meeting the requirements of the IFI Mark standards it is anticipated that the portfolio of IFI Recognised Products will provide a fast, effective and trusted resource which facilities will refer to in order to source access products and enhancements.

The IFI now boasts an extensive network of IFI Mark accredited facilities throughout England, Scotland and Northern Ireland. The IFI’s strategy ‘Inclusion Works Out’ has identified a target to accredit 1000 fitness facilities throughout the UK by 2012. Leisure providers are already acknowledging IFI Recognised Products as a fantastic and welcomed addition to the support available in creating accessible and inclusive environments.

Further information about IFI Recognised Products is available at www.inclusivefitness.org

Panorama Poll Suggests Support For Assisted Suicide

Almost three-quarters of people support assisted suicide for someone who is terminally ill, a BBC poll suggests.

 

However if the illness is painful and incurable, but not fatal, then backing falls to slightly under half.

The survey of just over 1,000 people was carried out for Monday’s edition of BBC One’s Panorama programme.

It features Kay Gilderdale who was cleared last week of attempting to murder her daughter Lynn, who had the chronic fatigue syndrome ME.

Ms Gilderdale admitted aiding and abetting the suicide of her 31-year-old daughter and was given a 12-month conditional discharge.

Lynn was found dead at their home on 4 December 2008.

The survey found that 73% of those asked believed that friends or relatives should be able to assist in the suicide of a loved one who is terminally ill.

But, if – as in the case of Ms Gilderdale’s daughter – the illness is not terminal, support for assisted suicide falls to 48%.

‘At peace’

Lynn was bedridden by the age of 15, and was admitted to hospital more than 50 times with a succession of serious illnesses over the next 16 years.

Ms Gilderdale told the programme: “I know I did the right thing for Lynn. She’s free and at peace where she needed to be. Whatever the consequences, I would do it again.”

The survey was carried out earlier this month and the figures are broadly in line with previous surveys.

Last year, the Director of Public Prosecutions issued guidelines on when assisted suicide cases should be taken to court.

But campaigners have said there still needs to be more clarity in the law.

Panorama: I Helped My Daughter to Die is on BBC One on Monday 1 February at 2030 GMT.

Same Difference

Dancing on Wheels

The BBC have launched a fantastic Dancing on Wheels website which can be found at 

http://www.bbc.co.uk/dancingonwheels/.

It’s packed full of information, including sneak preview clips of the show, the history behind wheelchair ballroom dancing, interviews with each of the dancers and an interactive game; it’s well worth

browsing through.

The website also has a link to the Ouch message board encouraging people to chat about the show and share their experiences and advice.  It would be great if you could spend a little time dipping in and out of the message board with genuine comments, giving bloggers a first hand insight into the world of ballroom dancing.  Lots of people are excited about the show but there’s also those who seem less convinced.  Whatever involvement you have had with wheelchair dancing, it would be great for people to know about it.  At this close stage to broadcast, it is important to raise awareness of the show and most importantly, get people talking and watching.

CAFT Presents 2010 Events

Thursday 29 April at Mere Golf and Country Club
Golf Day
£460 per team of 4

Sunday 16 May
Bupa Great Manchester 10k Run
Regristration fee £25 minimum sponsorship £150

Wednesday 16 June at Mere Golf & Country Club
Ladies Lunch
Tickets £40

Saturday 19 June at Whitchurch
The CAFT Skydive
Registration fee £70 minimum sponsorship £395

Tuesday 22 and 23 June at Tabley
CAFT at the Cheshire Show

Saturday 26 June at CAFT
Midsummer Ball
Tickets £45

Wednesday 21 July to Sunday 25 July at Tatton Park
CAFT at the RHS

Sunday 22 Agust at CAFT
CAFT Open Day

Saturday 4 to Suday 5 September
The Cheshire Team Trek
Registration fee TBC minimum sponsorship £1500 per team

Thursday 18 to Tuesday 23 November
Sahara Stomp
Registration fee £150 minimum sponsorship £ 1775 (team discounts)

Saturday 4 December at Mere Golf & Country Club
Grand Ball
Tickets £70

Sunday 19 December at Hale Village Centre
Carol Concert

For for information about any of these events please e-mail: events@caft.co.uk, or telephone 01565 830053

www.caft.co.uk

Take a leap of faith!

This M.E. Awareness Week Action for M.E. is hosting two special skydiving events in Maidstone and Salisbury on 15 May. This is your chance to do an exhilarating 10,000ft freefall skydive and raise funds for our charity. All places must be booked by 7 March. Contact Nicola, on 0117 930 7293 or book online.

Action for M.E.