Skip to content

Francesca Martinez Gives The Best Moment Of Question Time For A Long Time

June 14, 2019

Music Festival Lighting ‘Can Trigger Epileptic Fits’

June 14, 2019

Strobe lighting at music festivals can increase the risk of epileptic seizures, researchers have warned.

The Dutch team said even people who have not been diagnosed with epilepsy might be affected.

Their study was prompted by the case of a 20-year-old, with no history of epilepsy, who suddenly collapsed and had a fit at a festival.

The Epilepsy Society said festivals should limit lighting to the recommended levels.

Epilepsy is a condition that affects the brain. There are many types, and it can start at any age.

Around 3% of people with epilepsy are photosensitive, which means their seizures are triggered by flashing or flickering lights, or patterns.

The Health and Safety Executive recommends strobe lighting should be kept to a maximum of four hertz (four flashes per second) in clubs and at public events.

‘Life-affirming’

The researchers studied electronic dance music festivals because they often use strobe lighting.

They looked at data on people who needed medical care among the 400,000 visitors to 28 day and night-time dance music festivals across the Netherlands in 2015. The figures included 241,000 people who were exposed to strobe lights at night-time festivals.

Thirty people at night-time events with strobe lighting had a seizure, compared with nine attending daytime events.

The team, led by Newel Salet of the VU Medical Centre in Amsterdam, writing in BMJ Open, said other factors could increase the risk of seizures.

But they added: “Regardless of whether stroboscopic lights are solely responsible or whether sleep deprivation and/or substance abuse also play a role, the appropriate interpretation is that large [electronic dance music] festivals, especially during the night-time, probably cause at least a number of people per event to suffer epileptic seizures.”

They advise anyone with photosensitive epilepsy to either avoid such events or to take precautionary measures, such as getting enough sleep and not taking drugs, not standing close to the stage, and leaving quickly if they experience any “aura” effects.

Mr Salet told BBC News: “If a person has no predisposition for epilepsy, then factors like strobe lighting will not have any effect. However, most people are unaware of this predisposition they might have: more than a couple of cases explicitly reported this to be the first time they experienced an epileptic fit.”

Clare Pelham, chief executive at the Epilepsy Society, said: “The festival season has become something of a rite of passage. We would encourage festival organisers to at least warn visitors that they are using strobe lighting so that festival-goers can decide whether it will be safe for them to attend before buying their tickets.

“But it would be really life-affirming, in these days when we aspire to inclusivity, if organisers could do the responsible thing and keep the strobe lighting at a rate that should not pose a risk.

“The festival season is all about having a good time, but that should include everyone together, in a safe and supportive environment.”

Universal Credit Delays A Factor In Sex Work,, Government Accepts

June 13, 2019

The government has dropped its hardline refusal to accept that destitution caused by five-week waits for universal credit payments has been a major factor in forcing some women to turn to sex work.

Giving evidence to the work and pensions select committee, the minister for family support, Will Quince, apologised for a memo his department sent to the committee last month and said it “did not very well reflect my views on this issue”.

The memo dismissed evidence that universal credit was a cause of increased numbers of women turning to sex work as anecdotal. It said the phenomenon was influenced by a range of factors, from drug addiction and the rise of AirBnB to EU immigration.

Quince told the committee he had changed his views after hearing accounts from four women who gave evidence of how impoverishment related to universal credit issues had led them to take up escort and brothel work.

“Those very brave testimonies of the young women who have gone through the most horrific of experiences gave me a better understanding through their lived experiences. What it showed me more than anything is we need to better understand this area,” he said.

A transcript of the private committee hearing in May included a testimony from M, a brothel worker. She said the fact that drug and alcohol drove people into survival sex workdid not mean that universal credit had not caused “a really big influx”.

She said: “It is particularly bad with universal credit because we have seen these huge waits, but the whole welfare system is stacked against us and it is pushing people into survival sex work.

“It is the long wait, it is the payments in particular that I think are really dangerous because when we apply for things like this we are in crisis already, like we don’t have the ability to wait, and sex work is the only real job you can go out and earn money that night.”

T, a care worker, who went into escort work after using food banks during a six-week wait for her first universal credit payment, said: “It is horrible to say, but it is the easiest thing to keep us girls alive.”

Another witness, K, said she had worked out she would be £200 a month worse off on universal credit. “I will sell my body. I want to tell this committee that there are a lot of girls out there just like me,” she said.

The committee also heard an unexpectedly positive, if qualified, endorsement of the recent report by the UN rapporteur Philip Alston, who last month called austerity cuts the “systematic immiseration of a significant part of the British population”.

Amber Rudd, the work and pensions secretary, responded at the time by saying the report was politically biased. She alleged that Alston did not do enough research, having only visiting the UK for 11 days, and said the government would complain to the UN.

Donna Ward, the Department for Work and Pensions (DWP) senior civil servant responsible for children, families and disadvantage, told the committee chair, Frank Field, that it had fact-checked Alston’s report, which had in passing referred to a rise in survival sex.

“He made a lot of good points. It was factually correct,” she said. “I think where the secretary of state took issue with it, and where I as a civil servant can’t be involved, was the political interpretation of a lot of what’s happened.

“But in terms of the facts, in terms of austerity, cuts to local government, in terms of the reliance that we have on the labour market and the risks we face if there is a recession – all of those things were really good points that we have taken on board, and we should take on board.”

Disabled Doctors

June 13, 2019

An A&E consultant, a psychiatrist, and two junior doctors swap notes on being disabled in the medical profession.

Emergency medicine consultant Dr Cieran McKiernan speaks on the perils of self-diagnosis. He lost his leg after failing to treat a blister which became a 5cm-sq hole in his foot.

Trainee GP Dr Hannah Barham-Brown’s wheelchair means she’s regularly mistaken for a patient, while Dr Emily Burns spotted one patient’s ‘diagnosis’ of Query Malingering – a euphemism for faking it – was actually Ehlers Danlos syndrome, a rare condition she has herself.

Dr Caroline Walker says she hasn’t got to go far to find doctors who, like her, have mental health difficulties.

The foursome chat about the ups and down of the medical profession, the ambition to embrace diversity and how working less than full-time hours could be beneficial to all junior doctors.

Produced by Emma Tracey. A full transcript is available here.

Epilepsy Has The Second-Highest PIP Refusal Rate Among Conditions

June 12, 2019

Helen Purdon’s life was turned upside down in September 2017 when her application for personal independence payment (PIP) benefit was rejected. Purdon, 47, had been on disability living allowance (DLA) for 10 years, following a diagnosis of epilepsy, which means she has seizures every 10 to 15 days. She is unable to work and assumed her transfer to PIP would be seamless. But she was wrong. “It was unreal. My DLA stopped, which was around £400 a month. I didn’t get any money at all for months,” she says. “We couldn’t afford to put petrol in the car, we were living off pasta and beans.” Purdon, who is from Irvine in North Ayrshire, decided to appeal against the PIP decision.

It took more than a year, but in October 2018 a tribunal found that Purdon was entitled to PIP, awarding her £119.90 a week and backdated payments of £5,700.

Purdon’s case is all too common. According to the latest figures from the Department for Work and Pensions, more than half of existing epilepsy patients and two-thirds of new claimants are being denied disability benefits.

PIP was introduced in England, Scotland and Wales in 2013, replacing DLA. The benefit is supposed to cover some of the additional costs of having a long-term health condition, and is available to people in or out of work. It is worth up to £87.65 a week to meet daily living needs, plus up to £61.20 a week for the mobility element, depending on assessment.

But since PIP was introduced, 65% of claims from people with epilepsy who did not have DLA were rejected, while 54% of those in receipt of DLA were turned down for PIP, the second-highest refusal rate of all health conditions and double the national average. Of those who challenged the decision 78% won on appeal. According to Epilepsy Scotland, which obtained the figures, the benefit assessment system is flawed because it fails to take account of fluctuating conditions like epilepsy. Claims assessors focus too heavily on the type and number of seizures a person has, while ignoring other symptoms like memory impairment, confusion, anxiety and depression.

Frances Brown, Epilepsy Scotland’s welfare rights officer, says: “About 70% of my work is PIP-related. Since 2017 we have had to double our workforce to cope with demand and have recovered £1m in unpaid benefits, including PIP.”

Being denied PIP brings financial hardship but also damages mental health. “We’ve had numerous people tell us that they don’t want to be here any more – that they have had enough,” says Brown. “It’s that feeling of not being believed – of not being listened to.”

Epilepsy charities in England and Wales are also reporting soaring demand for help. Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, says the number of people contacting their helpline about PIP rocketed by 123% between 2016 and 2017. “Many people use that benefit to travel to work on public transport, as a lot of people with epilepsy can’t drive. If people lose that money, they lose the one thing that might give them their one bit of independence,” he says.

An early-day motion, signed by 34 MPs, expresses “serious concern” at the number of people with epilepsy being denied PIP, and “alarm” at rejection rates. They want the government to make the system fairer for people with epilepsy.

The figures are just the latest in a litany of problems with PIP. Disability rights organisations and patient groups have widely campaigned against the PIP process, which a former top civil servant described as Kafka-esque in its complexity when his own application was rejected. Last year a cross-party committee of MPs concluded the system was failing a “substantial minority” of claimants; the process was undermined by basic errors, insensitivity and ignorance about people’s conditions. The criticisms prompted key changes to PIP guidance.

In November 2017 and again in June 2018 the DWP issued amended guidance, following a successful legal challenge, which found that government policy had been “blatantly discriminatory” against people with mental health conditions. This has resulted in an increase in the mobility element of the benefit for some epilepsy claimants. Even so, nearly half of claims since November 2017 were still turned down.

In theory, things should improve for epilepsy patients in Scotland, as the Scottish government intends to reform PIP when responsibility for the benefit is devolved next year, with changes coming in 2021. Scotland’s social security secretary, Shirley-Anne Somerville, says: “We will be replacing PIP with disability assistance for working-age people, a new person-centred benefit. We will be working to get decisions right first time, supported by a reformed assessment process, delivered by Social Security Scotland, not the private sector. We will reduce the need for face-to-face assessments, but, where these are necessary, we will provide people with choice and flexibility over their appointment. Our new system will also provide for the needs of people with fluctuating conditions like epilepsy.”

PIP has not been devolved in Wales but the Welsh government has repeatedly called for the system to be overhauled. A government spokesman says: “We will be carrying out research into the implications of devolving parts of the benefits system to Wales. This will include looking at the Scottish model.”

Charities in England also want a reformed system. Phil Lee, chair of Epilepsy Action, says: “We are looking at what’s happening in Scotland very closely; it’s an opportunity to learn from mistakes and put them right. Hopefully, we will see a better system in place in Scotland which the rest of the UK can model – Scotland is leading on this.”

In a statement, the DWP said 27% of people with epilepsy get the higher level of PIP support compared with 6% under DLA. “In November 2017 we updated our guidance, which will increase entitlement for a number of claimants, particularly those with conditions such as epilepsy.” It is now identifying existing claimants who may be entitled to more PIP support.

Back in Irvine, Purdon is finally getting her life back on track. “I feel a lot less stressed. We’ve got money for the house and we don’t have to worry about food bills. It also means I can give my daughter pocket money again – having to say ‘no’ to her for all those months was heartbreaking.”

Case study – Murray Goulder

HR professional Murray Goulder, 39, from Crawley, West Sussex, knows firsthand just how difficult it is to qualify for PIP if you have epilepsy. Goulder takes 20 tablets a day to reduce the risk of seizures, which come without warning and bring mental “absences”. Each episode can last from a few seconds to three minutes. He has four or five seizures a month, but they are unpredictable – one weekend he had 90.

“I have almost walked off train platforms before, without knowing,” he says. “I get tired very easily and terribly forgetful – my memory is in tatters – and my mood can be drastically effected. I also have constant headaches.”

Goulder applied for PIP when his DLA – worth £174 a month, typically spent on public transport and medication – ended in November 2017. His application was rejected but was finally granted this February on appeal: he was awarded £468 a month with £6,608 in back claims. He says: “It caused a lot of stress and made me feel like I was a liar. It meant I didn’t have enough money for pursuing my hobbies like going to concerts and the theatre.”

EastEnders Working With The National Autistic Society On The Carters’ New Storyline

June 12, 2019

EastEnders is working with one of the most renowned autism support groups in the world on the Carters’ new storyline.

In Tuesday’s (June 11) episode, Mick (Danny Dyer) and Linda (Kellie Bright) were told during a medical appointment that their son Ollie could have autism, but will need to undergo an extended assessment for a definitive diagnosis.

The upcoming weeks will see the Carters begin the autism assessment process, and in order to ensure authenticity, EastEnders writers have been working with the National Autistic Society.

EastEnders executive producer Jon Sen has described this upcoming storyline as the latest example of the soap’s commitment to “ground-breaking stories that resonate with the nation”.

“When Mick and Linda start to worry about Ollie’s behaviour, they face various challenges as they search for the answers necessary to help their son,” Sen explained.

“EastEnders has been privileged to work closely with the National Autistic Society to accurately depict the pressure and struggles that can be felt by parents as they begin this journey.”

Jane Harris of the National Autistic Society said that the organisation is “absolutely delighted” to collaborating on a storyline that will bring the reality faced by many families to light.

“We jumped at the chance to be involved because we recognised that it was a fantastic opportunity to help millions of viewers understand more about the autism assessment process and what families go through in order to get a diagnosis,” she said.

“There are over 700,000 autistic people in the UK and most people know someone who is autistic, whether it’s a friend, classmate, colleague or family member. Yet only 16% of autistic people and their families feel the public understand autism and half of autistic people sometimes don’t leave the house because they’re afraid the public won’t understand them. So it’s hugely encouraging to see more TV dramas representing storylines about autism in their work.”

EHRC Asked To Investigate DWP Deaths Cover-Up

June 12, 2019

With many thanks to Benefits And Work.

Labour MP Debbie Abrahams has asked the Equality and Human Rights Commission (EHRC) to investigate the possible cover-up by the DWP of documents relating to the deaths of claimants, Disability News Service (DNS) has revealed.

John Pring at DNS has been waging a campaign for years to expose previously secret ‘peer reviews’ into the deaths of claimants. He has also uncovered and highlighted coroners letters to the DWP warning of concern over some deaths.

DNS has for some time tried to discover whether the DWP passed on information about the reviews and coroners letters to Dr Paul Litchfield, who carried out independent reviews into the work capability assessment (WCA).

The DWP have now finally admitted that no such documents were given to Litchfield, even though it is clear they would have been extremely relevant to his work.

The DWP’s only excuse is that Litchfield did not ask for them. But given that the documents were secret and he had no knowledge of their existence, this does seem a rather flimsy excuse.

Abrahams has written to the chief executive of the EHRC expressing her concern that the information was not passed on to Litchfield.

Abrahams also questioned the lack of any official scrutiny into the way claimants are treated by the DWP and its agents, writing:

“As you will be aware, there are a large number of social security claimants who have died after being found fit for work or having their PIP [personal independence payment] refused or reduced.”

Abrahams has asked for an investigation into deaths related both to PIP and WCA assessments.

You can read the full story on the DNS website

Continuing Care Funding Is A Scandal Say Families

June 11, 2019

Thousands of vulnerable patients in England are missing out on NHS funding for home care that they are legally entitled to, it is being claimed. Some families say they have spent nearly all their life savings on filling the gaps.

When 83-year-old Joyce Bryant became ill two years ago with viral encephalitis, it was a tipping point. The illness left her with a substantial brain injury and unable to care for herself.

“Her behaviour was just manic,” says her daughter Lyn Timothy. “She was banging on windows. She was hitting out at my dad, pulling plugs out of the sockets in the hospital ward.”

The family decided additional support was needed to enable Joyce to stay at home with her husband and applied for funding from NHS continuing healthcare.

CHC covers the cost of social care for people with complex medical conditions, if the health problem is deemed the main reason they require such help.

It exists in a similar form in Wales and Northern Ireland, where it is delivered by health boards. Scotland has different care arrangements called Hospital Based Complex Clinical Care.

‘Spending savings’

But despite clinical documents and videos showing Joyce’s “unpredictable behaviour” – those who apply are judged according to national guidelines – the family’s local Clinical Commissioning Group (CCG) found her needs did not meet its criteria.

“They said her behaviour was not unpredictable. It could be anticipated,” Lyn says, adding she is unable to understand its rationale.

Her mother is now confined to bed and has been placed on an end-of-life care register by her GP due to a deterioration in her health.

Joyce’s husband, Pete, who is in the early stages of dementia, has had to spend most of their savings on her 24/7 care needs and their funds are running out.

They are eligible for care home funding, but Lyn says the couple – who have been married for 57 years – have always wanted to stay together at home.

West Hampshire CCG said decisions in the case were taken by a panel of health and social care professionals, with input from Joyce’s GP.

“A new application for funding can be made at any time and we would be happy to provide support,” it said.

‘National scandal’

Every year about 160,000 applications are made for continuing healthcare, costing the NHS around £3bn.

Lloyd Tingley, chairman of the Continuing Healthcare Alliance, says the system is a “national scandal” denying many people the free healthcare they are entitled to.

“Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free,” he said.

Last year, the Parliamentary and Health Service Ombudsman received 496 complaints about continuing healthcare funding and investigated 196.

The BBC previously reported thousands of people have died awaiting an NHS decision on eligibility for continuing care funding.

Labour MP Meg Hillier, chairwoman of the Public Accounts Committee, told the programme this was “just not acceptable”.

“There needs to be real political will behind this to make sure those who are eligible are getting the money they need,” she said.

Andrew Farley, of Farley Dwek Solicitors, said there were “thousands of people who have been forced to sell their houses to pay for the care in circumstances when they ought not to”.

He said many people did not know about the existence of the funding, as they had not been told about it, or had difficulties “navigating the complexities of the system”.

Suzanne Morrison’s son John has cerebral palsy and cannot use his arms or legs.

His continuing healthcare funding was withdrawn in 2009, leaving his parents battling with their local commissioning group for 10 years.

“Fighting for John has nearly broken me,” Suzanne explains.

“Watching somebody disappear, when you know it can be stopped. It’s depressing, demoralising and it encompasses every conversation I have with my husband.

“You would like to give up sometimes, but I can’t and I won’t. It’s not what we do.”

In the last month, Wiltshire CCG has concluded that John now qualifies for fully-funded care.

His parents say they now intend to claim back £300,000 from the NHS, having spent most of their savings on his care.

“I am relieved because now the three of us can have a normal life again. A family life,” Suzanne says.

‘Complex area’

Campaigners say the problem is due to funding cuts.

Analysis by the King’s Fund suggests there has been a shift towards more people receiving fast-track continuing healthcare, usually for short periods of time, rather than the standard care – which is provided for longer, and therefore more expensive.

It also noted since NHS England was given a target to cut the projected rise in cost of continuing healthcare, in 2015-16, the number of people receiving it had begun to decrease relative to population size.

An NHS England spokesman said: “Spending on continuing healthcare is increasing and it is for CCGs to manage assessments based on demand in their area.

“There is still potential, however, to make the process more efficient and effective for patients, as the majority of people assessed turn out not to be eligible.”

Julie Wood, chief executive of NHS Clinical Commissioners – the umbrella body for the 212 CCGs in England – said continuing healthcare was “a complex area”, but that CCGs were “working hard to improve systems and processes to make it better and fairer for those that need it”.

“In 2016-17, spending on continuing healthcare represented 4.3% of the entire NHS budget,” she added.

Goggles Give Maisy Her Sight Back

June 11, 2019

Maisy is about to be able to read for the first time in years.

She lost most of her vision six years ago due to a brain tumour. What vision she has, is limited to a tiny blurry circle in her right eye.

She joined BBC Click’s Spencer Kelly at the recent Hay Festival to put some new goggles to the test in front of an audience.

Touching Paintings- And Feeling Included In Art

June 11, 2019

Tony Giles, who is completely blind and severely deaf, is backpacking independently around the world and has visited more than 120 countries.

On his travels around Ethiopia he visits a studio containing paintings which were part of a wider exhibition designed for blind and partially sighted people to experience.

The BBC Travel Show meets him to find out more.

DWP Apologise To Jodey Whiting’s Mother

June 11, 2019

The mother of a disabled woman who took her own life after some benefits were stopped has been given a personal apology by government officials.

Jodey Whiting, 42, from Stockton, had some payments halted after she missed a capability assessment because she was in hospital with pneumonia.

The Department for Work and Pensions (DWP) later admitted mistakes were made and paid the family compensation.

Senior officials travelled to Teesside to explain what changes have been made.

Ms Whiting, a mother of nine, suffered multiple physical and mental health issues including curvature of the spine and a brain cyst, and took 23 tablets each day.

Following her death in 2017, an independent inquiry found that the DWP did not follow procedures, such as telephoning and visiting Ms Whiting after she missed the appointment.

Her mother, Joy Dove, who has been campaigning for justice, said the officials told her they felt they had to apologise in person.

She said they “seemed sincere”, but “apologies mean nothing, they won’t bring Jodey back”.

Mrs Dove said: “They said ‘we really want to tell you how for each of those failings, changes have been made’.

“They said they are going to make it so you can phone up and get every consideration over the phone, instead of having to go in.

“They are going to employ people from [mental health charity] Mind, they are going to get consultants, going to train staff, they mentioned 26,000 staff.

“They kept saying sorry for that, sorry for that, but in the end I said, ‘OK are you going to put it into writing?’ and they said ‘yes’.

“I said to them, if you’re putting it in writing, please put it in Jodey’s name so our daughter didn’t die in vain.”

The Department of Work and Pensions said in a statement: “Senior officials have met with Mrs Dove to apologise again for the failings in handling her daughter’s case and discuss the lessons learnt.

“We fully accepted the Independent Case Examiner’s findings earlier this year and have since reviewed and strengthened our procedures to ensure all vulnerable claimants are safeguarded.”

 

Ali Stroker’s Tony Acceptance Speech

June 10, 2019

Glee Actress Ali Stroker Becomes First Wheelchair User To Win A Tony

June 10, 2019

Ali Stroker has become the first person in a wheelchair to ever win a Tony Award.

Stroker, 31, won the award for best featured actress in a musical on Sunday night for her role as Ado Annie in the acclaimed, edgy revival of Oklahoma!.

The performer is paralysed from the chest down due to a car crash when she was two.

She booked her first musical theatre gig at the age of seven, when she was cast as the title role in Annie in a friend’s backyard production in a New Jersey beach town.

When she sang, she says she “felt so free”.

After graduating from New York University, Stroker was in The 25th Annual Putnam County Spelling Bee at the Paper Mill Playhouse in New Jersey, as well as The Glee Project and Glee on TV. 

Stroker made her Broadway debut in a revival of Spring Awakening in 2015, becoming the first Broadway actor who uses a wheelchair.

She dedicated her win on Sunday to every child who has a disability and has been waiting to see themselves represented in theatre.

The 31-year-old has said she believes it’s high time disabled people are represented on stages and sound stages authentically, noting that one in five Americans lives with a disability.

Kate Grant, Model With Downs, ‘Amazed’ By BEM

June 10, 2019

A County Tyrone model, who strives to challenge preconceptions about Down’s syndrome, has said she was “amazed” to receive an award from the Queen.

Kate Grant from Cookstown, who is 21, was recognised for her achievements in the Queen’s Birthday Honours list.

At 19, she broke barriers by becoming the first model with Down’s syndrome to take part in Belfast Fashion Week.

She has been awarded the British Empire Medal (BEM) for “services to the community in Cookstown”.

Speaking to BBC Radio Ulster’s Sunday News programme, Ms Grant said she was “so, so excited” when she received her letter informing her of the medal.

‘Busting with pride’

She added that she believed she had been recognised for raising “awareness of people with special needs”.

“My parents and myself are so proud of me,” Ms Grant added.

“I want to continue to raise awareness through my modelling.”

Ms Grant has been supported in her career by her mother, Deirdre, who has helped the young model to challenge perceptions of beauty and disability.

Deirdre Grant told the Sunday News that she and her husband were “just busting with pride for our daughter Kate”.

“Whether you have Down’s syndrome or not, if you have a belief and if you work hard, have determination and have a dream, things are achievable in life.

“So that’s just Kate’s motto – she worked hard, she was very determined, she believed in herself, she knew where she wanted to go,” Mrs Grant said.

“And with that, she knew that she was representing the population with special needs and disabilities, and that drove her forward and made her stronger.”

The Restaurant In Spain Where All Staff Have A Disability

June 10, 2019

The first thing that strikes you is the calm, the light, the modern art on the walls – and then of course the food.

It’s only later that you realise there is something different, and a little special, about Universo Santi, a restaurant in the southern Spanish city of Jerez.

“People don’t come here because the staff are disabled but because it’s the best restaurant in the area. Whatever reason they came for, the talking is about the food,” says Antonio Vila.

Vila is the president of the Fundación Universo Accesible, a not-for-profit organisation dedicated to helping people with disabilities join the mainstream workforce. He has also been the driving force behind Universo Santi, the haute cuisine restaurant whose 20 employees all have some form of disability.

“I always wanted to show what people with disabilities, given the right training, were capable of,” says Vila, who is a senior manager at DKV insurance. “They were not represented in the world of haute cuisine. Universo Santi has broken through that barrier.”

The 20 staff, whose ages range from 22 to 62, were recruited from an original list of 1,500. To qualify, applicants had to be unemployed and have more than 35% disability.

“I feel really lucky to be part of this,” says Gloria Bazán, head of human resources, who has cerebral palsy. “It’s difficult to work when society just sees you as someone with a handicap. This has given me the opportunity to be independent and to participate like any other human being.”

Alejandro Giménez, 23, has Down’s syndrome and is a commis chef. “It’s given me the chance to become independent doing something I’ve loved since I was a kid,” says Giménez, who lived with his mother until he was recruited.

“Working here has transformed my life. So many things I used to ask my mother to do, I do myself. I didn’t even know how to take a train by myself because I’d just miss my stop.”

A recent guest chef was Joan Roca of El Celler de Can Roca, twice voted the best restaurant in the world. Giménez said he was not daunted at coming under Roca’s orders. “I’m not afraid of anything. The only thing I’m afraid of is not knowing something. I always want to learn and here I’m learning from the very best.”

Universo Santi may soon have a star in the Michelin firmament as the Michelin Guide people have already sampled the menu which, at €60 (£53), is less than half the price of a typical menú de degustación.

“Of course they didn’t introduce themselves but we knew who they were,” says Almudena Merlo, the maître d’.

While few are as gastronomically ambitious as Universo Santi, there are several other projects across Europe where catering is giving disabled people a new lease of life. One is La Fourchette de Collserola in Barcelona, which is staffed by 20 people with a range of physical and mental disabilities. The cuisine is Mediterranean, with vegan and kosher options.

In 2010 Brownies&downieS launched in the Dutch town of Veghel as a café run by people with Down’s syndrome and other disabilities. It was so successful that the venture became a franchise, with 53 branches in the Netherlands, Belgium and South Africa.

Another similar project is the One Eighty Restaurant in Portadown, Northern Ireland, which was established in 2011 and trains 16- to 22-year-olds with learning difficulties to work in the hospitality business.

The Jerez restaurant takes its name from Santi Santamaria, chef at the Michelin three-star Can Fabes in Catalonia until his sudden death in 2011. Can Fabes closed shortly afterwards but his family wanted to carry on his name and culinary tradition and were keen to support the Jerez project.

The family’s enthusiasm attracted the attention of Spain’s top chefs, among them Martín Berasategui, Roca and Ángel León, all of whom have contributed recipes and their time as guest chefs at the restaurant.

Disciples of Santamaria helped establish the kitchen, whose equipment was transferred in its entirely from Can Fabes, and several of the dishes on the menu de degustación are Santamaria originals.

Since it opened in October 2017, Universo Santi continues to win plaudits for its cuisine. Speaking at the restaurant, Roca said cooking was about humanity and was a way of integrating people. “It gives me great satisfaction to see it realised in a project such as this,” he said.

Tokyo 2020: Hotels Agree To Wheelchair Accessible Rooms For Paralympics

June 10, 2019

The Japanese government has promised that all hotel rooms that are converted to make them accessible for wheelchair visitors to the 2020 Paralympics will now remain accessible as a legacy of the Games.

The pledge comes after the Guardian revealed in April that British Paralympic officials were stunned when hotels near their training camp in Yokohama, south of Tokyo, demanded they pay to make rooms accessible – and then pay again to convert them back afterwards.

One senior figure said the problem had been a “huge headache” for more than 18 months until the authorities in Yokohama, part of the Greater Tokyo metro area, finally agreed to help. What made the issue harder to solve is that it was beyond the remit of the Tokyo 2020 organising committee or government. Rather, it was down to individual hotels – many of which did not see the social or economic benefits of providing more accessible rooms.

However, the Japanese government insists the issue is now “obsolete”. Jun Mitarai, part of the cabinet secretariat that co-ordinates Olympics planning, said: “After the refurbishments, the hotel rooms will not go back to the original state. That is an agreement between the Yokohama city and the hotels. The rooms will be left as a legacy.”

Mitarai said the government was also addressing concerns from the International Paralympics Committee (IPC) about the lack of accessible rooms in Tokyo by introducing new legislation to ensure all new hotels cater more for people with disabilities, with at least 1% of rooms accessible if the building has more than 50 rooms.

He said it is also launching a subsidy programme to help existing hotels make refurbishments, and producing a “operational manual which describes how to help those with impairment” for smaller hotels and inns.

“The hotels and inns have already started training their staff based on the manual,” he added.

Mitarai also had a message for existing hotels that were reluctant to renovate for accessibility. “Hotels shouldn’t view this as a cost but rather as an opportunity,” he said.

“Japan is already an ageing society and it is going to be an even more ageing society in the future. And also the percentage of people with impairment is said to be around 7% – but those who are travelling are still much much less. So we want people on the management side of hotels to see this as a business opportunity and expand the number of accessible rooms.”

When asked if he hoped the Tokyo Paralympics would change people’s perceptions of disabled sport and disabled people much in the way London 2012 did, Mitarai smiled before replying in English: “I completely agree with you.”

Part of the problem is that hotel rooms in Tokyo have smaller spaces than most large cities, with narrower doors sometimes making it harder for wheelchairs to enter. There are few bathrooms with grab rails and bath tubs. Some people also cite societal reasons as a factor, with many Japanese not realising it is a problem because there are fewer wheelchair users in Tokyo than in most cities.

Yuriko Koike, the governor of Tokyo, said she is determined that more be done to change attitudes and accessibility.

“The Olympics can only be successful if the Paralympics are also a success,” she said. “And part of the ultimate success of the 2020 Games must be creating a more barrier-free society in Tokyo – including widening hotel rooms and entrances for disabled people and making toilets, buses and other forms of transportation more accessible.

“In order to do that I am working with the hotel and tourism industry and raising some funds to make that happen for Tokyo,” she added. “One of the legacies that I am aiming at is that anyone can easily and comfortably visit the city.”

Koike said organisers had also created a “Paralympic Passport” to encourage local people to watch and try the events.

“There are 22 different sports that take place in the Paralympics and this passport can be used so that you can get a stamp each time you see, play, or cheer for any games in the Paralympics,” she said. “And just last week I achieved all 22. I have seen, participated in, or cheered for all 22.”

Koike is particularly found of boccia, a sport she started playing after seeing it at the Rio Paralympics. “As soon I got back to Tokyo I established a team, and when the former head of the IPC [Sir Philip] Craven came to Japan we had a showdown,” she said, smiling. “I was merciless. I took him down!”

What Kind Of Country Have We Become? Try Asking A Disabled Person

June 10, 2019

I grew up in a Britain that said life would be full of promise for disabled people like me. We might not have conquered the media and corridors of power, but – unlike generations before me – by the 1990s we were no longer hidden from sight. Grim words such as “crippled” and “retarded” were no longer part of everyday speech. Charity tins that until recently symbolised the scraps handed out to us were now accompanied by concrete rights – from the groundbreaking disability civil rights law of my childhood to the welfare state’s tailor-made benefits and services for disabled people.

Progress, though, is rarely as permanent as it appears. Nearly 20 years later, in the spring of 2013, I watched as David Cameron’s coalition government launched what would become an unprecedented assault on disabled people: from the bedroom tax to the rollout of “fit for work tests”, and the abolition of disability living allowance.

Britain likes to tell itself that it is a fair and compassionate country. How it treats disabled people has long been at the heart of this. And over this past decade of austerity, ministers have relied on this narrative more than ever: that even in tough economic times, “the most vulnerable” would always be protected.

Listen to Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, and you start to get an idea of just how far the spin is from truth. Disabled people have been “some of the hardest hit by austerity measures”, he warned in a damning report last month, with many “driven to breaking point” by cuts. A broken benefits system has led to thousands of people dying after being found “fit for work”. Food banks are packed with people battling mental and physical health problems. The threadbare social care system is leaving disabled people trapped in their homes, in some cases waiting 14 hours without access to their toilet.

It is not simply that Britain is shirking its responsibility to its disabled citizens. We have reached a point where negligence is so widespread that at its extremes it is tantamount to abuse. The British state has to all intents and purposes turned on the very people who need it most.

I’ve spent the last seven years speaking to hundreds of these people, and 18 months writing a book. What I found were individuals who had been fundamentally abandoned. Susan, who has multiple sclerosis, has lost 4kg (8.8lb) after skipping meals to pay for her care and even her incontinence pads. Paul, a homeless part-time wheelchair user, sleeps rough in disabled toilets and at Heathrow airport. Rachel, a former nurse, has had her entire social care package removed; without someone to help her into bed at night, she now sleeps fully clothed in her wheelchair.

Anyone who thinks these horrors are an aberration in Britain’s supposed long history of care for disabled people is missing the point. That brief period of gains when I was a child aside, the crisis befalling us is so horrendous not because it is new, but precisely because it is not. People forget how recently it was that disabled people were shut away in institutions in Britain, or effectively banned from public transport, schools or jobs.

The brutal cost-cutting of the last decade has been a lesson in just how quickly hard-won rights for minorities can be rolled back. Just ask the parents protesting last month after their disabled children were pushed out of education because of funding cuts. Or the young disabled adults threatened with being forced out of their family homes and into care homes for the elderly.

None of this has happened by accident, though. Rather, it has come about as a deliberate attack on disabled people. In a climate of disenfranchisement, squeezed wages and growing inequality, post-2010, ministers and large parts of the media saw the so-called “scrounging sick” as an easy target. Smearing disabled people as little more than a drain on the public purse was not only a means to distract from the real causes of people’s problems, but came to excuse and normalise any number of nightmarish results that, even a few years ago, we’d have said were unthinkable.

While the ill-treatment of disabled people over the last decade has been the direct result of political choices, Britain is one of the wealthiest nations in the world, and so has every chance to turn the situation around – if it wants to. That none of this is inevitable is both bleak and a sign of hope.

Polling consistently shows that tolerance of government cuts is collapsing. The left can seize on this shift to recapture and build on the optimism of my childhood, remaking the case for flourishing public services, and with them, disability rights.

The most effective way to tackle the inequality faced by disabled people is to think about it in the round, looking at issues of housing, employment, social security and social care, and offering a coordinated strategy that is not only morally right but also speaks to common sense. Invest in accessible homes, care packages and benefits, and NHS bills go down and tax revenue up.

One of the greatest challenges in any of this is the way disabled people are perceived. Longstanding cultural prejudice around disability, combined with the demonising rhetoric of austerity, has exacerbated a sense of difference in society; an othering that perpetuates the idea that disabled people aren’t quite normal, or don’t want a life, a family, a home or an education like everyone else.

These attitudes do not spring from nowhere, but are directly related to how willing non-disabled people are to let state programmes for disabled people be decimated, and allow ministers who wield the axe to get away with it. What’s the point in funding social care if disabled people don’t really go to the pub with friends or travel to the office like “normal” people? Attitudes, just as much as funding cuts, need tackling in the coming years.

Britain feels increasingly as if it is at a point of national reckoning – this country, scarred by a decade of austerity and fatigued by Brexit, is now charged with working out what kind of society it wants to be. Where disabled people fit into any of this is rarely part of the conversation, and yet it should be one of the most pressing questions. The poignancy of this is all the greater considering we have largely been here before: generations had to fight for the disability rights that are now being carelessly stripped away.

This is a warning sign that should rally all of us who care about the future of our welfare state. When disabled people are hungry and housebound, the idea that Britain still has a meaningful safety net is increasingly obscene.

British Ski Champion And Guide Dog Barred From Sainsbury’s Store

June 10, 2019

A blind British ski champion has spoken of feeling shaken and humiliated after being denied access to a Sainsbury’s store with his guide dog.

Paralympian John Dickinson-Lilley tried to enter the store in Holborn, central London, with his guide dog, Brett, but said he was stopped by a security guard.

He said: “I had finished work and because it was a really nice day, Brett fancied a walk because we’d been indoors all day.

“We stopped at the Sainsbury’s on Southampton Row to get some wine to enjoy the weather. As soon as I walked in, the security guard said: ‘No, no, no.’

“I said: ‘What?’ He said: ‘You know what. No dogs allowed.’ I asked to get the manager, but he refused.” Dickinson-Lilley, who retired from competitive skiing last year, said a supervisor eventually apologised.

When he complained about the incident on Twitter, Sainsbury’s responded by saying: “Hi John, sorry for the delay getting back to you. I’ve spoken to the store manager. It’s clear the security guard misread the situation and this has been addressed to prevent it from happening again.”

Businesses are required under the Equalities Act to allow guide dogs on to their premises, but Dickinson-Lilley said that this was the second time he had been denied access at the same store, and that he had encountered a similar situation at a different London branch of the store.

He said he would be taking Sainsbury’s to court over the incident. “The idea that you can walk into a shop and be humiliated like that in 2019 is outrageous.

“There’s clearly something that’s not working in their business. They know they can’t sell booze, knifes and razors to children, but yet they don’t know that I’m allowed in with my dog. They’re not prioritising disabled people.”

Sainsbury’s has sponsored the British Paralympic team since 2012 under a deal that runs until 2020.

Dickinson-Lilley said: “Sainsbury’s made quite a big thing of their involvement in sport. If you put yourself on the front line by saying: ‘hey, we’re sponsoring the Paralympics,’ you have to be a leader in that field.”

Sainsbury’s said in a statement: “We have apologised to John for his experience and reassure him assistance dogs are welcome in all our stores and petrol stations.”

Topics

Paralympian Matt Byrne Left Behind By RyanAir Flight

June 7, 2019

A Paralympian has said he was stopped from boarding a Ryanair flight because it was “running late”.

Paralympics GB’s Matt Byrne said he waited at the Dublin Airport gate for an hour before take off but the pilot left without him.

The basketball bronze medallist from the Athens and Beijing games had been due to catch a flight to Birmingham on Monday evening.

He said he has been told Ryanair is investigating.

The 44-year-old from Nottinghamshire said he was “shocked” and the pilot “was wrong” to deny him access.

Mr Byrne has used a wheelchair for 29 years after a motor cross accident left him paralysed from the waist down.

He said he checked in with the special assistance team on arriving at Dublin airport.

“With Ryanair, if you have mobility problems you are last on the plane which is stupid really,” he said.

“All the passengers went through and down the stairs, so I went down the lift and waited there when staff said to me ‘the pilot’s refusing to take you because he’s running late’.

“It would have taken five minutes max to get me on that plane.

“I didn’t miss that flight. I was ready to get on that plane, But it was the Ryanair pilot’s decision to not let me on.”

Mr Byrne said when using other airlines wheelchair users boarded before other passengers.

“At the London Paralympics it was all about equality and bringing disability rights to the forefront, but Ryanair don’t get that,” he added.

“They’re lucky I can look after myself, but if it was someone with worse conditions, or more frail it could have been worse.”

Mr Byrne eventually caught a flight to Birmingham two hours later.

In a statement to the BBC the airline said: “Special assistance services at Dublin Airport are operated by OCS – at great expense to the airlines.”

OCS has been approached for a comment.

Mayor With Prosthetic Leg Reveals Online Abuse

June 7, 2019

A mayor who has a prosthetic leg has reacted to social media “hate speak” about her choice of footwear which she believes could discourage disabled people from entering public life.

Stockport mayor Laura Booth, whose left leg was amputated below the knee as a child, said she was mocked on Facebook for wearing flat shoes to an event.

She said one comment read: “Look at the state of her”.

Ms Booth said her footwear did not diminish her ability to do her job.

The councillor, who also has chronic pain and back problems, wore pink leather lace-up shoes to a ceremony at a bakery in Reddish on Monday.

She said she wanted to walk to the event and stand up, rather than use her wheelchair.

‘Really nasty’

Ms Booth explained: “People commented on the bakery’s photo; ‘A mayor in trainers, disapproving face’, ‘Look at the state of her’. ‘Get back to your caravan’.

“They make these judgements and can get really nasty.”

Ms Booth, who lost her leg after a car crash, said: “I am prone to falling, I have a different gait so I need shoes with support. There is limited choice.

“It’s these attitudes which will put people off entering public life if they have a health condition or disability,” she said.

“Also a woman should be able to wear whatever shoes she wants irrespective of disability or not.”

The Labour member for Offerton said she wanted to highlight the “hostile narrative” which exists around disability and invited people to confront her in person.

“Bring it on. Come and say it to my face. My job is to show you disability is not inability. Sometimes you have to facilitate.

“In this event it was flat, lace-up shoes, so I can stand up and talk to people.

“It is insulting and wrong that people think my shoes determine my ability.”

Other people on Twitter showed their support by telling the councillor to “wear what is comfortable” and “ignore” any abuse.

One commented “only a woman would have her shoes scrutinised”.

Austerity Forcing Disabled Women Into Sex Work

June 6, 2019

 

For the past five years, Alice has been making a living as a sex worker. She is also disabled; she has bipolar type II, which leads to hypomania, depression and a severe lack of physical energy.

For Alice, these two sides of her life – disability and sex work – are inexorably linked. Alice (not her real name) started this line of work when she was at university – it was a way to make some extra cash to top up her student loan. She had always intended to quit sex work after graduating. “That was three years ago,” she says.

Upon leaving university, she struggled to retain a job. Traditional employment – with a boss and set working hours – proved impossible during depressive episodes and her job came to an end for that reason. She started a postgraduate degree, but her mental health meant she kept missing lectures and the university eventually recommended she take a year off. “I’ve to all intents and purposes [had to] drop out,” she says.

The disability benefit system is supposed to be there to catch people such as Alice; a safety net for when ill health means she cannot have a job to pay the bills. But she is in a catch-22: she cannot claim the out-of-work sickness benefit, employment support allowance (ESA), because she is still registered as a student, despite the fact that her mental health meant she had to leave her course. “On the one hand, I’ve got someone saying: ‘You’re too unwell to study or work.’ On the other, I’ve got [the government] saying: ‘You’re not unwell enough to get support, and go away.’”

On top of this, she was turned down for the other key disability benefit, personal independence payment (PIP). In the middle of a depressive episode, she could not fill in the extensive paperwork. “Ironically, I wasn’t well enough to chase them,” she says. After reapplying and being rejected again, she had to appeal against the decision, which constitutes a mound of paperwork and then a tribunal in court. Besides, Alice worries that mental health problems are rarely seen by the benefit system as being as debilitating as, say, being a wheelchair user. It is a concern backed up by evidence: in 2018, the high court ruled that the PIP system was “blatantly discriminatory” against people with mental health problems, even going as far as to order the government to review 1.6m disability benefit claims. It all adds up to a situation where Alice could not pay the bills with either a wage or social security. As she put it to me: “I’ve got no income to speak of and the government doesn’t care.”

Instead, she has had to rely on sex work to get by. When I first speak to Alice, she is working. I have accidentally called her early and her client is still in her home. This is an intimate set-up but it generally works for her health. Being her own boss, she has a flexible working pattern and can control the use of her own flat. “When I’m having my down days, I don’t have an employer to answer to, and then, when I’m elated or if I’m actually well, I can sort my own bookings out and organise my own working pattern to cover the days that I can’t work,” she says.

Arranging her working hours around fluctuating health is especially easy with sex work, she explains, as she is able to earn a lot quickly on her good days, “if you put the time and energy in”. However, her health means she has often not got enough energy to take bookings. Alice uses what she calls “standard rates”: £130 for an hour at her place, £150 at someone else’s, £50 for 15 minutes and £750 for overnight. Most clients tend to go for half an hour or an hour, she says. She describes her working hours as “binge and starve”: she goes several weeks without a client and then sees several men a day, for a few days. “Then I recover,” she says.

There is a pressure to take on as many clients as possible when she is well. Without her disability benefits or a regular income, Alice is thousands of pounds in debt: £10,000 to friends she has borrowed from over the years; her student loan; a £3,000 overdraft; and maxed-out credit cards. Rare periods of hypomania can lead her to shop excessively. But for the past five years, it is simply her lack of income that has seen her finances spiral. She is getting into more and more debt every month, as her outgoings exceed her earnings. The stress of the debts is taking a further toll on her mental health, “only making the situation a vicious cycle”. Finding clients has become a way to alleviate the debt and keep her head above water. “I wouldn’t have been able to survive without sex work,” she says. “It’s quite literally saved my life.”

As we talk, Alice repeatedly tells me there are times she really enjoys sex work, but she admits her choices are heavily controlled by circumstance. She says: “I’m definitely being failed by the system right now – being financially coerced into it by the government.”

As the UK recession and the subsequent austerity measures kicked in, I began to speak to a number of disabled women who had turned to sex work in order to get by. The methods of work varied. Some met men in person who paid them in exchange for sex. Others began sex-cam work; half an hour stripping on Skype for a stranger across the internet. Women with pain- or fatigue-related disabilities were particularly prevalent in the latter. Sex work was the one job they could do from their beds. But if the disabilities varied, the reasons for taking on this work often came back the same: like Alice, without access to benefits or traditional employment, sex work was the only way they could survive.

Alice’s best friend, Sarah, is also disabled and has chronic pain. Unlike Alice, Sarah has been granted disability benefits but does sex work to top up her low payments. The government gives her “some, but not enough to live off as a human being”, Alice says. Many of her friends with disabilities and chronic illnesses started sex work for the ease and flexibility it offered to those who are too unwell for traditional employment – or, as she puts it, whose energy levels are sometimes too low to function properly but “who need money to survive in the world”. “It is what it is,” she says. “If the state won’t support vulnerable people, they have to find work. And if they can’t, they’ll find options.” .

This use of sex work as a last option for marginalised women is not a new phenomenon, but as benefit cuts have been rolled out, austerity measures are exacerbating it. In 2018, Frank Field MP, chair of the work and pensions committee, reported that some women in his Birkenhead constituency had been pushed into prostitution because of the local roll-out of universal credit. The union Aslef suggests that on-street prostitution increased by 60% between 2010 and 2017, which has, in particular, been linked to an increase in women having their benefits sanctioned.

Women’s organisations and outreach workers across the country repeatedly point to this pattern. Changing Lives, a charity that provides women’s services across the north of England and the Midlands, conducted research in 2016 into what it termed “survival sex work”. It found women to be selling penetrative sex for as little as £10 for a place to stay or even in exchange for clean clothes, with “punters” approaching them to offer as little as a fiver at times when the women are perceived as being particularly vulnerable. Staff at the organisation’s women’s outreach centre tell me that a growing number of women are being pushed into sex work because they have their benefits stopped for things such as missing JobCentre appointments or failing to attend interviews.

“We noticed a big increase in women selling sex after the introduction of benefit sanctions, not just to make ends meet but, in some cases, to provide the basics for their family,” says Laura Seebohm, the director of operations at Changing Lives. “Some of the women were so desperate that they were selling sex for the first time while others had successfully got themselves out of the world of survival sex only for the sanctions to come along and force them back into it.” Another staff member at the service, Laura McIntyre, told me that women with learning disabilities and those with multiple and complex needs have been particularly at risk.

At the same time, Sheffield Working Women’s Opportunities Project in 2016 warned that austerity measures, including benefit rejections and sanctions, were behind an estimated 400% rise in women using their service who had entered prostitution. Some were new to sex work, they noted, but many were women who had previously managed to leave prostitution only to have to return as much as a decade later because of losing their social security. “We know that some women come out just so they can buy food, and once they’ve raised enough they go home again,” the manager of the centre went on. “Quite a lot of women might only intend to come out for five or six weeks to make some money while they wait for payments to come through but once they’re in it again, it can be very difficult to leave.”

Alice is, in many ways, in a much safer environment than the women resorting to on-street sex work. She finds her clients through the internet and coordinates them through a work phone and email address. “Ninety per cent of sex work is admin,” she laughs. But she admits that, even working in this safer environment, she is sometimes more vulnerable because of her mental health. If she is hypomanic, she doesn’t just take on more work but forgoes safety checks: during those periods, she is active, creative, energised, “and everything seems a good idea”. “It’s not necessarily safe. I make riskier decisions – like driving two hours to somewhere I don’t know at 3am,” she says.

Alice is doing this at a time when women generally, let alone those contending with health problems, are facing an increasingly arduous labour market. The push to insecure, low-paid work in recent years has disproportionately affected women, who are already more likely than men to be in part-time or low-waged roles. Since the start of the global crash in 2008, 826,000 extra women have moved into low-paid and insecure work in the UK, according to the Fawcett Society. At the same time, the number of female part-time workers who would like to be working full-time has nearly doubled, to 789,000.

This shift to precarious work will likely exacerbate what are already poorer working opportunities for those women with disabilities. Research by Comic Relief in 2017 found that as much as 50% of the work disabled people perform is in low-paid, short-term and part-time roles, meaning female disabled workers are contending with the impact of both sex and disability. Even cuts to disability benefits are, in some ways, gendered. Women are more likely to be disabled – there are around 6.4 million disabled women in the UK compared to 5.5 million disabled men – and the Women’s Budget Group in 2018 found that almost six in 10 individuals claiming PIP are women.

When we next talk, Alice has just received a large pack of documents from the Department for Work and Pensions: 100 A4 pages front and back. She needs to read and understand all of them before her tribunal appeal of her PIP rejection; a process that has, overall, taken the best part of a year so far. “The government is making it deliberately as confusing, intimidating and difficult as possible,” she says. A local disability charity has been helping her navigate the appeal, but lottery funding – its only source of income – is due to run out in a few months’ time and Alice is worried she will be left to take on officials at the tribunal alone. “It’s all very overwhelming and distressing,” she says. “I really need the government to recognise that I have next to no income and it is a direct result of being disabled.”

Her mental health is deteriorating as a result and she has been put under the care of her local crisis team for suicide prevention after developing suicidal feelings. Despite sending out multiple CVs each day she is, more than ever, “not in a place where I can manage a traditional job”. Alice is trying to formally withdraw from her degree so she is eligible for ESA, and with it she might finally get a bit of support from the benefit system. In the meantime, it is a case of borrowing money from friends, credit cards and her growing bank overdraft. “I don’t know what to do at this point,” she admits. “I’m treading water. Or at least delaying my drowning through … sex work.”

Names have been changed.

There Is No Swahili Word For Downs Syndrome

June 5, 2019

When Elly Kitaly gave birth to her son she found out he had Down’s syndrome. She realised that the condition was so ignored in her country, Tanzania, that there was not even an adequate word in her language, Swahili.

This is Elly’s account of her journey to find out why.

Waiting for an internal flight at Dar es Salaam’s airport, a young accountant started making conversation with me.

“Why are you flying to Arusha?” he asked.

I told him I was going to meet a friend I had made on Instagram. She is a mother, like me. Her son is four, like mine, and just like my son Chadron, he has Down’s syndrome.

“What’s Down’s syndrome?” he asked.

This is a question I get often in Tanzania. It doesn’t matter how educated you are, no-one seems to know what it is.

I geared myself up to give my well-practised explanation.

I wanted to switch into our language, Swahili, but I knew I had to keep to English because there isn’t a good-enough word for Down’s syndrome in Swahili.

From dwarf to zombie: the problematic terms used in Swahili to describe Down’s syndrome

Mlimbuko dalili dumazi – this term is used in the Swahili dictionary for disabled people but I never hear anyone use it in real life. Doctors aren’t even aware of it. “Dumazi” translates as dwarf and I have a suspicion that is because that is a translation of the word down – as in down low or short. This is a mistranslation because, while one of the symptoms can be stunted growth, Down’s syndrome actually gets its name from the doctor who first observed all its characteristics together – John Langdon Down.

Taahira – this is the term I hear used most often. Its English equivalent is retard. Just like retard it is a highly offensive insult. But unlike in English, it hasn’t been replaced by a term like “learning disability”. Other insults with a similar meaning are “mazazeta” and “zuzu”.

Mtindio wa ubongo – this is the most socially acceptable term and you’ll hear officials use it, but it isn’t accurate as it means cerebral palsy.

Ndondocha – this slang loosely means zombie, as in someone who has been possessed. It refers to the belief that witch doctors can cast spells to make people mentally disabled. It can also be used to mean someone who has been cursed by their ancestors.

My language is a reflection of my country – it can sometime feel like Down’s syndrome (DS) doesn’t exist in Tanzania.

Take my fellow passenger at the airport.

I explained to him that there are some common physical signs of DS, like slanted eyes and a flat nose.

He looked blank. So I showed him pictures and he said he hadn’t seen people like this before.

We boarded our flight and the conversation came to an end but it got me thinking.

Looking back, I realised that growing up, I’d never seen a person with DS either. Not at school, not in the market, and not at church.

I was barely aware of the condition until I gave birth to my own son.

I remember frantically Googling it in my hospital bed.

Find out more

Listen to Don’t Hide My Son, on The Documentary, on the BBC World Service, on 4 June

Click here for transmission times, or to listen online

I learnt that the most common form of Down’s syndrome is trisomy 21, trisomy meaning third chromosome. You can think of chromosomes as the instruction manuals for how to build your body. It’s typical to have 23 instruction manuals, each in duplicate, but people with trisomy 21 have an extra, third, copy of manual 21.

Crucially, I learnt that this extra chromosome comes about as a result of random events during the development of the embryo, egg or sperm cells.

If it’s random, it can occur just as much in Tanzania as any other country.

Given that, why hadn’t I, or my new accountant friend, seen anyone with DS in public?

With this question in mind, I arrived in Arusha and met my Instagram friend, Magreth Paschal, for the first time in real life.

As we sat at her home admiring her plants from her floristry business, she told me the first she had heard of the condition was when her son was diagnosed.

Like me, she hadn’t seen people with DS at all when she was growing up.

She suspected that this was because parents had been shamed into hiding their children.

The reason she held this suspicion was because of something that happened to her when her son Jotham was a baby.

A customer of hers had made a shocking accusation in a text message.

She’d kept the message and read it out loud to me: “Shame on you for going to the witch doctor and sacrificing your son just so that you can get rich.”

I had heard of this idea before because I had been told that people had said similar things about me.

It’s a complicated belief to get your head around.

Some people in Tanzania think that people have DS because their parents have gone to the witch doctor to cast a spell to make themselves rich and have given their own child’s mental capabilities as a sacrifice.

Magreth was incredibly sad that someone would make such an accusation about her.

“After I received the text, I couldn’t even continue to feed the baby. I just cried and cried. It was the worst experience of my life.”

When she went out to the park with her son she started noticing people staring at her.

“Back then I was not comfortable to go out in public with my son because some people looked at me as if I’m a sinful person,” she told me.

She felt people judging her most when she was driving with Jotham in the car – in a town where many people couldn’t ever dream of owning a car in their lifetime.

“That’s when you give them the answer that you have used your son for the money ritual.”

Sitting across from Magreth, I was filled with anger. I found myself shouting: “I want the world to know that we did not go to the witchdoctor.

“That isn’t how we ended up with children with Down’s syndrome.”

While the accusations made against parents are outrageous, if those parents do give in to the shame and hide their children, the consequences are heartbreaking.

By locking their children away, these parents are denying them the opportunity to socialise and learn.

The condition can lead to smaller stature and a learning disability. But our children with DS do learn, it just takes a bit longer.

Magreth and I have a shared love for videos on social media that prove this.

There was one that blew my mind and I couldn’t wait to to tell her about – US actor and campaigner with DS, Frank Stephens’ speech at congress had gone viral.

I had never seen someone with DS speak as eloquently as him before. I got in touch with Frank to ask him what circumstances had led him to be such an accomplished public speaker.

He was clear – it was a result of his parents involving him in everything when he was growing up.

Locking up children isn’t just restricting their opportunities. It can actually create more disabilities.

One physiotherapist, Godfrey Kimathy, told me when he was working in Magreth’s region he found a seven-year-old girl who couldn’t walk or talk or go to the toilet, not because she had DS but because she had been locked up her whole life.

Her parents had locked their daughter up because their neighbours believed they had made her that way in order to become rich.

But Godfrey said he couldn’t even see the wealth that the neighbours were talking about.

Magreth went down a different route – she became defiant against this stigma.

She now takes Jotham everywhere and by doing so she hopes to change her world.

And I want to change my world too by proposing the introduction of a new Swahili term – “Traisomi ishirini na moja” it’s a direct translation of trisomy 21 – that extra chromosome.

Panorama: Crisis In Care- Part 2: Who Pays?

June 5, 2019

Tonight, BBC1, 9pm.

 

In the second of a two part series on the social care crisis, Panorama exposes a chaotic system on the brink of crisis. With more and more care homes closing, and a national shortage of carers, social affairs correspondent Alison Holt meets vulnerable people threatened with selling their homes to pay for their care, and their families battling the funding system. She tells the devastating stories of elderly people with no-one for fight for them and asks why successive governments have failed to reform a system experienced by so many as unfair, confusing and sometimes cruel.

Terminally Ill Claimant Fights To Raise Awareness Of Unfair PIP Reassessment Process

June 4, 2019

With many thanks to Benefits And Work.

A claimant with only months to live who received a PIP review letter has vowed to fight to raise awareness of the unfairness of the system.

Ron Stevenson, 69, was diagnosed with motor neurone disease ten years ago. He is now almost completely paralysed and relies on help from carers and his wife. He receives the highest rates of PIP.

In spite of the fact that MND is a progressive illness, last month Ron received a letter telling him that a reassessment of his PIP would now take place and that if he did not respond he would lose his award.

Ron explained:

“The letter said if you do not reply then on 29 July your payments will stop.

“Obviously I’m aware that this is something that can happen, but it was still a shock.

“People with motor neurone disease never get better. There is only one outcome and that is death.

“Anyone with a grain of sense would’ve realised anyone paralysed and life limited as I am cannot be anything other than eligible.”

Ron contacted his MP and also obtained a DS1500 form, which states that a patient’s death is likely within the next six months, from his GP.

The DWP then relented, though still insisted that a further review would take place in 3 years time.

Ron, however, is fighting to raise awareness of the cruelty of putting people through the stress of reassessment when their condition is one which can only ever get worse.

Ron said:

“We were promised by the government that the reassessment for benefits would stop in 2016 – this has been broken.

“I’m working to raise awareness, we won’t stop fighting, despite the fact the disability is fatiguing.

“I have lost the use of my limbs, but I shall use my voice, while my friends can no longer.”

You can read more on this story in the Independent and in the Mirror.

How Tech Breaks Down Barriers For Disabled Students

June 4, 2019

Rustling crisp packets, shuffling feet and the general buzz of conversation made lectures a trial for Gemma Long during her first degree. She suffers from sensory overload connected to her autism, which was only diagnosed after she graduated. But when she started a teacher-training course at the University of Huddersfield, she received access to software to help her cope with dyslexia and found it transformative. It allowed her to listen to lectures quietly at home, which dramatically improved her grades. She went on to take an MA at the Open University and is now studying for a PhD at Sheffield Hallam University.

“I struggled to understand the point of lectures until I got that software,” recalls Long. “I didn’t realise how much useful information was in them. As someone who is hypersensitive to noise I spend most of my time in lectures trying to filter out the background noise, which means I miss much of what the lecturer is saying. Being able to audio record the lectures and listen back to them in a silent room meant I was finally able to digest the content.”

Technology is breaking down barriers faced by students with disabilities. This matters, because fewer disabled students go to university than their non-disabled peers. Online journal articles or reading lists now mean that those with visual impairments can zoom in to read printed text or convert it to easier-to-read formats such as braille. Universities are also increasingly recording lectures which students can replay at their own pace, which benefits students with dyslexia or attention deficit disorder (ADHD) too. Often, all this can be done through laptops at home, giving disabled students greater independence.

According to Alistair McNaught, a digital learning consultant, universities are increasingly tracking how students learn, and then directing them to the accessible resources most suited to their personal needs. Staff can also receive automated feedback on the accessibility or otherwise of material they upload to the virtual learning environment.

McNaught appreciates the way assistive technologies can help all students – whether they have a disability or not – but stresses that it’s important for universities to get the basics right first. “Many higher and further institutions have inaccessible websites or inaccessible digital content. If the content is inaccessible, investments in assistive technology can be undermined at a stroke.”

This is something that new European regulations aim to tackle. After September this year, new material published on university websites and virtual learning environments will need to meet standards on accessibility.

This drive is complemented by other technological innovations. There are new mobile apps to guide students through tricky periods or situations. For instance, Brain in Hand is designed specifically for people with autism, mental health conditions, brain injuries or specific learning difficulties. It suggests personalised coping strategies to students in distress, offers reminders about tasks, and allows them to monitor anxiety levels and access help swiftly when needed.

Some universities are taking a wider approach. At De Montfort University, around 200 students can record their moods via a traffic light system – green when all is OK, amber when they are feeling uncomfortable, and red when they need help. Specialist mentors track these notifications and step in when needed, as well as observing what activities seem to cause each student particular stress. For example, many students seem to record high anxiety levels on Wednesday afternoons, which have traditionally been left free, so the university now offers drop-in sessions on those days.

Universities are feeling the pressure to improve accessibility after the government reduced funds for Disabled Student Allowances in 2016-17. Universities were given more money to persuade them to “create a more inclusive learning environment” overall, rather than focus on targeted support for individuals.

But although disability campaigners have broadly welcomed this, they point to some problems. Piers Wilkinson, head of Ramping Up, a consultancy on accessibility in higher education and disabled students officer elect at the National Union of Students, says that a general inclusive approach can be helpful in identifying that a particular style of teaching or assessment does not work for all students, not just their disabled peers. But he argues that although it’s important, universities still need to provide targeted support for disabled students.

Furthermore, analysis by Policy Connect, a cross-party thinktank, shows the number of students receiving technology equipment through DSA has dropped since the £200 charge for DSA-issued laptops came in, despite a substantial increase in the number being assessed as needing support. It is putting together a report, due out in the next few weeks, which is expected to recommend removing these upfront costs.

Rachel Hewett, fellow in the Vision Impairment Centre for Teaching and Research at the University of Birmingham, adds that even when students receive laptops the fact they are issued by the DSA can make them unsuitable. “Once they have put on all the different software they need and are trying to run them in conjunction with other laptops they aren’t powerful enough,” she says. Many students struggle to use the equipment as they aren’t given any training, either.

Hewett would like to see the DSA fund mainstream technology such as iPads, which increasingly include features such as braille-writing capability. Getting used to mainstream technology would also be more helpful to students long term, she argues.

For Long, universities just need to get better at promoting the support that’s already there. She says that making specialist software and training generally available, rather than confining it to disabled students, makes it more widely known, as well as removes stigma. For someone like her, who received her diagnoses late, it would have been particularly helpful. To this end, the assistive technology network she founded to represent staff who support their disabled students with tech, will hold its first awards ceremony next month.

Universities are slowly tackling the barriers for disabled students, helped along by developments in technology. There’s more yet to come: Wilkinson is excited about the prospect of virtual reality – particularly when it comes to fieldwork. “It can be incredibly difficult for a disabled student to get a wheelchair on to a salt marsh,” he says. “But if the learning aims are being immersed in an environment, and making discoveries, VR can achieve that.”

Victoria Derbyshire Interviews Esther McVey

June 3, 2019

Today, Victoria Derbyshire spent half of her hour long programme interviewing Esther McVey, because Esther McVey is running to be Tory leader.

The interview covered various topics, which included disability benefits, which is why we are linking to the programme here. The interview starts at around 17 minutes in.

For the record, Same Difference strongly dislikes Esther McVey. She made a very bad Minister For Disabled People and a worse Secretary for Work and Pensions. We hope our next Prime Minister is Anyone But McVey.

Love Island Says Disabled People Wouldn’t Be Attractive

June 3, 2019

Parent of a wheelchair user and disability campaigner Daniel White recently shared the following on Facebook:

Statement from the boss of @LoveIsland confirms that overweight & Disabled people wouldn’t be attractive to the cast. Absolutely shockingly vain & narrow minded. Sums up the vanity & not so hidden message of Ableism & determination to promote body dysmorphia in this “show”

Image may contain: text that says ""It's about people wanting to watch and them reacting and falling in love with another. Yes, we want to be as representative as possible but we also want them to be attracted to one another.""

Same Difference shares Daniel’s deep disappointment at this statement. Our editor, physically disabled since birth, knows better than most that disabled people are attractive, that people of all abilities and all disabilities do find disabled people attractive and fall in love with us.

 

 

 

In fact, during Big Brother 2008, our editor herself took a shine to both the appearance and the personality of contestant Darnell Swallow, who had Albinism. She also happens to find BBC Three star Jono Lancaster very physically attractive.

 

 

 

On a slightly more serious note, she strongly believes that disabled people, as well as being attractive, are more than capable of finding and choosing their own love interests and/or romantic partners- without any help from trashy, disablist TV programmes with outdated opinions.

 

 

 

So, disabled readers, Same Difference believes that we shouldn’t care that Love Island doesn’t seem to find Us Lot attractive. We don’t need ’em, anyway.

 

 

 

They need us though, to view their trashy programme and give ’em ratings. We have non-disabled family members and friends and even (shock horror) non-disabled romantic partners who may wish to join us in never watching Love Island again because Love Island have chosen to reveal this outdated opinion in public.

 

 

But, readers, if Love Island doesn’t care about its power to reach a mass audience and influence their opinions on all differences, why should our editor, who has never seen their programme in her life, and now has even less of a wish ever to do so, waste her time and sarcasm writing articles about their outdated policies and the damage these outdated policies could do?

 

Whorlton Hall: The Guardian View On Abuse Of People With LD

June 3, 2019

The publication in quick succession of three reports, combined with last week’s BBC Panorama programme showing patients at Whorlton Hall hospital being abused by staff, have shed much-needed light on the mistreatment of learning-disabled people. Eight years after a reporter went undercover at a similar hospital, Winterbourne View, the scenes appearing to show vulnerable adults being bullied and threatened were all the more appalling for being familiar.

The emergence over the weekend of a whistleblower, former Care Quality Commission inspector Barry Stanley-Wilkinson, made the systemic nature of this failure even clearer. Mr Stanley-Wilkinson says he wrote a critical report of Whorlton Hall that was never published. The CQC says that report did not allege abuse. But it has apologised for failing to spot problems at Whorlton Hall, which it recently rated “good”.

The hospital, which was recently taken over by the US healthcare company Cygnet, now stands empty. Ten staff have been arrested and the criminal justice process must run its course. But any grim satisfaction in rooting out bad apples should be short-lived. What has been revealed over the past 10 days, in reports by children’s commissioner Anne Longfield, the CQC and academic researchers as well as by the BBC, goes beyond the actions of a callous few.

The underlying problem has three main aspects. The first is discrimination against learning-disabled and autistic people. Last week’s review of mortality rates, commissioned by the NHS, showed that women and men with learning disabilities die 27 and 23 years earlier than the general population, with researchers pointing to “bias in treatment” as an explanation.

Such bias of course intersects with other prejudices – as the variation in death rates between women and men suggests. Panorama provided further evidence of this, with shocking footage of male carers ganging up on a female patient known to be afraid of men, a form of misogynist bullying they described as “pressing the man button”.

The second aspect is the standard and status of work in the care sector. This question is far bigger than Whorlton Hall. The fact is that care – whether of autistic or disabled people, dementia sufferers or looked-after children – is undervalued. This does not excuse unkind or illegal behaviour. It does mean that many of the people employed in this area are underqualified, poorly motivated and unsuited to what must be recognised as demanding work.

The third aspect is structural and concerns commissioning and regulation. The squeeze on local authority budgets combined with the government’s failure to propose, let alone deliver, a policy on social care, has created unhealthy conditions. The commissioners who purchase care packages must be accountable. So must the CQC. But politicians too must take responsibility for the failure to follow through on commitments made following previous scandals. Health secretary Matt Hancock’s refusal to be interviewed about Whorlton Hall was a serious mistake.

Since 2011, the number of adults living in specialist hospitals has fallen from 3,400 to 2,300. But steep rises in the use of physical restraint, combined with warnings from Anne Longfield and others about “values and culture”, are alarming. If the government has rejected proposals for an independent commissioner for learning-disabled people, ministers must explain why – and what they plan to do instead.

Whorlton Hall: CQC Launches Investigations

June 3, 2019

The health watchdog is launching a review into how it handled a 2015 report raising concerns about Whorlton Hall hospital.

Former Care Quality Commission (CQC) inspector Barry Stanley-Wilkinson said he wrote the report four years before BBC Panorama revealed the alleged abuse of patients.

The CQC said there would also be a review of its regulation of the County Durham hospital between 2015 and 2019.

Ten workers have been arrested.

BBC Panorama’s undercover filming appeared to show patients with learning difficulties being mocked, intimidated and restrained.

The site had at least 100 visits by official agencies in the year before the abuse was discovered.

The CQC said it has commissioned David Noble QSO to undertake an independent review into how it dealt with issues raised by Mr Stanley-Wilkinson.

It has previously said his draft report raised no concerns about abusive practices.

Opportunities ‘missed’

A second, wider, CQC investigation “will include recommendations for how its regulation of similar services can be improved, in the context of a raised level of risk of abuse and harm”.

Responding to the announcement, Health Secretary Matt Hancock said he had been “appalled” by the abuse allegations and was “determined to ensure lessons are learnt so this never happens again”.

He said: “It is clear that opportunities to intervene were missed and we must be open and transparent in getting to the bottom of why this happened.”

Seven men and three women were arrested at addresses in Barnard Castle, Bishop Auckland, Darlington and Stockton last week.

They were being questioned about offences relating to abuse and neglect at the privately-run NHS-funded unit, Durham Police said.

Cygnet, the firm that runs the 17-bed hospital unit, has said it was “shocked and deeply saddened” by the allegations.

Rory Cellan-Jones Reveals Parkinsons Diagnosis

June 3, 2019

The BBC’s technology correspondent is encouraging people to be open about their illnesses.

Rory Cellan-Jones revealed on Thursday he has been diagnosed with Parkinson’s disease.

Concerned TV viewers contacted the corporation after noticing his hand shaking during a report on 5G technology on BBC Breakfast.

“I wanted to be frank about it,” he told BBC Radio 5 Live on Friday morning, urging others to do the same.

Symptoms of Parkinson’s – a degenerative brain condition – include involuntary tremors and stiff muscles.

“A few months ago I was diagnosed with Parkinson’s disease and it wasn’t a huge shock to me as I’d noticed a few things in the last year changing,” he told 5 Live host Nicky Campbell.

“But I was aware that people were noticing on air occasionally this tremor in my right hand. Live broadcasting is always pretty hairy, because we were doing a live broadcast over 5G.

“I got on the train with my producer to head to Birmingham to do more and we had a little chat and she put the idea in my head of going public about this because she’d obviously noticed the shaking on air and few other people had.

“So I just put it out there really wanting to be up front about it because some people were worried a couple of people had actually contacted the BBC and suggested I should see a doctor and I’d already done that and I wanted to be frank about it.”

He added: “I’ve had loads of lovely messages, including a few from people who’ve also had Parkinson’s.

“One person wrote to me saying, ‘I work in PR and I haven’t told my clients, I’m not sure what they would think’. And I think that’s really sad.

“I was with a great Parkinson’s nurse the other day and she told me about a client of her’s who’d been diagnosed really young and he’d lost his job because he began to slow down a bit and he hadn’t told his employers about it.

“You need that information out there.”

Cellan-Jones went on to say that he’s now on medication and also taking part in medical research into the disease, which has so far manifested itself in a slight limp, hand tremors and his typing getting worse.

“I’m getting good treatment and the symptoms are mild right now,” he wrote on Twitter a day earlier, “so I’m carrying on as normal. Onwards and upwards!”

His BBC colleagues and MPs were among those to offer messages of support on social media, with Brussels reporter Adam Fleming writing: “True public service to be so open about it. Best wishes.”

Julie Dodd, a director at Parkinson’s UK, said: “Being diagnosed with Parkinson’s can be a scary and isolating time, so it is fantastic to hear that Rory is receiving the treatment he needs and is able to approach his diagnosis with such a positive attitude.

“Parkinson’s will affect one in 37 of us in our lifetime, but it remains a little understood condition.

“While most people associate it with a tremor, there are actually more than 40 symptoms and it affects everyone differently.”

Cellan-Jones started his BBC career as a researcher on Look North and became the business and economics correspondent in 1990.

After the dot-com crash of 2000, he wrote the book Dot.bomb and has reported on the growth of websites and internet companies.

Homeless And Disabled

May 31, 2019

The number of physically disabled people affected by homelessness in England increased by three quarters during an almost 10-year period, according to official statistics.

Now new government figures show thousands of vulnerable people are struggling amid a shortage of suitable accommodation – with many living on the streets.

The Ministry for Housing, Communities and Local Government says it’s “providing councils with almost £1 billion over the next two years to adapt properties for disabled people.”

The BBC’s disability news correspondent, Nikki Fox, has been to meet three homeless disabled people in Birmingham to hear their stories.

Charity Complains To ASA About DWP Fake News

May 30, 2019

With many thanks to Benefits And Work.

Anti-poverty charity Z2K have made an official complaint to the Advertising Standards Authority (ASA) about the DWP’s taxpayer funded fake news campaign.

Earlier this month we revealed that the DWP was launching an advertising blitz disguised as news in the Metro newspaper.

In a leaked memo, Universal Credit Director General Neil Couling boasted that people would not be able to tell that the 9 weeks of fake features were written by the DWP and would instead “wonder who has done this ‘UC Uncovered’ investigation.”

The adverts have now begun running in the Metro and online and Z2K have complained to the ASA on a number of grounds.

They point out that one ‘myth buster’ claims that it’s a “myth” that “you have to wait 5 weeks to get any money on Universal Credit”, followed by “fact: Jobcentres can “urgently pay you an advance.”

Z2K point out that:

“It is not clear that an advance must be paid back, the advert omits that these advances are taken out of future benefits and have to be paid back over several months, leaving people in subsequent months, with less money than they are entitled to, and less money than they will have actually budgeted for.”

The charity also takes issue with the simplistic claim by the DWP that they can pay your rent directly to your landlord.

Instead, Z2K explain that:

“In reality, you have to apply to the job centre for this to happen, and you have to meet certain criteria. As an advice agency, we have applied for people with numerous vulnerabilities to have the housing element of their Universal Credit paid directly to landlords, and we have not been successful in securing this.”

Finally, Z2K takes issue with the statement that it’s a “myth” that “Universal Credit doesn’t work”, followed by: “fact: it does.”

They point to the “damning evidence” the work and pensions committee have published on the hardship caused by UC and also quote the committee’s chair, Frank Field, whose furious reaction to the DWP adverts was:

“If the DWP wants to understand the facts about Universal Credit, it could look to the horrific, harrowing evidence we heard this morning. People – mostly women, single mums, students – are telling us that they are forced through sheer desperation to exchange sex for the means to feed, house and warm themselves and their children. Instead of going out to get the evidence for itself, the DWP just dismisses this testimony as anecdote and brushes it aside.”

“Rather than wasting huge chunks of desperately needed resources on 10 weeks of advertorial, why won’t the Government just take a look at the terrible reality of the facts we and so many others are showing them, for free, and instead spend that money on making some of its claims about UC helping people come true?”

Z2K have warned that the adverts could lead people on legacy benefits to wrongly believe they would be better off on UC and make a claim as a result. They have asked the ASA to act as quickly as possible.

You can read the full text of the complaint on the Z2K website.

New Almost-Pensioner PIP Claimants To Get 10 Year Awards

May 30, 2019

With many thanks to Benefits And Work.

The DWP has announced that from 31 May, new PIP claimants whose review would have been scheduled after they had reached State Pension age will instead receive an ongoing award with a light touch review at 10 years.

Minister for Disabled People Justin Tomlinson said:

“We are determined to improve our support for disabled people, and stopping needless PIP reviews for pensioners is the right thing to do.

“This step means new claimants to PIP who reach State Pension age before their review is due won’t have one unless they tell us their needs have changed, and the next step is to bring this in for all pensioners.”

The DWP also announced that the 10 year light touch review will be extended to existing PIP claimants above State Pension age in the coming months

The switch to light touch reviews for claimants of pensionable age was announced back in March of this year but no timetable for its full introduction was given at that time.

You can read the full DWP press release here.

Panorama- Crisis In Care: Part 1- Who Cares?

May 29, 2019

Tonight, BBC1, 9pm.

Panorama reveals the failings of our social care system, as our population gets older and more of us need help with day to day living. In the first of a two part series, the BBC’s social affairs correspondent Alison Holt has filmed in Somerset for a year, focusing on four families, all exhausted by the demands of caring 24 hours a day for their loved ones, and desperately trying to get more help. She also follows the fortunes of the county council who, like local authorities everywhere, are fighting to balance their books after years of budget cuts.

Breda, Europe’s Most Accessible City

May 29, 2019

When I arrived at Breda station last month to find out why this Dutch city was recently named the winner of the 2019 Access City award, I did something I have not done while travelling in a long time. Instead of taking a taxi, I independently pushed the two kilometres to the hotel, to see whether lack of access for wheelchair users like me is as big a problem here as it is in most other cities.

Usually, a journey like that would be a nightmare, particularly in older European towns like Breda, a city of just under 200,000 people that was an important centre during the Holy Roman Empire. Medieval city centres and cobble-stoned markets are a recipe for broken castor wheels and painful pressure sores for wheelchair users.

On average, the cost of living for disabled people is £583 a month higher than for their non-disabled peers – a substantial amount of which goes towards paying for taxi journeys to mitigate inaccessible public transport options. Travelling is even costlier: disabled people often have to stay in more expensive accessible hotels when hostels and independent bed and breakfasts are not a viable, barrier-free option. Add in the cost of damaged equipment and medical bills from injury, and the feelings of fear and isolation that lack of access creates, and you have a recipe for cities that feel difficult and anxiety-inducing.

Q&A

But in Breda, I found that the issue had been turned on its head. The city authorities have pulled up all the cobblestones in the centre that surround the Grote Markt and Grote Kerk marketplace and church, turned them upside-down and sliced them widthways. The result: a flat surface for those with mobility impairments, while keeping Breda’s streets just as photogenic as they were before.

It was a literal breath of fresh air pushing myself through Valkenbergpark’s widened, flat pathways. I saw the portable threshold ramps that Breda’s shopkeepers lay out when they raise their shutters in the morning, encouraging business from customers of all abilities – something you rarely see in the UK. I learned that all buses and bus stops in the city are now fully accessible to wheelchair users, with drivers trained in disability awareness.

Once at the hotel, I found wellness and physiotherapy facilities for disabled guests; the accessible rooms had lowered wardrobes and mirrors, wheel-in showers and seated baths. You don’t even have to pull open the main door to enter the hotel: a camera detects your arrival and the door opens automatically. There are even plans to create a tactile navigation line along the route I took, to help visually impaired visitors move from the train station to the city centre through Valkenbergpark.

Over the past two years, more than 800 shops and bars have been checked for physical access. And in 2017, Breda’s main website was made fully accessible for all, including those with sensory impairments; accessibility improvements were made to another 25 websites that aid residents and tourists. Mastbosch, Breda’s forest, is fully wheelchair-accessible, and every two years the city hosts the ParaGames, a large European sporting event for disabled people.

Improvement hasn’t come overnight, says Marcel Van Den Muijsenberg, a fellow wheelchair user who volunteers his time to consult for improved access in the city. Breda has been working on the issue of inclusion for all since the 1990s, with the city’s local foundation Breda-Gelijk! (Equal Breda!) reviewing all new plans and initiatives.

“Most people think that the Access City award means that Breda is the most accessible city in Europe,” Van Den Muijsenberg says. “It isn’t, and the award isn’t about that. It’s about a commitment to improve and partners working together towards this commitment. We have done a lot, but there is more to do.”

Karel Dollekens, a civil servant working on accessibility in Breda, says he believes a willingness to collaborate is what won the award. “We have a wide network of university professionals, city staff and disabled people working together,” he says. “Sometimes we have heart-to-hearts, sometimes we get angry about the reality of projects and the limitations we face, but the conversation always continues. The network has now become a movement.”

After focusing almost exclusively on physical access, Breda’s accessibility groups are widening their focus to improving digital communication and resources to include those with sensory and learning impairments. Breda’s city council is slowly but surely introducing easy-read regulations for all documents and, if an organisation wishes to run an event in the city, it now receives an accessibility checklist that must be complied with.

Van Den Muijsenberg is delighted with Breda’s success, but realistic about the journey ahead and the need to spread better awareness. “Security staff at pubs and clubs need training,” he says by way of example. “Disabled people are being refused entry because staff think they are too drunk, rather than disabled.”

Indeed, perception affects inclusion just as much as a lack of physical access. Ramps and automatic doorways mean little unless paired with social confidence, a welcoming atmosphere and the desire to treat a disabled customer in the same manner as their non-disabled peers. But Breda is heading in the right direction.

“People aren’t disabled,” Dollekens says. “The environment they live in is.”

Alexandra Adams: Deafblind Medical Student

May 29, 2019

Alexandra Adams has severe visual and hearing impairments but she is determined to become a doctor.

“I might not have as much eyesight as most, but I have more insight than many,” she said.

Despite this, the third-year medical student at Cardiff University said she had experienced discrimination from medical staff while on placement.

She has now created a photography project to show there is “no set image to being an NHS worker”.

Alexandra, from Cardiff, is completely deaf without hearing aids and her sight is gradually deteriorating. She also lives with muscular disease which has seen her in intensive care on 14 occasions.

She was spurred on to become a doctor after spending 18 months in hospital at the age of 16, when she needed a number of stomach operations.

Now she is training to become a doctor, Alexandra says she often finds herself having to answer the same question – how she is able to carry out her work.

“In terms of how I practically complete tasks, I have a Bluetooth stethoscope, for example, which is like a normal stethoscope except I don’t put it in my ears, it connects to my hearing aids,” she explained.

“I rely on my other senses such as touch to feel where the veins are. Also, you can pick up a lot about patients just by listening to them.

“Patient safety is always paramount so if I’m doubting something, or I’m unsure, I always ask someone else.”

While saying there is nothing she cannot do, Alexandra admitted there were some tasks she finds more difficult, which is why she opted to work in palliative care rather than surgery.

In addition to these challenges, while training she said she has faced a level of discrimination she was unprepared for.

“Day to day, before medical school, being deafblind did not hinder me in any way whatsoever,” she said, adding she was “a very independent person”.

“When I came to medical school the discrimination I faced was loads of people saying ‘you can’t do this, you can’t do that’. That’s when it started being difficult and hard to deal with.

“I was constantly told that I wouldn’t be able to do things, succeed in the field, and to essentially just stand in the corner and not touch any patients. “

To find out whether she had done the right thing, Alexandra travelled to the USA to meet other doctors working with disabilities.

“I met four blind doctors in New York City, then flew further out to San Francisco and met another blind doctor and also a deaf doctor,” she recalled.

Seeing these doctors succeed in their careers was all the proof Alexandra needed to continue her studies.

“The support networks, the acceptance and accommodation of doctors with disabilities, was just so much better and well-known than here,” she added.

“Unfortunately we still have a long way to go with this acceptance in the UK.”

Her experience prompted her to create Faces of the NHS, a photography project documenting diversity in the health service.

“I get a lot of people saying to me ‘you don’t look like a medical student, you’ve got a cane, you’ve got hearing aids’, that’s when I came up with the idea,” she said.

For her project, Alexandra takes portraits of various NHS workers, past and present, and includes a little of their backstory.

She says people are often curious about how she takes photos.

“I do get really weird looks when I’m walking down the street, people are like ‘how can she take a photograph? She’s blind, she’s got a white cane with her’.”

However, she says she is more concerned with the story behind the picture – rather than how it is taken.

“I did it to show that we’re all different, so that we can celebrate our differences and our diversity,” she added.

“I wanted to take a negative experience and turn it into a positive impact.”

The project aims to make people more aware of the variety of people who work in the NHS.

While Faces of the NHS is being documented on social media, Alexandra hopes to eventually compile all of the images into a book.

At first, she was approaching people to be involved in the project, but now they’re coming to her.

Her latest portrait is of bestselling author and former doctor Adam Kay.

“It’s very exciting and a very positive thing to be happening, but at the same time, I do have to be very realistic and careful,” she said.

“I am a medical student, and I am studying for exams, I have to try and prioritise the project alongside my work – the real work.”

Almost 1 In 5 PIP Reports Unacceptable Or Have To Be Altered

May 29, 2019

With many thanks to Benefits And Work.

 

Almost 1 in 5 PIP reports created by Independent Assessment Services (IAS, formerly Atos) were either unacceptable or were only acceptable after changes had been made to them. The shameful figures were released this month by Justin Tomlinson, minister for disabled people.

The figures showed that 19.4% of IAS PIP reports which were audited were found to be either ‘Unacceptable’ or only ‘Acceptable with amendments’.

A further 17% were acceptable but required the health assessor to be given feedback about aspects of their report.

That such a high proportion of reports are of such poor quality six years after PIP was introduced is a matter a matter of enormous concern, especially to claimants who are likely to lose out because of sub-standard assessments.

It lends additional credibility to the intention of the Scottish administration to move all benefits assessments in-house again.

The full figures are set out in the table below.

 

Grades April 16 – Mar 17 April 17 – Mar 18 April 18 – Mar 19
Acceptable 7,300 7,930 7,480
Acceptable with feedback 1,380 1,820 1,990
Acceptable with amendments 650 1,220 1,780
Unacceptable 460 620 500
Total audited 9,790 11,590 11,750

 

 

ATUs: Week Of Action, 24th-28th June

May 29, 2019

Same Difference has been asked to publicise the below by a friend of the site.

 

SEND Pupils To Stage Funding Protests

May 28, 2019

Thousands of families with children who have special educational needs and disabilities (Send) are to stage protests across England over funding cuts they say have left many pupils without adequate support and unable to attend school.

Parents, disabled children and their supporters will march in more than 25 locations on Thursday, including London, Bristol, Birmingham, Widnes, Worthing, Stevenage, Leamington Spa, Matlock, Colchester and Dorchester.

It is part of a campaign by families whose struggle to secure the support their children need to access education has pushed the issue of Send funding up the political agenda before the government’s forthcoming spending review.

Among the protesters will be Emma Parker, a primary school teacher from Durham whose 13-year-old son, James, will hand in a petition to Downing Street calling on the government to end what campaigners say is a national crisis in Send funding and delivery.

James has spent 29 months out of school over the past five years as a result of exclusions and reduced timetables. While his primary school worked hard to meet his needs, James was unable to find a secondary school that would accept him, so spent nine months at home without even a tutor.

 

“I’ve got a child who has not been in full-time education for five years,” Parker said. “He is struggling to engage with the curriculum. He’s a really, really bright little lad who has been broken by the education system. We want more money for Send. We don’t want our children to be deemed a drain on schools. We need schools to be fully funded and we need child adolescent mental health services to be fully funded.

The government says funding has increased since the introduction of individual care plans for Send pupils as a result of new legislation in 2014. However, campaigners say the number of children and young people requiring support continues to rise, and demand is outstripping funds.

The Local Government Association estimates councils in England face a Send funding gap of more than £500m this year. Parents denied appropriate support for their children are resorting to legal battles to secure their children’s entitlement.

Families have taken their local authority to the high court to fight cuts to high-needs spending, and a judicial review case is pending against the government, accusing ministers of unlawfully underfunding special needs education.

It took Ella Sayce, of Weston-super-Mare, two years to get an autism diagnosis for her son Blake, five, and a year to finalise his care plan. “It’s been horrible. I’ve been made to feel like a bad parent. It’s barbaric.

“My fear is that we are going back to the 1960s where we were institutionalising people with these disabilities, so it was known about but not seen,” said Sayce, who will be protesting in Bristol. “I want to sustain Blake in mainstream education and give him the most normal life he possibly can get.”

The Department for Education recently announced a call for evidence on funding arrangements for Send pupils, which will run until the end of July. A year-long inquiry by the Commons education select committee, which will report later this year, was told repeatedly by witnesses that the system was not working.

Poppy Rose, the co-founder of Send National Crisis, said: “The government said austerity was over, but families say the lack of funding for support is having a detrimental effect on the mental health, life chances and outcomes of disabled children and young people.

“It is an intolerable situation that means access to rights, equality, inclusion and the prospect of a bright future are being wrongfully denied to many thousands of disabled children. This is not just a national crisis; it is a national scandal.”

The Department of Education said: “Funding for the high needs budget is a priority for this government and we know that councils and schools are facing pressures –that’s why in December, we provided an extra £250m up to 2020 to help manage these costs. This takes the total amount that we have allocated for high needs funding to £6.3bn this year, compared to £5bn in 2013.

“At the same time, the education secretary has been clear that we are working closely with the sector as we approach the spending review, we have launched a call for evidence to make sure the funding system is getting money to the right places at the right time and we are revising the SEND Code of Practice to improve ways to identify and meet special educational needs.”

I’ve Never Had A Smear Test Because My Surgery Doesn’t Have A Hoist For Disabled People – Yet I Keep Getting Letters Saying I’m Risking My Life

May 28, 2019

Women with disabilities across the UK say they are being forced to miss life-saving cervical cancer screenings.

Women who are physically disabled say they have had to go without a cervical screening for years because GP surgeries do not have hoists, which are essential for a safe transfer to an examination table for a screening.

Women with disabilities are also reporting being denied screenings at home or in hospital and being told by medical professionals that other options including referrals and home visits, which are allowed under local NHS services’ guidance, cannot be accommodated.

A campaign for equal access to screenings was launched in January after an online petition gained the support of more than 100,000 people in just one month. The petition calls on the NHS to install hoists in all medical centres, and has prompted research into the experiences of cervical screenings for women with disabilities for the first time.

The petition was started by 30-year-old Fiona Anderson, who has muscular dystrophy and lives in Bolton. She says she has never had a cervical screening because her surgery does not have a hoist. After seeing her father die from cancer, the reality of not being able to get checked is a constant source of anxiety for Ms Anderson.

I still receive letters saying I’m risking my life

She told i: “My current surgery doesn’t have a hoist, my last surgery didn’t have a hoist. As far as getting a cervical screening is concerned, as a mum-of-two, it’s something I wanted to have.”

Ms Anderson, a full-time muscular dystrophy campaigner, says she has not been able to secure a referral to a hospital, having been told by surgery staff she needs a prior screening result to be referred – an impossibility without a hoist.

“They are not willing to refer me to a place that might have a hoist because I have no previous record of pre-cancerous cells, but that’s because I’ve never had a scan. I run the risk of cervical cancer going undetected purely because of an accessibility issue related to my disability.”

“I still receive letters reminding me my smear test is overdue and that by skipping it I’m risking my life,” she added.

Around 17 per cent of all women in the UK aged 12 to 50 have a disability, according to disability charity Scope, but there are no exact figures of just how many women are affected by screening accessibility. There are approximately 260,000 people in the country who need the use of a hoist to access a public toilet, according to Changing Places UK. This means the same number would most likely need a hoist to access a medical examination bed.

‘I was told it couldn’t be done at home’

Since becoming housebound with ME/CFS over seven years ago, Jo Moss, 44, says she has had many doctors appointments at home but was told a screening could not be done there.

Ms Moss, from Norwich, told i: “When my reminder came through I rang my doctor straight away to make an appointment. I was told that it couldn’t be done at home, and I wasn’t given any other options.

“I left it for three or fours years and then when Fiona put her petition on Twitter, I contacted my GP again, first by phone, then by letter and another letter and I got the same brush off.”

Ms Moss says the GP wrote back, saying a normal bed was too soft for a screening and the test needed to be done on an examination table. She also says the GP cited a lack of an adjustable light as a reason for a home screening being impossible.

When asked why Ms Moss would be refused a cervical screening at home, a spokesperson for NHS Norwich Clinical Commissioning Group (CCG) said: “We would advise anyone who is eligible for a health screening but is not able to arrange this with their GP practice because they cannot leave their house to contact their local NHS Clinical Commissioning Group who will endeavour to make appropriate arrangements.”

Ms Moss says in her second and most recent letter, she explained to the GP she had an adjustable hospital bed to have the screening on and even asked if a friend, a nurse at a different surgery, could do the test.

“All of those things seemed to change my GP’s mind. A couple of days later I got a call from the practice nurse saying she wanted to book an appointment to do my smear test at home.

The nurse made the appointment with Ms Moss and she was able to have a screening at home. Ms Moss used the hospital bed in her home for the screening and the nurse wore a head torch.

Ms Moss added: “It was quite frustrating that it turned out to be so straightforward after being told it couldn’t be done at home.”

‘I’ve never been able to have a screening’

Michaela Hollywood, from County Down in Northern Ireland, should have had the test when she turned 25. Now 28, she says she has not yet been able to have a preventative screening because of a lack of hoist, despite her spinal muscular atrophy making her more prone to reproductive infections.

Ms Hollywood said: “When I asked for a screening, my doctor said, ‘are you sure you want to have a smear?’ When I went to the gynaecologist for something different, he said he wouldn’t give me a screening because I hadn’t been sexually active.

“I don’t think that’s an appropriate response. I don’t think they would take that approach with a non-disabled woman.”

In Northern Ireland, the NHS is referred to as Health and Social Care, or HSC. The cervical cancer screening programme in Northern Ireland is run by the HSC’s Public Health Agency screening team. On the HSC’s cervical screening website, the guidance is that all women should be screened, although the risk of developing cervical cancer is low for those who have not been sexually active.

Dr Tracy Owen, Consultant in Public Health Medicine with Northern Ireland’s Public Health Agency, said: “The chance of cervical cancer in someone who has never had sexual intercourse is very low, but if someone participates in other sexual activity which exposes them to potential transmission of the Human Papilloma Virus, their risk may increase. For that reason, they are advised to discuss their need for screening with their doctor or nurse. While we can’t comment on this specific case, it is not unreasonable that a patient under certain circumstances may be advised that a cervical screening test is not required as the patient’s individual risk of cervical cancer is very low.”

Ms Hollywood believes a stretched health service might be to blame: “I know the NHS is under pressure and I value the NHS for what it does, but that doesn’t mean that disabled women should be missing out on what is a really important screening.”

‘A postcode lottery for women’

The petition has inspired other women to share their stories of being forgotten by the screening system. Once the responses revealed Ms Anderson’s case was far from isolated, research into physically disabled people’s experiences of cervical screenings began and is the first of its kind. Two national charities, Jo’s Cervical Cancer Trust and Muscular Dystrophy UK, are now conducting surveys asking women to share the issues they have had accessing screenings.

Those behind the research at Jo’s Cervical Cancer Trust say they have also not been able to find any national guidance for women with physical disabilities seeking screenings. Instead, they have uncovered “a postcode lottery in terms of the opportunities afforded to women”.

Robert Music, Chief Executive of Jo’s Cervical Cancer Trust, said: “There has been very little research done about these until now and we have uncovered numerous issues ranging from a lack of wheelchair access at some GP surgeries, patchy provision of home visits or hoists and sadly misconceptions around the sexual health of women with physical disabilities.

“It’s not acceptable that there are such inequalities in accessing this potentially life-saving test. We hope our report can give some much-needed insight and guidance on what needs to be done to make this test more accessible for these women including the increased availability of provisions and alternative arrangements as well as innovative changes to the current screening programme.”

Self-sampling

One such alternative supported by the charity is self-sampling, where women use a home kit instead to test for HPV, which causes 99.7 per cent of cervical cancers.

Jo’s Cervical Cancer Trust says the option for women to do the tests themselves in the privacy of their own home would be an important one for those who are physically disabled.

HPV self-sampling comes in the form of a swab, such as a long cotton bud or soft brush. Patients take a sample from the vagina and post it to the laboratory.

Other countries, including Australia and Denmark, have already made the move to self-testing. The UK is due to start a six month pilot for self-sampling in September of this year in selected areas of the country, but a full rollout of the scheme may not be seen for some time.

The charity is collecting responses from people with disabilities online now. A full report featuring the responses of hundreds of women is due to be released next month.

In response to questions about disabled women’s struggle to secure cervical screenings, an NHS England spokesperson said: “As set out in the Long Term Plan, the NHS is taking action to do more for people with a disability, including rapidly expanding the number of people getting health checks every year.

“As we increase access to care across the country, local NHS services will need to do more to increase screening of all underserved groups in their own community.”

NHS England, the leading operational body handling cervical screening, expects local services to make accommodations for people with physical disabilities, rather than supplying national guidelines.

The spokesperson added: “It is important people can tell their doctor about their disability so they receive extra support but crucially, local NHS services should be making adjustments so women with a disability can easily be screened.”

A spokesperson for NHS Bolton CCG said the lack of hoists across surgeries could be a result of a number of reasons, including the size of the practice.

The spokesperson said: “All our GPs are made aware of the process of referring people with complex needs. Gynaecology wards and women’s health care wards say they do receive referrals from GPs. They are equipped to receive women with disabilities. We would always prefer for the patient to be in a facility but the government guidance says that domiciliary visits can be arranged.”

Whorlton Hall: Former Inspector Says Warnings Were Ignored

May 28, 2019

A former inspector at the Care Quality Commission says a 2015 report into Whorlton Hall hospital which presented “warning bells” went unpublished.

Barry Stanley-Wilkinson says he wrote the report four years before BBC Panorama revealed the alleged abuse of patients with learning disabilities and autism.

The CQC said the draft report raised no concerns about abusive practices.

The claims come after 10 workers at the specialist hospital were arrested.

Seven men and three women were arrested last week at addresses in Barnard Castle, Bishop Auckland, Darlington and Stockton over the alleged abuse of patients.

An undercover BBC Panorama investigation into the specialist hospital in County Durham – a 17-bed unit for adults with learning difficulties and autism – appeared to show patients being mocked, intimidated and restrained.

Cygnet, the firm that runs the 17-bed hospital unit for adults with learning difficulties and autism, said it was “shocked and deeply saddened” by the allegations.

The company only took over the running of the centre at the turn of the year and said it was “co-operating fully” with the police investigation.

‘Poor culture’

The site had at least 100 visits by official agencies in the year before the alleged abuse was discovered.

Mr Stanley-Wilkinson says he noticed a “very poor culture” was evident when he led the 2015 inspection.

He told the BBC that he had raised concerns over the “very poor culture” in a report he wrote – four years prior to the BBC investigation.

He said: “I strongly believe that anybody that can understand organisational culture reading that report would agree that there was definitely warning bells there.

“I was extremely upset. This should have been listened to back in 2015 and I said quite openly, when I left the organisation, that I felt it had neglected its promise to people with learning disabilities.”

He said it was the only report he wrote in nearly a decade of working at the CQC which wasn’t published.

In a statement, the CQC said the report went through a “rigorous peer review process”.

It said the draft report “did not raise any concerns about abusive practice”.

The CQC said a later inspection rated the hospital as “good overall”.

In a statement it said: “We are in the process of commissioning a review into what we could have done differently or better in our regulation of Whorlton Hall and these allegations will be fully investigated as part of this.

“We will update on the progress and findings of this review in our Public Board meetings.”

Read more…

Is Cerebral Palsy TV Comedy Gold?

May 28, 2019

‘It took years to convince someone to make this show,” says Ryan O’Connell. “First of all, my book flopped and sold two copies.” Called I’m Special: And Other Lies We Tell Ourselves, the book was a moving and hilarious account of something he had been hiding in the popular blogs he had written about his life as a gay millennial. Like 17 million other people around the world, O’Connell has cerebral palsy, a condition affecting muscular coordination.

Four years on, Special, the comedy series based on his book, is airing on Netflix to great acclaim. Written by and starring O’Connell as a fictionalised version of himself, Special follows the writer as he interns at a clickbait journalism site called Eggwoke that publishes confessional blogs headlined “50 Ways to Hate Myself” or “Why Do I Keep Finding Things in My Vagina?” When his colleagues assume his condition is the result of a car accident, and not cerebral palsy, he goes along with it.

O’Connell took his pitch to several cable networks in 2015. Despite enthusiastic responses face-to-face, the answer was always no. “I think ‘gay and disabled’ was a concept people couldn’t wrap their heads around in 2015,” he says. Or, as he wrote back then: “Cerebral palsy is NOT FUCKING TRENDING ON TWITTER.”

It still isn’t. But it could be time Twitter caught up, because O’Connell – whose show was eventually made after Big Bang Theory star Jim Parsons got behind it – is not the only TV writer finding the funny side of the condition. In the past few months, four comedies featuring characters with cerebral palsy have aired. Speechless, about a teenager with cerebral palsy and his family, has just concluded its third season in the US. BBC Two’s Don’t Forget the Driver starred a character called Kieran who has cerebral palsy, and devoted an episode to his trip to a hydrotherapy pool.

On BBC Three, American Tim Renkow has created Jerk, a semi-autobiographical comedy in which he plays an American, also named Tim Renkow, who lives in London and uses his condition as a free pass for questionable behaviour. Renkow watches inappropriate videos at work, walks barefoot around the office, tells his boss he defecated in his desk drawer, and poses as a Syrian refugee for a free hot meal. “British people are so nice it’s hard not to fuck with them,” he tells his mother via Skype.

“On screen,” says Renkow, “disabled people are often less like characters and more like plot devices. I don’t like that disabled people are never flawed.” In Jerk we are presented with someone who is lazy, deceitful, stingy and rude.

Wills Whittington, the 20-year-old who plays Kieran in Don’t Forget the Driver, was drawn to the role because the character is confident, cheeky and foul-mouthed. “He suited my personality!” he laughs. “He was never patronised. I double-checked that I spoke clearly and made sure we retook scenes if I didn’t. I would swap different words into the script if needed. I wanted to show that disabled people can act.”

There are thought to be 13.9 million disabled people in the UK and 61 million in the US. But a recent report found that only 2.1% of regular characters in primetime series had a disability: the highest it’s ever been, but still far short of proportionate. In film, the picture isn’t much brighter. One 2016 study found that, of the year’s top 100 grossing films, 2.7% of speaking characters had a disability.

And most are not played by disabled actors. Another 2016 study found that more than 95% of disabled characters on TV are played by able-bodied actors. Those performances are richly rewarded: actors without disabilities who are Oscar-nominated for playing a disabled character have an almost 50% chance of winning. (To date, 59 non-disabled actors have earned Oscar nominations for playing disabled characters; 27 have won).

It’s a frustrating picture. Maysoon Zayid is a 45-year-old actor and comedian from New Jersey. Her Ted Talk about life with cerebral palsy has been viewed more than 10m times, and she is currently developing her own show, Sanctuary, for TNT. “My life’s mission,” she says, “has been to get the industry to realise how offensive, inauthentic and harmful it is to have non-disabled actors play disabled. If a wheelchair user can’t play Beyoncé, then Beyoncé can’t play a wheelchair user. Yet most people do not consider disabled actors for roles that are written non-disabled.”

“A story,” says O’Connell, “is best depicted by the person who has lived that experience.” Whittington agrees: “We know how it feels to be disabled in our everyday life.” But he adds that the question of who should portray a disabled character depends on the disability, citing Eddie Redmayne as Stephen Hawking as a positive example of a performance from an able-bodied actor. “If a character has Down’s syndrome, it wouldn’t work.”

For Renkow, there’s another issue. “I think getting disabled people writing, producing or directing is more important,” he says. “If you want people to take you seriously, it’s very important to tell your story – and the only way to do that is to be behind the camera.”

“Honey,” says O’Connell, “there’s not much out there. And the stuff that is is usually created by able-bodied people, which is not chic. Our stories need to be told by us.”

Still, it does feel as if progress is being made. “Thirty years ago,” Whittington says, “people with disabilities didn’t have these opportunities.” And these four shows feel like a symptom of something positive, at least in TV comedy, the place where glass ceilings are increasingly being broken.

“Humour cuts through discomfort,” O’Connell says. “It covers the vegetables in sugar. It puts people at ease, especially with disability. I think people are so scared of us, they don’t know what to do. By giving them permission to laugh, it makes them instantly comfortable.” Renkow echoes this: “Comedy is a good place to dip your toe in the water. It’s relatively easy to slip new ideas past people when they’re laughing.”

Is this a watershed moment? “Sure,” says Renkow. “I hope so,” adds O’Connell. “We’ll know for sure when there’s more than a couple of shows to point to.”

Zayid isn’t so sure. “I don’t think it’s a watershed moment,” she says. “The majority of people with disabilities I know are not employed, can’t get auditions, don’t have the experience to get in a writer’s room because no one will give them a chance, and we still have non-disabled actors playing disabled parts. There is so much more to be done.”

Parents Buy A Pub For Disabled Son, 12

May 28, 2019

In a week where a tweet about a London pub went viral after a member of staff told a customer “we don’t serve disabled people”, meet the Mathies.

Ben Mathie loves live music but venue options are limited because he’s only 12-years-old and uses a wheelchair and venues are often inaccessible.

He was a regular at gigs in the local pub, The Harrow Inn Freehouse in Bootle, Nottinghamshire, before plans were made to shut it down.

Then, in an unexpected move to save Ben’s favourite venue, his mum and dad gave up their farm shop and took over the pub.

Ben now has the important role of Events Manager and books all the live acts at the pub to ensure it’s as inclusive and welcoming as possible.

BREAKING: Whorlton Hall: Ten Workers Arrested

May 24, 2019

Ten workers have been arrested over the alleged abuse of patients at Whorlton Hall hospital following a BBC Panorama investigation

Seven men and three women were arrested at addresses in Barnard Castle, Bishop Auckland, Darlington and Stockton.

Undercover filming showed adults with learning disabilities and autism being mocked, intimidated and restrained.

The site had at least 100 visits by official agencies in the year before the abuse was discovered.

Whorlton Hall: A Poetic Review

May 24, 2019

When there was one Winterbourne View

The world cried and swore there would never be two.

Then there was one Whorlton Hall

The similarities shocked us all.

 

Staff swearing and smoking

And laughing and joking

Video clips making loving parents cry

As journalists- onscreen and off- watched, yet helplessly stood by.

 

A young woman named Alex, reminds me of me

She prefers female carers, you see

She’s scared of men, so what did one do?

Laughed in her face, threatened to bring more too.

 

Alex has autism

I have CP

Yet I could have been Alex

And she could have been me.

 

When there was one Winterbourne View

The world cried and swore there would never be two.

Now Whorlton Hall’s closed too, this I am glad to see

But this time I ask, how long before there are three?

 

 

 

 

 

 

Whorlton Hall: Hospital Abuse Missed Despite At Least 100 Official Visits

May 24, 2019

Whorlton Hall hospital had at least 100 visits by official agencies in the year before abuse of inpatients there was discovered, the BBC has learned.

Inspectors, council officials and NHS staff all visited the County Durham unit – sometimes in teams of two or three over the course of several days.

But the scale of mistreatment of people there with learning disabilities and autism was not spotted.

Campaigners said the authorities had failed in their jobs.

Undercover filming by the BBC’s Panorama programme – aired on Wednesday – showed patients at the 17-bed unit being mocked, taunted, intimidated and repeatedly restrained.

The footage also included shocking scenes where some staff can be heard using offensive language to describe patients, while another calls the hospital a “house of mongs”.

A police investigation has been launched and 16 staff suspended.

The Care Quality Commission (CQC), which regulates the sector, went in three times – in March, April and July of last year. One of the visits lasted two days and involved a team of three after concerns were raised by a whistle-blower.

The inspection found breaches of regulations in relation to staffing and good governance, but the hospital kept its good rating.

CQC deputy chief inspector Dr Paul Lelliott said it was “now clear we missed what was going on”.

He said the regulator was sorry. He said inspectors spoke to staff and patients as well as independent people familiar with the hospital. But no concerns were raised.

“This illustrates how difficult it is to get under the skin of this type of ‘closed culture’,” he added.

On top of the CQC visit, there were multiple visits by 10 different councils and local NHS bodies.

Durham Council visited the hospital 33 times over the past year – 12 because of safeguarding concerns – with the rest largely related to the placement of new patients at the 17-bed unit.

The council’s corporate director of adult and health service, Jane Robinson, said: “We found no evidence suggesting issues of the nature shown in the programme.”

Richard Kramer, chief executive of disability charity Sense, criticised the approach taken by authorities.

He said agencies were maybe too likely to take the word of staff at “face value”, rather than insist on observations and on seeing the person.

“This appears to be a case of professionals not investing time and resources to fully review the care and support,” he added.

Earlier on Thursday, Care Minister Caroline Dinenage told the House of Commons she was “deeply sorry that this has happened”.

Ms Dinenage said that after the government and the Care Quality Commission were told of the allegations of abuse at Whorlton Hall, “immediate steps” were taken to ensure the safety of the patients there.

And she questions needed to be asked over whether the activity at Whorlton Hall was criminal, if the regulatory and inspection framework is working and also over the commissioning of care services.

The unit has now been closed and all the patients moved to other services.

Watch BBC Panorama: Undercover Abuse Scandal on BBC iPlayer.

 

Whorlton Hall: Minister ‘Deeply Sorry’ For Hospital Abuse

May 24, 2019

The abuse uncovered by the BBC at specialist hospital Whorlton Hall has been condemned as “appalling” by a government minister.

Care minister Caroline Dinenage told the House of Commons she was “deeply sorry that this has happened”.

Undercover BBC Panorama filming showed adults with learning disabilities and autism being mocked, intimidated and restrained.

A police investigation has been launched and 16 staff suspended.

BBC Panorama aired the footage of its investigation into the privately-run, NHS-funded hospital in County Durham on Wednesday.

It was the result of two months of secret filming by undercover reporter Olivia Davies. Her footage included shocking scenes where some staff can be heard using offensive language to describe patients, while another calls the hospital a “house of mongs”.

Part of the abuse was described as “psychological torture” by experts.

On Thursday, Ms Dinenage – a minister at the Department of Health and Social Care – made a statement to MPs and called the footage “disturbing”.

“The actions revealed by this programme are quite simply appalling, there is no other word to describe it,” she said.

“I absolutely condemn any abuse of this kind, completely and utterly.”

She added: “On behalf of the health and care system, I am deeply sorry that this has happened.

“One thing we can all agree on… what was shown last night was not care, nor was it in anyway caring.”

Ms Dinenage said after the government and the Care Quality Commission were told of the allegations of abuse at Whorlton Hall, “immediate steps” were taken to ensure the safety of the patients there.

And she listed three questions that needed to be asked: whether the activity at Whorlton Hall was criminal; whether the regulatory and inspection framework is working; and also over the commissioning of care services.

BBC health correspondent Nick Triggle said one of the questions being asked today is why it took a BBC Panorama programme to expose this, and why the authorities did not spot what was happening.

“The Care Quality Commission had been in three times in the 12 months prior to Panorama going in and they didn’t spot the serious problems that were happening,” he said.

Dr Paul Lelliott, from the CQC, previously told Panorama: “On this occasion it is quite clear that we did not pick up the abuse that was happening at Whorlton Hall. All I can do is apologise deeply to the people concerned.”

Speaking to MPs, Ms Dinenage added: “There are also a range of questions more broadly about whether these types of institutions and these type of inpatient settings are ever an appropriate place to keep the vulnerable for any extended length of time.

“Where it is essential that somebody has to be supported at distance from their home, we will make sure that those arrangements are supervised.

“We won’t tolerate having people out of sight and out of mind. Where someone with a learning disability or an autistic person has to be an inpatient out of area, they will be now visited every six weeks if they are a child or every eight weeks if they are an adult.”

BBC Panorama’s investigation comes eight years after the programme exposed the scandal of abuse at Winterbourne View, another specialist hospital, near Bristol.

Winterbourne View was shut down and the government committed to closing other specialist hospitals too, saying care should be provided in the community.

Bed numbers have been reduced – from 3,400 to below 2,300 since 2012 in England – but that falls short of the government’s target to get the figure down to below 1,700 by March this year.

Cygnet, the firm which runs the unit, said it was “shocked and deeply saddened”.

The company only took over the running of the centre at the turn of the year and said it was “co-operating fully” with the police investigation.

All the patients have been transferred to other services and the hospital closed down, Cygnet said.

The Department for Health and Social Care said it treated allegations of abuse with the “utmost seriousness”, but could not comment any further because of the police investigation.

Watch BBC Panorama: Undercover Abuse Scandal on BBC iPlayer.

How To Make Pride Accessible

May 24, 2019
Held every June to honor the legacy of the LGBTQ movement and the event that started it all, the 1969 Stonewall riots, Pride is a season to celebrate resilience, resistance and the vast spectrum of sexual and gender diversity.
However, Pride events, which often consist of parties at gay bars and a big parade, remain incredibly inaccessible to disabled, deaf or hard-of-hearing, blind, neurodiverse (neurologically atypical, including those on the autism spectrum) and people with intellectual or developmental disabilities, and little has been done to make them more inclusive.
From the length of parade routes, to uneven grounds, summertime temperatures, crowds and the lack of disabled seating areas, interpreters and wheelchairs, it’s almost like Pride parades were made to keep disabled people out.
Parties are no better, with many hosted in inaccessible gay bars that don’t have ramps, elevators, interpreters or staff who are versed in the rights of disabled patrons. For these reasons, many disabled members of the LGBTQ community are forced to sit out Pride month because too often, we literally can’t even get in through the front door.
“Accessibility is often an afterthought, if even a thought at all,” Annie Segarra, a queer Latinx YouTuber with Ehlers-Danlos syndrome, a connective tissue disorder, told me over email.
While accessibility isn’t binary and what is accessible to one disabled person can mean something completely different to the next, the good news is that making spaces and events as accessible as possible is pretty easy, and it’s 2019, so there really shouldn’t be any excuses, especially since it is the law in the United States and many other countries.

“You just have to remember we want to be in community too,” queer writer Shivani Seth, who has PTSD and sensory sensitivities, explains.
And she’s one of many who share a similar mindset.
“The very nature of Pride events, particularly parades, makes them pretty inaccessible,” Alaina Leary, the editor of Equally Wed magazine, who lives with Ehlers-Danlos syndrome, says.
Most parade routes rarely, if ever change, meaning that one section of the respective location is overflowing with attendees, law enforcement and tourists, making busy city centers obstacle zones for disabled people the day of the parade.
Bri M., the executive producer of the Power Not Pity podcast, which focuses on the lives of people of color with disabilities, described New York City’s landmark Pride parade as “torturous and wildly unsafe” because of the crowds.
“I’ve heard of disabled people getting knocked down, stepped over, [or] had people lean on their wheelchairs,” Dominick Evans, a trans-masculine hard of hearing filmmaker with Spinal Muscular Atrophy elaborated over email. “People will just stand in your way and you will be stuck. It’s a real lack of body autonomy and a whole lot of rudeness,” he added.
Pride performances that take place on one or several stages are very much the heart of the season, where drag queens, singers and dancers get to do their thing, but unfortunately, most parades don’t even have disability seating areas, and the ones that do may not have accessible stages, sending a message that disabled talent and speakers aren’t welcome.
Seating and rest areas also need to be bigger and located near exits and stages; there should be more than one. They need to be shaded or have a cooling system; they need to have interpreters; they should offer donor wheelchairs and scooters, and there shouldn’t be anything blocking their range of vision.
Seth recommends a simple solution: bleachers. Add some lifts and fans and it would be a perfect area, especially for solo Pride participants to relax and meet each other.
It’s a good idea, and not just for disabled people, to host Pride parades in differing locations, so that not everyone has to commute to one part of town every year, and to concentrate them in smaller towns or neighborhoods with more space.
How about we forget about parades for a minute and organize more Pride picnics, or block parties, brunches, hikes, bike rides, film festivals and more? Can we just have a Pride stroll, emphasis on “roll”?
I doubt anyone at the Stonewall uprising wanted us to trudge through the city for miles on a hot summer day to honor their legacies, but as long as they continue, parade organizers should provide temporary wheelchairs and scooters as well as shuttles to seating areas.
It’s actually pretty common for a lot of LGBTQ pride-goers to skip the parade because Pride parties are where it’s at, but they present a whole host of other impediments for disabled guests.
Every employee at this newly opened coffee shop is fluent in American Sign Language in order to better serve the large deaf community in Washington, DC.
Besides the obvious ADA accessible entrances and bathrooms that too many bars lack, there’s also strobe lights and loud music, which can be very distressing for people on the autistic spectrum, who have seizures or other sensory issues.
Videos are shown that don’t feature captions or speakers will address the crowd without the aid of sign language interpreters.
“My favorite local gay bar has two floors but no elevator,” Segarra, who is a semi-ambulatory wheelchair user, told me. “For me, climbing up a staircase can be as risky and painful as climbing a mountain barefoot,” she said.
Almost all the disabled people I spoke with described the loneliness they felt after pushing their limits and still leaving Pride events in pain and isolation. “I’ve shown up a couple of times to make comment,” Segarra added, “[but] nothing has changed in the past five years.”
The great thing about non-parade Pride events is that they can grant more leeway in how they’re organized, as Pride boards can be insular and difficult to get into if you’re not a business owner or a politician.
If the venue you’re renting doesn’t have ADA-accessible bathrooms, then rent portable toilets or ramps for entrances. If you’re going to have flashing lights and loud noises in most of the space, keep at least one quiet, scent-free room for people to escape to.
Most importantly, hire disabled people. We should be on Pride boards and organizing committees and event teams. You can hire disability consultants or delegate entire access teams with both disabled people and allies in them to make sure everyone feels safe and welcomed, and you can always consult this checklist.
The good news is, more and more people are getting the message.
WorldPride’s centerpiece event, the march, has accessible seating that’s already available to book online well in advance, and other events are mentioning inclusivity up front as well.
Above all, don’t wait for disabled people to say something online or elsewhere to make accommodations just for them and just for that day—accessibility should be practiced always and everywhere, and especially at Pride. As Dominick Evans put it, “We are here, so make space for us.” It’s that simple.
Even if you’re not an organizer, there’s so much non-disabled people can do to make Pride more welcoming and inclusive to us. “I would highly recommend abled Pride participants to be engaged in the conversation about accessibility with disabled people,” Segarra says.
Follow the #SuckItAbleism or #AbledsAreWeird hashtags on social media to see what we’re talking about, then follow some organizations and disabled accounts on there to stay in the know. “Learn what to look for in regards to access, learn what inaccessibility looks like, and be vocal when you are witness to it,” Segarra adds.
Some basic crowd etiquette like not blocking or shoving people and watching where you’re going would also go a long way, too.
For disabled, blind, deaf/hard-of-hearing, neurodiverse and intellectually disabled people, we already face enormous obstacles in using public space, navigating the medical health systemche and with outright discrimination.
For the LGBT among that group, living with multiple marginalizations can make every day feel like work. Pride can be a time that reminds us that there is nothing shameful about who we are or how our bodies function or appear to others, but for too many of us, it is yet another reminder of how we are left behind.
“Pride started off as a riot led by trans women of color,” Bri M. told me. “Let’s take that same revolutionary spirit and make pride more accessible.” When you venture out this Pride season to celebrate another year of being queer, remember to be intentional about prioritizing accessibility for all.
“Disability justice happens when we all move together,” Bri M. added.

Victoria Derbyshire- 23.5.19

May 23, 2019

Today, the wonderful Victoria Derbyshire devoted the best part of 50 minutes of her hour long programme to disability issues.

She discussed:

  • Mental health hospitals, learning disabilities and autism
  • Living with a visible difference
  • Attacks on guide dogs

We are linking to the programme on Iplayer and highly recommend that you watch any part of it that you find relevant or interesting.

European Elections: What Access At Polling Stations?

May 23, 2019

It may not have escaped your notice that it’s polling day tomorrow for the European Parliamentary elections, and you might have plans to venture out and cast your vote.

But what kind of accessibility can you expect when you arrive, to fill in the ballot paper and place your vote?

According to the Electoral Commission, each polling station should:

  • Provide clear signage to the main entrance and an accessible entrance, if they are separate
  • If the Returning Officer provided information about the election in Braille or pictorial formats, these should be displayed, as should a large-print version of the ballot paper
  • Pace the ballot box on a chair, rather than a table, so everyone can reach it
  • Provide a low-level polling booth
  • Place a white strip around the slot of the ballot box to highlight its opening
  • Provide a tactile voting device (TVD) to enable someone who is visually impaired to mark the ballot paper themselves once details on the ballot paper have been read out
  • Provide chairs for anyone who needs a rest

If you have a vague recollection about a recent High Court ruling making the use of the aforementioned tactile voting templates (TVD) “unlawful”, you haven’t been imagining things.

TVD’s are plastic sheets that fit over ballot papers and guide visually impaired constituents where to put the cross – but it doesn’t provide information about candidates so someone has to read that information out. Some people have reported the device isn’t always placed over the ballot paper accurately so they have to check with someone they’ve put the cross in the right place, making the process less than secret.

Mr Justice Swift made the ruling earlier this month but did not remove the legal requirement for TVD’s to be provided at elections.

Their use is prescribed in law so the UK Government will now have to consider how it moves forward.

UK To Bring In Controls On Plastic Straws And Cotton Buds Next Year

May 23, 2019

In a bid to limit ocean pollution, the UK government will introduce new controls on single use plastic items next year.

The measures cover plastic straws, plastic drinks stirrers and plastic cotton buds in England from April 2020.

Only plastic drinks stirrers will be totally banned from sale – currently 316 million are used a year.

Environmental groups have praised the move but say the government needs to take far more decisive action.

How will plastic straws be affected?

The government press release announcing the new restrictions talks of “a ban on the supply of plastic straws” but in reality the aim is instead to restrict their availability.

Shops including supermarkets will not be allowed to sell the straws but they will on sale by registered pharmacies in stores and online.

That’s because disabled groups have highlighted how straws are essential for everyday life and that a total ban could lead to the risk of dehydration.

According to the announcement, bars and restaurants will not be allowed to display plastic straws or automatically hand them out but they will be able to provide them if people ask.

When asked who could request a straw, a spokesperson for the environment ministry Defra said: “Anyone can ask for a straw and be given one without needing to prove a disability – we’ve been working with disabled groups so that they don’t feel stigmatised.”

What else is covered by the new controls?

Plastic stirrers will be subject to a total ban.

However plastic-stemmed cotton buds, although restricted from general sale to the public, will still be available.

Medical and scientific laboratories will be able to buy them for use in research and for forensic tasks in criminal investigations.

Defra reckons 1.8bn plastic-stemmed cotton buds are used and thrown away every year in England.

Haven’t we heard this before?

The government has been considering action on single-use plastic items since the public reaction to David Attenborough’s landmark Blue Planet II documentaries nearly two years ago.

At the time, Environment Secretary Michael Gove described being haunted by the image of marine life harmed by plastic and launched consultations on a series of measures to curb single-use items.

As part of today’s announcement that controls would come into effect next April, Mr Gove said: “These items are often used for just a few minutes but take hundreds of years to break down, ending up in our seas and oceans and harming precious marine life.

“So today I am taking action to turn the tide on plastic pollution, and ensure we leave our environment in a better state for future generations.”

This comes as Scotland is also taking steps to restrict or ban plastic straws, and plastic-stemmed cotton buds.

The Welsh government has also been considering similar measures.

Earlier this week the European Union formally adopted a plan to ban a longer list of items including plastic straws, plastic cutlery and plastic plates by 2021.

Green groups say they are pleased that the government is taking action but many are critical that the measures do not go further.

WWF called for a ban on all “avoidable single-use plastic” by 2025 and said ministers needed “to really ramp up their commitments”.

The Marine Conservation Society, which said it found on average 17 cotton buds for every 100m of beach in England, said Mr Gove needed to do more to reduce plastic consumption and increase recycling rates.

The Campaign to Protect Rural England (CPRE) said Mr Gove should phase out single-use items altogether and warned that replacements made with alternative materials might still be harmful.

The move comes as many takeaway restaurants are already introducing biodegradable alternatives.

BREAKING: Abuse Of Vulnerable Adults Uncovered At Whorlton Hall Hospital

May 22, 2019

The abuse and mistreatment of vulnerable adults at a specialist hospital has been uncovered by the BBC’s Panorama programme.

Undercover BBC filming shows staff intimidating, mocking and restraining patients with learning disabilities and autism at Whorlton Hall, County Durham.

Experts said the culture was “deviant” at the privately-run NHS unit with evidence of “psychological torture”.

A police investigation has been launched and 16 staff suspended.

The 17-bed hospital is one of scores of such units in England that provide care for just below 2,300 adults with learning disabilities and autism.

Many are detained under the Mental Health Act.

Glynis Murphy, professor of clinical psychology and disability at Kent University’s Tizard Centre, said much of what Panorama had found was the “absolute antithesis” of good care.

“It is obviously a very deviant culture.”

Cygnet, the firm which runs the unit, said it was “shocked and deeply saddened”.

The company only took over the running of the centre last year and said it was “co-operating fully” with the police investigation.

The patients are being transferred to other services, Cygnet said.

Swearing and mental torture – what has been uncovered

Image caption Staff were filmed using abusive language about patients

The BBC reporter, Olivia Davies, worked shifts for two months undercover between December and February.

She filmed a number of shocking scenes where staff can be heard using offensive language to describe patients, while another calls the hospital a “house of mongs”.

In another case, a patient is told by her care worker that her family are “poison”.

Two male staff members single out a female patient for particular abuse.

Aware that she is scared of men, they tell her, in an effort to keep her quiet, that her room will be inundated with men.

They call this “pressing the man button”, something which causes her great distress.

This was described a psychological torture by Prof Murphy.

What about violence?

There was certainly the threat of violence. On one occasion, a male care worker threatens to “deck” a patient, while another patient is told they will be “put through the floor”.

Six care workers also told the undercover reporter that they have deliberately hurt patients – including one who describes banging a patient’s head against the floor, and another who speaks about flooring a patient with an outstretched arm, something he called “clotheslining”.

The reporter did witness a number of incidents of physical restraint, which should only be used to prevent a patient harming themselves or others.

In one episode of restraint, a patient was held on the ground for nearly 10 minutes with one member of staff restraining him, while handing out chewing gum to colleagues.

Prof Andrew McDonnell, an expert in autism at Birmingham City University, who develops training to reduce the use of restraint, said it was a “cruel punishment”.

“Restraint should be momentary. It should be short. It should be with as few staff as possible, without an audience.”

What about regulation?

Services for people with learning disabilities are regulated by the Care Quality Commission (CQC).

The CQC gave Whorlton Hall a good rating after inspecting it in 2017.

It said that since then, it had warned the hospital about staff training, long hours and excessive use of agency staff.

Dr Paul Lelliott, deputy chief inspector of hospitals at the CQC, told Panorama: “On this occasion it is quite clear that we did not pick up the abuse that was happening at Whorlton Hall.

“All I can do is apologise deeply to the people concerned.”

The Department for Health and Social Care said it treated allegations of abuse with the “utmost seriousness”, but could not comment any further because of the police investigation.

Not the first scandal

The Panorama findings come eight years after abuse was uncovered at another hospital for people with learning disabilities, Winterbourne View, near Bristol.

After that programme, the then prime minister, David Cameron, promised the mistreatment of patients would never happen again.

Winterbourne View was shut down and the government committed to closing other specialist hospitals too, saying care should be provided in the community.

Bed numbers have been reduced – from 3,400 to below 2,300 since 2012 in England – but that falls short of the government’s target to get it down to below 1,700 by March this year.

The official investigation in the Winterbourne View case also made warnings about the excessive use of restraint.

But figures show “restrictive practices” have become more common – the use of seclusion and restraint has nearly doubled in the past two years, according to figures obtained under the Freedom of Information Act by Panorama.

Health Secretary Matt Hancock ordered an investigation into the cases last year and an interim report published by the Care Quality Commission this week described the system as “broken” and said people who ended up in hospital were being failed.

The sector has also come under fire for some of the deaths that have occurred.

The most high-profile case of recent years was Connor Sparrowhawk, who had learning disabilities and epilepsy, and died when he had a seizure alone in a bath at an NHS unit in Oxford in 2013.

Southern Health NHS Foundation Trust admitted breaching health and safety law and was fined £2m for the deaths of Mr Sparrowhawk and another patient, 45-year-old Teresa Colvin, who died in Hampshire in 2012.

The deaths of people with learning disabilities are now routinely monitored.

The latest report, also published this week, found that there were concerns about care provided in more than one in 10 cases.

Jonathan Beebee, of the Royal College of Nursing, said Panorama had shined a light on a “dark corner” of the sector.

He said the scale of what had been found would not be happening everywhere, but he still had concerns about the state of services.

“The sector is plagued by high vacancy rates and a lack of properly trained staff. There will be problems elsewhere.”

 

DWP Pays Compensation For Misadvised UC Claims And Would “Welcome” More

May 22, 2019

With many thanks to Benefits And Work.

The DWP have paid compensation to five claimants who have complained that they were wrongly advised by the department to claim universal credit (UC) and lost out as a result. The DWP say that they would welcome complaints from others who have been affected.

Universal Credit Director General Neil Couling told MPs in the Work and Pensions Committee this month that they have looked at 26 cases since April 2018 which may have involved claimants being wrongly advised by the DWP. In five of these cases they have paid compensation.

“For example, a claimant wanted to claim effectively contributory employment support allowance. They were wrongly advised to claim Universal Credit because the person on the end said, “There is no employment support allowance anymore.” There is contributory employment support allowance, so it was a mistake. The claimant claimed UC and lost their tax credits and is £63.84 a week worse off as a consequence. We are topping that amount back up to them every week as compensation because of our mistake in directing them to claim Universal Credit.

It is cases like that, where the claimant has complained to us and said, “Look, I am worse off. All I wanted was contributory employment support allowance.” We made a mistake so we stepped in and compensated them. I found five cases like that by looking at our records.”

Alok Sharma MP, Minister of State for Employment, was then asked by Steve McCabe MP:

“Anyone who is watching this and listening to it who thinks they have been misadvised or a victim of maladministration, who are not in the 26 that you referred to, you would welcome them making a complaint?”

Alok Sharma replied: “Yes, absolutely.”

You can read the Work and Pensions Committee oral evidence here (from Q212 onwards)

Future Claimants Could Face ‘Gruelling’ Journeys To Appeal Tribunals

May 22, 2019

With many thanks to Benefits And Work.

Future claimants could face “gruelling journeys” to attend appeal hearings, the Public and Commercial Services (PCS) union argued last week, following the release of reform plans by HM Courts and Tribunals Service (HMCTS).

Under the new plans, a “reasonable journey” is one that allows a court or tribunal user to leave home no earlier than 7.30am, attend their hearing, and return home by 7.30pm the same day, including by public transport where necessary.

Thee PCS has strongly condemned the proposed 12 hour day claiming that:

“Court users and staff face gruelling journeys which we believe are unreasonable for the overwhelming majority of people who attend court.”

“We believe efficiency is a euphemism for cuts to a public service which we maintain is already creaking under unrelenting pressure and chronic underfunding and is largely reliant on the goodwill and professionalism of our members.”

The union believes that HMCTS has rushed out its report before the parliamentary justice committee can complete its investigations into changes to courts and tribunals.

“We believe that the timing of this announcement is extremely cynical and that HMCTS should not have made any decision, let alone announce it, before the select committee has published its report on HMCTS and its recommendations addressed. We also have grave doubts HMTCS will honour its commitment not to propose court closures unless they have sound evidence that the reforms are actually reducing the use of those buildings.

“This is also the case for its commitment to fully consult on future plans as previous consultations have been based on fundamentally flawed utilisation figures and HMCTS has closed courts against overwhelming public opposition.”

PCS has given evidence to the justice committee that far from improving access to justice, “so-called modern ways of working” are “are slowing down and threatening the quality of justice and service that is delivered.”

HMCTS claim that they will take into account the needs of vulnerable users and consider providing local video links in some circumstances.

You can download a copy of the HMCTS document Fit for the Future: transforming the court and tribunal estate from this page

Amber Rudd Finally Responds To Death Of Stephen Smith

May 21, 2019

Benefits secretary Amber Rudd has finally acknowledged the death of six-stone Liverpool man Stephen Smith – who died after being repeatedly and wrongly denied vital support by her department.

Mr Smith died last month following a gruelling battle with the Department of Work and Pensions (DWP) – who repeatedly denied him benefits despite numerous doctors warning of his dramatically failing health.

In the end, 64-year-old Mr Smith – who weighed just six stone at the time – had to get a pass out of hospital to allow him to fight the DWP at a tribunal and finally win back the benefits he had been denied.

After his story was made public, the DWP also agreed to pay him back around £4,000 in backpay that he should never had been denied.

Sadly, this money arrived too late for Mr Smith – and was instead used to pay for his funeral.

The ECHO has been following his story for some time – and we have been repeatedly asking for Ms Rudd to respond to how he was treated following his tragic death.

So far, we have only been sent generic responses from a DWP spokesperson.

But Birkenhead MP Frank Field has also taken up the case, alongside the ECHO.

Mr Field is the chair of the Work and Pensions Committee – and has written to Ms Rudd asking for a full inquiry into Mr Smith’s case.

And in a response received today – it looks like that is now underway.

Ms Rudd writes: “This is a grave and tragic case. I speak on behalf of the Department when I say that we are very sorry to hear of the experience Mr Smith had and that our thoughts continue to be with his friends and family.

“You asked for an official inquiry into this matter. I can advise you that an urgent Internal Process Review has been commissioned on Mr Smith’s case, which will be complete by the end of May.”

Ms Rudd explains that Internal Process Reviews ‘enable full and open scrutiny of cases internally’ and that a ‘factual sequence of events will be put together for Mr Smith’s case and will be provided to a panel of subject experts within the Department.’

However, despite Mr Field’s call for a public inquiry it appears that Mr Smith’s case will only be reviewed within the DWP.

The Secretary of State’s letter continues: “This will be objectively reviewed against the customer journey and what should have happened – including safeguarding processes.

“This will help us to understand what happened, with recommendations for improvements and changes to be shared with the Permanent Secretary following this review.”

Ms Rudd said she recognises the ‘gravity of this case’ and will consider any further steps necessary following the outcome of the review – and will notify Mr Field.

She concludes by saying that Mr Smith’s case has her ‘personal attention’ and that ‘if there is a need to take further action, it will be taken.’

 

Game Of Thrones Was A Big Win For Portrayal Of Little People

May 21, 2019

When was the last time America’s most talked-about pop culture epic had a 4-foot-4-inch hero?

Precisely never. Which is why “Game of Thrones,” which ended its sensational eight-year run Sunday, was a watershed — for all of us, certainly, but particularly for the population that (mostly) prefers to be known as little people.

“It really helps people in the dwarf community in a positive way,” says Tony Soares, former Hoboken, New Jersey, city council president, who has worked in advertising and real estate.

“I was just listening to people down the hall in the office, the other day, talking about Tyrion Lannister, and they were talking about how great he is,” Soares says. “And there was never a discussion about Peter Dinklage as a dwarf.”

Tyrion Lannister, played by Dinklage in a role that has made him an international star, was arguably the show’s hero, its brains, and its moral compass. In a series with more than 50 major roles, he was more or less the central character. In the opening credits, Dinklage is the first name listed. Ask most people who their favorite “GoT” character is, they’ll tell you Tyrion.

“We’re all rooting for that character,” says Mark Povinelli, president of Little People of America, a 62-year-old organization based in California. “I think everyone is. But we have a vested interest.”

Dinklage, and his character, have been a game-changer for the entertainment industry’s depiction of dwarfism, and the opportunities it may open for actors of small stature.

Dinklage, the actor named People magazine’s “sexiest man alive,” subject of Esquire and GQ cover stories, is a new kind of small-statured star, unlike the Hervé Villechaizes and Verne Troyers of years past. Having made his bones in films like “Living in Oblivion” (1995) and “The Station Agent” (2003), he shot to the stratosphere in “Game of Thrones,” beginning in 2011, for which he won three Emmys and the world’s affection.

Here was a little person who was not a sidekick, not a jester, not pathetic or grotesque or a novelty. Tyrion is a character of great dignity, played by an actor of great dignity.

“Someone said to me, they knew this was really different when they saw average-size kids dressing up as Tyrion for Halloween,” says Cara Egan, a heath insurance administrator from Collingswood, New Jersey.

In “Game of Thrones,” Tyrion’s size is mostly beside the point. Though occasionally, he talks about his difficulties making his way in the world, and the audience comes to realize that his brains — and his basic decency — are partly a byproduct of the way people have treated him. For small-statured viewers, starved of anyone in movies or TV to identify with, he was a revelation.

“I was always watching the show, following the story line, waiting for what (Tyrion) is going to say this week that’s going to blow my mind,” Egan says. “When he’s saying look, it’s hard for me to be a dwarf, and these are the things I have to do, he’s not asking for pity. He’s saying, Look at what I have done, and recognize me and recognize the work I’ve put into this. That’s like every dwarf I know. That’s what we want. We want to be recognized for our work, our talents, our personality. We don’t want to be noticed for our size.”

Not a stellar record

Hollywood, and TV’s, record of dealing with little people is not much more distinguished than its record with African-Americans, Latinos, Asians, gay people, and all the other “others.”

At best, they could be whimsical fantasy characters, like the Munchkins in “The Wizard of Oz,” or the Oompa-Loompas of “Willy Wonka and the Chocolate Factory.”

Otherwise, they might be a kind of dirty joke, like the characters Billy Barty — probably Hollywood’s first dwarf star — played in the 1930s. If a bunch of chorus girls, in a crazy production number, were costumed in metal gowns and halter tops, Barty was the leering little guy with the can opener.

At worst, little people were treated almost literally like sideshow attractions — as they were in 1938’s “The Terror of Tiny Town,” billed as an “all-midget” Western (“midget” is considered an offensive term).

“It’s so rare to see someone with dwarfism as having a fully dimensional character,” says Povinelli, himself a stage, screen and TV actor (“Water for Elephants,” “Mirror Mirror,” “Boardwalk Empire”).

“So often, in the entertainment industry, we are painted — as well as many people with disabilities — in two ways,” Povinelli says. “One is disability porn — where we’re some helpless creature that some average-height person needs to save. Or we’re some villain, mad about their height and can’t get over it, and therefore lashes out at everyone. There’s very little middle ground.”

Actors like Barty, back in the 1930s, ’40s and ’50s, had to play the hand they were dealt. He eventually got to prove his mettle as an actor,  playing non-stereotyped characters in films like 1975’s “Day of the Locust.”  But meanwhile, Barty parlayed his notoriety into something worthwhile, when he used his fame and clout in 1957 to create Little People of America, an organization that works to improve the lives of little people through education, advocacy, and social support. It now has 8,000 members nationwide.

“He took his fame, whatever way he cultivated it — whether you find it, in this era, a little less than idea — and used it to connect to little people all over the country, and change their lives,” Povinelli says.

Now Dinklage has taken another great leap forward, and little people — just like viewers everywhere — are thrilled. The only downside, says Povinelli: passers-by keep mistaking him, and every other small person, for Dinklage.

“There’s only one of us, apparently, because we all get mistaken for Peter Dinklage,” he says.

This has, in fact, happened repeatedly to Soares when he’s gone to Hollywood as part of his advertising work. Playwright David Mamet mistook him for Dinklage. So, he says, did Jill St. John and husband Robert Wagner. “Jill and I think you’re fabulous,” Wagner said. When Soares introduced himself and pointed out their mistake, she said, ‘Tony, we think you’re fabulous anyway.’ It was pretty funny.”

Actually, that’s a bit of a step up, Soares says.

“Many of us used to be confused with Verne Troyer,” he says. “Now, when people think I’m Peter Dinklage, I’m not offended. If you’re an average-sized man and people think you’re Bradley Cooper, you’re not going to get upset. If they think you’re John Candy, that’s a different story.”

UKIP Candidate Calls Greta Thunberg ‘Asperger’s Girl’

May 21, 2019

Paula Garfield Wants Deaf Role Models In Theatre

May 21, 2019

Inspiration hit while theatre director Paula Garfield was reading bedtime stories with her two profoundly deaf daughters. As always, the family’s reading experience was a bilingual process, and a mixture of both written English and British Sign Language. But how much did Garfield’s daughters know about the history of BSL, and what role models (other than their award-winning deaf mother) might they have to look up to? Could there be a show to explore these ideas, she wondered. Perhaps a series of books she and her daughters loved – Terry Deary’s Horrible Histories – might hold the answer.

Five years on, and Garfield is deep into rehearsals for Horrible Histories: Dreadful Deaf, a co-production between Garfield’s deaf-led company Deafinitely Theatre and Birmingham Stage Company. It’s a family show for children and adults, both deaf and hearing, and will feature comedy cameos from a range of famous deaf figures including the painter Quintus Pedius and the so-called “father of the deaf”, Abbé Charles-Michel de l’Épée, who established the first deaf school in Paris in 1755.

These famous deaf individuals, says Garfield, are rarely mentioned in mainstream society and Dreadful Deaf is partly about celebrating their achievements. But it’s also about helping deaf children – 90% of whom are born to hearing parents – to embrace deaf culture and begin to explore their history. Garfield explains: “It’s so important to me that deaf children understand something about where they come from, about having their own identity and about not being frightened or embarrassed about being deaf or using British Sign Language.”

When Garfield was growing up, hearing doctors and teachers argued against the use of BSL in the belief that it might harm literacy levels. It’s an argument that Garfield, eyes flaming, passionately counteracts: “There’s no evidence whatsoever that shows that the acquisition of BSL interferes with the acquisition of spoken languages. In fact, the evidence shows that it helps.” Garfield’s family still feels the impact of this professional advice today: “My mother continually brings this up with me. She says; I wish I’d never listened to those people. I wish I’d learned to sign so that I could talk to you properly.”

With this in mind, Garfield has created Dreadful Deaf just as much for hearing parents as for their deaf children. It’s a chance for parents and children to experience a BSL-led show together, and for parents in particular (who Garfield explains are often “terrified” when they discover their child is deaf) to see deaf actors happily go about their business, utterly at home in the spotlight.

This idea of creating a shared family experience – and perhaps helping to change attitudes towards BSL in the process – also informs DH Ensemble’s new show, Mathilda and the Orange Balloon. Written by Jess Kaufman, it’s an adaptation of Randall de Sève’s picture book about a curious grey sheep who dreams of a less sheepy existence and, when an orange balloon floats on to the farm, finds herself longing for a better, brighter way of life.

For director Jennifer K Bates, who learned sign language when she became frustrated that she couldn’t communicate with a deaf friend, raising awareness about BSL isn’t necessarily an explicit concern. However, just like all DH Ensemble productions, Mathilda and the Orange Balloon implicitly champions BSL. A hearing actor (Adam Jay-Price) and deaf actor (Mia Ward) narrate the show together, and deaf actor Hermon Berhane plays Mathilda, a sheep who refuses to limit her potential. At the end of the production, the children are invited to explore the farm on stage and express their feelings using “just their bodies”. I watch them sign together, instinctively creating their own rudimentary visual language.

After the show, Berhane (visibly worn out by an exceptionally interactive production) explains the motivation behind the show: “Deaf children need to have people to look up to. They need to think that anything is possible.” Berhane is also a fashion influencer and theatre has become a crucial part of her identity: “Six years ago, I went travelling and I sort of discovered myself. I thought: there’s something missing inside. And it was acting.”

It’s a sentiment echoed by Garfield, who tells me that theatre “saved her life”. “I started performing theatre at 18. I became alive because I could start to sign. I felt like I had something of value to contribute. I could tell stories, share my experiences, and connect with a hearing audience.” But when I ask Berhane about the training she has received as an actor she replies in BSL, one hand chopping down hard on the other. It’s the sign for barriers: “I’ve never had college or drama training because of barriers. I struggled to find a way through.”

There is just one drama course for the deaf in the UK – one that Bates helped initiate at the Royal Conservatoire of Scotland – and it is only open for admissions every three years. It isn’t enough. Garfield is agitating for change with Deafinitely Theatre Youth, the Hub (a training course for young deaf people who want to work behind the scenes), and has plans to create a Deafinitely Theatre drama school. But UK theatres also need to get involved, says Garfield: ‘They must be brave, take the risk and invite deaf directors into their theatres. The deaf community has a lot to offer the artistic community.’

When I speak to Berhane about the drama course at the Royal Conservatoire, she sounds frustrated by its isolated status but excited about the opportunities it might offer. Berhane speaks of the recent deaf graduates from the course, her eyes sparkling: “They’re out there flying. They’ve got their wings.” She makes the sign for flying and I watch her hands flutter up, up and away.

• Horrible Histories: Dreadful Deaf is at Bristol Old Vic, 29 May to 1 June. Then touring until 23 June. Mathilda and the Orange Balloon is at TouchBase Pears, Birmingham, on 25 May.

Sinead Burke’s Fight To Make Fashion More Diverse

May 21, 2019

 

 

One of the rumours that swirls around the disabled activist, advocate, educator, Vogue contributing editor and lifelong fashion-obsessive Sinéad Burke is that she has a complete Burberry wardrobe. Not a collection tailor-made for her, but clothes personally selected off the rack by Burke and then customised for her 3ft 5in (1.04 metre) frame. It turns out that the truth is even better than the gossip. “I’m very fortunate to have a wardrobe full of beautiful, well-made clothes,” she says. “Not just from Burberry, but Gucci, Prada, Ferragamo, Christopher Kane … As a teenager I’m not sure I could even have visualised it.”

As the eldest of five children, she grew up “envious of my sisters, who were average height. They had access to what I saw as the entirety of the fashion industry, even though they had far less interest than I did.” And now? “They look at my wardrobe and are like: ‘Would that fit me?’” She laughs.

We meet at the National Museum of Scotland in Edinburgh, where an exhibition to celebrate diversity in fashion – billed as the first of its kind – will feature two pieces from that hard-won wardrobe. First, a Burberry trenchcoat that the British fashion photographer Tim Walker cut to size for a shoot last year, whene she graced the cover of the industry magazine Business of Fashion. “He took these massive scissors and cut it around me,” Burke explains. “It was the most explicit demonstration of what I need as a little person and the relationship I have with the fashion industry … It wasn’t about hindering. It was about making something new.”

The second piece is by Kane, who like most designers – whether for clothes or chairs – had never designed for a little person. “We talked about proportions,” Burke says. Such as the fact that her condition, achondroplasia, the most common form of restricted growth, results in wider hips and curvature of the spine, which means hemlines ride up her back. “All you need to do is add two inches at the back, which looks uneven on a hanger but sits perfectly on me. How many other people with wider hips might benefit from an alteration like this,” she says.

The point Burke is making here, and in her 2017 TED talk – Why design should include everyone – the one that kickstarted her stratospheric rise, is that greater inclusion is good for everyone and that people from diverse backgrounds need to be present at every stage. This is what led to that Burberry wardrobe, a place on Vogue’s 2018 list of the 25 most powerful women working in Britain, an appointment to Ireland’s council of state, and an invitation to the Met Gala – where this year she became the first little person ever to attend the fashion fundraiser.

Today, she is wearing a navy jumpsuit (“River Island children’s department, age nine to 10, my mam picked it out for me … and the loafers are Gucci.”) The zip is, as usual, on the back. “I love jumpsuits, but functionally they are incredibly difficult. If I go to the bathroom, I have to make myself vulnerable in a public place because you have to almost expose yourself fully … that’s if I can reach the zip. And it’s not just because I’m a little person. Many people cannot get dresses on or off with independence. Clearly, they were designed by a person who did not wear them.”

She goes on to describe “the excruciating business” of using public lavatories, where locks, sinks, soap dispensers and hand dryers are all “out of my reach”. She talks about turning upended bins into precarious stools to reach locks or depending on the kindness of strangers to stand guard. The bathroom, of course, is only one example “where design impinges on my dignity”.

Burke is seated at the museum cafe when I arrive. We order lunch and she asks me to pass her water and cutlery, both of which have been placed just beyond her reach. She has just flown in from Ireland, where she lives with her parents in Navan, 50km outside Dublin. After our interview, a quick salon blowdry of her signature bob and a photoshoot, she will head to London where, over the past three months, she has been engaged in the pioneering work of making the world’s first mannequin of a little person out of her own body for the exhibition.

“It’s amazing how vulnerable you feel,” she admits. “I’ve never seen the physicality of my body manifested like that before. When I first saw my legs, I was like: ‘Is that really the size of my hips?’” She laughs, then gets serious. “That’s the power of representation. This is new for everyone. And now it exists.”

She has been obsessed with fashion for as long as she can remember. Growing up, she asked for the September issue of American Vogue for birthdays even though it was too heavy for her to lift.

Why was she drawn to an industry that neither represented her nor included her in its ludicrously narrow beauty standards? “It was because I felt left out,” she explains. “I understood that the fashion industry had power and that access to better clothes would alleviate some of the challenges I experienced. I use clothes like armour. If I’m walking down the street in a jumpsuit with caped sleeves and loafers, you probably won’t think I’m a lost child who needs help finding their parent. Despite it being seen as an exclusive industry, I see fashion as something that unites us.”

Her father, unlike her mother and siblings, is also a little person. In 1998, her parents founded Little People of Ireland, a national charity that offers support and education to little people and their families. “Growing up, that notion of visibility and representation was so innate to me, I didn’t even understand the value of it,” she says. “My disability was always explained as: ‘You’re just like your dad.’ That had power.” She did briefly consider a painful limb lengthening procedure before realising: “I was only getting it done to make people like me more easily.” Instead, aged 11, she turned to her parents and said: “If people don’t like me because I’m 3ft 5in, it’s not my problem.”

For most of her 20s, Burke was a primary school teacher. “Lots of people had concerns about how I would control the children,” she says. “That’s such a negative way to look at teaching. Even though the children were bigger than me, my attitude was that if I offered respect to them, I would receive it. And I did.”

Education remains her abiding passion. Recently, she was the victim of a hate crime in which a teenage boy leapfrogged over her on a Dublin street while another filmed it. Her response? To pen an opinion piece for Vogue in which she vowed she would speak to every primary school child in the region.

Has she done it yet? “Yeah! I’ve done them all,” she says. “We’re hoping to do the older schools next year.” Doesn’t she find constantly having to be the educator of her own life exhausting? “Absolutely,” she says. “If you are in any way diverse, there is a sense that it’s your responsibility to educate the majority. That’s not fair or true. I choose to do this, and I choose it for now.”

It was at a Burberry fashion show, five seasons ago, that Burke found herself seated next to Edward Enninful, editor-in-chief of British Vogue. “I texted my best friend, who said: ‘Do not let him leave without saying hello.’ To which I replied: ‘Obviously!’”

At the end of the show, Burke “tugged on the sleeve of his jacket” and delivered the monologue she had been silently rehearsing about how accessibility in fashion needs to be part of the repertoire rather than being locked in what she calls a “framework of impossibility”. Her confidence is awesome. Burke has similar stories of bouncing up to Cate Blanchett, Jacinda Ardern – whom she bumped into in a corridor at Davos and asked out for coffee – and Anna Wintour to introduce herself and her masterplan. Which is nothing less than infiltrating the ivory towers of fashion and design and shaking them up from the inside.

“I’m deliberately trying to place myself in the upper echelons of the fashion industry because that’s where change happens,” Burke says before heading off to have her torso encased in plaster for four hours. “I want to tilt the lens.”

Body Beautiful: Diversity on the Catwalk runs from 23 May to 20 October at the National Museum of Scotland, Edinburgh. Admission is free.

Too Many Children With LD And Autism In Mental Health Hospitals

May 20, 2019

Too many children in England are being admitted to mental health hospitals unnecessarily, according to a report.

Research for the Children’s Commissioner for England found children were often unable to get appropriate support at school and in the community.

This was contributing to children ending up in institutions, sometimes for months or years, the report found.

Children with learning disabilities or autism were being particularly let down by the system, it added.

Children’s Commissioner Anne Longfield’s report says successive governments have tried to tackle the problem, but the number of children in mental health hospitals remains “unacceptably high”.

Research shows a clear need to “focus on children’s journeys before they are admitted into inpatient care”, the report says, but often this is not happening.

“Children, families and staff working in this area spoke again and again about how the failure to provide appropriate support to children when they are in school and living in the community, and particularly when they reach a crisis point, has contributed to inappropriate hospital admissions and delayed discharges,” it says.

The review says there were 250 children identified as having a learning disability or autism in mental health hospitals in England in February 2019, compared with 110 in March 2015.

According to the report, NHS England said the figure of 110 was due to under-identification of these children in the past.

But even using adjusted figures from NHS England, the number has still not come down in the last four years, the report says.

‘Frightening and overwhelming’

It says it is “particularly concerning” that these findings come after NHS England’s Transforming Care programme, which sought to improve the quality of care for people with a learning disability or autism.

Ms Longfield said: “They are some of the most vulnerable children of all, with very complex needs, growing up in institutions usually far away from their family home.

“For many of them this is a frightening and overwhelming experience. For many of their families it is a nightmare.”

Ms Longfield said she had spoken to parents whose children had been “locked away in a series of rooms for months”.

“Others have to listen as they are told by institutions that their child has had to be restrained or forcibly injected with sedatives,” she said.

“They feel powerless and, frankly, at their wits’ end as to what to do.”

Ms Longfield is calling for a national strategy to “address the values and culture of the wider system across the NHS, education and local government so that a failure to provide earlier help is unacceptable, and admission to hospital or a residential special school is no longer seen as almost inevitable for some children”.

A spokesman for the National Society for the Prevention of Cruelty to Children (NSPCC) said some of the most vulnerable children were being “horribly failed”.

He said: “No child should be left to languish alone and it’s important that the government takes urgent action to provide high quality, community-based care that can prevent the need for children to be placed in secure hospitals.”

Tim Nicholls, head of policy at the National Autistic Society, said autistic children and adults were “being failed by a broken system”.

Wherever possible, autistic people should get the mental health support they need in their own community, he added.

The government said it was determined to reduce the number of people with autism or learning disabilities who are in mental health hospitals.

A spokeswoman said: “The NHS is committed to reducing numbers of people with a learning disability and autistic people who are inpatients in mental health hospitals by 35% by the end of March 2020, and through the Long Term Plan we will reduce numbers even further by investing in specialist services and community crisis care and giving local areas greater control of their budgets to reduce avoidable admissions and enable shorter lengths of stay.

“The CQC [Care Quality Commission] is also undertaking an in-depth review into the use of seclusion, segregation and restraint – which should only be used as a last resort – in order to improve standards across the system.”

 

Billy Monger Wins Pau GP

May 20, 2019

Billy Monger has claimed his first victory since having both his legs amputated after a crash two years ago.

Monger, who is competing in Euroformula Open races, won the Pau Grand Prix.

“Can’t believe it, I didn’t think two years on I’d be winning races,” said the 20-year-old Briton.

The Carlin driver – in a specially adapted car – dropped to last after switching to wet-weather tyres, a strategy which paid off as he surged past other drivers in France.

When Motopark duo Julian Hanses and Liam Lawson collided and took each other out, Monger – who had qualified 11th – inherited the lead and held on for victory.

He was seriously injured during a Formula 4 race at Donington Park in April 2017 but returned to racing less than a year after the accident at the British Formula 3 Championship.

Monger and his family had successfully appealed to the sport’s international governing body, the FIA, to change its regulations restricting disabled drivers.

‘Billy Whizz’ became the first disabled driver to race a single-seater car and claimed his maiden British F3 pole position on his return to Donington Park in September 2018.

He finished sixth overall in the 2018 British F3 Championship, taking two pole positions and three podiums.

Monger’s remarkable fortitude saw him recognised with the Helen Rollason Award for courage in the face of adversity at the BBC Sports Personality show in December.

Backstage, the lifetime achievement award winner Billie-Jean King – a tennis icon and equality campaigner – sought out the young racing driver and asked him for a selfie.

“I’m in awe of his tenacity. It was an honour to meet him,” she said.

Greta Thunberg On The Cover Of TIME

May 20, 2019

JobCentre Worker: “How Would I Want My Husband To Be Treated?”

May 20, 2019

Come with me on an eerie visit, where we step through the looking glass into an alternative universe where everything is as good as can be. You will like it here. Everyone smiles: they only want to help their clients fulfil themselves, nothing bad ever happens here. They love their work. This little utopia is the Middlesbrough jobcentre. As everywhere, they are rolling out universal credit to new claimants or existing “clients” with any change of circumstance. Here they prompt unemployed or underemployed people into work or more work, telling them how many jobs to apply for, what appointments and courses to take, and (whisper it) with what penalties if they fail (“But that’s very, very rare”).

It has taken me all of seven months’ applying to the Department for Work and Pensions to get here – my requests ignored, forgotten or parked, despite regular prodding. Pre-2010 I often sat in with jobcentre staff: but since then, in department after department, visiting any frontline is tortuous. With HMRC, eight years of requests to visit minimum-wage inspectors has yielded nothing – though they have never been outright refused.

Finally, here I am in a jobcentre I chose. Accompanied by a Whitehall press officer, I talk to work coaches and managers and sit in on some interviews with claimants. Recently the work and pensions secretary, Amber Rudd, tweeted a little YouTube video of her visit to a Lancaster jobcentre, so I knew what to expect. “I love my job,” one member of staff told her. Another said: “The good thing about work coaches is we are the human side of [universal credit].” Rudd says to the camera: “It’s been a really inspiring visit,” to “hear first-hand about the really personal, tailored, caring approach that work coaches have with helping people into work”.

That’s exactly what they told me too, but does she actually believe this is how universal credit works?

I now guess why my visit just came through. My colleague Aditya Chakrabortty wrote on Tuesday about a leaked memo from DWP top brass planning a charm offensive to promote universal credit, with £250,000 wrap-around ads on the Metro newspaper’s front cover. They complain UC “is portrayed incorrectly and/or negatively in the media” with “negativity and scaremongering”.

The Middlesbrough staff did their valiant best to hold that line. I’ve met many jobcentre staff and most are genuinely decent people, trying to make the system work against the odds. But their answers on this supervised visit floated in airy realms beyond the credible. Have staff cuts made their caseloads harder? “I think cuts have made us work smarter and harder,” said one. How often do they sanction people? “We find sanctioning doesn’t help,” another said, adding, “We’re all passionate and proud about our work. We live here and we’ve all had friends and family using our services. We ask, how would I want my husband to be treated?”

What about benefit cuts as people move to UC? “My impression is that the vast majority get more when they move on to it,” says one. The Commons work and pensions select committee says the switch leaves 2.2 million people in work better off by £41 a week, but with another 3.2 million losing an average £48 a week, I ask if any workplace changes could make it easier to do more for clients? No, nothing they could think of. A test question: what did they think of wider cuts in Middlesbrough, where the council has been hit hard? “I’ve not noticed we’ve got a lack of anything round here since the cuts, and I live here.”

Visit schools, hospitals, councils or any public employees trying to deliver against a backdrop of the deepest cuts in living memory and you hear their determination and despair, what works and what doesn’t, pride mixed with frustration at lack of the right tools. But this felt like conversations with automata in Stepford. It felt like my visit in the old USSR to the national women’s committee led by cosmonaut Valentina Tereshkova, when they all clapped to hear every single Soviet female worker had donated voluntarily to the state’s peace fund.

Numerous reports reveal the chaos and cruelty of the UC upheaval. Arrogantly dismissing experts, the former work and pensions secretary Iain Duncan Smith promised to “simplify” six benefits into one, varying the sum with each change in earnings and circumstance. At 10 times original costs, full rollout promised by 2013 is now pencilled in for 2023. The National Audit Office says it will never be value for money, or be proven to get more into work. George Osborne’s cuts leave claimants destitute and food banks swamped, with 73% in rent arrears.

Families half starve waiting the official five weeks for payment, or sink into debt. For every extra pound they earn, 63p is deducted: what if the rich paid 63% in income tax? Over the years, an informant inside another city jobcentre has told me what’s really happening. Yesterday, they told me it was “panic” in their office – some caseloads at 400, everything set aside to unblock urgent benefit payments. Yes, Rudd had eased things: sanctions targets were dropped, and the savagery had diminished from the days when they were ordered to catch out the vulnerable. My informant recalls the day their office made its first three-year sanction and the managers celebrated: Rudd has ended three-year sanctions, but they can still last many months.

Is Middlesbrough jobcentre an exceptionally happy planet? The local MP’s office deals with pile-ups of UC disaster cases. I asked the Middlesbrough staff if things had got better, but they denied they’d ever had sanction targets or whips on their backs. If they had admitted anything was ever less than pluperfectly flawless I might have believed them, but the DWP will need a more realistic script or its upcoming charm offensive will fall flat.

MPs Demand Details Of DWP’s Universal Credit Advertorials

May 17, 2019

A cross-party group of MPs have written to Amber Rudd, the work and pensions secretary, demanding more details of a reported £250,000 “unbranded” PR campaign to promote universal credit.

A leaked internal document revealed by the Guardian this week says the Department for Work and Pensions (DWP) has taken out newspaper advertorials purporting to “myth-bust common inaccuracies” about universal credit in a “UC-uncovered investigation.”

The campaign, consisting of an advert wrapped around the Metro newspaper and a four-page feature inside, will not feature any DWP branding, according to the leaked memo. “The features won’t look or feel like UC – you won’t see our branding,” it states.

This week the Leicester Mercury carried a lengthy feature under the headline “I think universal credit is great – here’s why”, based on interviews with staff at a jobcentre. “It’s a good thing. It is helping people and it is making a difference,” Steve Bruce, a team leader at Leicester’s Wellington Street jobcentre, was quoted as saying.

Bruce appears to have been well briefed by the DWP communications team on the lines to take about universal credit. “It’s designed to break the cycle, get people into work, and it is doing that,” he said.

A write-up of the article in other regional titles owned by the publishing group Reach was similarly sympathetic. The headline “Universal credit: why it is actually a great idea” appeared in Reach titles in Newcastle, Kent and Wales.

The original article noted that claimants had “spoken about hardship” after transferring to universal credit, and acknowledged its reporter had been invited by Rudd to meet the jobcentre staff. But it did not mention the DWP’s PR campaign, and the other articles did not mention the DWP’s invitation.

The memo, published on the DWP intranet, suggests the campaign will be a counterweight to “negativity and scaremongering” in the media, which it blames for putting people off applying for the benefit.

The chair of the work and pensions select committee, Frank Field, has written to Rudd asking to see the internal DWP documents in full. He has asked for details of the cost of the campaign, whether Rudd personally approved the plans, and what guarantees the department can give as to the accuracy of the advertorial.

“I know that the department will be keen to ensure the accuracy of its communications. Will you ask Citizens Advice, who deliver your Help to Claim service, to approve the wording of any written communications – including the reported wraparound in the Metro – to ensure that they are clear to claimants and do not risk misleading or confusing them,” Field wrote.

He called for guarantees from the DWP that the unbranded advertorials would not confuse claimants or potential claimants, and he asked for evidence that the department had assessed the risk that the PR campaign could prompt people to sign up to universal credit when they did not need to.

The committee is concerned about reports that some jobcentre staff wrongly advise benefit claimants to switch from legacy benefits to universal credit even when in some cases they will be left hundreds of pounds worse off as a result.

Field has also asked for more details of the DWP’s plans to partner with the BBC on a documentary about universal credit. The Guardian revealed that the DWP would have access to the film before transmission, although the BBC insists it has editorial control.

Universal credit, which is running six years behind schedule, rolls six benefits into one single monthly payment. An estimated 8 million people will claim it by 2023. Current estimates suggest millions of claimants will be up to £1,000 worse off when they move on to it.

The online benefit has been subject to widespread criticism in the media – from the Guardian to the Sun – especially for its designed-in five-week waiting time for a first payment, which has been blamed for an increase in food bank use. MPs of all parties, campaigners and the National Audit Office have criticised it.

Last year the UN rapporteur on poverty, Philip Alston, highlighted universal credit in his critical interim report on the rise of poverty in the UK. “Although in its initial conception it represented a potentially major improvement in the system, it is fast falling into universal discredit,” he wrote.

The Shalva Band Pull Out Of The Eurovision Song Contest

May 17, 2019

The Shalva Band were favourites to represent host country Israel at Eurovision but pulled out when the dress rehearsal was scheduled for Friday – the Jewish holy day of rest.

The group of eight musicians, who all have disabilities, had been voted through on a national TV programme.

Their popularity rose at the same time research revealed 90% of parents in Israel didn’t want their offspring to attend after-school clubs with disabled children.

The band released a campaign song called Open The Door in response to the research. It went viral and they say it’s changing attitudes to disability.

Vocalists Anael and Dina told BBC Ouch they are now stopped for selfies wherever they go.

Despite opting out of Eurovision, The Shalva Band will perform A Million Dreams, from The Greatest Showman, during the 2nd Eurovision semi-final on Thursday.

With apologies for the occasional sound difficulty on the line from Jerusalem.

#LetBhavaniLive

May 16, 2019

My fiancée Bhavani is seriously ill and has been receiving urgent medical treatment. The doctors say she needs to stay here, but the Home Office want to deport her to India. They even threatened her with deportation whilst she was unconscious in a coma. 

Doctors say her life is at risk if she would be deported. This means the Home Office could be sending her to her death. Will you sign my petition urging the Home Office to make sure she stays?

Bhavani came to the UK nine years ago as a student. After two misdiagnosed operations as a child in India, she got finally diagnosed with Crohn’s disease in the UK. After her studies, she worked in the arts industry in the UK creating a platform for people with chronic illnesses, which has been recognised with the Royal Society of the Arts, the British Council, and the Arts Council England, to name a few: https://theinvisiblelabs.com/

She paid her taxes like you and me, and as a visa holder, she paid even more into the NHS than British citizens – it’s called ‘Immigration Health Surcharge’. The UK has been her home, and it’s also where we have fallen in love and built a life together. When her Crohn’s disease got worse she needed surgery and had to stop working. So she applied to stay, but the Home Office have refused her application. 

The Home Office have admitted that she wouldn’t get as good care in India, and pointed out that she could get ‘palliative care’ instead.

As if Bhavani’s condition wasn’t critical enough, this whole process has caused her a lot more stress, which is only making her condition worse. 

After Bhavani needed surgery last September there were severe complications and she barely survived. She will need more surgeries to get better again, because her stomach never closed properly – but right now she is too weak to even receive surgery. That’s why she is currently on a drip to gain weight so that she can survive the next surgeries. She can’t travel at all and the surgeons say that it is of “vital importance” that her care continued to be coordinated and performed here in the UK.

The Home Office are reviewing our case, so we need to put as much pressure as possible on them now!

This cruel politics has to end, so that Bhavani can continue to get the care she desperately needs.

Will you sign my petition urging the Home Office to allow Bhavani to stay?

Thanks so much for supporting our cause. If you are interested in Bhavani’s work visit her webpage: https://www.theonlybe.com. You can also donate directly to support her on https://donorbox.org/thebefund 

Scientists Create Mind-Controlled Hearing Aid

May 16, 2019

A mind-controlled hearing aid that allows the wearer to focus on particular voices has been created by scientists, who say it could transform the ability of those with hearing impairments to cope with noisy environments.

The device mimics the brain’s natural ability to single out and amplify one voice against background conversation. Until now, even the most advanced hearing aids work by boosting all voices at once, which can be experienced as a cacophony of sound for the wearer, especially in crowded environments.

Nima Mesgarani, who led the latest advance at Columbia University in New York, said: “The brain area that processes sound is extraordinarily sensitive and powerful. It can amplify one voice over others, seemingly effortlessly, while today’s hearing aids still pale in comparison.”

This can severely hinder a wearer’s ability to join in conversations, making busy social occasions particularly challenging.

Scientists have been working for years to resolve this problem, known as the cocktail party effect. The brain-controlled hearing aid appears to have cracked the problem using a combination of artificial intelligence and sensors designed to monitor the listener’s brain activity.

The hearing aid first uses an algorithm to automatically separate the voices of multiple speakers. It then compares these audio tracks to the brain activity of the listener. Previous work by Mesgarani’s lab found that it is possible to identify which person someone is paying attention to, as their brain activity tracks the sound waves of that voice most closely.

The device compares the audio of each speaker to the brain waves of the person wearing the hearing aid. The speaker whose voice pattern most closely matches the listener’s brain waves is amplified over the others, allowing them to effortlessly tune in to that person.

The scientists developed an earlier version of the system in 2017 that, while promising, had the major limitation that it had to be pre-trained to recognise speakers’ voices. Crucially, the latest device works for voices it has never heard before.

To test the device, the lab recruited epilepsy patients who already had electrodes implanted in their brain to monitor seizure activity ahead of planned brain surgery.

The patients were played audio of different speakers simultaneously while their brain waves were monitored via the electrodes implanted into their brain.

An algorithm tracked the patients’ attention as they listened to different speakers that they had not previously heard. When a patient focused on one speaker, the system automatically amplified that voice, with a lag of just a few seconds. When their attention shifted to a different speaker, the volume levels changed to reflect that shift.

The current version of the hearing aid, which involved direct implants into the brain, would be unsuitable for mainstream use. But the team believe it will be possible to create a non-invasive version of the device within the next five years, which would monitor brain activity using electrodes placed inside the ear, or under the skin of the scalp.

In theory, Mesgarani said, the device could also be used like a pair of audio “binoculars” to covertly listen in on people’s conversations, although this was not the intended application.

The next step will be testing the technology in those with hearing impairments. One question is whether it will be as easy to match up brain activity in people who are partially deaf with sound waves from speech. According to Jesal Vishnuram, technology manager at the charity Action on Hearing Loss, said that one of the reasons people find conventional hearing aids unpleasant in noisy environments is that their brain is out of practice at filtering sounds and so does this less effectively.

“One of the reasons people struggle is that they often wait a long time before getting a hearing aid and in that time the brain forgets how to filter out the noise and focus on the speech,” she said. “This is really interesting research and I’d love to see the real world impacts of it.”

The findings are published in the journal Science Advances.

CP Teen Taking GCSEs Using Eye Movement

May 15, 2019

A 16-year-old boy with cerebral palsy is taking his GCSEs using just his eyes.

Will, who attends Lonsdale School in Stevenage, is unable to talk or write, so will be using a specially-designed computer that reads his eye movement.

He will be given 700% more time to allow for the computer to recognise the letters being communicated.

His mum, Sam, says: “He’s now starting to look at his future career.”

Womankind-Webchats For Deaf Women

May 15, 2019

Live webchat sessions are being offered by a charity to deaf women in Bristol needing mental health support.

Womankind hopes to reach 700 women in its first year and 1,400 the next year.

Volunteer service co-ordinator Laura Gallagher said deaf women were “more likely to be abused than hearing women” but faced greater barriers to get help.

DeafBlind UK welcomed Womankind’s work. It said there was “insufficient understanding of deafness and the connection with mental health”.

The charity said there were about 11 million people with hearing problems and about 151,000 used British Sign Language (BSL) as their only or preferred form of communication.

‘Desperate situations’

Andrew Barnes, from DeafBlind UK, said: “There are many stories of health services using pen and paper to communicate with deaf patients, not realising that British Sign Language (BSL) is a language in its own right.

“For some deaf people, mental health issues can start very early in childhood.

“We have heard of deaf people who have been waiting hours for urgent care in A&E because no interpreters are available or have had to rely on family members to interpret what is being said which infringes on that person’s privacy and dignity,” Mr Barnes added.

“We also know of people who have ended up in desperate situations which could have been avoided if accessible support was available,” added Mr Barnes.

Womankind was inspired to create the webchat, which launches in June, after one of its deaf clients said there was no helpline for deaf women.

Ms Gallagher said she hoped it would “relieve emotional distress”.

About £40,000 was fundraised to set up the secure, confidential web tool which will cost about £35,000 a year to run.

It also hopes to reach younger women who are more likely access help online.

Leaked Memo Shows DWP Plans For PR Campaign To Defend UC

May 15, 2019

How to sell the unsellable? How to pretend utter chaos is a plan coming together? How to persuade the public, who just refuse to buy it, to at least keep on paying for it? I believe I have found the answer.

It comes in the form of an internal memo from the Department for Work and Pensions that somehow floated past my desk. Published on the staff intranet just a few days ago, on 2 May, it is signed by three of the department’s most senior officials, including the DWP’s director of communications and Neil Couling, its head of universal credit. And it is that toxically controversial benefit which is its subject.

Addressed to the department’s employees, the letter sympathises: “We share your justified frustration when our hard work – in particular our work on Universal Credit – is portrayed incorrectly and/or negatively in the media.” The circular condemns this “negativity and scaremongering”, and blames it for putting people off even applying for the benefit.

It was said that Steve Jobs could conjure up a “reality distortion field”, bending facts into a parallel universe to spur on Apple designers to achieve the impossible. I can only assume that the DWP’s overlords are creating their own distortion of reality, because I cannot think of a single bigger policy failure this decade than universal credit.

After years of ministers pretending otherwise, Amber Rudd, the DWP secretary, now admits universal credit’s introduction has left people so short of cash that they have resorted to food banks. What Iain Duncan Smith hailed in 2011 as a transformation of welfare has turned into something grotesque, with massive delays and huge flaws both of administration and design, repeatedly damned by MP select committees. The independent National Audit Office judges that universal credit has neither saved public money nor helped people into work. But it has left thousands of vulnerable claimants penniless, while others starve and even lose their homes. In a House of Commons debate last summer the London Labour MP Catherine West recounted how one of her constituents had “fallen off benefits” and ended up “sleeping in a tent in a bin chamber” on a housing estate.

Such are the horrors whose very documentation by journalists the DWP letter dismisses as “unfair”. Rather than halt universal credit, as demanded by so many groups, the department’s managers now say they will respond “in a different way … very different to anything we’ve done before”.

What follows is an elaborate media strategy to manufacture a Whitehall fantasy, one in which the benefits system is running like a dream while a Conservative government generously helps people on the escalator to prosperity. It begins at the end of this month with a giant advert wrapped around the cover of the Metro newspaper; inside will be a further four-page advertorial feature. This will “myth-bust the common inaccuracies reported on UC”. What’s more, “the features won’t look or feel like DWP or UC – you won’t see our branding … We want to grab the readers’ attention and make them wonder who has done this ‘UC uncovered’ investigation.”

Not only is this a costly exercise, with a Metro wraparound going for a headline rate of £250,000 (of your money, let’s not forget), but the Advertising Standards Authority will doubtless be interested in that description of the feature. Its guidelines stipulate that“marketers and publishers must make clear that advertorials are marketing communications”.

Two and a half million adults pick up a daily copy of the Metro freesheet, and they will see these advertorials every week for nine weeks. Meanwhile the secretary of state, Amber Rudd, will invite “a wide range of journalists at regional and national publications … to come [to a jobcentre] and see the great work we do”. Doubtless, the Jobcentres will be carefully chosen and everything will be arranged so that when the dignitaries descend, all will be as precisely ordered as the innards of a Swiss watch. Perhaps it’s not too indelicate to mention here that the Tory party is weeks into an unannounced leadership contest, during which plummy columns commending Rudd for turning round a failed service do no harm to her prospects.

Then comes the letter’s grand reveal: BBC2 has commissioned a documentary series, which is “looking to intelligently explore UC” by filming inside three jobcentres. “This is a fantastic opportunity for us – we’ve been involved in the process from the outset, and we continue working closely with the BBC to ensure a balanced and insightful piece of television.” Wading through such adjectives, one remembers how the most important of the letter’s signatories, Neil Couling, told Holyrood parliamentarians that the rise of food banks was down to “poor people maximising their economic opportunities” and that “many benefit recipients welcome the jolt that … sanctions can give them”.

When the BBC’s Panorama last November went to Flintshire in north Wales and found single, elderly men being made homeless as a result of universal credit, and the local council in meltdown, the DWP criticised the corporation for its “lack of balance”, even complaining that the interview with a minister was “unfairly cut”. A Tory backbencher was wheeled out to declare the investigation “fake news”.

No such danger with this three-part series, which is driven by access rather than led by a reporter. When the civil servants’ trade union, the PCS, found out about the filming, it asked if staff could talk frankly to the crew, only to be told no: they would still be subject to the civil service code, which demands complete impartiality. Perhaps this explains an internal PCS note on the BBC series I have seen, which remarks that staff are unhappy about being identified on screen. At one of the nominated jobcentres, in Toxteth in Liverpool, “It is our understanding that there have been no volunteers to take part in the filming.” The risk is that any staff who do participate toe the management line, making the film an advert for universal credit.

The PCS briefing also reports a senior universal credit manager telling union reps that “the DWP would have access to the film before transmission”. The BBC confirms that is the case, although it says it has “editorial control”. When I contacted the DWP it refused to answer even the most basic of questions, advising me to submit them via a freedom of information request.

It’s not uncommon for the Ministry of Defence to use newspapers to recruit soldiers, nor for government departments to grant TV crews access to their workings. What is very unusual is to see a car-crash policy damned even by the Archbishop of Canterbury airbrushed with vast public resources into a triumph.

After reading the documents, I spoke to Jennifer Jones of Sheffield Stop and Scrap Universal Credit. Severely disabled, she is awaiting transfer to the benefit, a move that she believes might deprive her of nearly £400 a month. She showed me Facebook posts of others, who have already lost out under universal credit, and told me how after her autistic son goes off to school she neither heats the house nor cooks, in order to save money. What would she do with the £250,000 that the government may spend on a single newspaper advert?

“I’d make sure there was enough on the gas and electric, that we had food in the cupboards and new school uniforms,” she said. “Then I’d see about the neighbours.” I weighed up the smallness of her wants, against the DWP’s planned extravagance. So what did Jones make of the government’s PR campaign?

“They’re taking money off the public, to lie to us about how well universal credit is working. They could be spending that money on us, but they’re spending it to con us,” she said. “It’s scary our government doing that.”

 

UK’s First Purpose Built Autism Centre Opens

May 14, 2019

The UK’s first independent purpose-built autism centre has opened, with the aim of dramatically reducing the waiting time for a diagnosis.

Sky News was given a first look at the Caudwell International Children’s Centre (CICC) in Staffordshire, which is expected to transform the way the hundreds of thousands with the condition in the UK and their families can be helped.

The average waiting time to be assessed for autism is at least two years, and the childen who are eventually diagnosed wait on average for four years.

The £18m centre, set in the grounds of Keele University, will enable families to get a diagnosis within just six weeks.

An early autism diagnosis can be vital in helping families understand their child’s behaviour.

After years of struggling and not understanding the condition, Abbie and Sophie Dempsey were told they were autistic aged nine and 11.

Abbie, who lives with her family in Biddulph, Staffordshire, told Sky News: “It was hard, because I didn’t understand a lot of things, and I wasn’t really getting much attention.

“If I did ask for anything, not a lot of people would be able to help me.”

For Abbie and her parents the long wait for a diagnosis was frustrating.

Her mother Alison said: “It took a lot out of me.

“We weren’t given any letter to say this is what you could do, this is where you can go to.

“(Nothing to say) you could go to this place to get any help.”

Victoria Priest, a mum-of-six, said she spent nearly 10 years trying to get a diagnosis for her daughter.

She added: “Layla was our third child and at nine months old we took her to the doctor.

“She rocked severely and I knew something wasn’t right but we were told to ignore it by health professionals and told that she’d grow out of it.

“As she got older, she became disruptive. We’d tried everything to get some sort of diagnosis, but nobody seemed to care and nobody would listen to us.”

Layla visited the Caudwell International Children’s Centre in March and was given a diagnosis within two weeks of her assessment.

Ms Priest added: “This new centre will provide hope for thousands of families like us that are fighting to get a diagnosis for their children.”

The development of the complex has been funded by a group of philanthropists, with £10m coming from the businessman John Caudwell.

The Caudwell International Centre will bring together assessment, diagnosis, family support and research into autism.

As well as reducing diagnosis time, its other main focuses are to enable families to receive assessment from a number of professionals in one place, and to provide world class support for those affected by the condition.

Mr Caudwell told Sky News: “Right from the beginning I thought what we’re going to do is, we’re going to iconically help the lives of children with autism.

“We’re going to set a new standard and hopefully prove that we can intervene in the condition, and make the challenges less for those parents who have got children with autism.”

A distraught mother tells Sky News about her autistic son’s struggle after he was put into residential care 17 years ago.

The centre will offer ongoing support for families following an autism diagnosis through educational workshops and programmes.

Staff will also be working closely with clinical and academic partners from the international autism community to share insight and research.

Facilities include state-of-the art assessment suites, a sensory garden to help children interact with nature, and therapy suites for ongoing workshops for families.

Trudi Beswick, chief executive of the centre, said: “We have spent the last 19 years listening to families consistently telling us they do not get the support they need.

“It is their stories that are at the heart of this project and their needs have shaped the new service and the centre.

“When all evidence points to the long-term benefits of early intervention, the delays families face are not acceptable and Caudwell Centre aims to change the way families access support and prove there is a better way.”

New Public Buildings To Have Changing Places Toilets For Severely Disabled People

May 14, 2019

New, or majorly refurbished, large buildings used by the public must have Changing Places toilets for severely disabled people, under government proposals announced today (12 May 2019).

The proposals, being consulted on from today, are expected to add the toilets to more than 150 new buildings a year, including shopping centres, supermarkets, cinemas, stadiums and arts venues.

Changing Places toilets are larger accessible toilets for severely disabled people, with equipment such as hoists, curtains, adult-sized changing benches and enough space for carers.

There are over 1,300 Changing Places toilets in the UK, up from just 140 in 2007, but more are needed to support the more than a quarter of a million people who need them in the UK.

Without access to these toilets, it can be challenging for people to enjoy daily activities.

Local Government Minister, Rishi Sunak MP, said:

Everyone should have the freedom to enjoy days out in dignity and comfort. For severely disabled people, this is made very difficult because there are not enough Changing Places toilets.

We’ve made some progress, but I’m determined to increase the number of these life-enhancing facilities, so people are given the dignity they deserve.

I’m pleased so many people will be helped by this major change.

Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, which co-chairs the Changing Places Consortium, said:

People living with disabilities go to work, visit shops and enjoy days out with friends just like everyone else. But a lack of Changing Places toilets make these seemingly simple tasks a challenge. Too often, we hear stories of people not leaving their homes, having to be changed on dirty toilet floors or even having surgery because there are not enough facilities.

The government’s consultation on making Changing Places toilets mandatory in new, large public buildings is hugely encouraging. Along with our fantastic campaigners, we have long pushed for changes to legislation, and now we are one step closer to that being reality.

This is wonderful news for everyone who needs Changing Places toilets. We look forward to working with the government and campaigners in making society more inclusive.

In the absence of Changing Places facilities, disabled people and/or carers face:

  • limiting what they drink to avoid needing the toilet when they are out – risking dehydration and urinary tract infections
  • sitting in soiled clothing or dirty nappies until a suitable toilet is found or they return home
  • having to change a loved one on a dirty toilet floor
  • manually lifting someone out of their wheelchair – risking safety
  • reducing their time out of the house – restricting their social lives

The government has launched a 10-week consultation, which proposes the required size and shape of Changing Places toilets as well as the range of equipment that must be included.

It also proposes thresholds at which the facilities will be made mandatory in new or largely refurbished buildings of different types, such as overall floor space or attendance capacity.

Last month, the Department for Transport, in partnership with Muscular Dystrophy UK (MDUK), launched a £2 million fund for Changing Places to be installed in existing motorway service stations, which is now open for applications.

The Department of Health and Social Care will also soon launch a £2 million fund for NHS Trusts to install new Changing Places in over 100 hospitals across England.

Examples of how Changing Places can help

Lauren West, from London, needs Changing Places toilets. She is MDUK’s Trailblazers Manager.

Lauren said:

As a Changing Places user, I’m delighted to see the potential change to building regulations to include these life-changing facilities. Currently provision is very hit and miss with some areas having none at all. This means people like myself can’t visit these places or can’t stay as long as they’d like. This consultation is an encouraging step towards making the right facilities accessible to those that need them.

With Changing Places, disabled people have the ability to travel, to work, to enjoy leisure activities and to spend valuable time with family and friends. It’s not only the right thing to do, but it also makes business sense. By providing these toilets, you’re giving disabled people the opportunity to visit your venue, to spend money and to spread the word about its inclusivity.

Fiona Anderson, 30, from Bolton, is part of MDUK’s Trailblazers network, and needs Changing Places toilets.

Fiona said:

A lack of Changing Places toilets has led to me deciding to have surgery, which will give me more freedom to go to the toilet. If these facilities were in every large public building, I would no longer have to endure the pain of postponing going to the toilet all day and the ever present dark cloud of sepsis occurring would be lifted. Ultimately, I also wouldn’t need to have a catheter fitted, which would mean the world to me. I’m not incontinent – I simply can’t transfer to a toilet without a hoist.

Changing Places toilets are a much-needed lifeline. But with so few of them available, people like me are forced to sacrifice our dignity and independence.

#ImWithSam Fights Online Disability Hate Crime

May 14, 2019

From yesterday’s Guardian letters online.

Disability hate crime is an issue we face every day, but is not often talked about (Report, 10 May). Figures showing that online disability hate crime has hit record levels in England and Wales are very concerning, and highlight that we need to talk about the issue in order to tackle it. For too long, I and other people with learning disabilities have been excluded from digital spaces out of fear of abuse. We have a right to feel safe online. What needs to change is the behaviour of the abusers, not the victims.

Through #ImWithSam, we have been campaigning to raise awareness of this issue among policymakers, the general public and, crucially, among people with learning disabilities, so that they recognise when a crime is happening and what they can do about it. So far, we’ve trained more than 1,000 police officers to help tackle learning disability hate crime. Online disability hate crime should have tougher laws. Abusers should be prosecuted, and their profiles taken down. Social media companies also have a role to play. They should make their safety procedures easier to understand, so people with learning disabilities know how to better protect ourselves. This cannot continue. We need change now – and I hope that the government takes the problem of online hate crime seriously, so people with disabilities are free to express themselves online, free from fear.
Mark Brookes
Campaigns adviser, Dimensions

Blind Student Facing Deportation Criticises Dundee Uni Support

May 14, 2019

Dundee University took tens of thousands of pounds from a blind Nigerian PhD student and promised him “state of the art” disabled facilities if he came to the UK with his young family to complete his studies.

Instead, Bamidele Chika Agbakuribe, who is totally blind, claims the university gave him failing IT equipment and repeatedly obstructed his studies to the extent he was not able to complete his work. When he complained, they failed him and cancelled his student status, he said. The university then contacted the Home Office, which has said it will deport Agbakuribe and his family on 5 June.

Agbakuribe said he always planned to leave the UK after his studies finished at Dundee’s School of Education and Social Work. But if he is forced to return to Nigeria without his PhD certificate, he will have to repay the tens of thousands of pounds his sponsor gave him to come to the UK.

Because Agbakuribe sold his house in Nigeria to help pay for his university fees, he, his wife and four young children would be left destitute on their return.

“What has happened to me is enough to kill a person. As a blind academic, I received a lot of support in Nigeria. I was respected for my achievements and inspired others,” he said.

“I had such high hopes of Scotland, to study at this university. The university received tens of thousands of pounds from myself and my sponsor. But despite the promises, I received no such support, not even proper supervision, and in the final analysis, they branded me a failure.

“I have never been allowed to state my case. This is the most shocking part. I am expected to stay quiet and go back home.”

The Guardian has seen testimony from another blind student at Dundee University who alleges similar treatment.

Robina Qureshi, the chief executive of Positive Action in Housing, a homelessness and human rights charity, said: “Agbakuribe’s story is a universal one. The evidence in this case begs for a public inquiry by the Scottish parliament so that lessons can be learnt. It is a damning indictment.”

Qureshi alleges Dundee University “enticed” Agbakuribe to come to the UK by promising him the latest disabled facilities, a sighted guide and frequent academic supervision.

Instead, she claims, it gave him IT equipment that did not work, took away his guide after a few weeks, failed to supervise him – he went more than a year without academic supervision at one time, and more than six months without supervision at another – and isolated him from his peers by forcing him to sit in a different room.

The university denied these claims in a press release, saying: “The decision to terminate the student’s studies was made solely on the basis of a lack of academic progress against a background of extensive and dedicated support.”

The university said it could not comment on the allegations by the second student because “we have not been made aware of the details, without which it is impossible to investigate”. Dundee said it takes all such complaints seriously and encourages students to use a complaints-handling procedure.

Between 2016 and 2018, the university threatened Agbakuribe with deportation when he tried to complain about the situation, claims Qureshi, who said she has read more than 7,500 emails between Agbakuribe and the university. “They mentioned it constantly. The evidence is utterly damning,” she said.

The university said: “The university provides support to all overseas students … includ[ing] making students aware of their obligations under their visa and how they relate to their academic progress, and the possible consequences which may arise if these are not met. The university does not consider this advice as threats but as guidance.”

Agbakuribe is supported by his local MSP, Joe FitzPatrick, members of the University and College Union’s national executive committee as well as its Dundee University branch, and the Scottish TUC.

Other high-profile supporters include Dr Carlo Morelli, the president-elect of the UCU in Scotland, Aamer Anwar, the rector of Glasgow University, Dr Marion Hersh from Glasgow University, and the former Scottish government minister Malcolm Chisholm.

Qureshi said: “We want Bamidele to be allowed to appeal to the university and be properly represented, failing which, we will have no alternative but to take this matter up with the Equality and Human Rights Commission [and] the information commissioner, and call on the John Swinney, [the]education minister, and the Scottish government to hold a public inquiry.”

The Challenges Of Being A Teacher With Tourettes

May 13, 2019

Natalie Pearson is a primary school teacher and one of a few in the world to also have Tourette’s syndrome.

Tourettes causes her to swear, sometimes in class, and also jerk her body – but she says her students and colleagues have embraced it.

The science teacher was diagnosed with late-onset Tourette’s syndrome at the age of 21 and believes a traumatic rape at university was the trigger.

Natalie’s story was originally heard on the BBC’s Multi Story podcast.

Scammers In Suits Targeting Claimants At JobCentres

May 13, 2019

‘SMARTLY-dressed’ fraudsters are targeting families on benefits in a new scam, the Citizens Advice has warned.

The conmen, claiming to be from the Department for Work and Pensions (DWP) prey on people as they leave from job centres, with the promise of offering ‘government loans’.

Instead, the victims are unwittingly signed up to universal credit with the scammers applying for an advanced payment which is paid to the person’s bank.

The cheats then charge the victims for the ‘service’ which is normally half of the payment advance – at an average cost of about £400.

The warning about the scam has been issued by staff at the Gosport branch of Citizen Advice who said the area hasn’t yet been targeted, with most crimes reportedly taking place in the north of England.

However, staff want people to be aware of the con locally to avoid falling victim to it.

In a statement, the organisation said: ‘A number of cases reported to Citizens Advice involve people being approached in their home and in public – especially outside job centres and in pubs – by smartly-dressed individuals targeting those on benefits and offering them “government loans”.

‘The individual does not realise they have been scammed or signed up to universal credit until their legacy benefit has stopped being paid, and the person approaches their local jobcentre where they are informed they have moved onto universal credit, with an advanced payment to repay.’

Disabled Musicians Are Being Failed By Venues

May 10, 2019

Last year, Ruth Patterson’s band Holy Moly and the Crackers tried to book a tour of the UK.

But one venue wrote back, refusing to host them because Patterson, who has arthritis and Ehlers-Danlos syndrome, uses a wheelchair.

“They said they wouldn’t book us because I was a fire hazard,” she says. “That’s absolutely horrendous.”

The singer is not alone. A new survey suggests disabled musicians face significant barriers in UK venues.

Of the nearly 100 deaf and disabled performers surveyed by Attitude Is Everything, two-thirds said they had to “compromise their health or wellbeing” in order to play live.

Twenty per cent said they had been forced to cancel gigs altogether due to a lack of access.

One musician, writing anonymously, said: “I would never perform if I did not force myself up and down more flights of stairs in one night than I would comfortably navigate in one night.”

Another said: “One of my bandmates has epilepsy and gets often ignored when asking organisers not to use strobe or flashing light.”

DJ Laura Jones, who is visually impaired, said her requests for “bright white light sources” were often ignored, because “it’s difficult for people to know what my problem is unless they see me walking into a wall”.

Image copyright Laura Jones
Image caption Laura Jones says promoters fail to consider her visual impairment

She recalled an incident at the Burning Man Festival in Nevada, where she was ordered to remove her sunglasses even though, “my condition is made worse by UV light”.

“People know wheelchairs and they know canes, but they struggle to know anything in between,” she said.

The snapshot of 96 musicians, songwriters, DJs, producers and performers also revealed that:

  • 70% of respondents said they had kept their disability hidden in case it damaged their reputation with venues, promoters or festivals.
  • 38% could not access their nearest rehearsal space.
  • 96% felt the industry could do more to become inclusive for disabled artists.

Blaine Harrison of Mystery Jets, who has spina bifida, said it was “heart-breaking that so many artists are facing barriers and obstacles”.

Patterson called the findings “saddening but completely unsurprising”, adding that UK venues were particularly ignorant of disabled musicians’ needs.

“Europe is generally better in terms of access. And even if they don’t have access, they have a lot more guilt about it. And that means something to me.

“I feel like in the UK, some venues feel like they’re doing you a favour just by putting you on.

“The music industry has got to step up and make serious changes.”

Image copyright Getty Images
Image caption Mystery Jets singer Blaine Harrison says the difference in venues’ treatement of disabled artists is vast

Harrison said newer venues were at an advantage, as building regulations meant accessibility was considered at the design stage, but highlighted the 116-year-old London’s Shepherd’s Bush Empire as an example of a concert hall that had made great strides towards inclusivity.

“They’ve built in lifts and ramps and, perhaps most importantly, their staff are really well trained,” he said.

Suzanne Bull, CEO of Attitude Is Everything, said the survey would make “uncomfortable reading” for the UK music industry.

“Our respondents clearly raise some fundamental issues with rehearsing, recording and performing that need to be addressed,” she added. “Disability cannot be treated as a taboo.”

In response to such issues, Attitude Is Everything launched Next Stage – an initiative aimed at promoting greater inclusivity for artists in the music industry – last December.

The Arts Council-funded scheme aims to gain a greater understanding of the challenges facing disabled artists – and take steps to remove those barriers.

NHS Treatment Decision Gives Hope To MS Sisters

May 10, 2019

Sisters Zoe Bowman and Vikki Langford were both diagnosed with multiple sclerosis within weeks of each other.

But while Vikki has been able to get treatment for her form of the condition, Zoe has not.

That is because Zoe has the primary progressive form of the disease for which there has been no treatment available on the NHS. Until now.

The NHS drugs advisory body, the National Institute for Health and Care Excellence (NICE), has announced that it has reached a deal with the manufacturers of a new drug to enable it to be available on the health service in England.

Ocrelizumab is the first and only licensed treatment for primary progressive MS in Europe.

NICE had initially refused to back it because of the price being asked by the manufacturer Roche.

But now a deal has been reached, which means the average cost per patient will be below the full price of just over £19,000 a year for twice-yearly infusions.

For Vikki and Zoe it means they both have hope that the symptoms of the incurable disease, including difficulty walking, fatigue and blurred vision, can be delayed as long as possible. The treatment can delay the need for a wheelchair by seven years.

‘It was awful that Zoe had nothing’

Vikki, 52, who lives in Battersea, London, was diagnosed with relapsing remitting MS in January 2017.

Her form of the disease comes in waves followed by periods of recovery, whereas primary progressive MS just gets worse.

She said: “It was awful knowing I have a world of treatment choices at my fingertips yet Zoe had nothing.

“She’s my little sister and a lot of my anxieties around MS have been focused on her, rather than myself.

Image copyright MS Society
Image caption Vikki Langford (left) and her daughter, Chloe, with Zoe Bowman (right)

“I’m overjoyed she could now have a shot at hope.

“And it isn’t just for Zoe – this decision sends a message that people with primary progressive MS matter and they equally deserve treatments and care.”

There are around 90,000 people in England with MS – and the primary progressive version accounts for around 10 to 15% of cases.

‘I felt isolated’

Zoe, 43, from Crystal Palace, also in London, said: “I felt so isolated when I was told by doctors there was nothing they could do for me.

“It was like being discriminated against – it’s not my fault I have this particular type of MS.

“Now that there’s a treatment available that could work for me, I finally have a glimmer of hope for the future.

“Anything that could help me keep my independence for longer would have a massive impact.”

Despite the approval by NICE, there will still be restrictions placed on which people with primary progressive MS can access the treatment, because there is insufficient evidence it will benefit everyone enough.

It is expected that between 6,000 and 8,000 people with the condition will be considered for treatment, but fewer than 3,000 of them are likely to be given it in the end.

Genevieve Edwards, of the MS Society, said the announcement by NICE was a “landmark” moment and she hoped in time there would be the evidence available to show that the treatment was beneficial for more people.

Talks are under way to see if the treatment should be made available to primary progressive MS patients in the rest of the UK.

Bullied Out Of Home For Being Different

May 10, 2019

A family with two autistic children say they were driven out of their home as a result of a two-year campaign of bullying, abuse and physical assault. The authorities failed to help them, they say, and mistook the symptoms of autism for aggression and an unwillingness to co-operate. Charlotte Hayward went to see them.

“I’m not bad, rude, hyper or shy, I have Asperger’s. What’s your excuse?”

Lee is reading out to me what’s written in pink letters on his black T-shirt. He’s also wearing yellow earplugs, sunglasses and a hat. He himself would admit that it’s an unusual look, especially in grey, rainy Britain.

He says he bought a number of similar shirts because dealing with the police left him very frustrated.

“The police were so rude and judgmental and had no idea how to communicate or talk to us,” he says. “They just shut us up straight away.”

Lee is a father. He’s got five children, two of whom, like him, have a diagnosis of autism. His wife Penny can’t walk very far, and so sometimes she uses a mobility scooter or a wheelchair. They describe themselves as a “bit different”.

Two-and-a-half years ago they were offered an adapted new home by the housing association, LiveWest – to protect the family’s privacy the BBC is not naming where. They were happy to move but problems with neighbours began soon after they arrived.

“It started off with antisocial behaviour, and youths would come out and play football but they would come and purposely kick it at the vehicles and the windows. We started getting abuse from the parents, telling us we were odd and weird, and then we started getting blocked in,” says Penny, who is currently pregnant with her sixth child.

As she talks to me in the calm of the family’s cream-coloured living room, her children sit next to her, listening quietly. But it’s a difficult and upsetting story to tell, and she has to keep stopping.

“Every time we left the property, we got hurls of abuse, footballs kicked in our direction, even some of the youths saying they wanted to kill us.”

Bricks were thrown at them, she says, and through the windows.

“They’d shout at the girls – call them retards. They were harassing my husband doing hand flapping and mimicking his ear defenders.”

Over the course of two years, Penny made hundreds of complaints to LiveWest and Avon and Somerset Police. The police say these complaints were investigated and that several family liaison officers were assigned to the family, all of whom were rejected.

The family says they rejected the officers, because none had the skills required to talk and listen to autistic people.

LiveWest, the housing association, said in a statement: “Over a long period of time, there were accusations of hate crime made by the family along with many counter-accusations by local residents. We worked with the police and multi-agencies to investigate all these accusations where no action was taken by the police due to lack of evidence.”

Adding to the family’s sense of being abandoned by people who could have helped them, at the height of the tensions LiveWest revealed that it had accidentally sent sensitive information to the family’s neighbours by mistake. Medical information, previous addresses, schooling for the children, mental health assessments.

It was a catastrophic data breach and Penny says she was gobsmacked.

“I was… I didn’t know what to say. ‘What do you mean, you’ve sent them my whole file?'”

LiveWest says it has apologised to the family for the error.

The abuse culminated in an assault on the couple’s eldest son, Harry, who has Tourette’s syndrome and autism.

It was caught on the family’s private CCTV, which shows a handful of people outside the family’s house: Harry is leaning forward, perhaps talking, and then someone grabs him, pushes him against a wall and bends him forward over railings.

You can’t hear much on the short clip, and you can’t see what the build-up to this was or know the context.

“After the incident the autistic ones were having real severe meltdowns. It really affected them quite badly and of course the two youngest siblings witnessed everything. They were really distressed. We had a six-month-old baby as well. Harry particularly was punching doors and walls and cutting all his hands open, just pure frustration,” says Penny.

“Three hours after the assault the police came and knocked on the door and I couldn’t let them in. I couldn’t distress them any more, especially Lee because he wanted to protect his family. So Lee says, ‘I’m really sorry you can’t come in tonight, we’re trying to cope and get this family stable and secure and for an autistic person routine is everything. We said we’ll speak to you tomorrow. In the meantime, we’ve got CCTV for you.'”

Avon and Somerset Police wasn’t able to give the BBC an interview, but did say that it had been alleged that Harry had pushed someone before he was attacked. When officers asked to review all the CCTV, the family wouldn’t co-operate, a spokesman said. That meant that the assault, which would have been treated as part of an affray, couldn’t be investigated.

The family told me they had not kept the previous CCTV footage.

The police say they did arrange a meeting to go through all of the allegations after the assault but that Penny and Lee didn’t want to take part.

Penny says she didn’t feel any of the police officers had an understanding of what autism is.

“They made us appear to be unengaging, unco-operative,” she says. “We eventually paid an advocate to speak for us. They said we were aggressive, abrupt. If you know anything about autism, communication is the biggest issue.”


What is ‘normal’?

Harry, 19, was too distressed to be interviewed, but commented by email:

Not long after we moved in, people in the street started to bully me. I started to feel very socially awkward all the time and became a person with very low self-confidence. I got to breaking point and I didn’t understand all my emotions. I didn’t know how to feel and felt that I didn’t deserve to be on this planet where everyone judged me and mocked me.

I was subjected to violence and after this I became very depressed and now a year on I am still struggling. I don’t like leaving the house. I sit in my room with the lights off and curtains closed with no interest in anything any more. I feel like a stranger in my own home, my own body. I no longer know myself.

I feel as someone with autism I am judged and overlooked because of who I am and because I am different. But what is “normal”?


Avon and Somerset Police doesn’t train its officers specifically to deal with autism. It points out that College of Policing guidance doesn’t support condition-specific training, because officers cannot be expected to be “health or social care professionals”.

But that could be changing. Sgt Adam McCloughlin, the force lead for autism, has been working on a programme that would improve officers’ autism awareness.

“We know that autistic people are up to seven times more likely to come into contact with the criminal justice system. We know that is most likely as a victim or as a witness, certainly not as a suspect,” he says.

“There’s nothing to suggest that autistic people are more likely to break the law. Policing is one of those occupations where you only really ever tend to meet people in times of stress, when you’ve done something wrong or something unfortunately has happened. Emotions play a big part in the way autism presents itself. People that the police come across will be in emotional distress.”

He hopes the training will start this year.

“I think that we as an organisation make mistakes every day,” he says. “I’ve seen the complaints from the autistic community. I think the answer to those performance issues is just more awareness and more training. We’re not going to do any harm by reframing the way we think about vulnerability and other conditions.”

Penny and her family felt forced to move to a new home. They tell me that they’re safe but despite the police’s insistence that they tried to help the family, they feel completely let down.

“You go to the police because they are mean to protect you, you go to housing association, they have a duty of care to look after you… We had no family, there was no support network, just absolutely nothing.

DWP Ditches Three Year Sanctions

May 10, 2019

The government is to abolish “counterproductive” three-year benefit sanctions, in an official acknowledgement that depriving jobless people of social security income for long periods undermines their attempts to move into work.

The announcement, made by the work and pensions secretary, Amber Rudd, during a speech on employment on Thursday morning, was welcomed by campaigners and MPs, who encouraged her to make further changes to the controversial policy.

The move marks a sharp change of tone by the government, which has for years doggedly defended the sanctions regime as a way of persuading people into work, despite mounting criticism from MPs, academics and campaigners that sanctions are major drivers of poverty and hardship.

Sanctions withhold unemployment benefit as punishment for apparent infringements of benefit rules, such as failing to attend a jobcentre meeting, or not spending enough time looking for work. Most are imposed for four weeks, a loss of benefit income of about £300. Three-year sanctions are issued when a claimant has made three or more serious breaches of work-related requirements.

Sanctions are notorious among claimants for the way they are issued, often for seemingly capricious and absurd reasons, such as arriving at a jobcentre meeting two minutes late, or for missing an appointment after being taken to hospital after suffering a cardiac arrest.

Rudd said the three-year sanctions would be phased out by the end of the year. In a House of Commons statement, she said: “Three-year sanctions are rarely used, but I believe that they are counter-productive and ultimately undermine our goal of supporting people into work.

“I have reviewed my Department’s internal data, which shows that a six-month sanction already provides a significant incentive for claimants to engage with the labour market regime.

“I agree with the Work and Pensions Select Committee that a three-year sanction is unnecessarily long and I feel that the additional incentive provided by a three-year sanction can be outweighed by the unintended impacts to the claimant due to the additional duration.”

Three-year sanctions were introduced in 2012 under the auspices of the then work and pensions secretary Iain Duncan Smith and the then employment minister Chris Grayling as part of a severe tightening-up of benefits rules.

Sanction numbers increased rapidly as a result, reaching a high point in 2013 when over 1m were issued. In 2015, academics found a link between sanction levels and increased food bank use.

A major five-year academic study of welfare conditionality, published last year by the University of York, concluded sanctions were ineffective at getting jobless people into work and were more likely to reduce those affected to poverty, ill-health or even survival crime.

The National Audit office criticised the government’s sanctions policy in a scathing 2016 report, which concluded ministers had no evidence to show that sanctions worked, and no interest in finding out the effect on individual claimants. Disabled people who were sanctioned were less likely to find work as a result, it found.

Official figures published by Labour indicated that 32,647 claimants had been issued with sanctions of more than six months duration since 2012. Some 20,000 of these were accounted for by people on universal credit.

Margaret Greenwood, the shadow work and pensions secretary, said Labour would scrap the sanctions regime. “There is clear evidence that sanctions and excessive conditionality do not help people into sustained employment. They also cause stress and anxiety for many and are one of the key reasons that people ask for help at food banks.”

The sanctions expert David Webster, of Glasgow University, welcomed the move and said he hoped it was a sign social security policy was beginning to be guided by evidence rather than ideology.

Frank Field, the chair of the work and pensions select committee, said: “Today’s announcements are a step in the right direction – gone are the days of those appalling three-year sanctions – and show she has not been put off by the size of that task, but there is still very much to do.”

Alison Garnham, the chief executive of Child Poverty Action Group, welcomed the change: “We hope today’s announcement will be followed by a review of the sanctions system overall because all the evidence shows it is overly harsh and counterproductive for claimants.”

The Blind Artist Creating Tactile Art

May 9, 2019

Clarke Reynolds is an artist who uses sound and touch to bring his art to life for visually impaired people.

He previously worked as a dental model maker, before losing his sight through an incurable, degenerative condition called retinitis pigmentosa.

The Portsmouth-based artist says his partial blindness is “like seeing the world underwater”.

Clarke now has two residencies at galleries in the city and has given a talk at the Royal Academy of Art in London.

He says he wants art galleries showing his work to put up signs saying: ‘Please DO Touch’.

Disabled Beauty Blogger On Online Abuse

May 9, 2019

Is our legal system failing victims of online abuse?

Beauty blogger Tess Daly says trolls targeting people with disabilities aren’t being held to account.

A Review Of I Can, I Will By Mark Esho

May 8, 2019

I Can, I Will is the autobiography of Mark Esho, a Nigerian polio survivor and entrepreneur who has run many successful online businesses, particularly Easy Internet Solutions, and has recently set up a Youtube channel.

One of the first things I noticed, and one thing I particularly like, about the book is that there are Reflections sections after each chapter, and each chapter ends with a well-known inspirational quote.

 

Mark Esho was born on Friday, 17th August 1962. His Nigerian name is Yomi.

 

His mother, Titilayo, was born Muslim and converted to Christianity aged 15. She travelled to the UK from Nigeria in 1960 and met his father, Michael, on the boat.

Michael was an abusive, controlling, womanising man- first to Titilayo and later to Mark and his siblings.

At just six months old, Mark was privately fostered out to the Archer family in the UK, who had ‘hearts of gold,’ because his parents were students and couldn’t cope with a baby. Mark felt that he didn’t have a bond with his own parents, and loved Mrs Archer as his own mother. His younger sister, Ronke, also came to live with him at the Archers’ home, as their parents could not support her either. However, as his mother’s favourite, she was taken back to Nigeria with her parents when they left the UK, while Mark stayed with the Archers.

 

Aged almost 5, soon after getting a bike that he had really wanted and loved, Mark’s life changed forever when he contracted severe polio and was paralysed. Mrs Archer, who loved Mark unconditionally when he was a child, had also had polio, which had left her with a limp.

 

One of the most moving moments of the book comes when Mark describes how he was traumatised by the treatments for polio and would beg not to have injections. He describes feeling rage at being struck down by polio.

 

He first describes facing racism from the other children in hospital, who would call him racist names. However, his worries about racism became insignificant when he was given a wheelchair, which couldn’t be hidden.

 

At 7, released from hospital, Mark returned to the Archers’ home, which was adapted to meet his needs. He had missed five years of school.

 

Mark describes how his father wanted to abandon him because he was ashamed of his severe disability. Knowing what unconditional love is, Mark couldn’t understand this.

 

At 8, he went to Ashfield Special School, where there was no focus on education, but on playing and colouring in. As someone who has been disabled since birth and who attended a similar special school in the 1980s, I particularly related to this description, which brought back unpleasant memories of my own time in special education.

 

He describes his callipers and other rehabilitation aids. He found the callipers frustrating, but was also grateful for them because they allowed him to walk again.

 

Outside Ashfield School, Mark was stared at. He felt a conflict- he didn’t wasn’t to be different but he didn’t want to be overlooked either. He describes how his father felt even more shame because he was attending a special school in the UK, so he was taken back to Nigeria.

 

He grieved the loss of his family, the Archers, and his friends from the UK. He felt like he belonged with the Archers, and that his birth parents were strangers with whom he had no bond.

 

He got on the plane to Nigeria with his mother, but without his wheelchair. After landing, he became hysterical.

 

He describes the ‘startling’ difference that he felt between his homes in England and Nigeria, especially in the love. The way of life in Nigeria was ‘strict and harsh,’ particularly his father’s nature. He disliked Lagos, finding it busy, hot, dusty and noisy, and he didn’t speak the language.

 

One night, in the middle of the night, his father took him to a witch doctor. He experienced tribal cutting, which was very painful, and other rituals, all of which traumatised him.

 

His father wouldn’t let him use a wheelchair, so when his callipers broke he had no aids for movement.

 

His mother studied in France and while she was away, Mark says, the children had many ‘aunties.’ One was abusive towards Mark. His father kicked her out of the family home immediately.

 

He describes how he was carried to his mainstream school in Nigeria. This made him feel different- another feeling I personally related to.

 

He describes how the children used to take cakes to school on their birthdays. However, Mark couldn’t afford cakes, so he lied that it wasn’t his birthday, because he felt different.

At school, he was unable to take part in playground games so would do nothing but study. This meant that he was accelerated, completing his primary education in three years rather than the usual five.

 

He describes how he now thanks his father for refusing to let him use a wheelchair, because this forced him to start walking. He sees this as a silver lining to a very heavy cloud.

 

His father was a Jekyll and Hyde character, loved by outsiders, but Mark himself ‘lived in constant fear of a beating’ from him.

 

His father sent him to an international school in Nigeria just to show off, where he experienced a ‘nightmarish year’ of bullying, which he hated. The school facilities, particularly the sanitation and toilets, were poor. However, while school was a challenge, home life was a disaster.

 

One day, aged 13, Mark’s father beat him up for hours because he wasn’t coping at school. After that incident he hated his father even more. At one point he even took paracetamol from the cupboard to try to kill himself.

 

After a year at the International School, he spent five years at a Catholic school called Loyola College. He experienced bullying there too, but he had toughened up, so reacted differently to it. He was popular at the new school, and describes how he found his entrepreneurial streak there, selling comics and books. However, his popularity meant he neglected studies and repeated a year. His father beat him up for his poor results and would “help” him study after that, beating him up if he got anything wrong.

 

He describes how he used to pray that his father would have an accident, so that he wouldn’t have to see him again, but he felt guilty about these feelings.

 

He describes how Sports Day at school made him feel excluded because he couldn’t participate.

 

He describes how, when he liked a girl, his mother told him that the girl would never be interested in him. He was hurt by this and felt that his mother didn’t understand unconditional love.

 

He describes how his father was ‘mean with money’ for his family, and made him wear old clothes.

 

His father married a second wife in 1978. He kicked his mother out of the family home and also wanted to kick the children out but they were allowed to stay in the end.

In 1980, aged 18, Mark returned to the UK to do his A Levels in Leicester, but he found that everyone had changed. He had to cut all contact with the Archers after their children blamed him for Mr Archer’s sudden death. He faced racism in Leicester and decided to leave Leicester and college after a few months.

 

His parents were supportive about the racism he faced because they had had similar experiences. With his father’s permission, he moved to London to do A Levels in Maths and Economics. However, he started partying and neglected his studies, focusing instead on a DJing business, Ebony and Ivory, with his closest college friend.

 

After he failed his A Levels in London, his father forced him to go back to Nigeria for two years. He studied at a polytechnic he liked, lived with his grandmother and made new friends. He gained a Btech in Accountancy and returned to the UK in 1984 where he moved in with friends and girlfriends.

 

He met his future wife, Diana, in 1986, and felt ‘instantly accepted’ by her. She moved in with him within a few weeks. This was his first ‘loving relationship.’ Although they faced racism from the public as a mixed race couple, her mother and grandmother accepted them.

 

He faced racism from the police as ‘a black man in a car.’

 

Their first child, a son named Ren, was born in 1989. Mark couldn’t understand Diana’s bond with the baby as he had missed out on it with his own mother.

 

As is normal in Nigerian culture, Ren went to live in Nigeria as a toddler to be raised by his grandmother. This was a huge sacrifice for Diana but made the Esho family respect her more.

 

After studying for an MA, Mark became the only black employee at a disability charity, where another employee disliked him, and even rang the university to confirm his qualifications.

 

Their first home gave Mark a sense of security, but they faced racism from the neighbours from the start.

 

He describes developing post-polio syndrome, an after-effect of polio which causes fatigue.

 

He describes how he loved the Internet as it made him feel connected to the world. He set up his first online business in the early 2000s. The only really negative thing I have to say about the otherwise very interesting book is that Mark talks about his online businesses, from this point onwards, in a bit too much detail for my liking.

 

Mark and Diana have a daughter, Esmee, who is 13 years younger than Ren. They got married on her first birthday, 24th July 2003.

 

He faced racism yet again when he went to buy his dream car, a BMW, and was asked to leave the showroom from the back entrance.

 

One of his employees, Mike, was racist towards Mark but was sensitive to his disability.

 

He describes his interesting side businesses, which included a disability dating website called Cupid Calls and a gay dating website called Gay Arrangement.

 

He faced racism and disablism from his employees. One used to insult him on Internet forums and another offered to run the business for him while he stayed at home.

 

He realised how far he had come when he was nominated for the Entrepreneur of the Year National Disability Award.

 

The Disability Confident campaign inspired him to help more disabled people into work, which is now a passion of his.

 

Towards the end of the book, he describes how he has carpal tunnel syndrome and a benign tumour in his hand as well as post-polio syndrome.

 

The book ends with his final reflections, of things he would tell his younger self and advice he would give to his children.

 

In the final chapter, titled Karma, Mark describes how his father lost all his money and got bowel cancer.

 

The great length of this review perhaps shows you how much I related to, learnt from and enjoyed this book. I recommend it highly, particularly to disabled people and parent carers who want to be inspired by a disabled person’s attitude to their disability. Mark Esho is an interesting, inspirational man and this book will leave you in  no doubt that he can, and will, do and achieve anything he puts his mind to.

Drag Syndrome To Perform At Glastonbury

May 8, 2019

Meet Drag Syndrome – the outspoken performers with Down’s syndrome who are creating a stir on the drag scene.

These drag queens and kings were brought together in 2018 by choreographer Daniel Vais, to provide a platform for performers with learning disabilities and to challenge stereotypes.

They have received criticism along the way, but with a performance at Glastonbury coming up, could they be about to hit the big time?

A video by Richard Kenny, Niamh Hughes and Natasha Lipman. For more videos and podcasts like this, visit BBC Ouch.

PIP Complaints Against Nurses Not Being Properly Investigated Says Watchdog

May 8, 2019

With many thanks to Benefits And Work.

The Professional Standards Authority (PSA) has found that the majority of complaints against nurses carrying out PIP assessments are not being properly investigated, Disability News Service has reported.

The Nursing and Midwifery Council (NMC) is the body responsible for looking into complaints against nurses.

The PSA decided to look into the issue of PIP assessment complaints against nurses after being informed that, out of 83 complaints in 2017-18, just two had led to a full investigation by the NMC.

The PSA carried out a review of a sample of 28 of the investigations and discovered that almost every one had not been properly conducted.

A shocking 26 cases were closed at the very earliest screening stage, one was closed by case examiners with no further action and only one led to a nurse being issued with a warning.

Amongst the problems found by the NMC were:

  • a refusal to consider all the issues raised by complainants;
  • relying on the findings made by Atos and Capita to justify closing cases;
  • failure to consider crucial documentary evidence;
  • ignoring evidence from complainants;
  • failure to ask complainants for further evidence.

The PSA came to the conclusion that the handling of 24 out of 28 cases “might undermine confidence” in the NMC.

They also found that the NMC’s failure to properly do its job in two of the cases “might not be sufficient to protect the public” and it was unable to reach a conclusion on public protection in no fewer than nine of the other cases.

Andrea Sutcliffe, NMC’s chief executive, said in a statement:

“I’m sorry that our approach to a small number of PIP related cases fell short of what is expected.

“Our failure to fully address the concerns of some people making complaints and the lack of clarity in our decision making was not good enough.

“Since 2018 we have taken action. This includes additional training for those making and communicating case decisions, as well as a new quality assurance approach to the way we initially review cases.”

You can read the full story on John Pring’s Disability News Service website

Universal Credit Regulations Ruled Unlawful By High Court

May 7, 2019

Government regulations that would leave thousands of people with severe disabilities worse off by about £100 a month as a result of moving on to universal credit have been ruled unlawful in the high court.

The ruling followed a legal challenge to the Department for Work and Pensions (DWP) over arrangements for claimants who were receiving severe disability premium (SDP) benefits and moved on to universal credit before 16 January this year.

Two men known as TP and AR, and a woman known as SXC, who all have severe disabilities, had argued that the regulations, which restrict the amount of compensation to those affected, were discriminatory.

The challenge followed a court case last year in which TP and AR successfully argued that the DWP had unlawfully discriminated against them after their benefit income was reduced when they were required to claim universal credit because they had moved house into a different local authority area.

As a result of that case TP and AR received £6,517 and £4,788 respectively, in compensation for the “pain and distress” caused to them. They also received payments of £173.50 and £176 a month respectively to meet the continuing shortfall in their benefits.

The government subsequently proposed regulations whereby SDP claimants who lost benefit income after moving to universal credit before the establishment of income protections on 19 January would be provided with just £80 a month in compensation, while those who moved after would receive £180 a month.

TP and AR, represented by the law firm Leigh Day, and SXC, represented by Central England Law Centre, argued that the discrepancy was unjustified because the estimated 10,000 people who moved before 19 January would receive significantly less in compensation than those who moved afterwards, despite their needs being the same.

Severe disability premium and enhanced disability premium are supplementary benefit payments designed to meet the extra costs of living alone without a carer. An estimated 500,000 people in the UK receive one or both payments.

TP and AR said in a statement after the ruling: “After the high court judgment last year, we thought we had finally forced the government to ensure that people with severe disabilities who had to move on to universal credit from the old system would not be without adequate protection or worse off.

“However, we then learned that the government was proposing to short-change us and thousands of other severely disabled persons by around £100 a month. It is extremely frustrating that we have had to fight these cases through the courts when it is clear to all that the government’s unfair and dysfunctional universal credit system is indefensible.”

Tom Short, a solicitor with Leigh Day, said: “We are delighted that our clients have once again triumphed in their struggle against the government’s discriminatory universal credit policies.”

Michael Bates, who led on the case for Central England Law Centre, said: “This is a really important decision from the court. It confirms that the government’s universal credit scheme continues to treat severely disabled claimants differently, and that this treatment is unlawful. There is an obvious solution to this and we look forward to seeing the government’s response.”

A DWP spokesperson said: “We have received the court’s judgment and will be considering our response.”

Half Of Disabled People On Low Incomes Experienced Food Insecurity In 2016 Finds Study

May 3, 2019

More than half of people who suffered from a long-term illness or disability in 2016 suffered food insecurity, according research which has prompted renewed concerns about a “hunger crisis” in the UK.

The problem, which arises when people cannot afford to buy enough to eat, has almost doubled among the least well off in the last five years, according to the study, published by the British Medical Journal (BMJ). 

An analysis of survey data, originally published online in the Journal of Epidemiology & Community Health, showed the rise was even steeper among those living with a longstanding illness or disability – with 53.5 per cent of this group experiencing food insecurity in 2016.

The study, which compared data from that year’s Food & You Survey (F&Y) with data from the 2004 Low Income Diet and Nutrition Survey (LIDNS), found that some people were going whole days without eating.

Veronica Woods, 52, who suffers from functional neurological disorder (FND), said she often has to skip meals in order to make sure her children could eat after the government stopped issuing her Personal Independent Payment (PIP) last year.

The mother-of-two, who lives with her two teenage boys, aged 16 and 19, said she had not been able to afford a proper food shop since she was discharged from hospital following a fall caused by her condition two weeks ago.

“We’ve been struggling,” she said. “The three weeks I was in hospital I had to take a £250 overdraught so the kids could feed themselves. Going food shopping is not an option at the moment, we just can’t afford it.”

Ms Woods, whose husband passed away suddenly four years ago, said that since losing her disability benefit she receives £200 a fortnight in bereavement benefit, £53 a week in child tax credits, and £20 every week child benefit – amounting to just £173 a week.

 “My 16-year-old son has been eating pasta and tins of tuna. I try to get eggs, bread and milk – the basics, to keep us going until we can afford to do a big shop. Since I got out on 11 April, I haven’t done a proper food shop. Money has been a real problem,” she added.

“The boys get priority. I’ve skipped a lot of meals. I do feel hungry but there’s too much going on in my head to worry about it. The GP gave me some vitamin drinks – I take one of them instead of a meal.”

Ms Woods, who lives in Manchester, said that after being admitted to hospital her weight dropped from 11 and a half stone to just eight stone over a period of six weeks. She is appealing the decision to stop her PIP, but has been told it won’t be heard until next year.

“I was on the highest rate and they put me on zero. I’ve lost my car. It’s made me not want to go outside. I have good days and bad days – and on the bad days I have seizures and my speech gets messed up. It’s very scary for my children,” she added.

Shadow work and pensions secretary Margaret Greenwood said the “shocking” report highlighted the scale of the UK’s hunger crisis.

“Food insecurity simply should not exist in one of the richest countries in the world. Yet this report suggests that the number of people going hungry is increasing as a result of changes to the social security system,” she added.

The report states that the “rising vulnerability to food insecurity” observed in the survey suggests the “poorest in the UK are worse off today”.

“While the Great Recession also occurred between 2004 and 2016 and may have contributed to a rise in food insecurity at that time, by 2016 the UK was no longer in recession. By contrast, welfare reform continued, the effects of which were keenly felt by those with longstanding illnesses,” it adds. 

“Food insecurity has certainly always existed in the UK, but in light of the welfare changes that occurred over this period, it is possible the current social security system is providing increasingly inadequate protection from food insecurity for more and more people.”

The researchers who produced the findings cautioned that it was an observational study, and as such cannot establish cause, but that if anything, the observed increase in food insecurity among those on low incomes was likely to be an underestimate.

It comes after figures from the Trussell Trust revealed last week that food bank use had soared to record levels, with the number of emergency supplies distributed across the UK having risen by nearly a fifth in one year,

Genevieve Edwards, director of external affairs at the MS Society, said the charity was increasingly hearing from people with MS that they’ve had to cut back on food and other essentials because of problems with disability benefits.

She added: “More than 100,000 people live with MS in the UK and our research shows 39 per cent of those who lost PIP support spent less on food as a result. We’ve also heard from people who turned to foodbanks after struggling with universal credit. It’s simply unacceptable that disabled people in the UK today can’t rely on our welfare system to provide the most basic level of financial security.”

Jess Leigh, Policy and Campaigns Manager at disability equality charity, Scope, said the findings were “further shocking indications of the dire impact extra costs can have on disabled people”.

She added: “Life costs more in you are disabled […] Disabled people often have no choice but to spend more on essential goods and services like heating, therapies and equipment.

“We need a welfare system that recognises these extra costs and provides disabled people and their families with the financial support they need.”

A government spokesperson said: “No family should have to experience hunger and tackling disadvantage remains a priority. Whilst we’ve seen food insecurity fall over the last few years, we recognise we need to do more.  

“That’s why we’re supporting over 1 million children with free school meals, investing up to £26m in school breakfast clubs and spending more than £95bn a year on working-age benefits. Meanwhile employment is at a record high and wages are outstripping inflation.”

Hinds To Seek Views On Funding For Children With Special Needs

May 3, 2019

Damian Hinds is to call for a fresh look at educational funding for children with special needs in England, as concerns grow that schools and families are struggling to receive support.

The education secretary will make the announcement at a conference of the National Association of Head Teachers (NAHT) on Friday. It comes as the Department for Education prepares its case to the Treasury for improved funding for schools as part of the spending review in autumn.

“I want to make sure we have the best understanding of how our system for funding children with high needs is operating on the ground, and whether there are improvements we can make so every pound of public money we spend is building opportunities for young people,” Hinds is to tell headteachers.

The DfE will launch a call for evidence on funding arrangements for pupils with special educational needs and disabilities (Send) that will run until the end of July.

Paul Whiteman, the NAHT’s general secretary, said he welcomed Hinds’ announcement because the funding crisis in schools could not be solved without improving support for special needs.

“Not only are school budgets at breaking point, there have been severe cuts to local authority health and social care provision. Schools are left struggling to meet the needs of our most vulnerable pupils,” Whiteman said.

“But ultimately the solution is simple: more money from the Treasury is urgently needed, both for schools and health and social care services.”

The government argues funding has increased since the introduction of individual care plans for Send pupils in 2014. But the number of children requiring support is continuing to rise, while school and local authority budgets are under pressure.

In recent years, local authorities have been cutting back on special needs provision, leading to a series of legal actions by parents to secure their children’s entitlement. The Local Government Association (LGA) estimates councils in England face a Send funding gap of more than £500m this year.

The DfE’s figures show there are nearly 120,000 children with education, health and care plans (EHCP) in mainstream schools, and 112,000 are in special schools, a 24% rise in the past five years.

The headteachers’ conference in Telford will also hear how schools are struggling to find qualified staff, including ones that report being unable to fill leadership posts or recruit Send teachers.

One-third of the headteachers surveyed by the NAHT said they were struggling to replace staff due to the number of teachers leaving the profession, making retention of experienced teachers a growing concern.

Whiteman said “the facts are no longer in dispute” that teachers are leaving in increased numbers, and blamed accountability pressures, insufficient funding and real-terms cuts to teachers’ pay.

The DfE said the education secretary’s “top priority is to make sure teaching remains an attractive and fulfilling profession”, having launched a teacher recruitment and retention strategy.

Disabled Women And Healthcare Access

May 2, 2019

Half Of The Longest Marriage Of People With Downs Syndrome Dies Aged 56

May 2, 2019

Greta Thunberg, Autism And The Media

May 2, 2019

DWP Has Begun Feasibility Testing Of Combined PIP And ESA Assessments

May 1, 2019

With many thanks to Benefits And Work.

 

The DWP has begun testing the feasibility of creating a single assessment for personal independence payment (PIP) and employment and support allowance (ESA), the government has confirmed this week.

Responding to a question about whether the DWP “have opened consultation on merging Personal Independence Payment and Employment and Support Allowance assessments” Baroness Buscombe, parliamentary under-secretary at the DWP responded:

“In their responses to the 2016 Improving Lives: Work, Health and Disability Green Paper consultation and through several other forums, stakeholders have raised concerns about the feeling of duplication across the current assessment processes. We have therefore been exploring options to reduce this, and make improvements to the customer experience. By testing the feasibility of a single assessment for Employment and Support Allowance/Universal Credit and Personal Independence Payment we can seek to understand if it will improve the assessment process for our customers, and ensure that they still get the right decision.

“The design of the feasibility test will be informed by existing evidence and through our continued engagement with external stakeholders and disabled people themselves using existing forums, between now and over the course of Summer 2019. Beyond this we are continuing to work with stakeholders on other improvements to the assessment process, including the introduction of an integrated service, and reform of the Work Capability Assessment.”

The written answer is available from the parliament website

Sarah Newton lied to parliament and the public about the DWP’s standardised letter to GPs following ‘fit for work’ assessment

April 30, 2019

Kitty S Jones's avatarPolitics and Insights

newtonSarah Newton, former minister of state for disabled people. However, it’s very evident that neither she nor her party actually support disabled people. They prefer oppressing them.

Last month and previously, I reported about the controversial issues raised by the Department for Work and Pensions’ standard ESA65B GP’s letter template, which was only relatively recently placed on the government site, following a series of probing Parliamentary Written Questions instigated by Emma Dent Coad, addressed to the minister of state for disabled people.Her responses to the questions were repetitive, vague, unevidenced and did not address the questions raised. 

Campaigners and MPs have called for the Department for Work and Pensions’ (DWP) amended letter to GPs to be scrapped after it emerged that ill and disabled people appealing against unfair work capability assessment (WCA) decisions were left in near destitution after their GPs refused to provide further ‘fit notes’, because they were instructed that they…

View original post 2,915 more words

DWP Sick Note Advice Endangers Patient Health Say GPs

April 30, 2019

The health of vulnerable patients may be being endangered by benefit advice given to GPs by the Department for Work and Pensions (DWP), doctors have warned.

Medical bodies said they were “deeply concerned” about government letters informing them that they no longer need to issue “fit notes” to refused benefit claimants. 

Issued to doctors since 2017, they raised concerns about the potential impact of the letter, called an ESA65B, on potentially vulnerable patients. 

Experts said the letter fails to make clear that if the claimant is challenging the decision in relation to Employment Support Allowance (ESA), they still need the medical evidence from their doctor.

In a letter to the DWP, chair of the Royal College of General Practitioners (RCGP), Professor Helen Stokes-Lampard, said: “Without a fit note from their GP, claimants who are awaiting the outcome of their appeal will not be able to receive ESA.

“They would therefore have to seek universal credit or jobseekers’ allowance, and subsequently try and meet the work-seeking requirements of those benefits, potentially endangering their health in the process. As such, the college is deeply concerned about the potential impact of this on doctors and their relationships with potentially vulnerable patients.”

The British Medical Association meanwhile said in a separate letter to the Work and Pensions Committee that it would be “helpful to revise the wording” of the ESA65B to “ensure greater clarity”.

signed off by chair Peter Holdren and deputy chair Mark Sanford-Wood, it states: “We believe that DWP should consider consulting with a range of stakeholders, including the BMA, to achieve this aim.”

The correspondence was released by the Commons Work and Pensions Select Committee, which had asked the RCGP and BMA whether they had agreed to the wording of ESA65B.

The DWP said the medical bodies had agreed to the revised wording of the letter on 4 August 2016.

But the RCGP said there was some “ambiguity” about what was said in the referenced meeting with the DWP, and said it was “deeply concerned” about the guidance.

It comes amid growing concern around the DWP’s work capability assessment, with campaigners and disabled people saying it too often deems sick people fit to work.

Stephen Smith, who made headlines earlier this year when photographs emerged of him emaciated in hospital after he had been deemed “fit for work”, died last week, prompting claims that he and many others had been “let down” by the welfare system.

A DWP spokesperson said “clear guidance” had now been issued to GPs and talks were taking place about a revised version of the ESA65B.

The spokesperson said: “We have regular discussions with the BMA and RCGP to ensure we deliver effective support to disabled people and those with health conditions.

“The wording of this letter was discussed as part of these meetings, as both organisations confirm, as was the release of the final letter. Of course, we recognise the concerns of GPs which is why we are discussing a revised letter with the BMA and RCGP and have issued clear guidance for GPs in the meantime.”

Liverpool University Accused Of Disability Discrimination

April 29, 2019

A UK university is accused of “disadvantaging disabled students” after charging for long-term assignment extensions due to medical needs.

One University of Liverpool student was unable to afford the £200 “tuition fee”, and was locked out of her student account with “no access” to emails or documents for her dissertation.

She said the institution “had not been accommodating or sympathetic”.

The university apologised and said it was reviewing its policy.

‘Trying my hardest’

One postgraduate student, Felicity, told the BBC’s Victoria Derbyshire programme she provided evidence from doctors to show the extension was required for medical reasons, meaning it was granted by the university as an “extenuating circumstance”.

“I’ve not extended my studies because I want to have some more time to do my work. It’s because I need it,” she explained.

“It’s the one thing that would have made my life easier, given all the health problems I’ve got.

“I’m trying my hardest to finish my work as it is – which has been pretty difficult.”

The university’s policy states that students face a fee for extending their studies into a new academic year, even if they need the extra time because of personal or medical reasons – also known as extenuating circumstances.

Felicity and fellow student Kayley – who have a range of mental and physical health conditions – were charged £50 for a three-month extension, which rose to £200 when they asked to extend further.

Felicity said she felt it could amount to discrimination, as such an extension could be considered “a reasonable adjustment,” which has to be implemented under the Equality Act 2010.

The university said Felicity had “received a number of short-term coursework extensions as reasonable adjustments”. It said Kayley was not registered as disabled with the university.

It added: “In line with university policy, a £50 tuition fee charge is applied for each three-month extension period, which covers access to study services as well as tuition and supervision.

“We are reviewing this policy.”

Inaccessible rooms

The programme has also heard of wider issues surrounding disability support at the University of Liverpool.

Nana, who has cerebral palsy and uses a wheelchair, said her requirements were not always met.

She has been scheduled into inaccessible rooms “five or six” times.

And she added that when lecture theatres are accessible, “there tends to be something wrong with the rooms”.

In one, it was not possible to see the lecturer due to frosted glass.

“That kind of speaks to how the wider society treats disabled people,” she said, “because they hide them away and put them in a corner so you don’t have to deal with them.”

A recent Freedom of Information request revealed that only 57 out of more than 100 buildings at the University of Liverpool were fitted with general use lifts, meaning many are inaccessible for disabled students.

The University of Liverpool told the BBC: “We are sorry that Nana has experienced a number of occasions where rooms have not met her needs and sincerely apologise for the use of frosted glass in a designated space for wheelchair users. This has now been rectified.”

For Julia, who has various health conditions that require additional support, including the hypermobility form of connective tissue disorder Ehlers-Danlos Syndrome (EDS), support from the university was “extremely inconsistent”.

EDS causes her chronic pain, and even climbing stairs can cause her joints to partially or fully dislocate.

Her support plan says she is supposed to have an ergonomic chair, but this did not happen during her exams.

“It was physically a test of my pain tolerance, and not my academic ability.”

The chair she was given, she said, “did cause my hip to move and cause my sciatic pain and other muscular pain to shoot from my toes all the way to my neck”.

She said it makes her more stressed about future assessments, “because I know going into situations now that the support is probably not going to be there”.

Despite having chronic fatigue syndrome and advice saying it should not happen, she said she was also scheduled to sit two exams in one day.

The university said it currently had more than 3,000 disabled students and worked hard to provide them with individual support.

Paul Redmond, director of student experience and enhancement, said: “Some of these accounts show that there are occasions where we have fallen short and we apologise sincerely where this has been the case.

“We will in future be involving disabled students more regularly in our reviews and decision-making processes to help ensure the high standards we aim for are consistently maintained.”

Assessments ‘Like Psychological Rape’

April 29, 2019

A Labour MP says she has been told benefits assessments are like “psychological rape”.

Laura Pidcock said the system for assessing people’s rights to benefits amounted to “institutionalised bullying and harassment”.

Work and Pensions minister Justin Tomlinson accepted it could be improved and said this was a “real priority”.

But Ms Pidcock, the MP for North West Durham, said private enterprises and illness were “incompatible”.

She had received a “vast number of submissions” from constituents and people using the system, she said.

“One person said that this process feels like psychological rape, expressly designed to make you feel like you are the absolute property of the state, that you are not human, and that your continued survival is a basic affront to society,” she said.

‘Focusing on improving’

Speaking in the same parliamentary debate, Labour’s shadow work and pensions minister, Marsha De Cordova, called for private companies to be stripped of assessment work.

“Since 2010 more than £1bn has been paid to private contractors including Atos and Maximus and all of those providers have repeatedly failed by the DWP’s (Department for Work and Pensions) own performance standards,” she said.

“But despite their failures, the DWP recently announced they will be extending the contract for Maximus, and that contract will be extended until 2021.”

Mr Tomlinson said the DWP was focusing on “improving the operational process”.

Those involved were being given better training, he said.

He was committed to helping people “claim the benefits they are entitled to and to ensure people are treated fairly and with dignity”, he said.

Heart And Soul: Christianity And Disability

April 29, 2019

Like many disabled people, Damon Rose is regularly approached by Christians who want to pray for him to be healed. Would-be healers claim they’re simply doing what Jesus himself did and what he instructed his followers to do. They may mean well, but the experience can leave disabled people feeling judged as ‘faulty’ and in need of repair. Is this really what Christianity teaches about disability? In this programme, Damon (a blind journalist and open-minded non-believer) investigates different Christian approaches to disability, combining cutting-edge theology with personal stories of faith, hope and human frailty. He joins a group of Christians as they offer healing on the street, attends a healing service and meets the disabled Christians carving out a new ‘theology of disability’.

Deaflix

April 29, 2019

Same Difference has just heard of Deaflix.

It looks, to us, like Netflix in Sign Language. We may be late to the party, but we thought readers who speak Sign Language may find it useful.

Family Of Wheelchair User Accuses London Marathon Of Discrimination

April 26, 2019

London Marathon organisers have been accused of discrimination over their policy of excluding assisted runners.

David and Sandra Kerr from County Down have run 35 marathons pushing their son, Aaron, in his adapted wheelchair.

The Kerr family had asked London Marathon organisers if they could compete but were told it would be against the rules.

“An individual cannot be considered unless they are participating under their own power,” said organisers.

Aaron Kerr, 21, from Annahilt, does not speak, communicating solely through body language.

He has a series of complex needs including cerebral palsy, epilepsy and a chromosome disorder which means he uses a wheelchair.

Aaron was also born with chronic renal failure which resulted in a kidney transplant at the age of 13; his dad David was the donor.

Keep on running

David and Sandra are Aaron’s full time carers and in 2015 they caught the running bug.

“We started running in 2015 with a few park runs and we haven’t looked back since, we haven’t stopped running since,” said David.

The family has completed in almost 150 running events, including 35 full marathons, such as Manchester, Belfast and Dublin.

They couple try to promote inclusivity and say their slogan is “running and rolling together”.

“We just love spending time together as a family, it’s quality time for us,” said Sandra.

“It’s great seeing Aaron about in the fresh air.

“For kids with complex needs, as they get older, stuff gets taken away from them, and it’s hard to find things that as a family you can enjoy.

“The only thing that doesn’t go away is disability.”

The family has wanted to take part in the London Marathon, but so far that hasn’t been possible.

“It’s incredibly frustrating, the reason that they are giving to us is that Aaron can’t complete the marathon on his own,” said David.

IAAF rules state: “A competitor can be helped to an upright position, but that they cannot be helped in a forward motion.”

‘Very upsetting’

The Kerrs say they have taken part in other IAAF events and aren’t bothered about being competitors – they just want to take part.

“We’ve spoken to the IAAF ourselves and they have said that Aaron can take part as a non-participant (meaning his time would not be counted) at London’s discretion,” said David.

“We just see it as discrimination against Aaron and it’s very upsetting.”

The family had hoped to run in a charity place with the Mae Murray Foundation, but when it found out that the Kerr family would not be allowed to enter the charity declined their offer to take part.

The group’s director, Alix Crawford, called on London Marathon organisers to explain “why it is lagging behind other major marathons by continuing to exclude certain disadvantaged groups of people from within society from taking part.

“It is astonishing that the London Marathon, one of the UK’s flagship sporting events, should take a stance against the inclusion of those with profound and lifelong disability,” she said.

The charity has protested by giving up its space and has asked London mayor Sadiq Khan to intervene.

Nick Bitel, Chief Executive of London Marathon Events Ltd, said organisers had explained the rules to the family “in some detail”.

“An individual cannot be considered a competitor in the London Marathon unless they are participating in the event under their own power,” he said.

“Some races do permit non-competitors to be pushed or carried. Every race is different. The London Marathon has high runner density, some very narrow roads on the course and some steep hills.

“This is a combination that other events may not have.

“London Marathon Events is proud of all it has done to develop and promote para-sport and always works to encourage participation in our events by people with a disability.

“We support many, many people with a disability to complete the London Marathon – just not when they are being pushed by another person, as this contravenes the rules.”

In the meantime, the Kerr family is continuing to train for marathons that they are able to part in – starting with the Belfast City Marathon next weekend.

Carer Overpayments Were Caused By DWP Staff Shortages

April 26, 2019

Staff shortages at the Department for Work and Pensions have led to thousands of carers being overpaid benefits that they could be repaying for years, a report by the government’s spending watchdog has found.

In some cases, carers face repaying more than £20,000 they received in error, a task that could take 34 years, the National Audit Office (NAO) said.

In 2018-19, the Department for Work and Pensions (DWP) detected 93,000 overpayments of carer’s allowance, compared with an average of 41,000 a year in the previous five years. The NAO said the department was detecting “significantly more” overpayments because it had recently put in place more people and new systems.

While many overpayments were for just one week, some went on for more than a decade before they were discovered. At the end of March, 133 people owed more than £20,000.

Frank Field MP, chair of the work and pensions committee, said the report “devastatingly laid bare the incompetence at DWP, and its stark human cost”.

Carer’s allowance, now worth £66.15 a week, can be claimed by those who provide at least 35 hours of care to someone who receives a qualifying disability benefit.

But carers do not always realise that the sum they receive is linked to their earnings, and that if they take home more than £123 a week the allowance stops, or that studying more than 21 hours a week is a bar to claiming.

Carers have to give details of their earnings when they apply, but can be caught out when their circumstances change.

The NAO found that staff shortages meant that many people who had notified DWP about changing circumstances had not had their details processed.

In November 2018, the department had 104,000 unprocessed change in circumstances notifications. It said that these delays meant that overpayments had not been dealt with in a timely manner.

Overpayments are clawed back through lower benefits and deductions from earnings, and the NAO said that while on average it would take a carer just over three years to clear their debt, those owing £20,000 could be making repayments for the next 34 years.

The NAO’s investigation followed the Guardian’s revelation that a growing number of carers were facing fines and prosecutions as DWP sought to claw back overpayments.

Emily Holzhausen, director of policy and public affairs at Carers UK, said overpayments had caused a lot of stress.

“It is clear the DWP’s decisions about the handling of carer’s allowance have resulted in carers not being told about overpayments quickly enough and this must be urgently addressed,” she added.

A DWP spokesman said the report recognised the progress it had made in addressing overpayments. “We have introduced new technology to prevent overpayments and improve debt recovery. And we continue to make people fully aware of their responsibility to correctly report earnings and changes of circumstances.

“We have a duty to the taxpayer to recover money in cases of fraud or error but safeguards are in place to ensure deductions are reasonable.”

Field said: “There was already plenty wrong with the way we recognise carers’ invaluable contribution. Rather than making things worse, why doesn’t the department just spare us all: end this massive scandal, focus on the real fraudsters and write off the overpayments it has allowed to build up unchecked.”